Turns out that trying to research a thesis with a hormonal imbalance-induced foggy brain while simultaneously researching the hormonal imbalance giving you a foggy brain to find treatments to make your brain NOT foggy and then testing those treatments while STILL TRYING TO WRITE A THESIS is basically the worst idea. Ever. My thesis, thus far, has felt something like trying to spontaneously speak Latin. And paying a small group of people to tell you how terrible your non-existent Latin skills are. All with a mouth full of Novocaine. Yeah, something like that.
And then, all of a sudden, you find some magical combinations of yoga and whole foods and supplements and the words begin to make sense! Even if the whole thesis-thing still feels like I am auribus teneo lupum.
But now that I am able to think clearly and have only TWO WEEKS left to try and complete my thesis, I find myself raging fucking pissed to be in this position. I am also completely baffled because now that I feel better, I realize just how utterly shitty I felt for so long. I should have been diagnosed years ago, instead of being treated like a pathetic hypochondriac. So taking a quick sanity break from citations, I found myself writing. And writing. And writing. It has been so long since I felt well enough and had enough mental acuity to write. Reframing a lot of negative assumptions about my body and my mind through what I know about PCOS has not only benefitted me, but it has greatly improved my relationship with Spousal Unit. I have done so much research, and putting it all down just feels… good. Okay, to be honest, I really just needed another break from citations.
Writing about PCOS is hard. It is a complicated, misunderstood thing. There is a lot of research into PCOS, but by nature it each study is limited in scope. Much of what I have found does not appear to have made it into the pool of general knowledge within the medical community. And, as with any endocrine issue, it takes a big picture view to really make sense of it all. For example, one issue with PCOS is that many doctors only look for women who are overweight, but current medical wisdom says only half of women with PCOS are also overweight. And studies are now suggesting that women with PCOS are no more likely to be obese at all. But there are many, many other indicators that are being discovered,and often get ignored. And so that is where I want to start, looking at the times in my life where a diagnosis could have been made but wasn’t.
I experienced early secondary sex characteristics- I remember being 8 years old and getting training bras because I had pretty obvious “breast buds.” I got pubic hair before a lot of my friends. Now, this could have been a sign of early puberty (and that is a different discussion altogether), but it wasn’t because I did not start menstruating until I was nearly 13. If a girl develops premature adrenarche and thelarche that far in advance of actually entering puberty, it is a sign of hormonal imbalance- specifically PCOS. At the time I was mostly mad that I got all the shitty parts of puberty without the perks- I didn’t actually develop breasts until I was 14. That is 6 years of giant nipples with no boobs. Thanks, body. But since PCOS is hereditary, and my mom and other women in my family experienced the same developmental issues, no one thought twice about it. AND since the United States lumps all education about reproductive development into sex education, then basically fails at sex education, there was no reason for me to know this was abnormal.
There were other signs that in and of themselves might not have meant much, but should have served as red flags. As a young child, I started showing a lot of allergy issues. I have dietary issues (more about those later), react strongly to many medications, am made horridly ill by mold, mildew, pollen and algae… the list goes on. I also have asthma, which recently has been found to have a correlation with PCOS as well. It is well known that inflammation is a marker of endocrine disorders, including PCOS. This one is a more recent link, so it wouldn’t have been a sign of anything in particular when I was younger. By my teens thought this was more well known.
But what went completely ignored by my doctors, despite my parents’ concerns, were the signs that I had issues with insulin. I have always had strong reactions to sugar, getting serious highs and having serious crashes. To this day I have to make sure to eat on a regular basis because I will being irritable, incapable of making decisions and develop a tremble if I go too long without food. Classic case of hypoglycemia, and for children who experience non-diabetic hypoglycemia are really likely to have insulin issues and/or adrenal issues. Hm, PCOS anyone? And, this one is easier to miss, I spent most of my life being THIRSTY. I was jokingly given a restaurant style plastic pitcher by some friends once because when we went out to eat, I routinely drank an entire pitcher of water by myself. Cheers! Except that it is actually, like, a medically diagnosable sign of hyperglycemia. Yet more evidence that my insulin was super out of whack.
The red flags increased as I hit puberty. Despite having a fairly healthy diet and an active lifestyle (yeah, okay, I didn’t exactly “work out” but I loved hiking and swimming) when I hit puberty my thin frame suddenly developed this gut I could not get rid of. Which is mortifying to a teenager. While as I pointed out obesity and PCOS are not as correlated as most people think, mid-section weight gain is still associated with insulin resistance as well as increased cortisol, which are both signs of PCOS. In case a gut wasn’t enough, I got a whole bunch of skin issues too. Acne. Oh the acne. But I also developed a rash, an uncomfortable, unattractive and totally embarrassing rash. During the worst breakouts, it covered the entire area from my armpits, under and between my breasts. I couldn’t shave when it was really bad, and for years my sleeveless shirts and dresses were seen only once in a blue moon. While there isn’t a direct correlation between tinea versicolor and PCOS, skin issues such as this are due to endocrine issues.
And of course, the joys of PMS. Except that I don’t have your garden variety PMS, no, I have premenstrual dysphoric disorder or PMDD. From day one, my menstrual cycles were AWFUL. We are talking nausea and vomiting. Migraines. Breast tenderness. Horrible cramps and lower back pain that left me unable to function. It was so bad, and to top it off my friends thought I was making it up for attention and gave me no end of shit about it. But what was terrible was the MOOD SWINGS. However, the issue of societal stereotypes of female moods is a huge, large issue that deserves its own blog, let alone a separate post. Suffice to say my long term issues with my emotional response to stress shouldn’t have been treated as a character flaw. We will come back to that next post.
Signs only increased as I became an adult. In my early twenties, during a routine checkup, my family history triggered a cholesterol tests. When the results came back, I had some seriously high triglycerides. By this time I was living on my own, and I was eating lots of plant based foods, no red meat, whole grains, and I had become an avid runner so my weight was healthy. I shouldn’t have had any cholesterol issues based on conventional wisdom. That coupled with my history of irregular periods should have been enough for someone to suspect PCOS, let alone with the laundry list of other red flags. I had multiple exams, including x-rays, due to severe joint pain that no one could explain. A few studies into estrogen have found a correlation with hormonal imbalance and joint paint in general, but pain in my shoulder (which had a sudden onset three years ago and has been a chronic problem since) is not only a sign of heart attack in women but also has been identified as a symptom of endometriosis. While I obviously was NOT suffering a heart attack when I went in for shoulder pain the first time, I wasn’t even examined for one. I should have been. Immediately. And, despite continuing pain and a history of endometriosis in my family, I have yet to be examined for that condition either.
Despite premature adrenarche and thelarche, allergies, non-diabetic hypoglycemia and hyperglycemia as a child; the onset of mid-section weight gain, acne, skin conditions and PMDD as a teen; and high triglycerides with joint pain as an adult, I wasn’t diagnosed until I was 26 years old. This isn’t surprising. Many women are not diagnosed with PCOS or other issues until they are struggling to get pregnant. Despite the fact that often those with PCOS begin presenting symptoms which negatively affect them from an early age. I think it probably says something significant about our social norms for women and their health. Studies have shown that when women present health concerns to their doctors, they are less likely to be prescribed treatments then men. In addition, there is far less funding for studies in women’s health than men’s. So in general, the medical system knows less about women’s health and listens less to their concerns.
I have a lot of citations. I will need another break. Lucky you.