Picking up where I left off...
Lest you think I took my self diagnosis and ran, I did not. Even though I am qualified to and have had many opportunities to diagnose other women with PCOS, I sought other opinions. I got a second opinion from my personal nurse practitioner, third and forth opinions from OB/Gyns I worked with, a fifth opinion from our infertility nurse, and eventually a sixth opinion from an RE who supposedly specialized in disorders of the ovaries. What surprised me was not that they all agreed with my diagnosis, but how little they actually knew about PCOS beyond the textbook blurb we had all learned in school.
Every single one of them said the same things- "labs and sono are textbook PCOS, but you don't look like you have PCOS; take clomid." I try to take the not looking like I have PCOS as a compliment (I suppose) and I admit, this is at least partially where my denial came from. We're taught in school women with PCOS are obese, have facial and maybe chest hair, acne, some even have male pattern baldness. But these physical characteristics are not part of the diagnostic criteria. I check all the boxes for the primary clinical criteria and most of the supporting criteria. Even after knowing all that, medical professionals have to comment that I don't "fit the profile" because I'm not obese. It's not like they disagree that I have PCOS, just like they don't understand how that happened if I'm not overweight. The craziest thing about that is that only 60% of women with PCOS are overweight. That means these healthcare professionals are likely dismissing this as a possible diagnoses for a huge number of their patients because they lack a physical characteristic that isn't even one of the diagnostic criteria. Ahhhh! Anyway....
I realized I wasn't going to be able to turn to anyone else for easy answers, so I started doing my own research. Fortunately I had lots of resources- my medical textbooks, medical data bases, and of course Google. The most important thing I found is that "thin" PCOS is different from "normal" PCOS. It has a different hormone profile, different responses to treatment, and probably even different causes (even though the cause of neither is fully known or understood). Logically you would think being thin with PCOS would improve your chances of getting pregnant, but it does not. Heavy women tend to have higher levels of estrogen, which can be helpful when you're trying to conceive. Thin women with PCOS tend to be poor responders to ovulation stimulators and have lower rates of success with IVF.
I researched everything I could get my hands on. I truly became an expert on PCOS. I don't mean this in a bragging way (well, maybe a little), but I honestly don't think I know another healthcare provider in real life, who knows as much about PCOS as I do, specifically "thin" PCOS. I started to devise a plan, figure out what medications where most likely to work for me, what lifestyle changes I could make to improve my chances. This really helped give me a sense of control over the situation. Instead of focusing on how disappointed I was that my fairytale plan of an easy conception was being shattered to pieces, I could focus on what I wanted to do about it. And again, I'm struck with how fortunate I was to be a position to just do it. I could do what was best for me without having to ask anyone else for approval or permission.
So I came up with a plan and that plan was metformin.
To be continued...
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