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A 9 Year Diagnosis

This month is PCOS awareness month. I don't really talk about this subject a lot, as it is even more personal than sharing about Crohn's Disease. However, with it being awareness month, here I am.

PCOS stands for Polycystic Ovarian Syndrome- A hormonal disorder causing enlarged ovaries with small cysts on the outer edges. In PCOS, low level of progesterone overstimulates immune system that leads to production of autoantibodies and therefore it can be labeled as an autoimmune disorder. Like many with autoimmune disorders, the symptoms and appearance can vary from patient to patient, so it is hard to diagnose. Some of these symptoms may include infertility, irregular cycles, no cycles, weight gain, acne, male features such as abnormal hair growth and loss of scalp hair.

Here are some fun facts about PCOS:

  • 1 out of 10 women have PCOS

  • 70% of women who have PCOS have not had it PROPERLY DIAGNOSED

  • 50-70% of women that have PCOS are insulin resistant

  • The risk of heart attack is 4 to 7 times higher for women with PCOS than women without PCOS

  • About 50% of women with PCOS suffer from obesity

  • Over 60% of women with PCOS have mental conditions like anxiety, depression, or an eating disorder

I was diagnosed with PCOS officially in 2021 after going undiagnosed for 9 years. A female is supposed to get a cycle every month, however that has never been the case for me. When I was younger, we raised the concern to my doctor that I got a cycle about every other month, however they said it was because I was a competitive athlete. At the time, this made sense and I went with it for years.

However, when my Crohns Disease decided to make it's lovely appearance in my life for the first time, I no longer worked out at the level I used to and kind of figured my cycles would become more regular because of this. I had some concerns because I started getting maybe 4 cycles a year once I started college.

In my sophomore year of college, I went to my PCP and she put me on loloestrin birth control to try to regulate my cycles, however I felt better off the pill and was still not getting a cycle. Once my cycle went down to only 1-2 a year, I really started looking for answers. However, I was only 20 years old when I started my search, so doctors would see me, but said "they could not do an exam or anything since I was not 21." After my third failed GYN appointment, I switched my approach and saw an endocrinologist. She said it looked like PCOS and referred me to another GYN, but said I can continue to see her for hormone imbalance related issues regarding my PCOS.

I was skeptical, but made my appointment with the GYN she referred me to. She took me off the birth control in order to run new labs. These labs confirmed PCOS and then she said "you turn 21 in a few months, so we will hold off on an exam until then for insurance purposes."

Even though she didn't do an exam at that appointment, I still felt that she listened and was on my side. My 21 appointment further confirmed my diagnosis and I've been figuring out life with this new illness ever since.

Don't be afraid to stick up for yourself. You know your body best. It's okay to get a second, third, and fourth opinion. And remember, you and your body are on the same side. You are both fighting the same things.


Yours truly,


Kaitlyn

@trusting.my.gut


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