What to Expect: Diagnostic Laparoscopy for Endometriosis

After over two years of searching for a diagnosis, I can’t believe I’m sitting down to write this.

When I first started this blog, I was having chronic constipation, losing weight, and couldn’t tolerate many foods (like raw vegetables or dairy products). I saw a gastroenterologist who made me feel like I was crazy for pushing him harder. I had an upper endoscopy and colonoscopy that both came out clear. And, finally, after having my first laparoscopy at Cleveland Clinic cancelled due to COVID-19, I got on the schedule at Newton-Wellesley Hospital in Massachusetts.

This past Tuesday, I crossed the finish line. I had a diagnostic laparoscopy for endometriosis at long last, and it showed evidence of peritoneal endometriosis, and an adhesion on my left uterosacral ligament. My doc also found a pretty decently sized but benign cyst on my fallopian tube. Thankfully, it doesn’t look like my future fertility will be affected.

After seeing everything that was excised from my body, I couldn’t help but feel like it’s no wonder I was having so many symptoms. With all this tissue hanging around in my abdomen when it wasn’t supposed to be there, the constipation and pelvic pain make so much more sense.

Yet it still took me over two years from the start of my journey, and over ten years from the onset of my symptoms, to get a definitive diagnosis of endometriosis. The word didn’t even come up until a year into my constipation and painful bowel movements. No GI doctor I saw ever thought to ask me if I had painful periods. That simple question could have changed everything for me.

As frustrating as this journey has been, it makes me grateful — and emotional — to have arrived at this point. I have been through so much that I know I deserve the validation and clarity that came from this procedure. Hopefully, in the future, womxn won’t need to go through nearly as much as I have in order to get the validation and clarity that they deserve.

Sentimentality and reflection aside, you’re probably here because you want to know about the process of getting here: the laparoscopy, to be exact. Maybe you or someone you love thinks they have endometriosis and are worried about what they’ll need to go through to have it diagnosed. Or, maybe your lap is coming up and you’re getting ready to prepare for surgery. Either way, I’m here for you.

Here’s what to expect on the day of your laparoscopy, and the things that have helped me through the recovery process thus far.

The Day of Your Laparoscopy

On the day of my diagnostic laparoscopy, I was ushered into the pre-operative room basically as soon as I arrived. They called me to make sure I was here (I was waiting in the car because of COVID) and had my partner drop me off at the surgical center entrance. Then, they led me to check in, screened me for COVID, and brought me up to the pre-operative room.

Once in the pre-operative room, I was assigned a nurse and told to change into a hospital gown, leaving it open in the back. They gave me the opportunity to use the restroom before leading me back to get an IV line inserted. One thing I remember thinking was strange was that every person I met made sure to ask me what my name was and what procedure I was having. I think this is their way of ensuring that you’ve given informed consent — that you’ve not only said yes to the procedure, but that you also understand what it entails.

After the IV was inserted, I met with the anaesthesiologist as well as my surgeon. Both gave me a lot of reassurance about the procedure. Having great docs and nurses made a huge difference in my comfort and anxiety levels. I also met with the fellow who was working with my surgeon and a PA student observing the surgery.

While my surgeon mostly just wanted to check in, the anaesthesiologist asked me a lot of questions about my health history to make sure I was safe for surgery. For example, I have TMJ (an inflammatory jaw condition), so she had to adapt my intubation plan to accommodate my jaw problems.

At that point, the anaesthesiologist knocked me out. She checked my name and hospital bracelet one more time before giving me the analgesic medication. I honestly barely remember what happened. One minute, she was asking me a question and I was talking about something; the next, I was out cold and waking up in my room post-op.

When I woke up from the laparoscopy, I was given IV Tylenol, so my pain levels were not as bad as I expected. The first thing I noticed was that I was wearing a pad, which I hadn’t been wearing before. It wasn’t a surprise — that’s because they also changed my IUD during the procedure, and I had been warned to expect some bleeding — but I definitely felt it, especially since I haven’t had a period in over a year thanks to my menstrual suppressants.

My tummy felt bloated, sore, and crampy, kind of like mild period cramps, but the pain was bearable. I did have trouble sitting up on my own and needed help from the nurse. Bending at the waist in any way was the most painful type of motion. As long as I was still, I didn’t feel much pain at all, besides a bit of bloating and cramping. The worst pain was actually in my throat from the intubation. I could tell the roof of my mouth had been scraped a bit during the procedure.

I stayed in the post-op area about an hour. Somewhere along the way, I started to feel nauseous. I was given two types of nausea medication through my IV, about half an hour apart, and quickly started to feel better. I did have an episode of dry-heaving, but besides that, I didn’t have any negative side effects from the anaesthesia.

Eventually, I was able to leave the post-op area to go to the day surgical unit, where they would start to transition me toward leaving. This is a wing of the hospital reserved for people like me recovering from outpatient procedures, who are getting ready to go home soon.

Before they let you leave, the nurses have a series of steps they walk you through. They want you to eat something — usually toast or crackers. They want you to get up and walk around (which, after laying down for so long, feels like going from a cruise ship to dry land). And they want you to try to pee. Sometimes, they might even require you to pee before you’re allowed to leave so they can ensure your normal bladder function has returned, but this wasn’t the case for me.

Once I’d been through all of this and was feeling well enough to leave, the nurse allowed me to dress myself using a chair. She gathered my belongings and I was wheeled to the car in a wheelchair. Finally, I was allowed to go home! And by that point, believe me: I couldn’t wait to be in my warm, cozy bed 🙂

Tips for Recovering from Your Laparoscopy

My doctor did her best to prepare me for what to expect after my laparoscopy, but what helped me most was hearing about other people’s experiences recovering from theirs. Here’s what my recovery process has been like so far and what you can expect in the days following your laparoscopy.

Pain

I don’t know about you, but I was terrified of the amount of pain I would feel after my surgery. For me, the pain was worst the day after my surgery. On the day of my surgery, I still had a lot of drugs in my system from the hospital, including the anaesthesia, so I didn’t feel as sore as I did waking up the next morning. After that, the recovery process got much easier and less painful. For me, the pain has been worse the more I move around and better with rest, though it’s still important to get up and walk as much as you are able.

The pain was most annoying when I needed to sleep because it was hard to find a comfortable position. That made it especially difficult to fall asleep the first night, which ended up being the only time I took an opioid. Remember that your doctor prescribes pain medication for a reason. Opioids have a high potential for abuse, but you’re not abusing them by taking them after surgery. Don’t force yourself to suffer through the pain. However, your doctor will probably want you to take NSAIDs and Tylenol around the clock, too, to minimize the amount of opioids you use. This is because opioids can cause severe constipation — which I’ll talk more about in the next section.

Constipation

My doctor prepared me to experience constipation after my surgery, but I didn’t understand how severe it would be. Apparently, it’s normal not to have a bowel movement for up to four to five days following abdominal surgery. This is because of the combined effects of opioids on your digestive system and the fact that your digestive organs were manipulated during surgery. Your digestion slows to accommodate the surgery and healing process, and it can take some time to speed back up again. Plus, many people feel nauseous from the anaesthesia in the days following surgery and may follow a low-fiber diet that can contribute to constipation.

My doctor started me on a stool softener in the days before my surgery, then told me to increase to two or three a day afterwards. When that wasn’t working, I started taking a dose of Milk of Magnesia each day, divided into two daily doses, until I had a bowel movement. At first, the Milk of Magnesia wasn’t working, so I tried some other dietary and lifestyle changes. Here are my tips for keeping post-surgical constipation at bay:

  • Prunes. They sound gross and probably remind you of the elderly, but they are actually sweet like dates — and well-known for helping you move your bowels.
  • Coffee. You might not be ready to tolerate this for the first few days after surgery. Once you can, however, it can stimulate your bowels to move.
  • Walking. Your doctor will probably tell you to walk as much as you are able to move the gas from the procedure out of your body, but it can also help get your digestive system going again.
  • Fluids. You may not feel like drinking a lot of water or liquids if you are feeling nauseous, but it’s important to stay hydrated. Stool softeners and many other laxatives won’t work properly if you’re not drinking the right amount of liquid.
  • Diet. As soon as possible, try to get back to eating your normal diet. Sudden dietary changes can mess up your digestive system.

Nausea

You might feel nauseous for the first few days after the procedure as the residual effects of the anaesthesia wear off. I only had one or two short bouts of nausea that were relieved with Zofran (a medication prescribed by my doctor for migraines — I had extra so I took it during my surgery recovery). Your doctor might be able to prescribe this or another anti-nausea medication if you’re struggling. There are also things you can do at home to help.

If you’re feeling sick, my mom always swore by the BRAT diet growing up: that’s bananas, rice, applesauce, and toast. These foods are easy to digest. I would also add in plain crackers like saltines or water crackers. As long as they have no flavor, crackers are a great way to settle your stomach when you’re feeling nauseous. Sometimes, I also find it settles my stomach to suck on something sweet when I’m nauseous. Hard candies or lollipops might make you feel better, especially if they have stomaach-soothing ingredients like ginger or peppermint.

Fatigue

One of the most surprising things about my recovery was how easily I tired doing ordinary things. In the first two days after my surgery, I napped on-and-off for over six hours, in addition to my regular eight hours of sleep. Things like going for a walk with my boyfriend to get the mail or riding in the car to Starbucks for a tea would drain me for hours afterwards. Now that I’m later into my recovery, this doesn’t bother me as much. I can make it through the day without a nap, but I still hit an afternoon slump.

Now that my stomach is feeling better and I’m back to eating normal foods, drinking coffee or tea gives me a little bit of a caffeine boost when I’m feeling fatigued. Most of all, though, I would say to try and embrace it. Don’t try to fight through fatigue. Sleep is when your body heals, so it’s important to nap when you feel like you need to nap. You don’t have any obligations, so you might as well — that’s why you took time off work, after all!

Do You Need to Avoid Foods with Endometriosis? + Updated What I Eat in a Day with No Restrictions

While Heal with Haley has taken on new life in my endometriosis and creative journeys, my roots on this blog are in eating disorder recovery. If you read my recent blog post, you know that I recently suffered an orthorexia relapse triggered by my endo diagnosis. That brings me to the topic of this blog post…. do you really need to restrict what you eat with endometriosis?

Of course, my answer — as someone in E.D. recovery — is that you should never need to restrict what you eat. But, I also understand that when you have endometriosis, like I do, and are experiencing chronic pain, you’re willing to do anything to feel better, including give up your favorite foods.

People who follow a strict endo diet often quote evidence showing that foods like gluten and dairy are inflammatory, and inflammation plays a big part in endometriosis. Even so, there’s little evidence to show, specifically, that avoiding certain foods improves endo symptoms.

So, what’s the deal? Should you really be avoiding gluten and dairy, like I once did, on the endo diet? Here’s what you need to know about food restrictions and endometriosis.

Do I Need to Avoid Gluten and Dairy with Endometriosis?

If you have endometriosis, you’ve likely heard of the “endo diet.” As far as I’m able to tell, the endo diet is not a legitimate medical intervention. Instead, it seems to be based on this book, The 4-Week Endometriosis Diet Plan, by Katie Edmonds, NTC.

Katie runs a blog called Heal Endo and sells coaching for womxn with endo (her list is currently full). But the problem I have with the endo diet isn’t with Katie herself. It’s with large groups of womxn following nutrition recommendations by someone without real credentials.

NTC is, technically, a “credential,” but it stands for Nutritional Therapy Consultant. The credential is overseen by the Nutritional Therapy Association. There are no prerequsites (i.e. no need for an undergraduate degree in the sciences). Anyone can sign up for $4,000, and anyone can earn the credential with an 80% on the exam. You can actually access a sample reading list and get access to everything they learn in the program for free.

I’m not here to rip on individuals who get the NTC certification, but I am here to call out the fact that “nutritional therapy” is rooted in pseudoscience. This becomes problematic when it sends a ripple of orthorexia through the endo community. The idea of the “endo diet” has sparked a harmful (in my opinion) belief within the endo community that gluten and dairy should be considered off-limits. In reality, the relationship between endometriosis and diet is much more complicated, and cannot be boiled down to a single “endo diet.”

Most studies investigating food and endo (like this one and this one) produced results that were either inconclusive or could not be replicated. But there are a few things the research has taught us. In many cases, it doesn’t back up the extreme restriction supported by the endo diet. Here are some sample studies and the conclusions they drew about endometriosis and food:

  • Hansen and Knudsen (2013) evaluated 12 studies examining a total of 74,708 women. They found that consuming fewer trans fats and more omega-3 fatty acids lowered the risk of developing endometriosis.
  • Parazzini et. al. (2013) conducted a meta-analysis of 11 studies. They found that while women with endometriosis appear to consume less omega-3 fatty acids and vegetables, and more red meat, coffee, and trans fats, these findings could not be consistently replicated.
  • Trabert et. al. (2010) studied 660 women between the ages of 18 and 49 with newly diagnosed endo. They found that increased total fat consumption was associated with decreased endometriosis risk. While not statistically significant, the study results also suggested that consuming dairy actually decreased the risk of developing endometriosis.
  • Parazzini et. al. (2004) studied 504 women with laparoscopically-confirmed endometriosis. They found that a higher intake of fresh fruits and leafy greens, and a lower intake of red meat, reduced the risk of endometriosis. They did NOT find a statistically significant link between consuming dairy, coffee, fish, raw carrots (commonly touted as an estrogen-absorbing food), or whole grains and developing (or not developing) endometriosis.
  • Marziali et. al. (2012) found, in a study of 207 patients with chronic pelvic pain, that 75% reported reduced pain, better mental health, and increased functioning on a gluten-free diet.
  • Marziali and Capozzolo (2015) found in another study of 300 women with a definitive diagnosis of deep infilitrating endometriosis (DIE) that a majority reported improved pelvic pain on a gluten-free diet.

In short, we have evidence to show that fresh fruits and veggies, and omega-3 fatty acids, can prevent endometriosis, and that trans fats and red meat can increase your risk. We also have limited evidence to show that some womxn with endo may be gluten-intolerant, but we do NOT have any evidence to show that you shouldn’t eat dairy, nightshades, or any other category of “inflammatory” foods. And, we know from other studies that consuming gluten-free products when you aren’t gluten-intolerant or celiac can actually harm your nutritional health.

As someone who’s fallen for pseudoscience in the past, I’m not here to shame you. I get it: the temptation to do anything, try anything, that might relieve your pain can be overwhelming. And there is some truth to the idea that science can’t tell us everything. But if you’re going to undertake a restrictive diet for endometriosis, you should understand that the risk to your mental health when you fall for diet culture is as important as how well you feel physically without certain foods. To boil it down to one sentence, the “endo diet” is not evidence-based medicine, and may actually put you at risk for disordered eating.

So, if the endo diet isn’t supported by research, then whose advice should you trust? My advice is to find an endometriosis specialist (an M.D. or D.O.) and/or registered dietician (R.D.) YOU trust. Speak to them first before making any dietary or lifestyle changes, but also don’t be afraid to trust your gut. If you feel better on a gluten-free or dairy-free diet, go for it. But, if you’re considering cutting foods out of your diet for endometriosis, consider the effect on your mental health as well as your physical wellness when evaluating whether it’s worth it.

What I Eat in a Day (with ZERO Restrictions)

Now that we know how I feel about the endo diet — what, exactly, do I eat for my endometriosis? In short, I try to follow an overall healthy diet. To me, that means ZERO restrictions, because mental health is just as important as physical health!

Right now, I’m focusing on low-fat foods at the recommendation of my doctor, due to some liver test results I received at my annual physical, but I view that as a lifestyle change rather than a true “restriction.” I still drink half-and-half in my coffee and eat a buttery chocolate croissant from my favorite bakery once or twice a week.

While I’m still lactose intolerant and have non-celiac gluten sensitivity (NCGS), I’ve loosened my restrictions around gluten. I now include small portions of my favorite foods, like Goldfish, that I can tolerate (hot tip: sprouted grain bread and sourdough are easier to digest!), and take Lactaid whenever I want to eat dairy products.

As for my vegetarianism, I regretfully have given it up. I say regretfully because I truly undertook it for ethical reasons. However, I made the conscious choice to begin eating meat again when I realized how stressful meal-planning had become for me. As someone in eating disorder recovery, I feel that food should be easy, and finding new vegetarian recipes that sounded good to me was becoming a chore.

If you’re looking for ideas for healthy meals you can eat on an “endo diet” without restrictions (and without stress), then keep reading to check out some examples of what I eat in a day:

Breakfast

  • Oatmeal with peanut butter and strawberries
  • Smoothie with frozen fruit, peanut butter, and Lactaid milk

Lunch

  • Half a turkey, swiss, lettuce, and mayo sandwich on gluten-free or sprouted-grain bread, with low-sodium vegetable soup, or a whole sandwich by itself
  • Trader Joe’s premade salads: I like the Chinese chicken, spicy broccoli slaw, and edamame and cranberry ones

Dinner

  • One-pan roasted chicken breast, carrots, and potatoes with butter and rosemary
  • Green goddess turkey burgers with a side salad made from lettuce, feta cheese, bell peppers, and cucumbers

Snacks

  • Blue corn chips and Trader Joe’s reduced fat guacamole dip
  • Whole-grain Goldfish crackers
  • KIND bars: I like the cherry chocolate cashew and chocolate cinnamon pecan flavors best
  • Part-skim string cheese
  • Microwave popcorn: the light butter flavor is my favorite
  • Yasso frozen Greek yogurt pops: my favorite is mint chocolate chip

Hypertonic vs. Hypotonic Pelvic Floor Dysfunction: Vaginismus, Pelvic Organ Prolapse, & More

Disclaimer: This blog post contains affiliate links, meaning I may receive a portion of proceeds from any purchases made through my blog. Please note that this does not affect product prices. Thank you for supporting Heal with Haley!

Pelvic floor dysfunction (PFD) isn’t a single diagnosis: it’s a spectrum. PFD ranges from hypertonic (pelvic floor muscles that are too tight) to hypotonic (pelvic floor muscles that are too weak). And within those categories lie subcategories — diagnoses like vaginismus, pelvic organ prolapse, and urinary incontinence — each with their own point along the spectrum.

Unfortunately, many doctors still view PFD as one diagnosis. They prescribe Kegel exercises for incontinence, or “more lube” for sexual pain, then send you on your merry way… only you don’t feel very merry, do you? You feel confused and disappointed, wondering if you will ever find a cure for your pain.

The problem with treating PFD as a single diagnosis is that it overlooks the spectrum of dysfunction that exists within our pelvic floor muscles. Without pinpointing the exact problem, your pelvic floor PT (or whatever provider is treating you) won’t know the right exercises to help you overcome your specific complaints.

Most pelvic floor PTs can determine whether you have hypertonic or hypotonic PFD upon an initial evaluation. My pelvic floor was so tight at my first PT appointment, there was no way my provider could have missed it! Yet the hard work doesn’t end there: it’s also important to understand the spectrum of pain and where your personal experience lies on that spectrum.

The spectrum of pelvic pain encompasses disorders ranging from vaginismus, the tightest pelvic floor possible, to pelvic organ prolapse, the weakest pelvic floor possible. Treatments for pelvic floor conditions vary widely, making it important to get the right diagnosis.

In this blog post, I’ll share my personal experience with hypertonic pelvic floor dysfunction and vaginismus, as well as explore the different types of PFD that often affect people with vaginas, to help you better understand your pain and what you and your providers can do to treat it.

As always, I’d like to warn that I am not a health expert — just a patient. I cannot diagnose or treat you, so please consult with your doctor before making any important decisions about your health!

Types of Pelvic Floor Dysfunction

The pelvic floor is a bowl-shaped group of muscles that supports your reproductive organs, your bladder, your bowel, and more. Problems can occur with any of these organ systems when the pelvic floor muscles are too tight or too weak.

Exercising your pelvic floor after the birth of your baby

Many people wrongfully assume that pelvic floor dysfunction occurs only in women and only affects reproductive organs like the vagina and uterus. In reality, people of all genders deal with PFD, and PFD can affect any organ supported by the pelvic floor muscles.

You probably remember from high school biology that the prefix “hyper-” means too much and the prefix “hypo-” means too little. From that, we can deduce that hypertonic means too much tone and hypotonic means too little tone — muscle tone, that is.

Rather than separate groups of conditions, I like to think of PFD as a spectrum. If hypertonic PFD and hypotonic PFD are the two extreme points on a line, the ideal pelvic floor is the midpoint of that line. Like Goldilocks, you don’t want a pelvic floor that’s too weak or too tight, but “just right!”

Hypertonic Pelvic Floor Dysfunction

Hypertonic pelvic floor dysfunction occurs when your pelvic floor muscles are too tight…. and yes, there is such a thing as your vagina being too tight. As someone with hypertonic PFD, I find it incredibly ironic that straight men have conditioned us to strive for a “tight vagina.” Thanks, porn!

This problem can develop in a number of ways, but it is often a response to chronic pelvic pain (CPP). When our body is in pain, it learns to clench the muscles surrounding the painful area to protect itself. As a result of this chronic clenching, people with CPP can develop hypertonic PFD.

Signs and symptoms of hypertonic PFD can include:

  • Constipation
  • Dyspareunia (painful sex)
  • Chronic pelvic pain
  • Muscle spasms
  • Urinary frequency
  • Trouble starting the stream of urine
  • Straining to empty the bladder

Unsurprisingly, hypertonic PFD is also linked to chronic pain conditions like endometriosis and irritable bowel syndrome. Having one of these conditions does not guarantee you will develop hypertonic PFD, but it does make it more likely.

Treatment for hypertonic pelvic floor dysfunction involves retraining the pelvic floor musles to relax. This can involve pelvic floor physical therapy and, for people with vaginas, dilator therapy. In severe cases, trigger point injections and even surgery can help alleviate the symptoms of hypertonic PFD.

What is vaginismus?

In people with vaginas, hypertonic pelvic floor dysfunction is often used interchangeably with the term “vaginismus.” Vaginismus involves involuntary contractions of the pelvic floor muscles, paired with intense anxiety and pain surrounding penetration, whether with a partner, a speculum, a tampon, or even a finger.

Like all types of PFD, vaginismus is a spectrum, ranging from “true” vaginismus (where the patient can’t insert so much as a Q-tip comfortably) to milder forms, like the one I suffer from. It frequently develops in conjunction with other pain conditions, like vulvodynia and vestibulitis. Sometimes, vaginismus is linked to sexual trauma and shame, making it especially prevalent in religious communities and among survivors of sexual assault.

Hypotonic Pelvic Floor Dysfunction

Hypotonic pelvic floor dysfunction occurs when, you guessed it, the pelvic floor muscles are too weak. This problem can stem from underuse of the pelvic floor muscles, radiation treatment, pelvic surgery, pregnancy, or delivery.

Signs and symptoms of hypotonic PFD can include:

  • Urinary or anal incontinence (“leaking”)
  • Passing gas when bending or lifting
  • Pain or pressure in the pelvis
  • A feeling of something bulging into or falling out of the vagina
  • Decreased sensation during sex

The most serious consequence of hypotonic PFD is a condition known as pelvic organ prolapse. A prolapse occurs when the muscles surrounding the organs are so weak that they can no longer hold the organs in their proper place.

People with pelvic organ prolapse may experience uterine prolapse, where the uterus inverts or comes out through the vaginal opening; vaginal prolapse, where the top of the vagina drops through the vaginal opening; or rectal prolapse, where the rectum bulges into the vagina.

Treatments for Pelvic Floor Dysfunction

Pelvic floor dysfunction is common, affecting one in five people over the course of their lifetime and about a quarter of women. But just because PFD is common does not mean you have to accept it as normal.

Thankfully, pelvic floor disorders are highly treatable. Many cases resolve with minor treatment, like pelvic floor physical therapy and lifestyle changes, while more severe cases may require medications or surgery.

Treatments for Hypertonic Pelvic Floor Dysfunction

Treating hypertonic PFD involves learning to relax and lengthen the pelvic floor muscles. There are a number of ways to accomplish this, both with medical treatment and self-help strategies at home.

Pelvic Floor Physical Therapy

Pelvic floor physical therapy is the most important thing you can do for hypertonic PFD. As my doctor put it, the first, second, and third recommendations for treating hypertonic PFD are physical therapy! Working with a pelvic floor physical therapist, you can learn to actively relax and lengthen your pelvic floor muscles until it becomes second nature. This process of developing greater control over the pelvic floor is known as biofeedback.

Dilator Therapy

Silicone or plastic dilators can help you stretch and relax the pelvic floor muscles. They are graduated in size and used progressively to rehabilitate your pelvic floor. Traditionally, dilator therapy was developed for the treatment of vaginismus. However, dilators can also be used as tools for the myofascial release of tight pelvic floor muscles.

My favorite dilators are made by Soul Source Therapeutics. All of their products are body safe, latex-free, and soft in texture for gentle dilator therapy. I use the Medium Set of silicone dilators. Best of all, you can use my affiliate code ENDOSTRONG to get 15% off your purchase from Soul Source! Click here to shop.

Soul Source Silicone Vaginal Dilators, Medium Set

Trigger Point Injections

Trigger points are areas where the pelvic floor muscles or fascia are especially tight. Trigger point injections can aid in myofascial release of the pelvic floor by getting medication directly into painful areas. Usually, numbing agents like lidocaine are used. Sometimes, Botox can also be injected to treat pelvic floor muscle spasms. These are not a first-line treatment option but may be used for severe cases.

Estrogen Therapy

Diminished hormone reserves may contribute to pelvic floor pain in some people, especially in people who are taking hormonal birth control or who are menopausal. Topical estrogen cream is an effective solution for some of these patients and may relieve symptoms like dyspareunia. Estrogen therapy starts at very low doses to minimize the associated risks, such as endometrial or ovarian cancers. You may be unable to use topical estrogen if you have had an estrogen-related cancer in the past.

Self-Help

Self-help strategies aren’t a replacement for the medical treatment of hypertonic PFD, but they are effective when used in conjunction with other treatment options, such as pelvic floor physical therapy. Some self-help tips for hypertonic PFD include:

  • Building relaxation into your day with activities like yoga, meditation, or even adult coloring
  • Trying some gentle pelvic floor stretches one to two times per day
  • Modifying your core workouts to avoid sit-ups and crunches
  • Using only 100% cotton, bleach- and chlorine-free menstrual products (or a soft menstrual cup)
  • Cutting out irritants by wearing only 100% cotton underwear and only washing the vulva with fragrance-free soap
  • Avoiding urinary continence, or holding in your pee; instead, try to go before the need to pee becomes urgent
  • Applying an ice pack wrapped in a washcloth or towel to the vulva to relieve pain after sex — or Honey Pot Co.’s cooling Lavender Vulva Cream with mint and coconut oil

Treatments for Hypotonic Pelvic Floor Dysfunction

Treatment for hypotonic PFD involves strengthening the weak pelvic floor muscles through exercise and physical therapy. Occasionally, more invasive treatment — such as surgery — is required.

Pelvic Floor Physical Therapy

Again, pelvic floor physical therapy is the most important step you can take to strengthen your pelvic floor. Many people who suffer from hypotonic pelvic floor dysfunction don’t even know how to locate the pelvic floor muscles. During treatment, a pelvic floor physical therapist will walk you through contracting and relaxing your pelvic floor muscles in an exercise known as Kegels. If you are not sure if you have hypotonic PFD, you should not start doing Kegels without first seeing a physical therapist, as you could have another type of PFD. Kegels can actually make hypertonic PFD worse.

Catheterization

Urinary incontinence — or involuntarily leaking urine when you cough, laugh, sneeze, or exercise — is a common sign of hypotonic PFD. Sometimes, doctors recommend a urinary catheter for the treatment of urinary incontinence, especially in older adults. Catheters are devices that help collect urine without you needing to go to the bathroom to pee. Foley catheters can be used for up to two years and are inserted into the urethra. For long-term treatment longer than two years, doctors use indwelling subrapubic catheters, which are surgically inserted into an incision in the pelvis. Catheters aren’t the first line treatment for hypotonic PFD because they come with a high risk of infection, but they are an option for severe cases of urinary incontinence.

Pessaries

A pessary is a supportive device inserted non-surgically into the vagina to support the pelvic organs. It is used to treat pelvic organ prolapse. Some pessaries can be removed and reinserted at home, while others must be placed by a doctor. If your pessary needs to be inserted and removed by a doctor, you will need to have it replaced at least every three months to prevent infection.

Surgery

Surgery may be necessary if you are experiencing pelvic organ prolapse, especially in the rectum. A specific condition known as a rectocele can form when the rectum bulges into the vagina due to prolapse. Rectoceles often require surgical repair. The two types of surgery for pelvic organ prolapse are obliterative and reconstructive surgery. Obliterative surgery narrows the vagina to provide support for pelvic organs; however, penetrative intercourse is no longer possible after this procedure. Reconstructive surgery is an alternative that aims to restore the organs to their original position. Like endometriosis surgery, it can be done laparoscopically.

Self-Help

You can’t replace medical treatment for hypotonic pelvic floor dysfunction with self-help strategies, but they can improve your quality of life with PFD. Some self-help tips for hypotonic PFD include:

  • Practicing biofeedback using a smart device like the Elvie Trainer
  • Performing Kegels when you sneeze, cough, or laugh to help hold in urine
  • Trying Pilates or yoga to strengthen the pelvic floor
  • Modifying your core workouts to avoid sit-ups and crunches
  • Avoiding dietary triggers like alcohol, artificial sweeteners, caffeine, and carbonated beverages
  • Training yourself to pee on a schedule, gradually increasing the amount of time between urination
  • Wearing pee-proof panties to collect urinary leakage throughout the day

More Resources

Vaginal Dilator Exercises for Psychosexual Therapy

Oxford University Hospitals

Pelvic Floor Exercises with Breathing

Dr. Beth Shelly, PT, DPT

Easy Stretches to Relax the Pelvic Floor

VuVa Tech

Dilating is Doable Series

The Vaginismus Network Blog

Self-Help Tips

National Vulvodynia Association

Effective Kegel Exercises: A Full Workout Plan for Beginners

Ruby Cup

How to Do Pelvic Floor Exercises

Always Discreet

Finding Bladder-Friendly Foods

Interstitial Cystitis Network

Heal Pelvic Pain (Book)

Amy Stein, DPT

Sex Without Pain (Book)

Heather Jeffcoat, DPT

*Use my affiliate code ENDOSTRONG for 15% off your purchase at Soul Source!

Ohnut

A set of four protective, stackable rings worn around the base of the penis to limit the depth of penetration for people with vaginas who experience deep dyspareunia.

*Use my affiliate code ENDOSTRONG for 15% off your purchase at Soul Source!

Wild Flower Sex Shop

A sexual wellness boutique for people of all genders. I include this link because Wildflower sells flexible dildos that are a great “next step” after completing dilator therapy for vaginismus.

The Genetics of Endometriosis

Disclaimer: While I am always careful to use reputable, peer-reviewed sources in my writing, I am not a doctor. You should neither take medical advice from me nor from a commercial DNA test. 23andme can tell you with 99% accuracy about the genes it tests for, but it does not test for nearly all of the millions of polymorphisms (a.k.a. variants in your DNA) that make us human beings unique individuals. Always have your 23andme results validated by a genetic counselor before making any medical decisions that could affect your long-term health.

I have always been fascinated by genes, ever since we did those Punnett Squares in the seventh grade (if you know, you know). If I were better at math and science, I would consider a career as a geneticist in a heartbeat.

Unfortunately, that is not my calling in life — but educating people about endometriosis is! So, I thought, why not nerd out about the genetics of endometriosis? For, y’know, educational purposes.

Back in college, David and I took the 23andme DNA test just for fun. (Out of nowhere, I found out I am 20% Greek, which explains my affinity for Mediterranean food.) When you take the 23andme DNA test, you can download your raw DNA file and upload it to all kinds of websites for analysis.

Because I’m a hypochondriac, that’s exactly what I did. But, in my defense, David did it first.

In fact, that DNA test was a big part of what sparked my journey into the medical system. I had been having bowel issues for awhile by then, and found out I was genetically susceptible to Inflammatory Bowel Disease (IBD). The rest, as they say, is history….though that colonoscopy prep still haunts me to this very day.

Every once in awhile, when I get bored, I’ll open my genome in Promethease and start scrolling through just for fun. Do you do that, too, or are you normal?

Out of curiosity, it occurred to me to check and see if I had any genes linked with endometriosis, the one disease I know that I most likely have. After that quick search, I wound up doing a lot of digging…much, much more than I anticipated.

As much as I know I should probably be studying for the GRE right now (I’m taking it in less than a week!), I figured I’d share some of what I learned about the genetics of endometriosis — and my own DNA — with you all.

How Do You Inherit Endometriosis?

Doctors have known for a long time that there is a genetic component to endometriosis. Without looking at specific genes, we know that endometriosis tends to run in families.

But how does endometriosis work for those of us who don’t have a history of endo in our families? If this is you, I’m in the same boat. No one in my family ever had the excruciatingly painful periods that I do — or, if they did, they never complained about it.

That’s where a little thing called gene expression comes into play. This is where genetics starts to get a little complicated, so bear with me!

You see, our genes are only half the battle when it comes to whether or not we develop a disease. Our genetics can increase our risk, but often, they must interact with our environment in a specific way before the disease actually develops.

In short, endometriosis has a genetic component, but it is also deeply linked to our environment. Anything from toxic chemicals in our surroundings to psychological stress can trigger a pathogenic gene response. These genes can also be “turned on” by specific sequences of noncoding DNA, located between pairs of genes.

If you have endometriosis but no one in your family does, it’s likely that they carry the same genetic mutations responsible for the disease — but, unlike yours, their environment did not trigger the development of the disease, or they do not carry the right sequence of noncoding DNA to activate the gene’s expression.

Genes Linked to Endometriosis

The most important thing to understand about endometriosis is that it is a polygenetic disease. That little word tells you a lot about the origins of endo: poly means multiple and genetic means, well, genes — in other words, endometriosis is influenced by more than one gene.

Unlike some other diseases, which are directly caused by mutations in a specific gene or chromosome, you don’t simply inherit one causative “endometriosis gene.” Instead, there is a complex interplay of all the polymorphisms (or genetic variants) present in your DNA that contributes to your endometriosis risk.

What Are Single Nucleotide Polymorphisms (SNPs)?

The genetic variants that contribute to the development of endometriosis are just tiny fragments of your overall genome. Over 99% of the human genome is identical in all human beings. Polymorphisms, those places where your genes vary from person to person, account for about 0.001% of human DNA.

You probably remember from your high school biology class that humans have 23 pairs of chromosomes, tightly-wound segments of DNA that encode everything from your eye color to the consistency of your earwax. Your genes are located on those chromosomes, where they’re made up of different pairs of amino acids that bond with one another. These bonds code for most of the variations in human DNA.

Variations arise from the different nucleotides — represented by A, C, G, and T — or building blocks that can pair with one another at that specific location. The “address” of that location is called a locus (plural: loci), and identifies the specific area of a gene that codes for a particular trait or disease risk. A lot of genetic research focuses on identifying the loci associated with different health conditions. Researchers do this by pinpointing the specific polymorphisms that are frequently shared by people with a disease at those loci.

Single nucleotide polymorphisms (SNPs) — pronounced “snips” — are the most common variations in human DNA, and represent a place where two people may have different nucleotides at the same locus due to genetic mutations passed down through human DNA. Many SNPs are shared by people whose ancestors originate from the same place. Geneticists have found over 100 million unique SNPs in populations across the world.

Genetic research related to endometriosis identifies SNPs that may be responsible for the development of endometriosis in some people, but not others. Where there is an SNP, there are typically three different combinations of nucleotides, or genotypes, possible for a human being. For example, if the possible nucleotides at that locus are C and T, a person can have the genotype C,C; the genotype C,T; or the genotype T,T.

What is a Risk Allele?

In genetics, each of the possible nucleotides at an SNP is referred to as an allele. The “risk allele” is the nucleotide linked to the development of a disease or trait. For example, say the above SNP codes for an increased risk of developing endometriosis. If T is the risk allele, then C,C is the “normal” genotype that does not increase endometriosis risk. Someone with the genotype C,T may or may not have an increased risk of developing endo, while someone with the genotype T,T would definitely have an increased risk of developing endo.

Whether or not you can inherit a trait or condition from a heterogenous genotype — meaning you carry one “normal” allele and one risk allele — depends on whether the trait is dominant or recessive. You probably remember learning about dominant and recessive genes in middle school, but here’s a refresher: if a trait is dominant, you only need one risk allele to develop it. If it is recessive, you need two.

Someone who carries one risk allele of a recessive trait is considered a carrier, meaning you cannot develop the condition yourself but may pass it down to your children. In order to pass a recessive trait onto your child, both parents must be carriers of at least one recessive trait, and the child must inherit two risk alleles to develop the condition.

Along with the complicated dynamics of gene expression, recessive patterns of inheritance are another reason why you might develop endo, even if no one else in your family has it. If you’re the first in your family with endometriosis, it might mean that your other family members are carriers of one or more risk alleles linked to the disease. Because you inherited two risk alleles instead of just one, you developed the recessive trait predisposing you to endo, while your other family members did not.

SNPs and Risk Alleles Associated with Endometriosis

The genetic differences across the human population arising from SNPs are small but mighty, and play an important role in who develops endometriosis (and who does not).

As an endo warrior, you don’t need me to tell you that research for our condition is drastically underfunded and underperformed. For a disease affecting 1 in 10 women, we know surprisingly little about the genetics of endometriosis. However, some recent studies have scraped the surface of identifying the reasons why some people develop endo while others do not.

By far the most influential genetic study of endometriosis was the 2012 study “Genome-wide association meta-analysis identifies new endometriosis risk loci,” published in the journal Nature Genetics. This study used a sample size of over 4,500 Japanese and European endometriosis patients to identify seven loci strongly linked to endometriosis. This study replicated the results of previous genetic research linking two of the loci to endometriosis and identified five novel loci that had not previously been identified.

The “endo genes” identified in this study are:

  • rs7521902 (risk allele A). This SNP is located on chromosome 1, on a gene called LOC105376850. Little is known about the gene beyond its well-established link to endometriosis, so it’s unclear why this SNP increases the risk of endo.
  • rs13394619 (risk allele G). This SNP is located on chromosome 2, on a gene caled GREB1. GREB1 plays an important role in coding for the proteins that bind to estrogen receptors. As a result, it plays an important role in the growth of endometriosis, as well as estrogen-dependent breast and prostate cancers.
  • rs4141819 (risk allele C). This SNP is located on chromosome 2, on a gene called LOC105374786. This SNP is linked, in particular, with Stage III and IV endometriosis involving the ovaries.
  • rs7739264 (risk allele T). This SNP is located on chromosome 6, on a gene called LOC100506885. Little is known about the gene beyond its link to endometriosis, so it’s unclear why this SNP increases the risk of endo.
  • rs12700667 (risk allele A). This SNP is located on chromosome 7, on an inter-genic region. A previous Australian study linked it with moderate-to-severe endometriosis. The Nature Genetics study linked it with endo in general, as did a 2013 replication study.
  • rs1537377 (risk allele C). This SNP is located on chromosome 9. The results of the Nature Genetics study were replicated in a 2015 study that confirmed the genome-wide significance of the SNP in conferring endometriosis risk.
  • rs10859871 (risk allele C). This SNP is located on chromosome 12, near a gene called VEZT. VEZT is a gene that encodes for a specific protein involved in the joining of cells at the membrane, which makes sense given that endometriosis is a proliferative process. This particular SNP is widely accepted as the SNP with the strongest link to endometriosis, and the results of the Nature Genetics study have been replicated many times. The A,C genotype is associated with a 1.2x higher risk of endometriosis, and the C,C genotype is associated with a 1.4x higher risk of endometriosis.

Since then, much of the research has focused on confirming the results of this genome-wide meta-anaysis, rather than identifying novel susceptibility loci for endometriosis. However, in 2017, 23andme published a study of results collected from its customers that found five new loci associated with the development of endometriosis.

The “endo genes” 23andme identified were:

  • rs1250241 (risk allele T). This SNP is located on chromosome 2, on a gene called FN1. FN1 codes for a protein called fibronectin, which is involved in cell adhesion. Certain types of fibronectin also prevent tumor growth and metastasis. This link makes sense since endometriosis is a proliferative process, and it has been surmised that genes regulating tumor growth may be defective in patients with endo.
  • rs1971256 (risk allele C). This SNP is located on chromosome 6, on an inter-genic region involving the genes RMND1 and CCDC170. RMND1 plays a role in translating messenger RNA (mRNA) into the proteins of the mitochondrial ribosome, while CCDC170 is a relatively mysterious protein-encoding gene that has been linked to breast cancer in addition to endo.
  • rs71575922 (risk allele G). This SNP is located on chromosome 6, on a gene called SYNE1. SYNE1 codes for a protein expressed in the skeletal and smooth muscle. This protein plays an especially important role in the brain, making its link to endo particularly interesting. It’s also worth noting that another 23andme study found a strong link between this gene and the development of uterine fibroids.
  • rs74491657 (risk allele G). This SNP is located on chromosome 7, on an inter-genetic band of the chromosome called 7p12. Notably, 7p12 contains the gene EGFR. EGFR stands for epidermal growth factor receptor, the protein it encodes for. EGFR activates the processes of cell growth and division, making it a logical link to endometriosis.
  • rs74485684 (risk allele T). This SNP is located on chromosome 11, near a gene called FSHB. FSHB codes for a component of follicle stimulating hormone (FSH), which plays an important role in regulating the menstrual cycle and reproductive organs. Appropriately, this SNP has also been linked to heavy menstrual flow.

What’s My Genotype?

The only definitive way to figure out your genotype is to have testing performed by a genetic counselor — but since these SNPs are correlational, not causational, for endometriosis, most doctors probably won’t suggest genetic counseling for endo.

If you are curious about your genetic risk for endometriosis, you can always take a direct-to-consumer DNA test like 23andme or Ancestry DNA. Personally, I took 23andme’s Ancestry test and skipped the Health test because it was so expensive. Instead, I downloaded the raw DNA file from 23andme and uploaded it to Promethease.

Promethease is a literature retrieval service — meaning that it won’t interpret your DNA or put you in touch with genetic counseling, but it will show you the conditions your DNA is linked to and studies that support those links. You pay $12 one time and receive lifelong access to your report, which I think is worth it.

Once you’re in Promethease, you can use the search function to type in the endometriosis SNPs above. Then, you’ll want to look at your genotype to see if you have a risk allele for endometriosis. Let me show you an example from my DNA report:

As you can see, I searched for rs10859871, the SNP most closely linked to endometriosis risk. My genotype is A,C. The risk allele is C, so my risk of endometriosis is 1.2x higher than average. However, combined with other genes that increase my risk, my overall risk of endometriosis may be much higher than this. That’s why it’s important to review more than one SNP to get a clear picture of your endo risk.

When using Promethease, I recommend completely disregarding the additional information, such as the “repute” of the gene or the SNP wiki entry it generates. Because anyone can edit the SNP wiki, it can contain a lot of misleading information — such as the retrograde menstruation theory you see above, which has since been disproven! Instead, I recommend you click on “more info” and carefully review the supporting studies linked in the wiki entry for the most accurate scientific information.

By reviewing my raw DNA, I found out that I have six genetic risk factors for endometriosis, not including the new ones discovered by 23andme. While it’s important to keep in mind that consumer DNA tests like 23andme are flawed, and that having these genes doesn’t guarantee you have endo, I think it’s incredibly fascinating to see how something as intangible as our DNA so strongly influences our reality.

How My Chronic Illness Led to an Eating Disorder Relapse

To be honest, I don’t even know how to begin this post. I’m embarrassed, I’m ashamed, and I’m deeply saddened that I’m writing it at all. That’s why I’ve been so silent on this blog (that, and I’m studying for the GRE). But while I wish that I could pretend that this never happened, I know that maintaining a facade of perfection isn’t helpful to me, nor is it helpful to anyone else who might be struggling with the same thoughts or feelings that I am.

So, here it goes: I’m currently recovering from an eating disorder relapse. And while I recognize that recovery is not linear, and relapses are a part of life, it’s hard not to feel embarrassed when my eating disorder recovery, and using diet to manage my chronic illness symptoms, has been such an important part of my online presence.

I think it started with this blog post (TW: weight loss): Can You Lose Weight in Eating Disorder Recovery? I stand by my answer, because I am an advocate for body neutrality and body autonomy. If you want to change your body, you should be able to — but you should do it out of love, not hatred, for your body. Yet you should never, EVER try to lose weight when you are still in the throngs of an eating disorder.

The critical mistake I made when I went on my own “weight loss journey” was believing that I was “fully recovered” from my eating disorder. I recognize now that I existed in a state of partial recovery. I stopped actively dieting and obsessively exercising, and I was no longer borderline-underweight — but that didn’t mean that I had overcome the demons responsible for my eating disorder.

That state of partial recovery was what made it possible for me to relapse in my eating disorder recovery. Even though I now weigh over 20 lbs more than I did in my orthorexia/EDNOS days, I believe that I am still, in many ways, back where I started.

Why I Relapsed

Ever since I was misdiagnosed with IBS in 2018, I have been on some form of a “diet,” masquerading as self-righteous concern for my chronic illness symptoms. Once I found out I likely had endometriosis, not IBS, I was relieved to give up the low-FODMAP diet and eat whatever I wanted again. But as soon as I gave myself permission to eat whatever I wanted again, my doctor made a simple suggestion that I try going gluten-free for my endo.

That plunged me into a world of shoddy research and iffy recommendations from people without medical or nutritional certifications, telling me that I shouldn’t eat X, Y, or Z because it would promote inflammation. I don’t blame my doctor for it, especially because I don’t think she knew about my history of disordered eating, but I do blame myself for taking her suggestion and running away with it. I actively let it derail my recovery, because, in short, I was desperate. I was tired of feeling “sick,” and I thought that going gluten-free and dairy-free would help me do that.

I did feel better, for a little while — but recently, after my second day in a row experiencing extreme hunger, it became clear to me that I had traded one type of “sickness” for another. My restrictive diet helped my endo belly and my constipation, but it was destroying my mind. Now, I know two things for sure about my relationship with food as someone in recovery from chronic illness:

Firstly, chronic illness is a significant stressor. In my dialectical behavior therapy (DBT) intensive outpatient program (IOP) two Januaries ago, we learned about the importance of relapse prevention for mental illness. Part of relapse prevention is recognizing triggers (like stressful situations) that might lead you to relapse. But because my chronic illness was so all-consuming, between doctors’ appointments and late nights spent educating myself on endo, I forgot to slow down long enough to check in with myself and recognize the stress I was feeling. As a result, I underestimated the stress of having a chronic illness in my life. That’s how I failed to anticipate my relapse before it began. All I cared about was feeling better physically. I thought that managing my symptoms would alleviate my stress, but when I turned to diet to help me “recover” from endo, all I did was trade the lack of control I felt about my chronic illness in for a faulty sense of control in the form of restriction.

Secondly, the chronic illness community encourages restrictive dieting. The endo community online is an important part of my life. They are my supports, and I would not trade the friends I have made on Instagram and through this blog for anything. That being said, there are “influencers” in the endo community who gain money and followers from recommending restrictive diet plans (*cough cough THE ENDO DIET cough*). And the thing is, people with endometriosis are more vulnerable to falling prey to these diets than the average person. Why? Because we’re in pain, and we’re desperate. I was willing to do anything — even potentially compromise my eating disorder recovery — to feel less bloated, to have regular bowel movements, and to stop having pelvic pain. So, even though my surgeon back in Cleveland told me there was no scientific evidence that cutting out food groups could relieve endo symptoms, I let those “influencers” convince me that food was the problem…. when the real problem was, and is, the f**cking endometriotic tissue growing in my abdomen!

The Truth About Dieting and Chronic Illness

Now that I’ve learned the truth about diet and chronic illness — that it’s my illness’s fault, and not my diet’s, that I feel this way — I want to shout it from the rooftops so everyone knows it. For now, though, I guess I’ll settle for sharing on this blog 😉

But thanks to the wealth of misinformation about chronic illnesses and their management that’s out there, I’ve also learned a second important truth: diet-related chronic health conditions (DRCHCs) create a perfect storm for disordered eating. In fact, there is a really fascinating study you can check out that goes into this in more depth — but I’ll attempt to summarize the most important parts of it below.

Basically, the study identifies some key factors that make chronic illnesses a breeding ground for disordered eating habits, chronic dieting, and restriction:

  1. The role of weight in chronic illness. Chronic illnesses, and the medications used to treat them, are often associated with rapid fluctuations in weight, including both weight loss and weight gain. Either can be a trigger for disordered eating, in my experience. Weight loss can become addictive, leading you to compulsively pursue more and more of it — yet no matter how much weight you lose, you’re never satisfied. Weight gain, on the other hand, can trigger self-deprecating, fatphobic thoughts that make us feel “less than” for putting on a few pounds. I strongly feel that this contributed to my relapse. In January 2020, I started taking norethindrone acetate (a synthetic form of progesterone) to halt my periods. Little did I know that progesterone was associated with significant weight gain. I had already put on weight as my gut healed from IBS — which was a good thing, considering I was underweight at the time — but as a result, I found it even harder to cope with the extra 10-15 lbs I gained from the progesterone.
  2. The role of food in chronic illness management. “Let food be thy medicine, and medicine be thy food,” is an increasingly popular sentiment in modern medicine — and, as a result, in the chronic illness community. We’ve somehow gotten it into our heads that using medical technology or treatments to manage disease is “bad,” and using so-called natural treatments like dietary restriction or essential oils is “good.” (If you’ve ever had an ED, this type of language probably feels eerily familiar to you.) I feel this is especially prevalent in the reproductive health community, especially when it comes to conditions that primarily affect womxn — like endometriosis and polycystic ovarian syndrome (PCOS). Thanks to dangerous marketing messaging from influencers, womxn are constantly plugged into this diet culture-fueled fantasy that we can “cure” an incurable disease, like endo or PCOS, through diet…as long as we pay a ridiculous fee to be part of some program or protocol, of course. What’s more, some chronic illnesses — like IBS, for example, or celiac disease — require a preoccupation with food as a central part of treatment. When I was on the low FODMAP diet for IBS, I experienced the triggering effects of not being able to eat, well, anything firsthand. I can’t imagine what it would be like if I had something like celiac disease, where exposure to gluten-containing foods would be not only unpleasant but also potentially dangerous. When diet is so intricately tied to chronic illness management, obsession and preoccupation with food necessarily follow.
  3. The role of chronic illness in body image. It’s hard to love your body when your body is a constant source of pain and discomfort. When your body feels like the enemy, it’s nearly impossible to look in the mirror and love what you see. For me, what affected my body image most was my endo belly. Let’s be real here: it’s hard to feel beautiful or sexy when you can’t button your pants! Constipation, diarrhea, and the dreaded “endo belly” are symptoms I’ve faced nearly every day of my adult life. Even when I was underweight, I genuinely believed that my bloated belly was “fat” because it was full of air, full of endo, and severely inflamed. Gastrointestinal disorders or symptoms are a component of so many chronic diseases, yet we don’t normalize the diversity of body shapes that necessarily result from a bloated stomach. In a culture that emphasizes the importance of having a “flat tummy” and “busting belly bloat,” and where influencers like the Kardashians are making millions off promoting diet teas to help us smooth out our stomachs, it’s no wonder that having a disease that causes bloat takes such a toll on self-esteem.

Conclusion

There are so many problems with the way we talk about chronic illness, both in the medical system and within the chronic illness community, that contribute to the prevalence of disordered eating among people with chronic illnesses. For some reason, we’ve become preoccupied with treating people who “heal their bodies naturally” (!!!) with diet, exercise, essential oils, and acupuncture as the “gold standard” in chronic illness management. Unless we’re basically dying (or in so much pain that we wish we were dying), turning to modern medicine is seen as the coward’s way out.

I can’t tell you how many people I’ve spoken to online who have had similar experiences as me: they began a restrictive diet for their chronic illness that either caused an eating disorder relapse (in those of us with a history of ED) or triggered disordered eating behaviors for the first time (in those of us with no history of ED).

At the end of the day, I think so much of the problem has to do with blame. We’re desperate to explain the unexplainable — like why some of us get stuck with chronic illnesses and not others — so we devise these elaborate narratives in our minds to rectify the cognitive dissonance. As a result, both chronic illness patients and society as a whole put too much blame on the individual, as if we somehow “caused” our disease through a combination of weakness, laziness, and lack of willpower.

Thankfully, what I am finally beginning to understand is that the only thing to blame for my endometriosis is, well, the endometriosis growing in my belly. The problem was never food; it was endo. Now that I know that, I honestly feel I am closer than ever to conquering my eating disorder. This time, I’ve decided, I’m going to make a full recovery. I won’t stop halfway. This is going to be the one that sticks.

What is Endo Belly? | How to Reduce Endometriosis Bloating

Trigger warning: I briefly discuss my history of orthorexia, including restrictive eating and rigorous exercise patterns, in the introduction to this post. If this is a difficult subject for you, feel free to skip the intro and jump straight to the good stuff, starting at the first subheader!

My endo belly and I have a complicated relationship.

I first began needing medication for period cramps at age 12, which I now consider to be the age of onset for my endometriosis. By age 13, I noticed for the first time that my belly wasn’t “flat” like my friends’ tummies were. But because I didn’t know I had suspected endo, and didn’t know the difference between being bloated and having belly fat, I thought that the way to get a flat belly was through diet and exercise.

What started off as an innocent attempt to feel more confident in my bathing suit quickly spiraled out of control. As I subscribed to the dogma of fitness influencers on YouTube and Instagram, I became more and more restrictive with what I allowed myself to eat. I forced myself to exercise every night, even on days I took dance class — because I didn’t think that my dance practices “counted” as a workout.

Unsurprisingly, no matter what I did, my belly would not shrink. It took me years to make peace with my body and accept that its shape was out of my control. Even once I discovered intuitive eating and began healing from my eating disorder, however, I didn’t recognize the connection between my belly and bloating until college, when I started having horrible GI symptoms that essentially prevented me from eating most foods. For a few months, my diet subsisted of iced coffee with almond milk, bananas, yogurt, plain sourdough toast, and gluten-free pasta — because that’s all I could stomach at the time. Unintentionally, I lost over 10 pounds in a matter of weeks and became underweight.

The word “bloating” brings up complex emotions for me, as it does for many of us. I agree that it’s normal to get bloated from time to time. The cultural obsession with having a “flat belly” has diet culture written all over it (especially given that biological females carry more belly fat to support a healthy pregnancy, and have organs in the abdominal cavity that biological males do not). Many of us use the phrase “I feel bloated” as a more socially acceptable substitute for saying “I feel fat” these days. I also agree that many people confuse feeling bloated with feeling full, and use bloating as an excuse to restrict their diet and enjoy the addictive feeling of an empty stomach.

As someone with a history of disordered eating, I say all of this without judgment — because I know that most people don’t intend to make others feel bad or to discriminate against fat bodies by making these kinds of statements or by getting caught up in diet culture. I simply cannot talk about bloating without acknowledging that “gut health” has become diet culture’s newest fad. As an ED-recovered endo patient, I feel the need to distinguish between bloating in that context, and bloating in the context of endometriosis.

For endometriosis patients, getting better gut health isn’t code for getting skinny. When you look at pictures of endo belly online, you can see right away that this isn’t the type of bloat the magazines are talking about. Having endometriosis means I have a permanent belly bulge that is hard and painful to the touch, and endo belly — the extra-severe bloating that often accompanies an endo flare — is painful distension of the stomach that at its worst, has made me look nine months pregnant and feel like a balloon about to pop.

In my recovery from orthorexia and my journey toward a confirmed endo diagnosis, managing bloat is no longer about having a flat belly, but about preventing painful endo belly from controlling my life. In this post, I go into greater detail about what endo belly actually means, and how you can combat bloating associated with endometriosis in your everyday life, without offering restrictive diet tips that ask you to cut out entire categories of foods.

What Causes Endo Belly?

Did you know that 90 percent of patients with endometriosis present with gastrointestinal symptoms as their first concern? As someone who was taught that period pain was “normal,” this was certainly true for me. Though my period cramps had been unbearably painful since I was 12, I did not seek medical care until I began experiencing alternating bouts of constipation and diarrhea, near-constant bloating, and nausea that left me unable to eat almost anything.

We know that endometriosis affects our gut health. Unfortunately, endometriosis research is terribly underfunded, meaning we don’t know much about exactly how this disease impacts the gut. However, there have been a couple of important conjectures by researchers in recent years. Hypotheses include irritable bowel syndrome (IBS), small-intestinal bacterial overgrowth (SIBO), increased intestinal permeability (“leaky gut syndrome”), and general gut dysbiosis. I’ll go into greater detail about each of these potential causes of endo belly below:

Irritable Bowel Syndrome (IBS)

What You Need To Know About Irritable Bowel Syndrome (IBS)
Image Source: Health Matters

Irritable bowel syndrome, or IBS, is a functional disorder characterized by bloating, abdominal pain, and changes in gut motility (i.e. constipation or diarrhea). These symptoms are brought on by eating and relieved by having a bowel movement. A 2018 study found that the prevalence of IBS is higher in women with endometriosis than women without endometriosis. The problem with the data is that we don’t know if more people with endo have IBS, or if they are being misdiagnosed with IBS because of the GI symptoms caused by their endo lesions.

IBS is supposed to be a diagnosis of exclusion, meaning that doctors should rule out all other causes before settling on a diagnosis of IBS. In my case, the gastroenterologist I saw ruled out other gut conditions — namely celiac disease and inflammatory bowel disease (IBD) — but did not consider that my symptoms could be caused by my reproductive tract. Many medical professionals agree that the Rome Criteria used to diagnose IBS is arbitrary and that doctors often do not take the time to fully evaluate their patients’ symptoms before assuming they have IBS. Personally, I have found that doctors seem to use IBS as a catchall diagnosis to categorize any patient whose GI symptoms cannot be easily explained.

Unfortunately, because symptoms like bloating, constipation, and diarrhea suggest gut pathology, a primary care doctor will usually send you to a gastroenterologist rather than an OB/GYN for these symptoms. Because gastroenterology is a highly specialized field, they may not consider diagnoses outside their window of expertise. In my experience, no GI doctor has ever asked me a single question about my menstrual periods. I fully believe that adding this simple screening question to GI exams could help more doctors identify patients at risk of bloating due to endometriosis.

Small Intestinal Bacterial Overgrowth (SIBO)

SIBO: How Small Intestinal Bacterial Overgrowth Impacts Your ...
Image Source: Bio-K Plus

Small intestinal bacterial overgrowth, or SIBO, refers to an imbalance of the “good” and “bad” bacteria living in the small intestine. Bodily conditions like prolonged antibiotic use or chronic inflammation (such as that caused by endometriosis) can kill off your “good” bacteria, which help keep the “bad” bacteria in check. As a result, “bad” bacteria proliferate in the small intestine, leading to symptoms like bloating, nausea, and early satiety.

SIBO frequently occurs alongside endometriosis, probably because the chronic inflammation associated with endo creates prime conditions for “bad” bacteria to multiply in the gut. One study diagnosed 40 out of 50 endo patients (whose endo diagnoses were confirmed by laparoscopy) with SIBO. Like endometriosis patients, people with SIBO are often misdiagnosed with IBS by doctors who are unfamiliar with the condition or unwilling to do the proper testing. Some estimates say that as many as half of IBS patients may actually have SIBO — which is problematic, considering that treatments for IBS (such as dietary changes) do not eliminate SIBO.

SIBO is usually treated with antibiotics. However, if the underlying causes of SIBO are not addressed, it is likely that the “bad” bacteria will multiply again, leading to a recurrence of symptoms. In the case of endometriosis, this means that laparoscopic excision surgery is necessary to eliminate as much inflammation due to endo lesions as possible. Additionally, lifestyle changes like adopting an anti-inflammatory diet and taking probiotic supplements can support the growth of healthy bacteria in the gut.

Leaky Gut Syndrome

Intestinal Permeability — Sakura Natural Health
Image Source: Sakura Natural Health

These days, lots of people are talking about increased intestinal permeability, or “leaky gut syndrome.” The walls of the intestines are thin, meaning that they become easily inflamed by conditions like endometriosis. When the intestinal walls inflame, proponents of leaky gut syndrome believe that food particles are able to pass through the gut into the bloodstream. There, these particles are attacked by the immune system as if they were foreign bodies, leading to widespread inflammation.

The “diagnosis” of leaky gut syndrome has attracted polarization in the medical community. Doctors have found increased intestinal permeability in patients with inflammation of the gut — such as Crohn’s disease patients — but in this context, increased intestinal permability is treated as a symptom, not as an independent diagnosis. One doctor at the University of Tennessee found that 100 percent of her patients with increased intestinal permeability also had a history of endometriosis. However, this study only assessed 25 patient samples, and was funded by the Endometriosis Foundation of America (click here to read my Instagram post documenting some of the problems with them), who does not publicly disclose their donor list — currently, clicking on their “Our Supporters” page brings you to a 404 Page Not Found warning. As a result, we don’t know if EndoFound or any of its donors may have benefitted from research “proving” that leaky gut is linked to endometriosis, so we can’t say for certain if the research is unbiased.

The other major problem with the “diagnosis” of leaky gut syndrome is its intricate link to diet culture. Sadly, “functional nutritionists” are often proponents of radical, extreme diets. “Treatments” for leaky gut syndrome often include adopting restrictive diets that cut out all sugar, including the natural sugars found in fruit and yeast. Fruit in particular has documented benefits for gut health; it is a source of prebiotic fiber, which feeds the “good” bacteria living in your intestines. Patients who adopt these diets for SIBO frequently report feeling better rapidly, leading many to speculate if the benefits are due to the placebo effect — or simply due to eating healthier, less-processed foods, as such a restrictive diet requires.

Many doctors advocating for greater awareness of leaky gut syndrome have written their own diet books dictating what patients should or should not eat, meaning they profit from the sale of the leaky gut “diagnosis” to vulnerable populations. They shamelessly use the words “weight loss” in the marketing of their products — see Fiber Fueled by Dr. Will Bulsiewiscz (“the gut health MD”) and The Plant Paradox by Dr. Stephen R. Gundry. In other words, it’s highly likely that the “leaky gut” diagnosis is little more than diet culture in disguise, though there is preliminary evidence linking the symptom (read: not diagnosis!) of increased intestinal permeability to endometriosis.

Gut Dysbiosis

DYSBIOSIS- Microbial Imbalance Symptoms, Causes and Natural ...
Image Source: Ecosh

“Dysbiosis” means, simply, an imbalance of bacteria somewhere in the body. Even “good” bacteria, or the bacteria normally found in our microbiome, can cause problems when it grows unchecked. In endometriosis patients, dysbiosis has been found both in the gut and in the genital tract, explaining why endo patients often experience both GI symptoms and recurrent vaginal infections. Gut dysbiosis can lead to GI symptoms like constipation, diarrhea, gas, and bloating, as well as psychological symptoms like depression and anxiety, yet — like increased intestinal permeability — it is not a diagnosis in and of itself.

According to research, patients with stages III and IV endometriosis appear to have more Shigella and Escherichia bacteria in their gut microbiome than the average person. These species normally live in our gut in small numbers, but can become pathogenic when they proliferate. In the case of GI symptoms linked to endometriosis, it’s possible that the threshold of Shigella and Escherichia lies somewhere between “normal” and “pathogenic,” leading to chronic symptoms rather than acute illness. It’s important to acknowledge that the study is preliminary and notes that more evidence is needed before we can definitively determine if this dysbiosis is a cause of endometriosis.

We are still understanding the relationship between the gut microbiome and many areas of health, including our reproductive health. As we learn more, new treatments based on harnessing the power of the gut may become available for diseases like endometriosis. Right now, what we do know is that what we eat directly influences our microbiome. The best advice for managing suspected gut dysbiosis is to maintain a gut healthy diet, rich in whole foods and probiotics.

How to Manage Endo Belly

The best way to treat bloating is to identify its root cause and eliminate it. For endo patients, this means laparoscopic excision surgery to treat endometriosis. If SIBO or another gut disorder is contributing to your endo belly, your doctor will also need to treat that condition as well. The low-FODMAP diet for IBS, the antibiotic Rifaximin for SIBO, and probiotics for gut dysbiosis are just a few examples of treatments specific to conditions affecting the gut.

Regardless, it’s important to promote good overall gut health, too. Creating the ideal environment for your healthy gut bacteria to thrive supports your system as it heals from the damage inflicted by SIBO, dysbiosis, and/or endometriosis. If we’re being honest, your endo belly will probably never disappear, but you can at least learn to manage it so that it no longer controls your life. Here’s how to decrease pain and bloating associated with endo belly while awaiting laparoscopic excision surgery:

Probiotic Supplements

A 2002 study found that rhesus monkeys with endometriosis had altered gut microbiomes, with more Gram-negative bacteria and fewer Lactobacillus strains. Lactobacillus is a genus of “good” bacteria found naturally in the gut microbiome and the vaginal flora. Supplementing with high-quality Lactobacillus probiotics encourages Lactobacillus to flourish in the gut, allowing it to play its natural role in supporting healthy digestion. And, bonus: a clinical trial also found that Lactobacillus probiotics decreased endometriosis patients’ overall pain levels.

But not all probiotic supplements are created equal. Firstly, probiotics need prebiotic fiber to thrive. Prebiotic fiber feeds “good” bacteria like Lactobacillus, allowing it to take hold in the gut. Secondly, you need the right dosage of probiotics to get the most benefit. Even freeze dried or acid resistant strains of bacteria are often dead by the time they reach the gut, preventing them from having any long-term benefit. Making sure your supplement contains at least one billion colony-forming units (CFUs) of Lactobacillus so that you are getting as much live bacteria as possible.

My favorite probiotic supplement is Ora’s Vegan Probiotic Capsules with Prebiotic Fiber. They are a little more expensive than many probiotics, but the best I have tried so far. I like them because the capsules do not use gelatin (I am a vegetarian) and they contain at least 16 billion CFUs of six different strains of bacteria. Since starting to take Ora probiotics, I have had a consistent bowel movement after almost every meal — which, speaking as someone diagnosed with constipation-type IBS, is saying something! The $35 price tag is definitely worth the investment for good gut health.

Plant-Based Diet

It’s important to acknowledge that there is no such thing as a single “gut healthy diet” that everyone should follow. Anyone who tries to sell you the promise of better gut health in 30 days, or of losing weight “the gut healthy way,” is selling you diet culture — a.k.a. straight B.S. Eating a gut healthy diet (read: “diet” as in “what you eat every day,” not as in “fad diet”) isn’t about how many calories or macros you eat in a day. Instead, it’s about making the conditions inside your body as optimal as possible for the reproduction of healthy bacteria like Lactobacillus.

What we eat plays a huge part in the diversity of our gut microbiome. The traditional “Western diet” (think: sugary cereals, takeout pizza, deep-fried anything) promotes the growth of only certain types of bacteria — the kind that thrive on high levels of sugar and fat, and low levels of fiber. The lack of diversity in the Western diet gives way to a lack of diversity in the gut microbiome as well, promoting the growth of “bad” bacteria that causes inflammation. Endometriosis, too, causes inflammation — so as you can imagine, endometriosis paired with poor nutrition is a match made in hell.

The most important thing you can do for your gut health is decrease the amount of processed foods, meat, and dairy you eat, and increase the amount of plants in your diet. I’m not saying you need to cut out sweeping categories of food to obtain good gut health — you know I’m not about restrictive diets — but you should at least increase the amount of plant-based foods in your diet, which in time will give way to moderation in the other categories. Why plants, you ask? Plant-based foods like fruits, vegetables, and whole grains act as prebiotics. In other words, the healthy bacteria in your gut can break down the fiber in these foods to use as fuel, encouraging them to multiply.

When choosing what to put on your plate, also think about the diversity of foods you eat. Are you eating fruits and veggies in every color of the rainbow? Do you choose dishes from all four corners of the world? The more diverse our diets are, the better our bodies can support a wide array of healthy bacteria — so don’t be afraid to mix a colorful array of plant-based foods with organic dairy, omega-3 rich fish, and grass-fed meat (if that’s your thing). Eating probiotic foods like yogurt, kefir, sauerkraut, and kombucha can help, too. Just make sure that no matter what you eat, you make at least half your plate fruits and vegetables (most of the time) to ensure you’re getting all the fiber you need to support your gut microbiome.

Stay Hydrated

I know, I know: as someone with a chronic illness, you’re probably sick of being told that “drink more water!” is the answer to your prayers. I’m not saying hydration will cure your endometriosis, but it may reduce the severity of some symptoms — like bloating. When you are dehydrated, your body will compensate by holding onto excess water. Electrotlyte imbalances resulting from dehydration can also slow digestion, meaning you may become constipated. These effects can make you look and feel even more bloated than your endo already does.

If you feel dehydrated even though you think you’re drinking plenty of water, there are two possible solutions:

Firstly, you might be misjudging how much water your body actually needs — meaning you might feel like you’re drinking enough, even though you’re actually not. At minimum, experts suggest you should drink 0.5 ounces of water for every pound that you weigh. To easily calculate out how many ounces of water you need to drink per day, simply divide your weight in pounds by two — for example, if you weigh 150 lbs, you should drink 75 ounces of water every day. To

Secondly, even if you’re drinking enough water, you might feel dehydrated if you’re eating too much salt. Ever feel extra thirsty after eating an order of french fries? Then you’ve probably witnessed the effects of a high-sodium diet on hydration firsthand. Sodium plays an important role in maintaining water balance in our cells. Your body needs salt to maintain this delicate balance, but eating too much can cause your body to hang onto excess water, exacerbating bloating and making you feel dehydrated. The average American eats about 3,400 milligrams of salt per day. Decreasing your salt intake to no more than 1,150 milligrams per day can help you debloat, while also preventing heart attack and stroke.

These healthy habits can prevent bloating, but what about when you’re already having a flare-up of endo belly? What should you drink then? Personally, I find that drinking warm water with lemon or a hot cup of tea when I am painfully bloated helps me feel better. You may want to stick to decaffeinated beverages over caffeinated ones, as caffeine can lead to dehydration, too. Professionals also recommend sticking to flat over carbonated or sparkling beverages when you’re bloated, as the CO2 in these drinks can push excess air into your stomach, leading to painful distension.

Love Your Endo Belly!

As important as it is to promote a diverse gut microbiome, perhaps the most important thing I ever did for my health was learn to love my endo belly. In the endo community, we talk a lot about treating and reducing bloating with probiotics or a healthy diet, but not about learning to be okay with your endo belly. Endo belly is always presented as something to “fix,” “fight,” “conquer,” or “manage.” Don’t get me wrong: a bloated, painful, distended belly shouldn’t be something you need to put up with for the rest of your life. But neither should you let it completely derail your life, the way that I did as a teenager. You can learn to love your endo belly, as impossible as that sounds.

In high school and college, I spent so long obsessed with shrinking and flattening my endo belly that I developed disordered eating. The doctors had yet to suspect endometriosis, so I didn’t understand why dieting and exercising wasn’t “working” to flatten my bloated belly. I continued to make my diet more restrictive, my exercise more intense to compensate. Little did I know that my body wasn’t the problem: endo was — and excision surgery, not dieting, was the only cure. My disordered eating may be gone, but my negative body image and low self-esteem persist to this day. They are demons I continue to fight, in therapy and every time I look in the mirror. If I can leave you with anything, let it be this: your belly is perfect just the way it is. You do not need to put up a constant fight to change it, especially when you are having a flare (as tends to be the case during a painful bout of endo belly).

Self-love and body positivity — especially with a chronic illness — takes hard work, and lots of practice. You can start by choosing one of these quick body-positive activities to do today, and build up to the habit of practicing self-love every day. Here’s the list:

  • Think of the person you admire most in this world. Think of everything you admire about them and realize: you probably don’t admire them for their appearance, do you? So, why should you judge yourself by yours?
  • Name five things your body does for you that you are grateful for — functions it performs for you that have nothing to do with what it looks like. I’ll start you off: your body instinctively breathes for you, so you don’t ever have to think about it.
  • Practice a body-scan meditation. Get in touch with the sensations in your body, as it is in the present moment.
  • Write a letter to your endo belly. Forgive it. Apologize for trying to change it. Thank it for everything it’s taught you.
  • Throw out all of your fashion magazines. Stop using airbrushed models as your basis for comparison.
  • Donate or sell all of the clothes that no longer fit you. You don’t need that itty bitty bikini as “motivation.”
  • Unfollow everyone who makes you feel bad about yourself. Hint: you can start with all the girls from your high school who joined an MLM.
  • Start a body negativity jar. Anytime you think something negative about your body, put a quarter in the jar.
  • Immerse yourself in body positivity at the policy level. Spend time reading about key movements like the Health at Every Size (HAES) movement. Educate yourself on why the BMI is a flawed system.

Do I Have Bowel Endometriosis or IBS?

Those of you who have been following Endo Strong since the days when it was called “Lovely & Lazy” will remember that I originally started blogging about IBS, not endometriosis. That’s because, like 10 percent of endo patients, I was originally diagnosed with and treated for IBS. The first year of my journey with chronic illness was valuable, in that it taught me everything I ever needed to know about maintaining a healthy gut. Gut health is equally as important in endometriosis as it is in IBS. However, I remain frustrated that my family and I spent hundreds, potentially thousands, of dollars on tests and treatments that didn’t bring me answers, before discovering that my problem was in a completely different set of organs.

Over the 1.5 years I spent searching for answers, I was diagnosed with IBS, referred for SIBO testing, and underwent a breath analysis for H. pylori (the bacterium responsible for most stomach ulcers). I had a CT scan, upper endoscopy, colonoscopy, and transvaginal ultrasound that each turned up nothing, save for a couple of harmless “functional” cysts on my ovaries. I tried eating vegan and low-FODMAP, yet nothing helped. It took me over a year to notice that my symptoms were correlated with my menstrual cycle. And knowing what I do know about endometriosis, I’m not surprised.

It takes patients an average of seven years to be diagnosed with endometriosis. I started getting my period at age 10. Over the years, my cramps only worsened. My doctor had to sign a note allowing me to keep Aleve in the school nurse’s office for my cramps starting when I was 13 years old. At 15, I vomited in the nurse’s office when I got period cramps. I thought I had a 24-hour stomach bug at the time, but it turns out it was the period pain that likely caused my nausea. Not long after, I nearly fainted when I started getting cramps in the middle of a statewide standardized test. You weren’t supposed to leave the room during the exam, but my teacher was so worried about my pale appearance that she permitted me to go to the bathroom when I admitted I had my period.

Yet when I asked my (male) primary care doctor to go on birth control pills for my period pain, I wasn’t questioned about the extent or severity of my cramps. I was simply written the script and left to deal with the consequences. The pill helped the pain somewhat, until my depression began to worsen and I was forced to stop them. Soon after, I had an IUD inserted, in what was the most painful medical procedure of my life. (I now know that I have a retroverted, retroflexed uterus, and they were trying to insert the IUD in the wrong direction.) My cramps lightened again, but I continued to have long, heavy periods that lasted eight to ten days. (A healthy period lasts anywhere from three to seven days.) But all of this was bearable until I began experiencing gastrointestinal symptoms alongside my period pain.

In college, I started having alternating bouts of constipation and diarrhea. Every day, I was bloated — often painfully so — leading me to work out obsessively in pursuit of a “flat stomach.” On a few occasions, I even noticed blood in my stool. After I did 23andme with my boyfriend for fun, I discovered I carried a number of genes that raised my risk for Inflammatory Bowel Disease (IBD). My mom’s uncle has Crohn’s disease, so I decided to see the school doctor to get tested for biomarkers. They tested my sedimentation rate, which was normal, and preliminarily diagnosed me with alternating-type IBS. I got a referral to Boston Medical Center for gastroenterology services, where they tested my stool for calprotectin levels and occult blood, and confirmed the diagnosis of IBS-A.

During that time, I was technically on the low-FODMAP diet, but I was so afraid to exacerbate my symptoms that I was frequently skipping meals (or surviving on coffee and an underripe banana from the campus Starbucks) to cope with them. It didn’t get really bad, however, until I spent winter break visiting David in Erie, Pennsylvania, where he was finishing medical school at the time. After eating at Panera Bread, I got such painful stomach cramps that we decided to go to the emergency room. There, I was written a script for Bentyl (an anti-spasmodic that’s over-prescribed for IBS) and basically told I was overreacting. Refusing to give up, I scheduled an appointment with a nurse practitioner, who tested me for H. pylori and sent me in for a CT scan. I originally felt good that she was taking me seriously, but when the CT turned up naught but a functional ovarian cyst, she wrote off my pain as related to the cyst and told me to come back only if I worsened. To be honest, I felt so terrible already that I couldn’t imagine getting any worse — so I gave up on my medical quest for the time-being, and resigned myself to a life of suffering.

It wasn’t until I moved to Cleveland to live with David after graduation that I decided to keep pushing for answers. I saw a gastroenterologist, who did an upper endoscopy and biopsy for celiac disease, which also came back negative. I then had a colonoscopy, which came back — you guessed it — negative, too. After that, the doctor decided that I definitely had IBS-C, and told me my problems would be solved with a daily dose of Miralax. About a month later, after failing to see improvement with the Miralax (and feeling skeptical of relying on laxatives long-term, which can make your bowels dependent on them), I came back to ask if there was anything else he could do. I overheard him complaining about me to the nurse in the back room, saying that I was “noncompliant” and needed to be urged to take my Miralax. Following that appointment, I left in tears, and refused to go back to his office ever again.

To be honest, I don’t even remember how I came to the conclusion that I needed to pursue an endometriosis diagnosis rather than accepting I had IBS. All I know is my IBS diagnosis never sat right with me; I always had a gut feeling that something deeper was wrong with me. I had read Dr. Tamer Seckin’s book The Doctor Will See You Now when it came out, wanting to understand more about the problems women face in healthcare, and found it interesting, though not applicable to my life at the time. I guess I figured that since I hadn’t had painful period cramps for years, thanks to hormonal treatments, there was no reason to find out if I had endometriosis or not.

Now, I believe that I was drawn to that book for a reason — because somewhere deep down, I think I always knew there was something wrong with my menstrual cycles. But once I became diligent about tracking my IBS symptoms, I knew this for certain, as I began to notice a pattern that correlated with my menstrual cycle. For the first time, it occurred to me that my symptoms might be reproductive, rather than digestive, in nature. I pushed for an appointment at Cleveland Clinic’s Center for Pelvic Pain and Endometriosis, and haven’t looked back since. Now, I’m eagerly awaiting a diagnostic laparoscopy, and most likely excision surgery, for suspected endo.

At my first appointment, my doctor scheduled me for an MRI because she suspected deep infiltrating endometriosis (DIE), a form of endometriosis that infiltrates deeper than 5 mm into the tissue it grows on. Thankfully, my MRI came up negative for DIE, but it remains possible that I have superficial endometriosis on my bowel, or in areas adjacent to my bowel, that could be responsible for my symptoms (for example, endometriosis of the uterosacral ligaments or cul-de-sac can cause constipation by pushing on the bowel). Because I have a retroverted, retroflexed uterus, it’s also possible that my uterus obscured the radiologist’s view of my pelvic cavity and missed potential DIE lesions in those areas.

If you have painful periods and have been diagnosed with IBS, parts of my story might sound eerily familiar to you. 80 percent of endometriosis patients have gastrointestinal symptoms like bloating or constipation, and 18 percent have involvement — whether deep or superficial — of the bowel wall. It’s not at all uncommon to be misdiagnosed with IBS when you actually have endometriosis. Alternatively, you can also have both. If your doctors identify IBS as the cause of your symptoms and don’t ask about your periods, they may miss the fact that you could also have endometriosis.

This brings me to the Golden Ticket of questions for endometriosis patients: do I have bowel endometriosis or IBS? Or do I have GI symptoms of endometriosis, in other locations besides the bowel, that mimic IBS? Ultimately, the only way to answer that question in your unique case is to pursue a diagnostic laparoscopic surgery. A trained minimally-invasive gynecologic surgeon can definitively tell you if you have bowel endometriosis, or endometriosis that could result in bowel symptoms. In the meantime, however, it helps to learn everything you can about bowel endometriosis, as well as how any type of endometriosis could potentially affect your bowel. In this post, I’ll answer those questions, as well as sharing some of the self-management tips that have helped me cope with GI symptoms while I am (eagerly) awaiting diagnostic laparoscopic surgery myself.

What is Bowel Endometriosis?

Bowel Endometriosis: Symptoms, Why It Is Misdiagnosed, and How to ...
Image Source: Everyday Health

Outside of the fallopian tubes and ovaries, the uterosacral ligaments (the ligaments that support the uterus) and the cul-de-sac, or pouch of Douglas (the space between the uterus and rectum), are the two most common sites of endometriosis. Half of all endometriosis cases have superficial rectovaginal involvement. In these cases, endometriosis affects the bowel, or spaces adjacent to the bowel (like the cul-de-sac), without infiltrating deeper than 5 mm into the tissue. The top layer of tissue involved in superficial endometriosis is called the peritoneum or peritonial lining, so you may also hear it referred to as peritoneal endometriosis. This type of bowel involvement cannot be seen via MRI, CT scans, or ultrasound, and can only be definitively diagnosed via laparoscopic surgery. Sometimes, it cannot even be seen by the naked eye, so your surgeon may need to take biopsies during laparoscopy.

By this definition, bowel involvement is very common in endometriosis. Serious bowel involvement, which can require a type of surgery called resection to treat (in which parts of the bowel with deep endometriosis are removed and the two ends of the remaining bowel are reattached to one another), is less common, though still prevalent. 1 in 5 cases of endometriosis present with deep involvement of the intestinal organs. Severe infiltration of the bowel exceeding 5 mm in depth can usually be seen via MRI, CT scans, or ultrasound prior to surgery. If your doctor suspects deep bowel involvement, they may refer you for pre-diagnostic imaging before surgery to help them better plan for your laparoscopy. Should they discover deep involvement of the bowel that could require a resection, you might have to undergo bowel prep before surgery or meet with a specialized surgeon who deals with bowel resection.

How Endometriosis Affects the Bowel

Whether your endometriosis is deeply infiltrating or confined to the peritoneum, it’s more likely than not that you will experience some degree of gastrointestinal symptoms with your endo. You may have heard of “endo belly,” which is painful bloating associated with endo flares. Many patients with endometriosis also present with painful bowel movements (especially during their menstrual periods), constipation, diarrhea, and abdominal pain. Some even have dyschezia, or blood in their stool, during their menstrual period. These symptoms can indicate bowel endometriosis, but they aren’t specific to bowel endo. In contrast, deep dyspareunia (pain during sex) is another, more specific symptom that may signify rectovaginal involvement.

The fact that endometriosis patients experience so many bowel symptoms explains why endo is so commonly confused with IBS. Most doctors won’t ask you if your symptoms are correlated with your menstrual periods. Instead, they’ll hear your symptoms and refer you to a gastroenterologist, who deals with the digestive system. The GI doc will then want to run diagnostic tests like an upper endoscopy or colonoscopy to check for conditions like celiac disease or IBD. When those tests don’t turn up results, they’ll probably give you a “diagnosis of exclusion,” such as IBS — when in reality, your symptoms could be due to a disease of the reproductive tract, rather than one of the digestive system.

Unfortunately, specialists like gastroenterologists spend so much time studying and dealing with the digestive tract that they aren’t taught to look for, or even to recognize, endometriosis. Even if your symptoms scream endometriosis, they might not think to ask you about your menstrual periods. Or, they may have been conditioned to believe that painful periods are “normal,” and think nothing of your menstrual symptoms. This is a common reason why you, like me, might get stuck with a diagnosis of IBS, only to find that IBS treatments — such as laxatives or the low-FODMAP diet — don’t work for you. Science supports this finding, too: patients with endometriosis are 3.5 times more likely to be diagnosed with IBS than patients without.

Coping with Bowel Symptoms

Even if your endometriosis isn’t on or near your bowel, you might still experience symptoms like painful bloating, constipation, diarrhea, or vomiting, especially in connection with your menstrual period. Sometimes, symptoms might be caused by period pain — I’ve both vomited and gotten diarrhea from intense cramps — while other times, they might be connected to the location of your endo.

Regardless, it’s important to remember that the severity of your symptoms might not correlate with the extent of your disease. Someone with Stage I or Stage II endometriosis could have debilitating symptoms, while someone with Stage IV endometriosis might have no symptoms at all.

Either way, you won’t know how severe your disease is, or where it is located, without laparoscopic surgery. The best plan for long-term management of endometriosis symptoms, including GI distress, is to make an appointment with a minimally invasive gynecologic surgeon.

Many hospitals are resuming elective surgeries (read: any procedure that is planned in advance, as opposed to a sudden emergency) after suspending them due to COVID-19. Still, you might find that there’s a backlog of people who are rescheduling their surgeries due to the coronavirus. As a result, you may not be able to get in for surgery as soon you would like.

I’m right there with you. We had to cancel my surgery date after moving to Rhode Island for my boyfriend’s medical residency, and getting in anywhere has been nearly impossible thanks to COVID. In the meantime, however, my primary concern — and probably yours, too — has been managing my symptoms so I don’t feel miserable while I’m awaiting the date of my surgery.

Remember all those things I learned about good gut health while following the IBS rabbit hole? This is the part where those things come in handy. When it comes to IBS, changes in diet and lifestyle are the only treatments available. That might not be true for endometriosis, but that doesn’t mean that diet and lifestyle changes can’t help you improve your gut health and manage your bowel symptoms, regardless of the actual location of your endo.

1. Medical Management of Symptoms

While surgery is the most effective long-term treatment, many endometriosis sufferers get temporary relief from certain medications, both prescription and over-the-counter. Not all patients with endometriosis respond to hormone therapy, but for those who do, you may find that your bowel symptoms improve as your pain does. Hormone therapy for endometriosis includes birth control methods like the pill and the IUD, as well as GnRH medications like Orlissa. GnRH medications put the body into artificial menopause, so you stop getting a menstrual period. As a result, you may find that the symptoms associated with your cycle due to endometriosis also improve. Some people are not comfortable with artificially pausing their menstrual cycle, however, and may not want to try hormone therapy. Others may have unpleasant side effects from hormone therapy, such as vaginal dryness or depression.

Over-the-counter (OTC) medications can also provide short-term relief for GI distress. Which medication you should take depends on your symptoms and what other medications you might be taking. For constipation, there are many types of laxatives you can try to help you get relief. These remedies are inexpensive and available at your local drugstore. Most are very safe for short-term use. There are also OTC medications available for diarrhea, gas, and bloating that may provide temporary relief in some endometriosis sufferers.

Treatments for Constipation

Short-term constipation can be due to the location of your endometriosis or due to food intolerances related to endo. When endo grows in such a way that it presses on or narrows the bowel wall, constipation is the result. In these patients (myself included!), constipation typically worsens during the menstrual period. These patients may get relief from hormone therapy. However, other short-term remedies for constipation are available OTC. These take the form of laxatives.

Different types of laxatives work differently. As an endo sufferer who suffers from cyclical constipation, I sometimes feel like I’ve tried them all! As a result, I know the pros and cons of each type of laxative. You should always talk to your doctor before beginning a course of laxatives, but this information can help you determine which type may be most appropriate for you:

Fiber supplements can relieve long-term constipation that is due to a lack of fiber in the diet. Many endo sufferers may find that high-fiber foods cause gas or bloating. As a result, they may not consume enough dietary fiber and can suffer from constipation. In these cases, fiber supplements may be most appropriate. Fiber supplements come in the form of soluble fiber, which must be accompanied by plenty of water, and insoluble fiber. These supplements add “bulk” to the stools to help them pass more easily. Brands include Citrucel, Metamucil, and Benefiber. Personally, I have had the best experience with Citrucel or psyllium husk fiber, but you may want to experiment to find which brand is best for you. Fiber supplements are generally the safest option for long-term use. However, you should note that they can make constipation worse if you don’t drink enough water with them.

Osmotic laxatives draw water from the intestines into the stool to soften it and help it pass more easily. As a result, thirst can be a side effect of osmotic laxatives. You should always take them with plenty of water to replenish the water lost from their use. Osmotic laxatives include Milk of Magnesia, magnesium citrate, and Miralax. Miralax is a colorless, tasteless powder that you can mix into any drink. Magnesium citrate is a carbonated saline solution that comes in a variety of flavors. Milk of Magnesia is a derivative of magnesium and comes in liquid format. I find it works best if you take it with a warm liquid, such as coffee or tea. Osmotic laxatives are generally considered safe, but should not be used long-term, as your bowels can become dependent on them to work properly. They usually work overnight.

Lubricant laxatives lubricate the digestive tract to help stool pass through the colon more easily. They make your stool more “slippery” to decrease its transit time. I like oral lubricant laxatives the best of any laxatives, because I find they are the most gentle. However, they are also available as suppositories. Examples of lubricant laxatives include mineral oil and glycerin. Mineral oil can be taken by mouth. It has a bit of an unpleasant taste (it tastes like soap to me) but generally works within 6-8 hours. Glycerin or mineral oil suppositories are inserted into the anus and work as quickly as 15 minutes.

Emollient laxatives mix fluid into stools to soften them, helping them pass more easily. They are also called stool softeners. Your doctor may prescribe them for use after giving birth, after surgery, or if you suffer from hemorrhoids. It can take a week or longer for stool softeners to become effective. As a result, they are not a good “quick fix” if you are suffering from acute constipation due to endometriosis. However, they can be helpful after excision surgery to remove endo implants.

Stimulant laxatives are a last resort. They stimulate the bowels by forcing them to contract. This causes an almost instantaneous bowel movement. However, they are far from gentle, and can cause intense cramping and severe diarrhea. Stimulant laxatives include Dulcolax (bisacodyl) and senna. Watch out for senna in “detox” or laxative teas — they may claim to help relieve constipation, but like any stimulant laxative, they can cause diarrhea and cramping. Stimulant laxatives are not safe for long-term use. Long-term use of stimulant laxatives can weaken the bowel’s ability to contract naturally, leaving you dependent on these laxatives anytime you need to “go.” The only time I would use stimulant laxatives is in bowel preparation prescribed by my doctor. Bowel prep is prescribed before colonoscopy to clear the colon and improve the doctor’s ability to see the intestinal walls. It is also prescribed to some patients having excision surgery, especially if bowel endometriosis is suspected. Bowel preparation before surgery reduces the risk that fecal matter will leak into the abdomen during bowel surgery, which can cause dangerous infections.

Treatments for Diarrhea

Like constipation, diarrhea has many links to endometriosis. Inflammation of the bowel wall in bowel endometriosis may cause chronic diarrhea. You can also get diarrhea from intense period cramps. Diarrhea linked to your menstrual cycle may be due to endometriosis. Food intolerances, which are common in patients with endo, can also cause acute episodes of diarrhea.

Nobody loves having diarrhea — but thankfully, there are two effective OTC medications, called anti-diarrheals, that can help. Loperamide (brand name: Imodium) slows transit time, or the time it takes for stool to pass through the colon, by absorbing water into the intestines. Its side effects include abdominal pain, nausea, and constipation. Bismuth subsalicylate (brand name: Pepto-Bismol) can treat both diarrhea and upset stomach by reducing inflammation. Side effects include black stool or tongue, and constipation.

Be wary of overusing anti-diarrheal medications, as they can cause chronic constipation. If you have chronic diarrhea that requires long-term use of anti-diarrheals, make sure to check in with your doctor. They may want to examine your intestines via colonoscopy or upper endoscopy to see if you have inflammatory bowel disease or celiac disease, which can also cause chronic, watery diarrhea.

Treatments for Gas and Bloating

“Endo belly” is one of the most widespread symptoms of endometriosis. It can be uncomfortable, embarrassing, and even painful. It also affects body image and confidence, which can then impact our relationships. Endo belly can also be accompanied by gas, which is equally unpleasant. In the long-term, only excision surgery will cure your endo belly — but there are some short-term OTC solutions to relieve extreme, painful cases of bloating or gas.

Simethicone (brand name: Gas-X) breaks up the bubbles in trapped wind and helps gas pass through the digestive tract more easily. It may cause you to pass more gas or “fart” more at first, but the process of passing gas can relieve bloating and abdominal pain related to trapped wind. Simethicone comes in chewable tablets, which are often flavored. They are generally safe and can provide some relief, though there is little clinical evidence behind them. Some people also swear by activated charcoal. Taken before or after a meal, charcoal pills could reduce symptoms. I have not tried it, but there is limited clinical evidence to support their use. It’s also important to note that charcoal pills can interfere with the absorption of medications and stain your teeth and clothes.

Probiotics are OTC supplements that come in pill or powder form. I’m a huge proponent of probiotics — and of all the OTC solutions for gas and bloating, they have the most evidence behind them. They contain live active cultures of beneficial bacteria found in a healthy digestive tract. This healthy bacteria lives in the gut to keep unhealthy bacteria in check. Gut dysbiosis, or an imbalance of healthy and unhealthy bacteria in the gut, is common in patients with endometriosis. (You might also hear this referred to as small intestinal bacterial overgrowth, or SIBO.) The medical community debates whether or not probiotic supplements are actually helpful. Opponents say you shouldn’t waste your money: these supplements are expensive and not worth it, given that very few of the bacteria are alive by the time the supplement reaches your gut, and that even fewer are able to colonize the intestines. However, there are also plenty of proponents, and plenty of research to say that probiotics can play an important role in reducing GI symptoms like gas and bloating.

There are many probiotics available on the market today. Don’t be fooled by advertising. Instead, check the label. Any good probiotic should contain strains of lactobacillus and bifidobacterium, the two most well-researched strains of healthy bacteria used in probiotics. Your supplement should also contain at least one billion CFUs (colony-forming units) of said bacteria. Probiotics consume the healthy prebiotic fiber found in fruits and vegetables. Therefore, you should eat plenty of these foods to help sustain the growth of probiotics so they are more likely to colonize your gut. Probiotic supplements are safe for long-term use and may even have additional health benefits, such as reducing anxiety and depression. There are many brands, but way back in college, my gastroenterologist back in Boston recommended Align to me. Of all the types I’ve tried, Align remains my favorite.

2. Home Remedies for GI Symptoms

Now, I’m not saying you should try any sketchy Pinterest remedies for constipation, diarrhea, or bloating caused by endometriosis — but there are some tried-and-true at-home remedies that can help soothe GI symptoms.

For example, have you ever heard someone say “coffee makes me poop?” It’s true: a cup of coffee can be an effective remedy for constipation. Basically, your intestines contract rhythmically in a process called peristalsis that helps move food and poop along the digestive tract. Coffee appears to speed this process. We still don’t really know why this is the case, but it isn’t because of the acidity, the temperature, or even the caffeine. While caffeinated coffee can produce stronger effects, as it speeds the contractions of the intestines even more than coffee itself, decaffeinated coffee has been found to have the same laxative properties. If you suffer from diarrhea, you may want to avoid coffee for its laxative effects.

When you have diarrhea, eating a bland diet can help soothe your intestines and make your stool more solid. Growing up, my mom swore by the BRAT diet whenever we were sick — bananas, rice, applesauce, and toast — and it always worked. You may feel tempeted to choose whole-grain rice or toast for the health benefits, but when you have diarrhea, white may be the better option. This is because processed white grains contain less fiber, as the manufacturing process removes the germ, which is the part of the grain with the most fiber. When you want to poop, fiber is your friend — but when you are already pooping too much, it may be time to cut back.

I also swear by the healing properties of tea for just about anything, but especially for GI upset. As I mentioned previously, I recommend steering clear of laxative teas including senna, since this is a stimulant laxative that can cause cramps and diarrhea. However, other types of tea are well-suited to different GI symptoms. Peppermint tea can help with bloating, while ginger tea can soothe the digestive tract if you are suffering from nausea or diarrhea. Additionally, dandelion root tea may act as a mild laxative. Green tea is also thought to have a generally positive effect on digestive health and reduces inflammation, which is great news for endometriosis sufferers.

3. Managing Symptoms with Diet

Research shows that food allergies and intolerances, for whatever reason, are more common in people suffering from endometriosis. We still don’t really know why this is the case, but some doctors have proposed that the bodies of people with endometriosis are just more sensitive than others. Inflammation also links the two, as it plays a role in both endometriosis and food allergies. If you have endometriosis, it’s worth asking yourself whether your GI symptoms could be due to an underlying food intolerance or allergy.

Keeping a food diary can help you identify if you might have a food intolerance or allergy. This printable template was designed for IBS sufferers, but is generic enough for use with endometriosis, too. (You’ll find the Bristol stool scale below for rating your bowel movements.) Notice the days when your symptoms are worse, and see if there are any commonalities between them. Common culprits include gluten, dairy, and fructose. While the low-FODMAP diet was originally created for IBS, some endo patients also seem to be intolerant to FODMAPS, too.

How to Read the Bristol Stool Chart - Poop Types 1-7 • Seed
Image Source: Seed

Both food intolerances and allergies can be treated by avoiding the food that causes a reaction. However, it’s important to know the difference between the two. Allergies, unlike food intolerances, can have a long-term effect on your health. For someone who is lactose intolerant, eating milk accidentally may cause a few hours of upset — while for someone with a milk allergy, eating milk could have serious consequences, or even put their life in danger. An allergist can perform testing if you are worried your intolerance might actually be an allergy. In this testing, a small amount of an allergen is injected under your skin and the allergist will check for swelling at the site of injection. Similarly, a gastroenterologist can do blood tests and biopsies of the small intestine (during an upper endoscopy) to check for celiac disease, in order to distinguish it from non-celiac gluten sensitivity.

4. Improving Gut Health to Manage Symptoms

Of all the causes of GI distress, among both endometriosis sufferers and non-endo sufferers, poor gut health may be the most common. We live in a culture that promotes poor gut health. Heavily processed, low-fiber foods like sweets and chips don’t provide the nutrients needed to support healthy bacteria in the gut — yet these foods form the bulk of the American diet. We also live in a capitalist culture where we are told we need to be constantly productive, fostering an environment laden with chronic stress that takes a toll on gut health. As I shared in an old tweet, I once overheard a girl at my high school say that she “didn’t have time to poop” because she was so busy. Like, what?! Are you okay?!?!

But as much as I like to kid, good gut health is no joke. Our microbiome, comprised of the healthy bacteria in our gut, isn’t only responsible for the digestive tract: it supports everything from good mental health to a strong immune system. Good gut health is good health, period — which is why, endometriosis or no, we all need to take better care of our digestive tracts. Unfortunately, there’s a lot of misinformation out there about the gut, especially since gut health has become one of the latest Goop fads. So, setting aside the turmeric lattes and vaginal steaming — how do you actually promote a healthy gut?

I hate to be the bearer of bad news, but the magazine covers have got it all wrong: there’s no quick-and-easy secret to improving your gut health. Instead, it all boils down to things you’ve probably heard before and just didn’t want to have to implement. And trust me, I get it: I get that most of us hate running and would rather die than give up cake and wine. But at the end of the day, you can’t cheat your way into good gut health. You have to reduce the processed foods, sugary snacks, and animal products in your diet, and focus on whole grains, fruits, and vegetables that feed the digestive tract with healthy prebiotic fiber. Get enough sleep, reduce your stress levels, and maybe exercise a few times a week. It really is that simple.

If you want to go above and beyond, consider taking a well-researched probiotic supplement and consuming fermented foods that are also rich in probiotics. Sauerkraut, kimchi, kombucha, and kefir are all examples of cultured foods and beverages that contain gut-healthy probiotics. But it’s important to know that none of that matters if you aren’t creating a gut-healthy environment by laying down the foundations of diet, exercise, sleep, and mental health. You can feed your body all the probiotics you want, but they won’t be able to survive in a digestive tract that is stressed, tired, out of shape, and malnourished. In order for probiotics to work, you have to create the ideal environment for healthy gut bacteria to thrive.

How to Exercise with Endometriosis

“Try exercising,” the doctor tells you for the n-billionth time. You roll your eyes.

You’ve just asked your doctor what more you can do to relieve endometriosis-related pain and stress. Yet again, he’s told you to just “exercise,” as if lifting weights is a cure for endo. Little does he know (somehow, it’s always a ‘he’) that a single crunch can leave you doubled-over with cramps for weeks.

Let’s get real for a sec. Your doctor isn’t lying when they tell you that exercise has benefits for endometriosis — but we also need to stop acting like it’s oh-so easy to pick up and go for a run when your insides are attacking themselves. I know firsthand that it’s incredibly difficult to strike a balance between exercising enough to get the health benefits, and making sure you don’t exercise so much that you exacerbate your pain.

In my experience, working out too hard, with too few days of rest, can lead to the world’s worst endo flare. (And trust me, I had orthorexia. I know a thing or two about working out way too hard!) At the same time, avoiding exercise altogether doesn’t feel good, either. Exercise has important benefits for your physical and mental health.

So, what can you do to get in shape without making your endo pain worse? Read on to learn a little more about the relationship between endometriosis pain and exercise, and what types of exercise are best to try when you have endometriosis.

Why Exercise With Endometriosis?

I know what you might be thinking: when you’re in pain all the time, why bother trying to exercise? When my endo flares up, sweating it out in a 90-degree yoga studio is pretty much the last thing I want to do. So, why not chill in bed all day and worry less about the squats and crunches?

Well, believe me: the last thing I want you to do is worry about exercise. It’s easy to get wired about your workout when you’re anticipating being in pain afterwards (and not the good, “my-muscles-are-sore” kind of pain). If working out is more stressful than it is fun, it’s time to reassess your workout routine, to see if you either need a break or to try something different.

I’ll talk more about changing up your workout routine to become more endometriosis-frendly later in this blog post — but for now, here are some of the reasons why you should consider squeezing in a light workout, even when your endo pain leaves you breathless:

  • Exercise relieves pain. As Elle Woods said, “Exercise gives you endorphins. Endorphins make you happy.” To take a note from Elle’s playbook, happy people just don’t feel as much pain as people who don’t exercise. Not only are endorphins a powerful happy hormone, but they’re also a natural analgesic.
  • Exercise reduces menstrual flow. Um, what?! If I had known that working out could make my periods lighter, I would have started working out a lot sooner, thank you very much. But it’s true: people with periods who exercise regularly have lighter menstrual flow than those who do not.
    • It’s important, however, not to cross the line between working out to get a lighter menstrual flow, and working out to “lose your period” altogether. Some people with eating disorders suffer from amenorrhea, or lack of a menstrual period, due to excessive weight loss — that’s not healthy, and that’s definitely not what we’re trying to do here!
  • Exercise lowers estrogen levels. You probably know that endometriosis is an estrogen-dependent disease. Endometriotic implants need a steady supply of estrogen to continue growing and bleeding every month. Studies have found that elite athletes have lower estrogen levels than the average person. While you don’t need to work out at the same intensity as LeBron James, you should definitely consider the benefits of a little light exercise on your endometriosis.
  • Exercise reduces inflammation. I’ve talked extensively about how endometriosis is an inflammatory disease. You’ve probably read my posts about an anti-inflammatory diet and endometriosis — but did you know that exercise can also curb inflammation in the body? Initial evidence comparing exercise to NSAIDs found that both were equally as effective at reducing the severity of menstrual cramps.
  • Exercise works better than heat. Don’t reach for your heating pad when you could reach for your gym shoes instead. When compared to both heat and acupressure, exercise had the best results when used as a self-care tool for reducing menstrual pain. Both are great drug-free alternatives for pain relief, but exercise appears to be slightly more effective — plus, there’s no risk of burning yourself if you jog too much!

The Best Types of Exercise for Endometriosis

You might be rearing to get a workout in after reading all the amazing benefits of exercise for endo — but take a minute and pause first. It’s important that you know that not all exercise is created equal for endometriosis. In fact, some types of exercise might be more likely to leave you hunched over in pain afterward than happy you did them. Other types of exercise might make problems related to your endo, such as pelvic floor dysfunction, worse.

So, what types of exercise can you do with endometriosis? Here are some “dos” and “don’ts” to keep in mind when planning out your workout routine.

DON’T:

  • High intensity interval training (HIIT) and other types of high-impact exercise, like running, are a no-go for endometriosis. These exercises fire up the nervous system, potentially increasing your pain.
  • Strength training at the gym, with weights or machines, does not appear to benefit patients with endometriosis, according to a study summarized by Endo News.
  • Intense abdominal or pelvic floor exercises should be avoided by endometriosis patients. This includes moves like squats, lunges, and crunches. Since your goal is to relax the pelvic floor and abdominal muscles, exercises that contract those muscles may be counterproductive.
    • You might be worried that almost every exercise class incorporates these types of moves — but you should know that trainers are usually willing to help you modify them if you speak to them about your limitations before class.
  • Kegel exercises have become fashionable, thanks to “lifestyle gurus” like Gwyneth Paltrow. You might even have heard that they’ll improve your sex life. The goal of kegels is to strengthen and contract the pelvic floor. With endometriosis, most patients have problems relaxing the pelvic floor, and contracting it is counterintuitive.

DO:

  • Low-impact aerobic exercise gets your heart pumping without upregulating your nervous system, so you get the benefits of cardio without exacerbating endo pain. Swimming and walking are both great options for endo patients.
  • Yoga is great for endometriosis patients because it incorporates deep breathing, progressive muscle relaxation, and stretching in addition to building strength. This helps you release the tight muscles of your pelvic floor, without really having to think about it!
    • Next time you need to relax, check out this yoga sequence from instructor Brett Larkin. It’s available for free on YouTube, and incorporates research into the best yoga poses for endometriosis and fertility.
  • Pilates fuses flexibility, strength, and breathwork exercises into a challenging mind-body workout. The goal of Pilates is to synchronize your movements with your breath, much like in yoga. This promotes mindfulness, which has been shown to reduce pain.

Getting Started with Pelvic Floor Physical Therapy (featuring Soul Source!)

Disclaimer: This post represents a paid partnership with the brand Soul Source.

Thank you so much to Soul Source for sponsoring Endo Strong!

When I first suspected I might have endometriosis, I expected to be told I needed surgery. I had done enough research to know that the only way to definitively diagnose endometriosis is by diagnostic laparoscopy. But what I didn’t expect was to hear that my pelvic floor muscles had become dysfunctional. Now, I was going to need to do internal work with a pelvic floor physical therapist in order to retrain my body to release its muscles and relieve its pain. I’m pretty sure my first thought was, Um, what?!

Beginning pelvic floor physical therapy shook my world, in more ways than one. In case the experience of a stranger poking around my most intimate body parts was not jarring enough, I quickly discovered how painfully slow the process of pelvic floor physical therapy can be. It’s important not to progress through the exercises too quickly, as moving forward before you’re ready can actually make things worse. And, if pelvic floor PT wasn’t slow enough already, the coronavirus quickly put a stopper in my plans for pelvic floor physical therapy.

If I’m being honest, it didn’t take me long to fall behind on my at-home exercises. During the first months of the coronavirus, I spent more time grieving for my missed appointments and canceled surgery than actually working toward my recovery. And that’s okay — I needed that time to feel sorry for myself. I think we all did at that point. Between canceled surgeries, weddings, graduations, sports tournaments…there’s not a single person I know who hasn’t lost something to this pandemic.

But now, as cities begin to reopen, it’s no longer time to feel sorry for myself. It’s time to get back on the pelvic floor PT bandwagon! Admittedly, after not doing it for so long, pelvic floor PT feels hard. In some ways, it feels just as difficult as when I started. But then I remember how frightened and uncertain I felt when I first got started. Not only did that shift my perspective, but it also inspired me to write this article.

If I felt that scared and unsure when I was being guided by a pelvic floor physical therapist, I can’t imagine how people must feel when they are starting their pelvic pain journeys in the middle of a global pandemic. Sure, now that states are reopening, some of us, like me, are willing and able to risk ourselves to visit a physical therapist in person. Yet I recognize that it is a privilege to be able to do so.

That brings me to the purpose of today’s post. Today, I’m teaming up with Soul Source — yep, the original silicone dilator company! — to share a comprehensive resource for all my endo friends who are getting started with pelvic floor PT at home. To be honest, I’m a little starstruck about this collaboration, since Soul Source was one of the first resources I found on my pelvic floor PT journey. I’ve been keeping it quiet for about a month now, and I’m so glad to finally be able to share it with you all!

Why Pelvic Floor Physical Therapy?

As an endo patient, you may have already heard of pelvic floor PT. However, it’s important to note that pelvic floor PT addresses a specific type of pain caused by a disorder known as pelvic floor dysfunction (PFD), rather than pain directly caused by endometriosis.

Chronically tight pelvic floor muscles cause a type of pelvic pain called myofascial pain, which is just one form of PFD. This pain can cause areas of tenderness in the abdomen, pelvis, and vagina, called trigger points.

Over time, pelvic floor physical therapy can promote myofascial release through gentle trigger point massage. For people with vaginas, this usually means your physical therapist will perform internal work — which is why it’s crucial to find a physical therapist you feel comfortable with.

Endometriosis does not directly cause PFD, but PFD often develops in patients with endometriosis. When we experience pain, our body’s instinct is to protect itself by contracting the muscles surrounding that painful area. As a result, people with chronic pelvic pain (like endo patients) may develop tight pelvic floor muscles.

While it’s true that laparoscopic excision surgery is the only viable treatment for endometriosis, many patients continue to experience pain after surgery. As my pelvic pain specialist back in Cleveland stressed to me, surgery can fix the pain caused by your endo, but it will not fix the added pain caused by your tight pelvic floor muscles.

Unfortunately, PFD does not go away when the endometriosis pain does, so removing endometriosis lesions will not cure PFD. The only way to fix PFD is to retrain your muscles through physical therapy.

Getting Started with Pelvic Floor Physical Therapy

To help you feel less overwhelmed, I’ll break getting started with pelvic floor physical therapy into three easy steps:

  1. Finding a pelvic floor physical therapist near you.
  2. Learning about pelvic floor physical therapy.
  3. Stocking up on pelvic floor PT essentials.

Step One: Finding a Pelvic Floor Physical Therapist

Oftentimes, reaching out to a pelvic floor physical therapist is scarier than starting the PT itself. As a sexual assault survivor, I definitely found this to be true. I knew if I was going to have internal massage done, I wanted my PT to be someone I could trust — but it’s difficult to know who you can trust simply by reading someone’s biography on a website.

You can approach finding a pelvic floor physical therapist in one of two ways. Your pelvic pain specialist or endometriosis expert might recommend a colleague who is a pelvic floor physical therapist. Or, you can search for a pelvic floor physical therapist on your own.

If it’s possible for you, I recommend, at the very least, visiting your endo doc before starting pelvic floor PT. Pelvic floor PT won’t help if your problem isn’t actually PFD, and your doctor can confirm the diagnosis of PFD through a pelvic exam.

You should always look for a pelvic floor physical therapist who is board-certified. There are a few types of board certification you might come across in your search for the right PT. All the abbreviations that are thrown around can make physical therapy seem like a foreign language — so allow me to translate two of the most common certifications you’ll see:

  • Women’s Clinical Specialist (WCS). The American Physical Therapy Association (APTA) represents more than 100,000 physical therapists in the United States. APTA delegates the supervision of its Women’s Clinical Specialist (WCS) board certification to the American Board of Physical Therapy Specialties (ABPTS). This means ABPTS administers the certification exam and governs who is eligible for certification. In order to call themself a WCS, a physical therapist must be licensed to practice PT in the United States, have completed at least 2,000 hours of direct patient care in the women’s health specialty, and submit an application for certification that includes a case reflection. After their application is accepted, they must sit for the certification exam. PTs can only use the WCS credential once they pass this exam.
  • Pelvic Rehabilitation Practitioner Certification (PRPC). The Pelvic Rehabilitation Practitioner Certification (PRPC) is overseen by Herman & Wallace Pelvic Rehabilitation Institute. The Institute primarily provides continuing education courses for current PTs, but also offers the PRPC. PRPC applicants do not need to be PTs to earn this certification; they may also be doctors of osteopathic medicine (DOs), physical therapist assistants (PTAs), registered nurses (RNs), and other medical practitioners with a valid U.S. license. In order to sit for the PRPC exam, professionals must document 2,000 hours of clinical experience in the women’s health specialty, but only 500 of those hours need to include direct patient care.

Search engines can help you locate a pelvic floor physical therapist, but they aren’t always reliable. Google won’t always tell you whether or not a pelvic floor PT has the right credentials or what those credentials mean. I recommend turning to sources like the International Pelvic Pain Society (IPPS), which has its own search engine to help you find a trustworthy provider specializing in pelvic pain. Other recommended sources include:

  • APTA Pelvic Health Academy, the APTA’s membership community of pelvic and abdominal physical therapists.
  • Global Pelvic Health Alliance, a global directory dedicated to helping you find pelvic health professionals.
  • Herman and Wallace, a continuing education resource in pelvic floor PT for physical therapists, whose website includes a directory of pelvic floor PTs. .

Step Two: Learning About Pelvic Floor PT

Making an appointment with a pelvic floor PT is an important first step that should be celebrated, but you might be itching to get started right away — I felt the same way! After all, when you’ve already waited 10 years for an endometriosis diagnosis, waiting a month for an initial PT appointment can feel like the straw that broke the camel’s back.

In the meantime, one of the most important things you can do, both for your physical health and your mental health, is to learn everything you can about the pelvic floor. Educating yourself through reading will help you understand your treatment plan better, converse more clearly with your pelvic floor PT, and become a more active participant in your PT experience.

There are so many great books and resources out there that have been recommended to me by doctors and patients alike. Here are a few of my favorites:

  • Heal Pelvic Pain by Amy Stein, DPT was the first chronic pelvic pain book ever recommended to me. I recommend buying your own copy of this book rather than borrowing it from the library, because you’ll definitely want to look back on it during your pelvic pain journey. It contains a week-by-week stretching and strengthening program for PFD and directions for performing internal massage at home.
  • The Chronic Pain Research Alliance offers a comprehensive patient guide to chronic overlapping pain conditions (COPCs), which include endometriosis, vulvodynia, and interstitial cystitis. As you may already know from reading my blog, many of these disorders go hand-in-hand — hence the term “overlapping.” The CPRA patient guide explains the mechanisms behind chronic pain, as well as things you can do at home to relieve the symptoms of COPCs.
  • The V Hive women’s health podcast, hosted by Hannah Matluck (a pelvic pain patient), is amazing on so many levels. In addition to covering everything from nutrition for endometriosis to the importance of periods in girls’ global access to education, the V Hive has tons of episodes related to chronic pelvic pain. Try listening to episode #57, Diagnosing and Treating Pelvic Pain, or episode #66, Why Our Pelvis is the Core of Our Well-Being.

Step Three: Stocking Up On Pelvic Floor PT Essentials

At some point in your pelvic floor PT journey, your provider is probably going to ask you to perform maintenance exercises between appointments, including internal trigger point massage. While doing exercises on your own can be intimidating at first, it definitely helps if you already have the right tools for the job.

Enter Soul Source. I first discovered Soul Source at the recommendation of my own pelvic floor PT, and quickly fell in love. I mean, there’s a lot of things to love about this company: their products are made in the United States, they were designed by a sex therapist and a gynecologist, and Soul Source performs global outreach to help women all over the world, to name just a few.

Soul Source makes and sells both rigid and silicone vaginal dilators, including the only vaginal dilators specific for transgender anatomy. Personally, I use their silicone dilators — in particular, the size #4 — to perform internal massage at home. (Please note that I exclusively use my Soul Source dilators under the guidance of my PT. Soul Source recommends that you consult a pelvic pain practitioner before use in order to get the most benefit from their products!)

The silicone dilators are especially great for people like me who suffer from vulvodynia in addition to PFD. Because I suffer from vulvodynia at the vestibule, penetration with a rigid dilator would be much more painful than using the silicone ones from Soul Source. I also know that their silicone dilators are often recommended to patients with vaginismus, a different sexual pain disorder characterized by painful contractions of the vaginal wall upon attempted penetration. Soul Source also makes rigid dilators that are recommended for trigger point release by many pelvic floor physical therapists.

All of Soul Source’s vaginal dilators are body-safe and easy to clean. They are widely used by the medical community (including my own doctors!), so you can trust that their products are legit. As someone with vulvodynia and chronic vaginal infections, it’s definitely important to me to be conscious of what I put into my body. I’ve never felt any hesitation about using Soul Source’s products — and if you prefer an extra layer of protection, they are condom-compatible.

While browsing the dilators at Soul Source, you can also stock up on other pelvic floor PT essentials. A quality lubricant is a must-have for internal work. I swear by Good Clean Love’s BioNude lubricant, which was formulated especially for extra-sensitive skin.

You can find this lube at Soul Source, as well as one of my other favorite pelvic pain buddies: the Ohnut! The Ohnut is a set of four flexible silicone rings worn on the penis to help partners explore comfortable penetration depths. If you don’t want to compromise intimacy as you work toward pain-free sex in PT (and if your provider gives it the okay), then the Ohnut is for you.

Want 15% off your purchase at Soul Source? Use the code ENDOSTRONG at checkout! Click here to shop.

What I Eat in a Day with Endometriosis

Even before I had to start paying attention to what I eat for my endometriosis, I’ve always been obsessed with food. I’m constantly fascinated by new combinations of flavors and always looking for unique new ways to eat my veggies and whole grains. Cooking and baking are two of my favorite pastimes, and I love experimenting with new recipes — often using David as my guinea pig!

When I’m not blogging, reading, or pinning new recipes to my Pinterest boards, I’m usually cooking or eating something deliciously gluten- and dairy-free. Eliminating gluten and dairy for endometriosis was something that felt incredibly intimidating and restrictive to me at first, so I turned to a lot of “What I Eat in a Day” blog posts and YouTube videos for inspiration. Soon, I found that people were enjoying variations on a lot of the same foods I love and enjoy, without experiencing an endo flare afterwards. I decided to try the gluten- and dairy-free diet for myself.

What sold me on the gluten- and dairy-free diet for endo was the way it made me feel. I used to experience endo belly every. Single. Day. Not anymore! Eliminating gluten and dairy keeps my bloating at a minimum, which means my pants still fit at the end of the day and I’m comfortable enough to stay focused throughout the workday. I’m not saying this solution is going to work for every endo babe, but I do think it’s worth trying to identify if you have a food intolerance that could be contributing to your endometriosis symptoms.

My doctors advised me to try eliminating gluten and dairy — and I recommend you consult with your own doctors before making any dietary changes yourself! You never know if you might have a deficiency or complication that would make a gluten- or dairy-free diet dangerous for you, so turn to the experts who know the human body best. That being said, I want to be a part of showing people that gluten- and dairy-free doesn’t equal a death sentence. You can still enjoy delicious foods without experiencing an endo flare — here’s how I do it!

pasta dish on white ceramic bowl

Throughout the day: I am making a conscious effort to drink more water and water-based liquids, as opposed to running solely on coffee! As a result, I always keep the fridge well-stocked with lemon Polar Seltzer, lemon or raspberry Hint water, and Health Ade Pink Lady Apple kombucha to sip on throughout the day.

9:00 AM: I start every morning with cold brew coffee from Califia Farms, alongside a full breakfast. Breakfast is my FAVORITE meal of the day — I would eat bacon and eggs all day, every day if it wouldn’t kill me — so it’s naturally one that I never skip! Lately, I’ve been loving Simply Elizabeth’s Maple + Almond Butter granola on top of some vanilla almond milk yogurt, with a side of strawberries. I also like to fry an egg over-hard with gluten-free avocado toast (my favorite GF bread is Canyon Bakehouse), or even make a green smoothie with spinach, pineapple, mango, and almond milk.

11:30 AM: For lunch, I usually am throwing together a mix of frozen veggies with protein. A lot of the time, I eat vegan by coincidence, though one of my favorite animal proteins is chicken sausage. One of my favorite lunches is a chopped and seasoned sweet potato fried up with chicken sausage and kale in a bit of olive oil. Another is sauteed cauliflower rice (I like the blends from Cascadian Farm) with a side of black beans simmered with onions and spices. Something I used to eat more of that I haven’t had since moving is sushi — we had a great local grocery store with delicious, freshly-made veggie rolls back in Cleveland (which I would dip in gluten-free tamari sauce from home). Often, I top off lunch with a cookie, like Nothin’ But’s Granola Cookies or Emmy’s Chocolate Macaroons, for just a touch of something sweet.

3:00 PM: I’m typically hungry in the afternoons, so I reach for a snack. I keep things like GoGo Squeez cinnamon applesauce packets, Skinny Pop popcorn, and single-serve packs of gluten-free pretzels (which I eat with hummus) on hand for occasions like these. I also like to bake, so sometimes I snack on dessert; recently, I made a gluten-free, dairy-free strawberry shortcake that I ate with So Delicious Coconut Whip (mmmmm….). A lot of the time, this is when I hit my afternoon slump, so I might also treat myself to an iced coffee at Dunkin’ — a medium iced coffee with extra almond milk when I’m feeling healthy; a medium iced caramel swirl with extra almond milk if I need a pick-me-up on a bad day.

5:30 PM: The earlier I wake up, the sooner I find myself ready for dinner. Lately, I’ve been ready to eat around 5:30 or 6:00 PM most days, which is early for me! I start cooking when I get hungry, which takes me anywhere from 20 minutes to an hour. I love experimenting with new recipes — some of my current favorites are coconut curried lentils and spinach, rice cooker Spanish chickpeas and rice, and, for an easy meal, a concoction I created of Banza chickpea cavatappi, Rao’s tomato herb sauce, sauteed chicken sausage, and steamed broccoli. We also make baked chicken in a Greek marinade about once a week, which we keep in the fridge for making salads or Buddha bowls.

8:30 PM: Nighttime is when I start to get snacky! I don’t follow food rules, so I let myself eat when I’m hungry, as long as it’s not so close to bedtime that I’ll get a stomachache. If I need something sweet, I like So Delicious Cookie Dough Ice Cream made with coconut milk. Or, for something savory, I might pop a bag of Skinny Pop pocorn to share with David or eat some Garden Veggie Good Thins made from rice — which are now, thankfully, gluten-free! On cold days, I usually end my day with a cup of black tea and almond milk, but those days are getting fewer and farther between now that it’s summertime.