This is going to be a bit of a heavy post, so if that’s not your thing feel free to click away.

Also, always ask a doctor about your health. I am not a doctor and am only speaking from my own experience to help raise awareness. This is not meant to diagnose, treat, or give treatment advice.

My Story

When I was 16 years old, I was diagnosed with Polycystic Ovarian Syndrome or PCOS. Like the title says this disease causes cysts on the ovaries, it can also cause (though everyone has a different mix of these symptoms) weight gain, acne, diabetes, anxiety, depression, thick hair growth on the body, certain cancers, and infertility due to (as far as we know) an imbalance in the reproductive hormones. I was put on birth control to regulate my hormones (currently one of the only treatment options) and all seemed to get better.

That was until my sophomore year of college. I started getting excruciating, doubling over pain on my ovary and was sent to the ER. They told me it was stress pains and sent me home. About a year later it happened again, this time they caught a cyst which burst while I was in the ER and since it was the same pain we concluded the first one must have been a cyst, too that had burst before I got to the ER, but it’s not on my medical record.

After a year of fighting back and forth with my OBGYN after the second cyst, I got a third about a year ago. It was two centimeters which isn’t that big and shouldn’t have been causing me that amount of pain. Over winter break I found an OBGYN who would listen and she told me I might have Endometriosis. I had a diagnostic surgery on Tuesday before this was posted and luckily I don’t have Endo. I did, however, have a good deal of scar tissue from cysts that ruptured over the last 3 years.

Research

The reason I’m telling you my whole story is because PCOS and endo are under-researched, under-diagnosed, and are painful, nasty things to go through for your whole life because there is no cure. I once heard a woman describe PCOS as “waking up every morning prepared to do battle with your body” and that’s exactly what PCOS is.

I had to go through 5 doctors in 3 years to find one who would listen to me, but a lot of women have it a lot worse. On average it takes 10 years for someone to be diagnosed with endometriosis from the onset of symptoms. 1 in 5 women have PCOS and 1 in 10 have endo, so why are there so little treatment options or answers.

Misinformation

I watched a Buzzfeed Video awhile ago about a woman with PCOS and thought, finally, some awareness… until I watched the video. This woman got so fed up with her limited options she went to a woman who told her she “cured” her PCOS by eating healthy. Newsflash: there’s no cure for PCOS. You can manage symptoms, and yes diet helps, but you can’t cure it. And because so many women have different symptoms there’s no one treatment option, either.

To see this mainstream media company spreading misinformation drove me insane. I called my girlfriend in tears I was so mad and hurt and upset. I see a lot of misinformation and also women putting down other women because they think they know their health better than them. For example, my PCOS doesn’t have the insulin issues, my treatment is different, but a lot of other patients try to tell me I’m insulin resistant because I have PCOS. I’m not, my blood sugar is always fine. Symptoms manifest differently, it’s why it’s such a tricky disease to treat. We need to stop telling and start listening. Let the doctors diagnose, be a force to listen and support, not treat.

This is an action call, to stop the spread of misinformation, to share experiences, and not dictate other people’s treatment. If you think you have the symptoms please talk to a doctor and if your doctor won’t listen find one who will.

Do you have PCOS or endometriosis? Let me know your experience in the comments

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For my other post on PCOS and Endometriosis look here.