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 ๐Ÿ™‚

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.