What Does Endometriosis Feel Like?

Over the weekend, I asked you guys on my Instagram if you wanted to hear about what endometriosis feels like or about POTS and heat intolerance. The results were very close, but the endometriosis topic had a few more results (obviously, as this is what I’m writing about). So let’s answer the question: what does endometriosis feel like?

Disclaimer: I only know what my endometriosis feels like. I can’t speak for every endo patient and their pain. So please don’t assume that I speak for all patients!

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What Is Endometriosis?

I’ve talked a bit about endometriosis before, most notably in this post from last year: Endometriosis: The Disease Women Aren’t Talking About. I’ve been living with it since 2016, so I’m speaking from personal experience here. Before we get into what it feels like, though, we have to talk about what it is.

First things first: if you have a uterus, you are at risk for endometriosis. Endometriosis is a disease in which tissue like that in your uterus grows outside of the uterus (x). “With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other” (x).

The Mayo Clinic lists symptoms of endometriosis as painful periods, pain with intercourse, pain with bowel movements or urination, excessively heavy periods, infertility, and more (x). It can take an average of 10 years to be diagnosed with endometriosis, so if you’ve been experiencing any of these symptoms for years and you’re unsure if it applies to you, talk to your doctor!

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My Endometriosis Journey

I developed endometriosis in 2016. My rheumatologist and I decided it was time to try a new RA treatment because my infusion wasn’t working as well as we wanted, but it didn’t work. And unfortunately, when my immune system was running free, I developed endometriosis.

Mine presented mostly with episodes of ovarian cysts rupturing. I would get extremely nauseous for a few days, and then pain would start, which I’ll describe in more detail in a bit. I would end up in the ER with pain and nausea, and ultrasounds indicated anywhere from 2 to 6 ovarian cysts had ruptured. After 4 episodes of this in 3 months (2 in April and then 2 in June 2016), we started searching for answers. How is it that I had never had this happen before and then had 4 episodes in 3 months?

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Unsurprisingly, my doctors weren’t very helpful at first. My PCP was more interested in getting me into a pain clinic than figuring out the reason for all of this. But with help from my parents – especially my dad, as studies show that medical professionals often listen to men more than women – we had an action plan. I saw a GI and a gynecologist, as we weren’t 100% positive what was happening in my abdomen. Additionally, the only way to 100000% confirm if you have endometriosis is through laparoscopic surgery. But with my health, we don’t want to do any surgery unless it there’s nothing else we can do, so we decided to test for everything else that it could be and diagnose via process of elimination. This included a colonoscopy and endoscopy, as I could have had an ulcer, or an inflammatory bowel disease. If you have RA, you have a higher risk of colitis, Crohn’s, or other illnesses involving inflammation in your digestive system, according to my GI doc.

Once all the tests we ran/did came back fine, my gynecologist said that it was time to say that I had endometriosis. Before I found a working treatment, I still had ovarian cyst episodes like those described above, but I was able to stay at home due to prescriptions from my doctors. I found this working treatment in May or June 2017 (I can’t remember which), and since then, I haven’t had a cyst-rupturing episode, but I have a “typical” endo flare. This refers to what a flare for most endometriosis patients looks like, including bad pain, as ovarian cysts rupturing is not considered a “typical” flare.

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What Does Endometriosis Feel Like?

“Regular” endo pain – In a “regular” endometriosis flare (quotes used because regular doesn’t feel like the right word for it, but it’s the closest one), I experience stabbing pain, worse than my typical period cramps were. [See my note below!] On the worst days, I can barely get out of bed, and if I can, I can’t stand up straight from the pain. On the bad days, I need to take medication in order to not be in so much pain I have to stay in bed. On the better days, I can go about my day, but I’m constantly aware of my pain. Just because you can do things while living with high pelvic pain – which is what my better endo pain days are – doesn’t mean that you don’t have endometriosis, so don’t take this as an indicator that you don’t.

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[Note: I didn’t have endometriosis until a few years ago. If your period has always been so painful that you struggle to do things on even one day, talk to your doctor about endometriosis. If it’s so bad that you regularly have to take a day off of work, 100% talk to your doctor and keep pressing them if they shake it off. Endometriosis can do real damage to your body, and you deserve a medical team that will help you do something about it.]

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Ovarian cysts rupturing – One element of endometriosis is that it can create ovarian cysts (x). Every body with a uterus and ovaries has created many ovarian cysts over their life, and often they disappear on their own (x). But sometimes they rupture on their own in a dramatic way, which is how it has felt for me. A day or so after the extreme nausea – and I mean extreme, like I barely ate a bowl of cereal a day and I needed to be cold so the nausea would be better – sharp, stabbing pain started in my lower abdomen. It feels like someone has taken an chisel to my abdomen. I would sob in the ER, and I have a very high pain tolerance. The pain comes in waves as my body absorbs the fluid that was inside; it would get a little bit better and then it wouldn’t. Anyone who has ever had a cortisone injection in a joint will be familiar with the pain that comes with reabsorbing scar tissue that was broken up by the steroid, as well as the steroid itself. It takes days to fully recover, as does recovering from ovarian cysts. Sometimes I’ve had multiple rupture in a 24 hour period, and others it has taken longer.

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How do you know that it’s an ovarian cyst? The only way to definitely know is through an ultrasound, which will show the fluid from the cyst and if there are any other cysts. It is important to go to an urgent care facility (if not an ER) because there’s a lot of important stuff in your abdomen. So if super sharp, stabbing pain comes out of nowhere, at the very least call a doctor who can advise you of what to do.

What To Do When Chronic Pain Becomes Too Much

How I cope with it – First and foremost, I needed to get on a treatment that stopped ovarian cysts from rupturing. The birth control pill wasn’t enough to stop it; I needed to get on a birth control injection. There might be other endometriosis damage in my body, which we can’t really do anything about, but the biggest issue to my quality of life was ovarian cysts. When I have ovarian cyst episodes, I take medications my doctor has prescribed me, including those for pain and nausea. I also try to be in as cold a room as possible, which helps my nausea. I try to drink lots of fluids, and to eat at least a little bit.

When I have “typical” endometriosis flares, I use a heating bad and try to wear very comfortable clothes. I also have a lot of bloating in these flares, and since they also have abdominal pain, I need comfortable and loose clothes. Additionally, I take my usual anti-inflammatory medications.

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What else would you like to know about endometriosis?

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