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PCOS Awareness Month

September always feels so fresh to me. I’ve always equated it with new beginnings and while this year feels pretty different, I’m still digging deep for a fresh start in these COVID times. It’s in there somewhere.

This month also happens to be Polycystic Ovarian Syndrome awareness month. Polycystic Ovarian Syndrome, or PCOS, is a hormonal disorder which affects roughly 1 in 10 people with ovaries. It’s the leading cause of infertility and can lead to an array of serious health issues including Type 2 Diabetes. And if you don’t know anyone with PCOS, now you do.

I’m never sure how personal I’m willing to get here, but this feels important. I was diagnosed with PCOS 10 years ago when I was 21. I had spent a decade with extremely irregular and painful menstrual cycles prior to that diagnosis but never had an OGBYN who took my concerns seriously. They would shrug it off: I was young, it would work itself out, and they would throw birth control pills at me to regulate it.

After a very problematic “dietician” told me to stop taking birth control pills when I was in college, I experienced a lot of changes to my body because I was unaware that the birth control pills I was taking were helping to regulate my cycles and keep my symptoms at bay. When I spent almost an entire year without a period, I made an appointment with a new OBGYN to figure out what was going on.

The doctor sent me for blood work and diagnosed me with PCOS, but even though she also had it, I didn’t get any guidance on how to treat it. Just more birth control pills and a suggestion to lose weight. Which is something I’ve run into a lot ever since, and it’s incredibly disheartening to hear.

I then spent the next decade taking just about every birth control pill under the sun. They’d work for a short period of time and then stop. Or the side effects of the pill would be so terrible that I’d have to switch. Again and again and again.

When I finally got access to health insurance last year (YUP) I decided to call an endocrinologist. I’ve been working with him to find the treatment that works best for my body. I can’t speak to the treatment I’m using now, because it’s very new to me – I’ve only been using it for a few weeks, plus everyone’s bodies are different so what works for me might not work for you and what works for you might not work for me. I respect everyone’s approach to treatment – do what’s best for you. But I will say that I felt very defeated at first and extremely frustrated with my body. But that September feeling came over me. This is my fresh start, and I just need to lean in and trust my body a little bit.

If you also have PCOS, I just want to say that I feel you and your frustration. It can feel so confusing and often our concerns can feel so unimportant to the doctors we talk to. Trust your body and trust yourself and if you can, I know it can be difficult when access to proper healthcare can be very limited for some of us, keep looking until you can find a doctor who will actually listen to you. Remember: they work for you. If it doesn’t work out with that doctor, you can move on if that’s something that’s available to you. I’ve seen many OBGYNs who just weren’t a good fit for the care I needed and I don’t feel bad about leaving them behind at all. I have to take care of myself.

I spent most of my adult life without health insurance, which meant I spent a long long time not getting the proper care/treatment that I needed. However, I’ve had many doctors work with me in the past when paying out of pocket, including Planned Parenthood.

Everyone’s bodies are different. Everyone’s PCOS symptoms are different. Everyone’s treatment and access to treatment (unfortunately) is different.

I’m still wrapping my head around this syndrome. I’m trying to learn as I go, so I’m in no way an authority on this at all. For more info you can read about PCOS here:

What Is PCOS?

What It’s Like to Have PCOS When You’re Trans

PCOS symptoms

Remember, you are more than PCOS. ❤

-K

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