Yesterday I was diagnosed with PCOS. It was a surprise diagnosis.
I’ve had horrible periods since, basically, I started having periods. I would bleed for a month straight or skip my period four months in a row. I spent more time bloated than not. Suspecting endometriosis, which runs in my family, I was unceremoniously put on birth control in an attempt to give me some semblance of control over my internal organs. It didn’t really work. I cycled through birth controls, dealing with side effect after side effect while still flip-flopping between extreme bleeding or no bleeding at all. When I did bleed, I’d be in so much pain that I considered cutting my own uterus out. When I didn’t have a period, I still had bloating, tenderness, and a plethora of other symptoms.
I had a pregnancy with hyperemesis gravidarum, so I didn’t notice much of anything besides nausea and vomiting for nine months. (And residual nausea when I ovulate, too.) However, once my periods started back, everything came right back. I had Nexplanon inserted in 2016, and after that, all my weird symptoms could be explained away as birth control side effects.
Except they weren’t.
After I landed in the ER twice within the span of a year for mysterious abdominal pain, a CT scan found ovarian cysts. I assumed they were functional cysts, but with a family history of reproductive problems, it’s really better safe than sorry. I agreed to see a gynecologist, despite some post-traumatic symptoms I have around OBGYNs.
I saw a gynecologist at a women’s only clinic. I’ve seen a male gynecologist in the past with no issues, but the gynecologist in question was one of the only slightly reasonable people I met during my HG debacle. She had left the clinic I used for pregnancy early on, so I wasn’t able to see her. Still, she had left a good impression. Justin booked an appointment for me and I braced myself.
When I went in, I kind of panicked. I word-vomited at the nurse. I might have cried a little. No big deal though. She was super sweet and explained everything I had told her to the doctor, sparing no detail.
The doctor came in with action plan— but asked me what I wanted taken care of, too. A lot of doctors get so caught up in their own idea of what’s going on that they forget to ask the patient what they want out of the visit. That didn’t happen.
I knew something was going down when I got my ultrasound. The tech was wonderful, and I had actually seen her during the beginning of my pregnancy. The problem wasn’t her. The problem was that she seemed very concerned about what she saw on my ovaries.
When the doctor came in, she looked at the ultrasound for all of two seconds before asking “has anyone ever said anything about PCOS?”
I replied that they hadn’t.
“Well, you have it.”
She went on to explain that PCOS caused things like low grade pelvic inflammation— and that mine was currently “very high grade.” PCOS also caused the mysterious headaches I have been getting after eating, and it’s the cause of the mysterious missing period.
She also drew an illustration of my ovaries, complete with “a happy uterus.” Mine is apparently an unhappy uterus. Go figure.
We’ve got an action plan. It involves reducing my pelvic inflammation and making sure I don’t have anything else compounding the issue. I’ll also be doing pelvic floor therapy, but that’s a whole different story for a post I will never write.
Since my diagnosis yesterday, it’s come to my attention that a large percentage of people I know also deal with PCOS. So, hive mind, I’d love some help. What are your best tips and resources for living with PCOS?