Endometriosis During Pregnancy: My Experience So Far

Because of the prevalence of inaccurate information I see about endometriosis during pregnancy, I wanted to share a bit of my personal experience as a woman with endometriosis, who happens to be pregnant + also to pull together some of the most up-to-date science on what it can feel like to have the disease and carry a baby.

One of my biggest fears was that my endometriosis would keep me from getting pregnant. Honestly, my brain never even wondered how my endometriosis during pregnancy would behave because I was so caught up in the question of whether or not I’d ever have the privilege and experience of carrying my own baby or if my disease would rob Mark + I of the chance to have our own kids. (You can read more about how we ended up pregnant in my first trimester recap!)

Truth be told, there is still a lot to learn about infertility and endometriosis. But if you need to hear one thing from me today, let it be that just because you have endometriosis DOES NOT MEAN that you will struggle with infertility.

An estimated 30–50% of women with endometriosis are reported to have difficulty, but that leaves 50-70% who do not. I worried for years + we got pregnant on our first accidental try. What I’m trying to say here is to not claim an outcome that isn’t yours to claim yet. You are not a statistic, you are a unique human.

That being said, if you are struggling with infertility (defined as having trouble conceiving a child after 12 months or more of unprotected sex), you could have endometriosis. Roughly 40% of women struggling with infertility will be found to have the disease if they undergo any sort of diagnostic surgery…even if they have no symptoms! The good news is that surgery can often lead to better outcomes! There is hope for you, I promise.

Before we get into the real meat of this post: my endometriosis during pregnancy experience, I want to just make sure that I acknowledge the pain associated with infertility + don’t just brush it off with science. There are so many women I know and love (and I’m sure many who I’m not even aware of) are desperate to have children + are really struggling. You have my heart + my prayers if that is you + please feel free to not read any further if you’ll find it challenging to hear about someone else’s pregnancy experience. I want you to protect your heart too!

Pregnancy as a treatment for endometriosis?

One of the reasons I really was inspired to share here was because of the sheer number of people who said something along the lines of, “It’s so good you’re pregnant! That’ll cure your endometriosis” or “at least you’ll get a break during your pregnancy!”to me. And I know the heart behind those words is so good + the intentions were to encourage, but it’s actually something so dangerous to say + I’m going to tell you why.

But before we get there, friends, I need you to know that this belief is prevalent not just among women, but also in the general medical community. Women are told all of the time by their DOCTORS that they could experience some relief from their symptoms if they just got pregnant. Which, firstly is such an integrity issue to me. Can you imagine encouraging a woman to bring another human being into the world just so that she gets a few months of relief from her disease? I honestly am shocked by it. And some of these women are young, vulnerable + desperate. They may choose to listen to the advice from a medical professional only to end up with a child that they may or may not be ready for.

It’s also so problematic because it’s scientifically false.

While some women may, in fact, have a temporary relief of symptoms, many others can experience an increase in their problems. In fact, some “imaging and histopathology studies of endometriotic lesions during pregnancy show that they may grow rapidly during pregnancy” (Leeners & Farquhar, 2019). Pregnancy will not treat or cure endometriosis. Research has stated that “women aiming for pregnancy on the background of endometriosis should not be told that pregnancy may be a strategy for managing symptoms and reducing progression of the disease” (Leeners et al., 2018).

Besides being a misleading statement encouraging women who may/may not be ready to have children, I actually believe there is more innate harm in continuing to perpetuate this false belief.

When I shared this scientific literature on instagram, I had a dm that absolutely broke my heart. A women who was pregnant was literally weeping with relief. She said she had been sicker than ever during her pregnancy with her endometriosis symptoms + she believed it was all in her head. She had been told she’d get better. She wasn’t prepared for this potential scenario. Imagine how different her pregnancy experience could have been if she’d known to prepare for the possibility of remaining sick…or even getting sicker. It could have at least spared her so much emotional turmoil.

My hope is that the truth about endometriosis + endometriosis during pregnancy will become more accessible and more accurate as more of us learn + share the truth!

My experience with endometriosis during pregnancy

In full transparency, my endometriosis was very much under control before I got pregnant. After years and years of battling severe sickness, I had finally found a system that worked for me + I was feeling great.

I had found more food freedom, time for rest, less stress + less pain + I am so grateful for that time that I had.

After getting pregnant, I had a few weeks where I felt very much normal. In fact, up until week 6 or 7, I didn’t even really feel like I was pregnant at all. But almost overnight, my body took a turn.

Now I will say, there is no way for me to differentiate which of my symptoms are pregnancy related + which have to do with endometriosis during pregnancy. So, I’ll do my best to highlight them one way or the other. But remember, this is MY experience, which is completely unique to me. Just as endometriosis looks different for every woman, so will her endometriosis during pregnancy.

And also, it bears repeating: I am not complaining about these symptoms, per se. They’ve been a challenge + not that fun, but I know God is doing amazing things in my body + that there are so many lessons to learn during this season of waiting, resting + watching changes happen.

However, I also want other women to have the information that I didn’t, in hopes that someone else may have a more prepared or a better experience because of my pregnancy experience.

Symptoms

Because I already went into detail about the early symptoms I experienced in my pregnancy in my first trimester recap, I’ll link that here for you to read if you’re interested. Things like sore breasts and food aversions are almost certainly related to pregnancy hormones + I really don’t believe my endometriosis has anything to do with them. However, there are some things that I’ve struggled with that could really go either way:

fatigue: my fatigue and weakness has been off of the charts. This really isn’t uncommon for pregnancy, so it might not be endometriosis related. However, we do know that fatigue is one of the most common symptoms that women with endometriosis complain of, so there is a chance that my body is experiencing a compound effect of both, ha! It definitely isn’t helped by an annoying very-pregnancy-contingent symptom: pregnancy insomnia. I’ve started drinking tart cherry juice to increase my natural forms of melatonin to help with this a bit, hopefully!

how I’m managing: I’m practicing what I learned during my chronic illness journey. I’m listening to my body + changing my routine, even though it’s been a huge mental challenge to take 10 steps back in my strength + fitness due to lack of regular exercise. But sometimes, you just have to focus on what you want most + I want most a healthy pregnancy + a non-distraught mama…so more resting is it!
constipation: constipation was one of my monthly symptoms of my endo + even something that plagued me for over a year before I was diagnosed. In fact, my chronic constipation was a huge contributing factor to my eating disorder. Women with endo often struggle with digestive distress including both constipation and diarrhea. Before I got pregnant, my digestion was the most normal it has been in recent memory. It was AMAZING. However, as soon as I got pregnant, my digestion slowed to a halt + I mean a HALT. It has been incredibly frustrating, painful + could be tied to pregnancy hormones which do slow down your digestion to get more nutrients to the baby. However, again, I wonder if my issue could be compounded by my disease.

how I’m managing: after increasing my fibre intake, water intake + taking magnesium to no relief, I have finally been prescribed an electrolyte/stool softener combo to take every day + its….kind of helping. I still am not having normal bowel movements after taking it for weeks, but it’s SO much better than never going to the toilet.
bloating: in line with the above, my bloating has been off of the charts. Bloating is one of the hardest symptoms for women with endo because it’s so unpredictable. I used to joke that I looked 6 months pregnant a few times a month…and I still do, even though I’m only currently 16 weeks 😉 The bloating doesn’t look nice, which isn’t fun, but the more annoying part of it is the pain that it causes. The bloating associated with pregnancy has been even more extreme that what I used to have from my endo alone. It often wakes me up at night because my belly feels like it might pop.

how I’m managing: firstly, get some really comfortable short or pants. Sometimes there isn’t much that can be done, especially if it’s being caused by something like pregnancy hormones or constipation. It takes time for it to pass. I’m also trying Binto’s new Bloat Aid supplement before meals to see if that aids at all in the gas (the code JESSICAEATS will save you 20% if you struggle with bloating + want to try it too). Abdominal massage can also help relieve some gas if that’s what’s causing the issue!
bladder pain: many women who are diagnosed with endometriosis are also battling interstitial cystitis which causes a very sensitive, sometimes painful bladder. Now, imagine coupling that with a pregnancy bladder + you’ve got some real sensitivity, ha! My urinary pain, pressure and frequency have led me to be tested for a UTI 3 times since the start of my pregnancy + it’s always been negative. I have to assume that my extra pain all come from IC that’s just being exacerbated by the pregnancy.

how I’m managing: for bladder pain/problems, there really isn’t much that can be done. I’m drinking lots of water (roughly 100oz since your needs increase with pregnancy) + some with my fav Ultima electrolytes to ensure I don’t throw off my electrolyte levels. Otherwise, I’m trying to be mindful of not using the bathroom unless I really have to because frequent bathroom use can actually mess with your bladder’s alarm signals so it tells you it needs to go when there is actually plenty of free space remaining.
leg pain and weakness: this symptom has been the scariest + the most frustrating for me. I have shared before how my endometriosis used to cause a symptom I referred to as “cement legs” when my legs felt heavy + painful + walking felt really difficult. It would happen every month + was always very challenging. Since week 7 of pregnancy, this symptom has been constant for me. I am too weak to do a lunge or stand on one leg to change pants without one leg giving out. Walking is very slow + very hard for me. My friends have even mentioned that my walk has changed. I believe I’m shifting my centre of gravity to try to make up for the leg weakness.

how I’m managing: because I’m so early in pregnancy + this feels like such a worrying issue, I have actually booked in a consultation with a pelvic floor/prenatal physical therapist. This is a big expense, but one that feels really worthwhile for me. My health, posture + pain levels are really integral to not only how best I show up for my life now, but also my health during delivery + how I’m able to care for my baby after.
nausea: another lovely symptom that bridges the gap between endo + pregnancy, ha! I have experienced way more nausea with pregnancy than I did each month with my endo! I’ve been so lucky to not throw up, but I’m currently 16/17 weeks pregnant + there’s still some nausea present. Honestly, I think this one is probably just pregnancy, but I figured I’d throw it in here since I know so many of you struggle with it.

how I’m managing: my biggest tip here, whether pregnancy or endo related, is just do whatever you have to do to survive. For me, I currently have to eat as soon as I wake up + snack as often as I can throughout the day. Before pregnancy, I drank a lot of bone broth when I was nauseous + whatever else would help. Don’t feel guilty for doing what you need to do to feel okay.

As I said when I started today, this is just my experience + not scientifically verifiable in any way. But, my goal here isn’t to impact the scientific literature or findings, it’s to make sure that you feel like you have someone leading you through what it could look like to experience endometriosis during pregnancy.

Obviously I would never trade my healthy pregnancy or baby for a relief of symptoms, although I can understand how someone might feel that way if they weren’t prepared for how ill they might feel. There is no shame in grieving over sickness or the loss of life as you knew it before pregnancy. If I’m honest, I just had a good cry this morning at 3AM on the couch SO TIRED while awake from my pregnancy insomnia + my stomach felt like it was going to pop from constipation/bloating. Sometimes feeling the feelings is the right + healthy thing.

There is the possibility that you could be one of the women who experiences relief from your endo during your pregnancy…or you might be someone like me, who’s pregnancy symptoms are quite similar (and mildly worse) than your endo + that’s okay too. There are ways to cope, people to help you + so much joy waiting on the other side if you choose to walk down this path.