One of the joys of having an inflammatory autoimmune disease like rheumatoid arthritis is that it can create other diseases. For me, the first “created” one was fibromyalgia, which I developed my sophomore year of college. Then in 2016, I developed endometriosis when I tried a new arthritis medication. The medication didn’t work, my immune system went wild, and I developed a new condition.
The thing is, I had heard about endometriosis before online, but I didn’t know anyone who had it – at least, I thought that. It turns out I know several people who have it, but people just aren’t talking about it publicly. It’s part of the whole we-don’t-talk-about-things-involving-the-uterus thing we have going on as a society. And don’t get me wrong; like with all illness or conditions, it is up to every individual on whether or not they want to share their medical history. But since endometriosis involves the uterus, many people who have it feel uncomfortable talking about it, including myself.
(Note: anyone who has a uterus can have endometriosis! You don’t have to be a woman to have it.)
What is it? Endometriosis is a conditions where the tissue like that that egrows in the uterus grows outside the uterus (x). It usually means the tissue grows around the ovaries, fallopian tubes, and the area lining the pelvis. The problem is that this tissue acts like regular uterus tissue and breaks down and tries to leave the body during a period, but since it’s not in the uterus, it doesn’t have anywhere to go, which causes lots of pain. And if it’s involved with the ovaries, it can create ovarian cysts. That’s how I got diagnosed – I started having episodes where 3-7 ovarian cysts ruptured over a space of 2ish days (like, I was in the ER 4 times in 3 months). They ruled all other possible causes out and realized that I had endometriosis.
Endometriosis can also cause scar tissue in the areas around the reproductive organs, and it can affect fertility. 30-50% of people with endometriosis have problems with fertility (x). It usually affects people during their reproductive years (which, unfortunately for those of us who live with it, can be 30+ years). 176 million people with uteruses in the world have endometriosis, including 1 in 10 people with uteruses in the US (x).
What does it look/feel like? Lots and lots of pelvic pain while having your period. Part of why I’m writing this now is that I’ve been having an endometriosis flare for 4 weeks now, which I’m very annoyed about. I’ve been having abdominal pain and nausea mostly and a period when I’m not supposed to be having one. According to the Mayo Clinic, other symptoms include painful sex, painful bowel movement or urination, long and heavy periods, nausea and/or vomiting, and, as mentioned, infertility (x). Like with all chronic illnesses, you might have all of these or just one.
How do I know if I have it? You’re probably (hopefully) not going to start having endometriosis symptoms with a ton of cysts rupturing, so ask yourself some questions: Is your period really heavy? Are you having monster cramps? Are you also super nauseous? I think it’s also helpful to think about this in comparison to previous ones you’ve had because all of us who have periods know that they can fluctuate month-to-month. So ask yourself if your symptoms have changed over the past year or so. Unfortunately, the average patient goes 10 years from symptoms arriving to diagnosis (x). (The one benefit of starting things with cysts is I got diagnosed within 9 months.) If you have always had really heavy and painful periods – the point where you have to stay home generally for a/some day(s) of your period – it’s worth looking back at that symptom list and asking your gynecologist if you might have endometriosis. Because you can go on medication to help your symptoms if you have endo!
What are treatment options? Let’s talk about 2 different types: overall disease management and symptom relief when having a flare. For the first, birth control is probably the biggest option. This can be everything from the pill to the IUD or injections. You might need to go on more than one form, which is what I have to do. These medications reduce the hormones that cause the tissue to be built (x). Additionally, some people need to have laparoscopic surgery to remove the tissue if it is causing large problems (x). By the way, both of the sources that I’ve used in this post make it clear that having a hysterectomy will not cure endometriosis, which is a little piece of false advertising I’ve seen (x, x). (If you are on Rituxan like me, do not take Lupron. I had a bad interaction and was hospitalized for 5 days and had symptoms for 2 months.)
Now let’s talk about the treatment options for when someone is having a flare. Like with “regular” periods, a lot of the standard treatments can help, like heating pads, hot water bottles, and NSAIDs like ibuprofen. In my case, I have needed to put my heating pad on a higher setting than usual now that I have endo. You can also try treatments like yoga or acupuncture. Yoga helps your muscles and the meditation aspect can help you mentally deal with it. In my experience, acupuncture really helps muscle pain, but make sure you’re seeing someone who is licensed and has experience with endometriosis patients.
Additionally, Center for Young Women’s Health has a lot of helpful tips for managing your life with endometriosis. Many of these things are things that I already do for my other chronic pain conditions, but if endometriosis is your only or largest (in terms of magnitude) condition, then it could be helpful to check out.
What’s the best advice you’ve ever gotten to help with your endometriosis?
Like this post? Check out these:
So You Were Diagnosed with a Chronic Illness: What You Should Do Next, Why the Traditional Pain Scale Needs To Go, Preparing for Chronic Pain Medical Appointments + Free Printables
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Great information! I have endometriosis as well, and yep, it was the cysts bursting that helped diagnose me too. When I was in college, I was amazed if I started to mention something about endo how MANY people chimed in about having it or started discussing how they thought they might have it. Going along with what you pretty much said, for a while there, I thought I didn’t know anyone else who had it but I suppose all it takes is a bit of chatting to find out how…unlucky?…we are haha. Thanks for writing this, Kate!
I know so many women with endometriosis. It is astounding that it takes 10 years (“just take Advil and use a heating pad”) to get diagnosed. Would it kill the doctors to rule that out sooner, rather than later?
I don’t know if you saw the Buzzfeed video where a bunch of their employees who are women talked about how long it took for them to get diagnosed or get pain taken seriously, but one woman had two cysts rupture over the course of several years. The first doctor didn’t even run any tests. She just saw the button on her jacked in memory of a teammate who passed away and told her that she was simply sad and to say goodbye to her friend and trashed the button!!!! She threw up from pain!
I can’t imagine. I’ve done strange things from pain, but I haven’t thrown up yet.
I am so sorry that you developed it. And it sucks that the medicine didn’t even work.
Women need to talk about this more and push their doctors for a diagnosis when the pain isn’t normal, which I know you’ve written about how to talk to a doctor in the past!