It’s technically been a viable diagnosis since 1935, but polycystic ovarian syndrome wasn’t really part of our medical vocabulary until just a few decades ago — and, sadly, for years and years, many doctors thought women were imagining their excruciating symptoms. But not only is the illness very real, it has very real (and devastating) consequences.
No one is sure why, but rates of polycystic ovarian syndrome (PCOS) have exploded recently. Not only is PCOS the most common hormonal endocrine disorder in women, according to the PCOS foundation, affecting 5 to 10 percent of us, but it is also responsible for up to 70 percent of infertility in women who have difficulty ovulating.
The syndrome is characterized by small cysts that grow on the ovaries (hence the name) and excess testosterone. Even though it’s typically thought of as the “male hormone,” all women do naturally have some testosterone. But in PCOS these levels inexplicably skyrocket, preventing the ovaries from releasing eggs and causing symptoms like male-patterned baldness, acne and excess facial hair. Other symptoms include insulin resistance, weight gain and the inability to lose weight, infertility and serious disruption of the menstrual cycle.
Ironically, the things that help PCOS the most — diet, exercise and moderate weight loss — are the exact things that the illness makes so difficult, trapping many women in what feels like nature’s cruelest catch-22. So, while doctors are learning more and more about this illness, women are left trying treatment after treatment, hoping to find their personal cure and dealing with the fallout however they can. Recently the app Whisper polled their female users about their PCOS “secrets” and what they found shows how dire the situation is (and why we desperately need more funding to study it).
Here are the anonymous confessions of women living with PCOS every day.
1. Sex life? What sex life?
“I have PCOS, which comes with embarrassing body hair. I don’t know if I’ll ever feel comfortable enough to have sex with someone.”
2. You worry all the time about stuff other young women don’t even have to think about
“I haven’t visited my doctor in 2 years for fear that my condition has worsened and they’ll have to remove my ovaries, leaving me barren forever.”
3. The uncertainty is terrifying
“I’m scared I’ll never be able to have that child or that relationship because I’m not ‘normal.'”
4. It makes you question your femininity
“I’m so tired of having PCOS. It messes with my weight, feelings, makes me unable to have a child and, worst of all, makes me feel like less of a woman.”
5. People who “slip up” or “accidentally” get pregnant are triggers
“Every time someone tells me they’re pregnant I get depressed.”
6. It changes your entire life plan
“I found out I have PCOS and have been trying to convince myself that I don’t want kids and a family ever since.”
7. Weight gain is super easy and weight loss is nearly impossible
“I hate being the fat friend. I have PCOS and a hormonal imbalance so when I try to lose weight I can’t lose much. The most I’ve ever lost is 15 pounds.”
9. It makes you hate the very thing you’re trying to protect and love: Your body
“I hate not being able to lose weight. I hate irregular periods. I hate body/facial hair. I want a different body.”
10. It affects your relationships
“I am worried I will disappoint my fiance if it won’t allow me to get pregnant. I hope he won’t leave me.”
11. You never thought you’d say this but… you miss your period
“A few years ago I wished I didn’t have a period. Now I have PCOS, no period and am trying to conceive. I miss my period.”
12. Where other girls flaunt their bodies, you feel like you have to hide yours
“I have hair all over so I hide my body. It makes life hard for a girl.”
13. Periods are even more of an inconvenience than they already are
“When I get my period — if ever — it feels like I got hit with a truck.”
Originally posted May 2016. Updated October 2017.