Can endometriosis really be to blame?
I was diagnosed with endometriosis in December of 2019, but have had a long history of medical problems (since ~ 2005) leading up to this diagnosis. This past year has been a ridiculously rough journey and I'm just not really sure where to go from here. Maybe starting to speak with other women who may have been through similar journeys will be beneficial, or maybe just typing this story will be cathartic. Warning: May be long and contain oversharing of details related to my symptoms.
I have had GI issues for almost as long as I can remember.
When I was ~14 years old I underwent a ton of tests (endoscopy, colonoscopy, gastric emptying test, blood work, x-rays, etc.). Too many to even recall to be honest. I was in abdominal pain essentially all the time. My pain ranged from chronic abdominal pain and bloating to bowel related issues (alternating constipation and diarrhea), to frequent nausea and vomiting. I was in pain every day that I can remember. It eventually became so bad that I had to drop out of high school due attendance issues. It took about a three year period of diagnostic testing for doctors to land on two diagnoses: gastroparesis (slowed gastric emptying) and microscopic colitis. At this point I was essentially given some prescriptions and sent on my merry way. While it took a couple of years, eventually my symptoms did mostly subside (at least I was no longer bed ridden on a regular basis). During this time frame, I was never evaluated for endometriosis or similar conditions (although I was put on hormonal birth control at age 13 due to heavy and painful periods and have been on hormonal bc ever since).
In my early twenties I finally felt quite healthy. I still had bloating and GI related issues, but nothing that was crippling. I was finally healthy enough to receive my high school diploma through dual enrollment in a local community college and went on to pursue a four year undergraduate degree and masters degree! I was living my life for the first time and it was amazing. I picked up yoga and backpacking. I was happy and healthy and on minimal medication (just my hormonal bc at this point). I started a rewarding career.
In early 2019 everything changed.
I started experiencing frequent crippling abdominal pain again. It was initially so intense that I ended up going to an urgent care facility because I was worried I had appendicitis. I had blood work, x-rays and a general exam that ended up inconclusive. The pain continued to persist and would sometimes leave me bed ridden for days. I made appointments with GI specialists and dietitians and once again began to undergo testing. Once again all of my tests (more blood work, parasite testing, colonoscopy, abdominal ultrasound) ended up inconclusive. Initially my GI doc assumed my microscopic colitis from when I was a teenager must have evolved to ulcerative colitis based on my symptoms. We were shocked following the colonoscopy when not only did I not have ulcerative colitis, but I also no longer had micrscopic colitis. My GI system looked totally normal. So I started working with my dietitian to try to address my abdominal pain. Maybe this was all just IBS related? I tried the FODMAP diet for months, nothing changed. I started tracking everything I ate and my pain levels to try to notice patterns. The only pattern I was able to pick up on was that my pain intensity seemed to be cyclical around my periods. I would be in intense pain starting about a week prior, and this would subside a few days after my period. Then I'd be functional for about a week before the cycle of pain started again. I also started to take note of additional symptoms that didn't seem to be GI related (like painful orgasms and frequent spotting). So I brought my medical history and list of symptoms to my OBGYN and started discussing the possibility of these symptoms being related to endometriosis.
Overview of my symptoms.
Just to give folks an idea of what's going on, here is my list of symptoms in 2019: Chronic abdominal pain and tenderness, intense bloating, alternating bouts of constipation and diarrhea, mucus in my stool, frequent urination, complete lack of libido, abdominal swelling, substantial spotting in between periods, pelvic muscle spasms (that almost feel like an eye twitch in my abdomen) pain during sex (but not pain during insertion), painful orgasms (when I can somehow manage to have one). These symptoms substantially affect my every day life. I can no longer exercise because the abdominal pain becomes too intense and I've used up all of my sick leave from work. By around September of 2019 my pain level and duration had started to cause me severe depression.
After a few months of expressing concerns to my OBGYN and continued inconclusive results from GI tests and a pelvic ultrasound, my doc offered the option of laparoscopic surgery for diagnosis (and potential treatment) of endometriosis. She also performed a hystoscopy to check for polyps and take biopsies. In December of 2019 I underwent the laparoscopic surgery and received a positive diagnosis of stage 1 endometriosis. I had 3 lesions (in the culdesac and on my pelvic wall), none of them appearing particularly large. The lesions were removed and/or cauterized. Results from the hystoscopy all came back negative (no polyps or infections).
Now 3+ months after my surgery I am feeling better, but still not good. I still have relatively substantial abdominal pain and have been bleeding consecutively since the surgery. I still am unable to have sex or engage in any sexual contact due to pain from any type of sexual stimulation (it literally hurts for me to be horny...). The surgery did help quite a bit though, as I am no longer in crippling pain that leaves me bed ridden on a regular basis and I am finally able to sleep (almost) through the night most nights. I just visited my OBGYN again about a week ago and was assessed for potential post surgery infections or other complications that could explain my continuous bleeding and continued pain. Nothing out of the ordinary. So my next step is to try Orlissa for the continued pain and switch my hormonal bc from sprintec to loloestrin to see if this helps with the continuous bleeding. I've been on Orlissa for about 5 days now... I also received a referral to a urologist in case I want to pursue additional testing...
I just don't know where to go from here.
Is it really possible that all these problems stem from stage 1 endometriosis? I feel like I've been a lab rat for the last year being subjected to test after test to receive inconclusive results every time. Finally I at least have a diagnosis, but it just doesn't feel like it adds up. I've heard that the stage of endometriosis doesn't necessarily dictate your pain levels... But can all these symptoms really be caused by 3 stage 1 lesions? And the fact that I'm still experiencing pain (although substantially reduced) after their removal is really disheartening. Even if Orlissa helps, I can only be on it for 2 years at my current dose. Then, I'm assuming my symptoms will all come back... I'm definitely considering a hysterectomy and ooectomy in the future...
Has anyone had a similar experience? Based on the severity of my symptoms I was expecting to find out I had implants on my bowels or something as severe. Of course I don't wish this was the case... I just feel like I'm going crazy a bit. How could 3 little lesions cause THIS many problems?
Can anyone relate?
Also, has anyone had any experience with pain related to just sexual arousal itself (not sexual contact)? It feels like I have hot electricity running through my pelvic region and not in a good way :(.
Have you ever experienced any of the following symptoms?