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Endometriosis Series, Part 1: My Story

This past weekend I got to spend time with some friends of mine. One is an Occupational Therapist who I have known for a long time now and the other is her husband, a brand new Physician’s Assistant. Both are incredibly bright and are always engaging on friendly debates regarding healthcare practices. Since her husband has been listening to our patient stories for the past several years, we acquiesced and were listening to his recent experiences while working in the ER and Urgent Care department of their small community here in WA. He made a flippant remark about patients coming in with chronic coughs wanting medicine and saying that there is nothing he can really do for them. I interjected myself to give him a different perspective: people are coming to you because of the long-standing issues from constantly coughing. This can range between a worsening hernia, urinary incontinence and frequent pad/underwear changes, to neck and back pain. They want to stop coughing so they can sleep at night, to not go through a steady laundry rotation of soiled underwear, to not have their neck and abdomen hurt from coughing. They don’t tell him these issues- it doesn’t seem necessary then or it’s embarrassing. Surely a chronic cough of two weeks or more is warranted to see the doctor. I told him I empathized, because Urgent Care is not the best resource because they’re doing mild triage, essentially, but when you add all the things that come from a chronic cough, it’s a little easier to understand why they’re there. I told him next time someone comes in with a chronic cough, ask a few other questions and try to make appropriate referrals from there. It still may only be to a PCP, but digging a little further really does make all the difference.

I know this because I’ve been there. I’ve been the patient in the ER with severe right-sided pain, thinking I was going to need an appendectomy. As the doctor ordered test after test, each one coming back negative, I started getting “the look.” You know the one, that this woman might be pain-seeking and looking for opioids. They were baffled because the CT scan for my appendix and gallbladder came back negative. The pelvic exam to assess to see if I had an ovarian cyst was negative. The only positive test was that my white blood cell count was slightly elevated. For all they could see, I was a healthy 26 year old with no imminent threat of appendix rupture or gallbladder disease or gallstones. There was nothing more they could do and they didn’t have any further recommendations except to follow up with my PCP. I was instructed to change back into my clothes and leave the ER. The pain lasted for 2 more weeks, though the intensity slowly lessened over time. I never did follow up with my PCP, I didn’t know of any further diagnostic tests they could order that wasn’t already done and I didn’t want to get “the look” again. That was not the last time I would have R-sided pain but it would be the last time I would go to the ER for it.

When I was 29 years old, the same pain reoccured. I went to my PCP at the time, who ordered a CT of my appendix and gallbladder. Both were negative. I started to feel a little crazy, like maybe there was some sort of psychosomatic event going on. While my PCP didn’t say that outright, you could actively see the wheels turning. I recently had a STI screen that was negative for anything, which ruled out pelvic inflammatory disease. She then suggested a colonoscopy. This seemed a little desperate for even me and I declined that test. I went home, massage my intestines and applied Kinesiotape to the abdomen. Over the next couple of days the pain subsided. I called my PCP and informed her. She still seemed confused as to what it could be.

A couple years later I started putting a lot of pieces together of incidents that started when I was 16 years old and had the pain for the first time. The gynecologist I saw then examined me and said it must have been an ovulation cyst that burst and was painful. A few years later when I was in college, I had to walk out of an exam because the pain was so intense. When I got to my gynecologist the next day, her recommendation was birth control pills, as she noted I had an irregular menstrual cycle.

Not sure if you’re noticing a trend here, but over the course of 15 years, I experienced pain and the best my medical providers could do was rule out diseases and give me hormone-regulating medicine. I wonder to myself if the gynecologist or PCP in my 20’s had even considered endometriosis. My family history is significant as my mother had a history of menstrual dysfunction and infertility. No provider ever asked me of my family medical history beyond heart disease, diabetes and cancer. They probably would have put me on birth control pills as that is still the current medical management of mild to moderate endometriosis. I still have not received a formal diagnosis of endometriosis, but my symptoms fit and I would rather wait to have an exploratory surgery when my symptoms are more severe or if I have significant fertility issues.

This is my introduction to my endometriosis blog series. My story is not too dissimilar to many other women: their symptoms are similar to other things; diagnostic tests come back negative for life-threatening things and they’re sent home; they are put on hormone-regulating birth control pills. I’m not looking for a pity party, but to help people understand that women with these symptoms fall through the cracks of our western medical society a lot of times. I’ll discuss further what it is, treating it, and general support, etc., in the coming series. I wanted to start out with my story and why it is important to me and how it has shaped me as a healthcare provider, especially in women’s health.

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