You may have noticed that I’ve been quiet on the topic of my gut health recently. That’s because, well, my doctor and I aren’t quite sure if my gut’s actually the problem!
If you’ve heard of endometriosis, then you know how painful and debilitating this condition can be. (If not, I highly recommend reading The Doctor Will See You Now by Dr. Tamir Seckin, with a foreward by Padma Lakshmi — they co-founded the Endometriosis Foundation of America, or Endofound.)
As it turns out, as many as 90% of patients with endometriosis experience gut involvement: for 1/3, this takes the form of constipation and for 2/3, diarrhea. For other patients, like me, endometriosis leads to alternating constipation and diarrhea — which is also common in IBS, making it an easy disorder to confuse with endo.
While my diagnosis of endometriosis hasn’t been confirmed by my doctor yet (an exploratory laparoscopy is required for an “official” diagnosis, which I haven’t decided if I want to do just yet), the diagnosis makes more sense than IBS given my history of gynecological problems, including extraordinarily painful periods and ovarian cysts. And given that 60% of endometriosis patients were told at one point that “nothing was wrong,” I think it’s fair to say that endometriosis is the most likely explanation for my symptoms, even without formal diagnosis.
Here’s how we came to the conclusion that endometriosis, and not IBS, was the main cause of my gastrointestinal symptoms.
My OB-Gyn Appointment
I didn’t know endometriosis could cause gastrointestinal symptoms until, one day, I read about it by chance. After that, I did all the research I could about endo, and took the SpeakEndo Symptom Quiz to see what the odds were that I actually had it. My results raised a red flag — and the more I learned about endometriosis, the more I identified with its symptoms and disease progression. So, I took SpeakEndo’s advice and made an appointment with a local gynecologist.
The gynecologist told me, flat-out, that she can’t diagnose me with endometriosis without doing an exploratory laparoscopy. Because my period pain is well-controlled with my Liletta IUD, that doesn’t seem like a necessary action right now. However, I’m still having pelvic pain between periods, in the middle of my cycle, which isn’t normal. I believe this pain is due to a history of ovarian cysts, and Monday, I will have an ultrasound to confirm.
A friend from my mental health IOP who also has endo told me that ultrasounds can often pick up on signs of endometriosis, too. My hope is that, in addition to spotting cysts, the ultrasound shows some sign of endo that makes my OB-Gyn take my symptoms more seriously. This could lead to me having the laparoscopy, or to her diagnosing endometriosis as the most likely option. However, as of right now, it’s seeming like my GI problems are a result of endo, rather than of IBS.
If I have cysts on Monday, the doctor also plans to add a progesterone-only birth control to my medication regimen to help stop the development of the cysts. This will help mainly if the cysts are simple cysts that develop from a dominant follicle during my menstrual cycle, so I guess this medication will also help the doctors sort out whether the pain is due to endometriosis or to simple ovarian cysts. Either way, endometriosis makes it much more likely to have cysts — but more on that in the next section, where I talk about the symptoms I experienced that made me suspect endometriosis.
How I Suspected Endometriosis
When I was 10 years old, I got my period — and I didn’t get my period the way other girls do. Most girls I knew were getting periods every 30-60+ days when they first started. But me? I was getting mine every two weeks.
As I got older, my periods became heavier. By the time I was 12, I was having such painful periods that I had to take NSAIDs for them. Still, it always took them more than half an hour to work — and even then, they only dulled the ache in my belly and back, never completely getting rid of it.
When I turned 14, I started keeping Aleve at the nurse’s office at my high school. I had to visit her anytime I got period cramps. More than once, I got cramps that debilitated me, utterly and completely. One time, in English class, I got such bad cramps that I had to run out of class to throw up. I threw up several more times in the nurse’s office while waiting for my mom to come. Another time, I was taking a state-mandated standardized test when I had to excuse myself to take some pills. My teacher at the time told me I looked like I was going to pass out.
Finally, I’d had enough. So, when I turned 15, I decided to ask my doctor about the pill. I started oral contraceptives as a way to manage the period pain — and it worked, at first. Then, at 17, I lost my virginity and began to experience painful sex (another symptom of endometriosis). Switching from the pill to the IUD helped manage the pain, but didn’t completely get rid of it.
Now, even with hormonal contraception, I still have deep pain in my belly sometimes while having sex and cramps that require the use of NSAIDs, which is another sign I might have endometriosis. On top of it, my worsening GI symptoms and intermittent pain due to cysts also suggest endo might be the true cause I’ve been searching for all this time. But if not for the internet, I never would have suspected it — meaning there’s a clear need for GI doctors to brush up on their knowledge of endometriosis, and of gynecological issues in general!
So, What’s Next on Lovely & Lazy?
Obviously, as a chronic illness blogger, I’ve talked a lot about my gut health and IBS in addition to my experience with mental health. Now that I’ve discovered I probably don’t have IBS, I won’t continue to blog about it — however, I do plan to keep Lovely & Lazy (both the blog and the Instagram account) going. I will simply be talking more about menstrual health and endometriosis than about IBS, and may increase the number of lifestyle blog posts I do to make up some of the difference.
After reading this blog post, if you suspect you may have endometriosis (or know you have it already), there are many resources you can seek out for help. If your period pain doesn’t disappear with NSAIDs or causes you to miss work or school, or you’re experiencing any pain at all during sexual intercourse, you may want to see your doctor and/or consult these resources on endometriosis.
Prepare for Your Appointment | SpeakEndo
Find an Event Near You | EndoMarch 2020
Anti-Inflammatory Diet for Endometriosis | St. Louis University School of Medicine, OB-Gyn
Endometriosis Pain Management for Adult Women | Brigham & Women’s Hospital
Endometriosis Fertility & Pregnancy | Jean Hailes for Women’s Health