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!

MRI for Deep Infiltrating Endometriosis: What to Expect

When I first started this blog, I wrote a blog post about my upper endoscopy, which was a big hit with my readers. As a patient, it can be difficult to know what to expect from a procedure you’ve never had before. Many people turn to hospital websites and clinical YouTube demonstrations for answers, but these do little to assuage the anxiety about the procedure.

What always helps me is hearing from someone who’s been through it themself — which is why I’m taking the time to write about my MRI experience as an endometriosis patient. As of right now, laparoscopy is the only way to definitively diagnose endometriosis. However, a doctor might recommend an MRI if they suspect deep infiltrating endometriosis (DIE), a form of endometriosis where the endo implants deeply penetrate the healthy layer of tissue beneath.

An MRI can help doctors determine the location of endo implants to help plan for laparoscopic surgery. Because laparoscopy is both a diagnostic tool and a treatment, locating lesions ahead of time allows your surgeon to prepare, rather than flying blind. Cases of DIE are also more complex than the more common type of endometriosis, which is confined to the first 5 mm of tissue. Surgery for DIE may require careful planning. If the endo implants infiltrate nearby organs like the colon or the ureters, specialized surgeons may need to be brought in to consult on the best way to approach treatment.

Before my MRI, I had a lot of questions about what to expect. My questions weren’t just about the procedure, though — I also wanted to know what my MRI would tell my doctors about my endometriosis. After all, women are already questioned and oppressed in the medical system. I needed to learn everything I could so I could be my own best advocate for my care. At the end of the day, you know your body best, so if you’re certain something’s wrong, it’s important to keep pushing for answers.

MRI and Endometriosis

First, let’s talk about the role of MRI in diagnosing endometriosis. MRI on its own is not a diagnostic tool. The only definitive way to diagnose endometriosis is via diagnostic laparoscopy, a minimally invasive surgical procedure (known as “keyhole surgery”) in which a camera and surgical instruments can be inserted into the body through small incisions in the lower abdomen.

So, why might a doctor order an MRI for suspected endometriosis? MRI is reliable in diagnosing DIE, when endo implants exceed 5 mm in depth. DIE is found in about 20 percent of patients with endometriosis. As we mentioned previously, knowing whether or not to expect DIE — and where the DIE is located — helps your doctor prepare for surgery. MRI is also much less invasive than laparoscopic surgery, so if your endometriosis symptoms are mild, you may have an MRI and choose to hold off on surgery in the meantime.

MRI isn’t always a good choice for patients with chronic pelvic pain. When endometriosis isn’t strongly suspected, it may be ineffective, since it’s poor at identifying other causes of pelvic pain. In one study, more than half of women with chronic pelvic pain were diagnosed with unknown, or “idiopathic,” pelvic pain after a diagnostic MRI. 42 percent of patients in this study whose MRI results suggested a diagnostic laparoscopy wasn’t necessary would have benefitted from them.

MRI can reliably diagnose DIE, but falls short in identifying superficial endometriosis. (Despite this name, it’s important to remember that the depth of endometriosis lesions does not correlate with the severity of the patient’s pain.) Superficial endometriosis accounts for 80 percent of patients with the disease, making laparoscopy an essential procedure to officially diagnose or rule out endometriosis. MRI also fails to identify pelvic adhesions, or scarring, in roughly 80 percent of patients.

MRI produces few false positives, but many false negatives. As a result, many women who need care might be denied it after having a diagnostic MRI that fails to show evidence of DIE. However, MRI is superior to other forms of imaging in detecting endometriosis. Transvaginal ultrasound used to be a common tool to diagnose endometriosis, but is less effective than MRI in identifying indeterminate pelvic masses and detecting rectosigmoid endometriosis and endometriosis of the bladder. This is important, because some of the signs of endometriosis — such as irregular bleeding — overlap with those of uterine cancer. In some cases, an “indeterminate mass” may actually be a tumor, rather than an endometrial implant. Because ultrasounds are cheaper than MRIs, however, your doctor might still suggest you have an ultrasound before proceeding to MRI.

There’s only one case where MRI is superior to laparoscopy in diagnosing endometrial disease: adenomyosis. Adenomyosis is a form of endometriosis in which endometrial tissue grows into the muscle wall of the uterus. Because it exclusively affects the uterine wall and can only be seen deep inside the musculature, MRI is superior to the naked eye in detecting adenomyosis. If your symptoms suggest adenomyosis instead of or in addition to endometriosis, your doctor may suggest an MRI to rule it out.

How MRI Works

MRI stands for “magnetic resonance imaging” and uses a strong magnetic field to attract positively-charged protons in the body. In combination with different levels of radio waves, these magnetic forces produce distinct signals used to identify different pathology (or lack of pathology) in medicine.

Soft tissues like muscles, ligaments, and tendons, as opposed to bones, are well-seen on MRI. Different levels of magnetism are used to produce different images, as some organs are best seen at certain intensities. Alternatives to MRI include ultrasound and CT scans. We already explained ultrasound; as for CT scans, they aren’t generally used in the diagnosis of endometriosis and result in exposure to radiation that can become dangerous over time.

Almost anyone can safely undergo MRI. Because of the strong magnetic field used in MRI, however, people with metal implants — such as pacemakers or artificial joints — cannot have an MRI scan. People who are claustrophobic may also find MRI uncomfortable, since the scanner is a small, enclosed space. These people might opt for transvaginal ultrasound instead.

My MRI Experience

When I arrived for my MRI at the Cleveland Clinic’s main campus in downtown Cleveland, I was alone. After checking in with the receptionist, I was ushered into a separate waiting room, where I was the only patient. Another staff member spoke with me about the potential risks of the procedure, checking to make sure I hadn’t had any recent tattoos and that I had removed any metal piercings before leading me into the back to change.

During my MRI scan, I did not wear anything but a hospital gown and special matching pants. These pants were worn in the waiting room, but not during the procedure. I expect pants and underwear would have obscured the imaging, and they would have made it difficult to prepare for the next part of the procedure. After changing, I was ushered into a waiting room with several other patients, each having an MRI for a different reason. Then, finally, it was my turn.

I met with the woman operating the MRI equipment briefly before she took me into the room with the MRI machine. I took off the hospital pants and settled onto a cushioned platform, which slides into the MRI machine during imaging. She helped me get comfortable with pillows and a sheet, and provided me with two syringes of surgical lube to insert into my vagina once she left. This is supposed to help the radiologist see the vagina better in the MRI scan.

Once the radiologist left, I inserted the surgical lube. The radiologist communicated with me over a special microphone while in the other room. After I told her I was ready, she came back to adjust the magnetic plates on the machine above and below my pelvis while I lay back on the platform. This felt heavy, hard, and warm, but not painful or uncomfortable. She also gave me headphones to wear while the machine was running.

When the radiologist left and started the MRI machine, the first thing I noticed was how loud the machine was. The MRI machine makes loud banging, spinning, and clacking noises, which I admit made me feel a little nervous. If they are still loud with special soundproof headphones, I shudder to think how loud it would be without them! But the worst part was when the platform slid into the machine. The last thing she did was insert an IV tube, through which contrast would be pumped later in the scan.

Like a CT scanner, an MRI machine looks like a big tube — but instead of being a small section of a tube like modern CT scanners, it’s much longer. When you’re inside it, it feels much smaller than it looks. My heart began to race with anxiety as I began to feel the claustrophobia, but I used breathing techniques from therapy to soothe myself. I closed my eyes, focused on my breathing, and tried to relax.

The MRI itself was long — about 45 minutes of sliding back and forth in the machine, being asked to hold your breath and then exhale while the machine took pictures — which gave me plenty of time to get used to it. By the end, I wasn’t nearly as shaken as I was at the beginning of the procedure. Unfortunately, the anxiety had given way to boredom by then. If it hadn’t been so loud, I might have fallen asleep — but all I could do during the MRI was think about the small space I was in and focus on my breath. I was the radiologist’s last procedure of the day, so that might be why she didn’t play music or talk to me much during my MRI.

More than halfway through the scan, the radiologist pressed a button, allowing her to remotely inject contrast through my IV. By then, the scan was, thankfully, almost over. She only had to take a few more pictures using the contrast. Best of all, unlike the contrast used during a CT scan, it doesn’t make you feel warm or like you’re “wetting yourself.” It just feels like a normal IV.

At the end, the radiologist gave me plenty of cleansing wipes (an entire package, actually) to help me clean up the 11 mL of lube I’d had to inject before the procedure. She showed me where to retrieve my clothes and a bathroom where I could change and clean up in private. This is almost certainly TMI, but even with a thorough wiping, I still had lube dripping out until basically the next morning. It made the drive home a bit uncomfortable, to say the least — but the radiologist did offer me a couple of thick menstrual pads to help absorb some of the flow. After cleaning up, I was free to go.

I got my MRI results about two weeks later. There was a slight delay due to the fact that my MRI had been just before the New Year’s holiday and fell on a Friday. At long last, I learned from my doctor that my MRI showed no signs of DIE. Its only remarkable finding was that I had several ovarian cysts and a retroverted uterus.

My feelings upon learning this were mixed. I felt relieved that my surgery would likely not be complicated or result in bowel resectioning (my doctor previously suspected I might have bowel endo), yet disappointed that they hadn’t found anything to validate my suspected diagnosis. My doctors reassured me that they still believed I had endo and that surgery was worthwhile, but the words “no evidence of endometriosis,” written on the top of my MRI results, continue to dance through my head even today.

By now, the emotional rollercoaster of endometriosis is probably familiar to you. I can’t promise your MRI won’t bring up these uncomfortable feelings, but I can promise you that it’s not as scary as it seems.

Health / Life Update: Moving to Rhode Island, Rescheduling Surgery + Side Effects from Progesterone

Disclaimer: I am not a doctor and am not qualified to give medical advice. I am sharing my experience as a patient to help you make educated decisions about your own health, but please — consult with your doctor before making any changes to your current treatment plan or routine!

Hello, endo babes! I am always excited to bring you all another health update, but especially excited for this one because it’s also a life update… and sorry, it’s a long one. Who’s ready?!

*pause for dramatic effect* WE’RE MOVING TO RHODE ISLAND!

Back in March, David (my partner whom I also live with), who is finishing medical school this year, participated in the Match and found out his residency will be at Kent Hospital, affiliated with Brown University, in Rhode Island.

We’re both excited to begin this next chapter of our lives together, along with our dog Chandler — but since, as many of you know, I’m originally from Boston, I’m thrilled that I’ll be living just a short hour away from my closest family and friends again!

One of the downsides of the move, however, is that I’ll need to start building a new treatment team for my endometriosis — probably back in Boston, since it’s nearby and the hospitals there are, in my opinion, some of the best in the world. (Not to mention, I’m already familiar with the medical system there, though I hadn’t been diagnosed with suspected endo yet when I lived there.)

As many of you also know, I was scheduled to have my diagnostic laparoscopy for my endometriosis in August 2020. Needless to say, my laparoscopy is now on hold for the time being — not only because of the move, but also because of the coronavirus. COVID-19 has led to a swathe of cancelled surgeries, meaning mine likely would have been pushed off anyways.

I’ve posted a lot on Instagram about how emotional this time has been for me, so I won’t go through all those negative emotions again here. Instead, I’m trying to focus on the positive — which means putting together a new treatment team for my endometriosis and sharing a health update with you.

I’ll also be sharing my (mostly positive, so far) experience taking progesterone, now that it’s been (at the time of writing this) about two months now. In a previous health update, I shared that my doctor started me on norethindrone to help me skip my periods and manage my endometriosis pain until my surgery — and now that I’ve been taking it for awhile, I want to share how I’ve been feeling and the side effects I’m attributing to the minipill.

My Shortlist of Endometriosis Centers in New England

As my fellow endo babes know well, laparoscopic surgery is a delicate procedure that shouldn’t be handled by a general surgeon. It needs to be performed by a highly-trained minimally invasive gynecologic surgeon. But, since there aren’t many fellowships in this incredibly specialized field, the right surgeon can be difficult to come by.

Previously, I planned for surgery with Dr. Lindsey Valentine at Cleveland Clinic’s Center for Endometriosis and Chronic Pelvic Pain. I highly recommend her and can’t stress enough how comfortable she made me feel throughout the stages of scheduling my surgery.

Since we’re moving, surgery in Cleveland will no longer be a practical option, since I’m not interested in (and not even sure I’d be allowed to do) plane travel after having laparoscopic surgery. So, I’m trying to find a new surgeon with experience in minimally invasive gynecologic surgery and in treating endometriosis. After that, I’ll also need to find a new pelvic floor physical therapist, since we probably won’t be continuing telehealth appointments once the coronavirus chaos is over!

Rhode Island doesn’t have any specialized clinics (that I’ve found) for endo or chronic pelvic pain, so I’m turning to my hometown of Boston to take advantage of its world-renowned hospitals. So far, here’s my shortlist of Boston-based hospitals for endometriosis and chronic pelvic pain:

  • Boston Children’s Hospital. Boston Children’s is one half of the Boston Endometriosis Center, a partnership between BCH and Brigham and Women’s. Because I’m 21 going on 22 (and the cutoff for BCH is 21), I’m in an awkward position where I could be treated at either hospital.
  • Brigham and Women’s Hospital. This hospital in Boston is one of the best for a number of conditions and treatments, so I feel comfortable entrusting them with my care. As I noted previously, they’re also part of the Boston Endometriosis Center along with BCH.
  • Beth Israel Deaconess Medical Center. BUT, my top choice right now for endometriosis treatment is Beth Israel’s Center for Endometriosis and Complex Pelvic Pain. Because I’ve been diagnosed with pelvic floor dysfunction and vulvodynia in addition to my endometriosis, I feel confident that their center can treat my case with empathy and knowledge, despite its many complications. They focus on a holistic approach that integrates treatments like acupuncture in addition to traditional medical approaches like laparoscopic surgery and pelvic floor physical therapy.

My Experience with Norethindrone (a.k.a. The Minipill), Two Months Later

Now, for the medication update…. in case you missed my previous blog post on the subject, I’ll fill you in on everything you need to know about norethindrone.

Norethindrone, also known as the “minipill,” is a progestin-only birth control pill. It works to prevent pregnancy by thickening the cervical mucus so sperm can’t pass through, but only works if you take it at the same time each day.

I’m not taking it for pregnancy protection, since I have a Liletta IUD that I’m extremely happy with (but let me know in the comments below if you want me to write a review of my current birth control method!). Instead, my doctor and I decided to layer additional hormones on top of my IUD to stop my periods, since I still get a monthly flow on the IUD.

My doctor figured that inhibiting my menstrual cycle would stop a lot of the negative symptoms I was having, such as horrible ovulation pain and uncomfortable bloating and constipation leading up to my period. So, I agreed to try it — and so far, I’ve been pleased with the results!

Inhibiting periods completely isn’t an ideal long-term solution for endometriosis pain, but I was all for trying a low dose of hormones as opposed to a shot to induce perimenopause — especially in the time leading up to my surgery. Now that my surgery has been pushed off further, I’m especially glad that I decided to start the minipill to manage my endometriosis symptoms, since who knows how long it will take them to squeeze me in now?

I’m pleased to report that my side effects from the minipill have been minimal thus far, and that it’s mostly doing what it promised to do for my overall health and well-being. I get far fewer cramps / muscle spasms throughout my cycle — David and I have both noted that I’ve spent much less time these past two months doubled over in pain — and haven’t had my typical period flow since I started the minipill.

What I have experienced on the minipill has been some mild spotting throughout my cycle (mostly light pink or brownish in color, and extremely light in flow) as well as breast enlargement and tenderness. The breast tenderness has been bothersome since it prevents me from engaging in strenuous exercise. As someone who has struggled with disordered eating, however, the most difficult side effect to manage has been the weight gain.

Previously, I was on a low-dose antipsychotic (which treated my depression by making my existing antidepressants more effective) that caused me to gain some weight — about 10 pounds in two months. I have since discontinued that medication and am happy with my current regimen for mental health. But, since weight gain is also a side effect of progesterone, I haven’t shed the excess weight as quickly as I thought I would after stopping the antipsychotic.

Granted, I do think that most of the weight gain has been in my boobs. As a small-chested girl, this seemed, at first, like a great problem to have — but it hasn’t been great for my wallet, since I’ve needed to replace a lot of my bras. Plus, as I mentioned, the breast swelling has caused a lot of tenderness that has made movement difficult…. I can’t imagine going for even a slow jog in my current state!

You might also be curious about how the minipill has affected my sexuality, since many birth control pills / hormone-based medications can impact sex drive and lubrication, among other things. Well, I’m happy to report that my libido hasn’t changed, but given that it was already low due to my chronic pelvic pain, I’m not sure if the medication has had any effect on it or not.

Still, I do think the minipill has affected my ability to achieve lubrication during sex. As I mentioned, the minipill prevents pregnancy by thickening cervical mucus — and while I’m not taking it to prevent pregnancy, I obviously can’t selectively choose which of the medication’s effects I do or don’t want.

In general, I’ve noticed thicker, drier discharge, similar to what I normally would experience after my period or toward the end of my cycle — only now, it’s all the time. Because the minipill prevents me from ovulating, I no longer have the stretchy, clear cervical mucus that indicates when I’m in my fertile window. This has caused some discomfort during sex, but using plenty of lube helps. I also plan to try the Replens vaginal moisturizer and will let you know how that goes!

Overall, I’ve experienced a few small side effects from the pill — but none of them compare to the benefits the minipill has had on my endometriosis pain. I’m not saying that hormone therapy is right for everyone, but in summation, I think that the pain relief I’ve gotten is more than worth a few uncomfortable side effects.

For me, the side effects of the minipill are definitely not bad enough to discontinue the medication, and the benefits absolutely justify continuing to take it. However, even after two cycles on the minipill, it’s still quite early to tell. I’ll check in a few months to let you know how my experience is going and if my opinion has changed after being on the minipill for a longer period of time!