As I sat in the doctor’s office dressed in nothing but a well washed hospital gown, the paper on the exam chair crinkling under my thighs, I gazed at the pictures of my organs the doctor was clicking through on the computer screen and thought about how, 9 years ago, another gynecologist in a different office with a different crinkly-papered chair and worn gown and sheet draped over my thighs told me my ovaries were a little swollen, that there were some small cysts, but that they shouldn’t be causing me pain.
And yet here and now, 9 long, pain filled years later, 9 years of wonky periods with knife-like cramps and trying every different birth control method under the sun. Of two surgeries and countless ultrasounds and MRIs and CT scans and blood tests and vaginal exams and misdiagnoses and GI medicines and oceans of NSAIDS taken and hours lost to heating pads and tears. 9 years of canceled plans and doctors telling me I was a mystery. And here and now my doctor was gesturing to the picture of my ovaries, the left one the size of an almond, the right one the size of a lemon, so large it filled up most of the screen.
“It absolutely causes pain,” she said, pointing to the, in her words, “absolutely enormous” ovary on the screen. “So often women come into the emergency room thinking they have ovarian torsion or endometriosis and we cut them open to find they have ovaries that look just like this.”
This is what PCOS does. It causes your ovaries to create follicular cysts rather than release an egg during ovulation. And the cysts do not disappear, they stack up until your ovary is so swollen it no longer looks like an ovary, but a misshapen lump that is slowly taking over your entire pelvic cavity like a creeping blob.
Why the hell would people think that isn’t painful? If your stomach swelled up to 5 times the size it was supposed to be, or your colon or your appendix, it would be an emergency. You would be rushed through the ER, a critical patient.
But my ovary, growing larger on each subsequent ultrasound scan, studded with more and more follicles like barnacles clinging to rocks, was dismissed as simply “swollen,” the cysts too small to be mentioned (literally- my ultrasound results have been suggesting PCOS since 2013, but no doctor uttered the words to me until 2020. That’s 7 years.)
According to the Mayo Clinic, Polycystic Ovarian Syndrome affects 1 in 10 women and people with ovaries, and is “a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. The exact cause of PCOS is unknown.”
When you google PCOS, the key symptoms that are mentioned are irregular periods, infertility, acne, hirsutism (excess hair growth on the face, chest, or stomach), hair loss (from your head) and obesity. And while I do have a few of these symptoms, my main one is pain.
The scientific research on this condition is all related to fertility issues and weight loss. There are brief mentions of intense period cramps and ovulation pain, but not the near daily pain and cramping that I experience. Not to the level of being bed bound and unable to walk, curled in the fetal position and counting your breaths to keep from screaming. Some websites actually list PCOS as a “painless” condition (this makes me want to tear out the already thinning hair on my head in rage.)
None of these scientists are concerned with the quality of life of the women in their studies, beyond how they can make them thinner and able to reproduce.
My doctor, who is a specialist in the field of pelvic pain, told me that she has tried to publish papers on the subject 3 different times and they were rejected flat out. “There is no money in research for women’s pain,” she told me. The journals and institutions only care about fertility. All of the research on PCOS is conducted by fertility specialists, not specialist in pelvic pain.
And yet, millions of women and people with ovaries are experiencing this pain on a daily basis. They are going to hospitals in pain. They are unable to live their lives because they are in pain. Can you think of another condition (with the exception of endometriosis, which often occurs in tandem with PCOS) that effects this many people that is this profoundly misunderstood? That is this under researched?
It is criminal that the only option my doctor is able to offer me is more birth control. That the only answer she has for me is that yes, this happens but we don’t know why or what causes the pain. And no one is looking for answers.
No one is looking. No one is even trying to look.
In recent years, focus and funding has been directed to endometriosis, which is long overdue and a crucial step in the right direction to provide the millions of people who suffer with it relief. When I thought I had endometriosis, before my latest surgery, this was a great comfort to me, that maybe someday someone would find a cure.
But I can’t help feeling bitter, now that I finally know the truth after years of searching.
Life gave me a lemon, but there is no aid coming.
Sarah Levine 
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