First I just want to clarify, I am not a doctor. None of this is meant to be medical advice. I also am not trying to put down the medical community as I know this disease is still not well studied.
This is my journey with endometriosis and I don’t judge anyone for the choices they have made with their own journey. I only hope by sharing my own experience, others can relate and know they’re not alone or maybe learn something new on their own journey.
Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus grows outside your uterus. It most commonly involves your ovaries, fallopian tubes, and the tissue lining your pelvis. (definition from Mayo Clinic) Because this tissue grows outside your body, it doesn’t “exit” during your monthly period and instead builds up and becomes irritated and causes scar tissue. As you can imagine, this can cause pain and irritation. And by irritation, I mean chronic pelvic pain every day that will make you start to hate life… Just kidding, kind of.
I have read that it takes women ten years to get diagnosed with endometriosis.
I can tell you that for me, that is exactly true about my journey with endometriosis. I have had terrible periods since my very first period. As a teenager, I got migraines with every period. As I got into my twenties, migraines were accompanied by extremely painful cramps. I tried once in my early twenties to tell the nurse practitioner that I saw regularly about the pain and wondered if it could be endometriosis. She told me no, I would be in much more pain but what we could do was try to increase my birth control to help and prescribe me prescription-strength ibuprofen. Every couple of months when this didn’t work, they would prescribe a new birth control pill with more hormones to try to solve the problem.
A few years later, I tried to bring it up to a new nurse practitioner I was seeing at a new office. She again told me it was unlikely that endometriosis was the cause of all my pain and again suggested a higher dose of hormonal birth control. I started to feel like I was crazy and maybe just a wimp. Was this just the way periods were? I had multiple friends tell me they had no cramps or little pain with periods and I thought- am I exaggerating?
Does everyone spend a few days curled up with the heating pad and I just am the only one complaining?
Eventually, I made the decision to go off birth control because it was making me so sick. This is really glossing over my journey of getting to the decision to go off birth control. I’ll save that story for another day, but let’s just say I went through multiple tests to try to figure out what was causing my digestive issues and eventually came to the conclusion to go off birth control. I’ll also add that no one told me but I have learned digestive issues can be a symptom of endometriosis.
Although birth control is not a cure for endometriosis or a perfect solution to deal with it, it can lessen some symptoms and for me, going off it allowed the endometriosis to take over. But even with my excruciating pelvic pain and periods that were getting longer and longer and heavier and heavier, because of my previous experience of being told there is no way I had endometriosis, it honestly didn’t cross my mind.
I wasn’t until after an emergency room visit at age 30 that I even first heard the words “endometrial tissue”. I had been in severe pain and after my husband forced me to go to the emergency room, the doctors determined I had a cyst on my ovary. They gave me some pain meds, told me to take it easy for a few days, and said that my body would absorb the cyst and to check in with my gynecologist. I had actually been struggling to get pregnant at the time and so when I brought up the cyst to my ob/gyn I had been seeing to discuss fertility issues he said that the cyst was not a big deal and was not related to my trouble getting pregnant. So again, I moved on believing I did not have endometriosis.
Let me pause here for a minute and say, infertility and fertility issues are a symptom of endometriosis.
A few months later, I got pregnant, and at my first ultrasound, low and behold what showed up, not only a fetus that was healthy and looking good but that pesky old cyst that my body was supposed to have absorbed 6 months earlier. I was advised it should not cause issues with my pregnancy (and it did not) but that they would keep an eye on it. After giving birth I spoke with a (new) ob/gyn about the pain I had with periods and asked about the cyst. She ordered an ultrasound and found my cyst had grown and it was in this discussion of my ultrasound results that I first heard the words, “Well its a cyst caused by endometriosis”. When I looked shocked she said, “No one ever talked to you about this before? Haven’t you been told before you have endometriosis?”
This was age 31. I had my first period at 14. 17 years on my journey with endometriosis.
This was only the start of my endometriosis journey. Treating endometriosis is just as much a battle as getting diagnosed but if I can share one piece of advice from this experience, it would be to advocate for yourself. Don’t give up if you feel like something is wrong. See a new doctor. Find a doctor you feel comfortable with. Don’t let a doctor belittle you for the way you feel. I’m not saying doctors are never right, but you truly are the number one expert on your own body. And it is essential that you feel comfortable that your doctor is listening to you and taking your concerns seriously.