This week's Soul Cyster is Laine. She is 22, and is a third year graduate student studying clinical psychology - she wants to work with children and adolescents! She lives in Seattle, and is another one of my PCOS subreddit ladies. I am so grateful for her contribution this week!
I thought my gynecologist was just a jerk. I was diagnosed with PCOS in February of 2014. When I was diagnosed, I had just turned 22 years old, and was a few months into a graduate school program. I was working my butt off and hadn’t really thought much about the symptoms I’d been experiencing. I went to a gynecologist because I had moved to a new city for school and wanted to have one in the area, so when I went in, I figured I was just getting a checkup. She asked me if I’d always had hair on my face and acne, and I thought she was so rude. But, she’s still a doctor, and I was a 22-year-old with no medical knowledge, so I told her the truth: no, both of those were new in the last two or three years. I had never had significant acne, even as a teenager, and the peach fuzz mustache I'd had growing up had become hair all over my cheeks, chin, and upper lip over the past couple of years. She asked about my periods, but I had had a Mirena IUD in for several years (which I LOVED) and therefore had no periods. She asked about my weight, and I told her that I actually hadn’t always been overweight—in fact, I had been regularly called “skinny” in high school only four years earlier, but I had steadily gained weight over the past couple of years no matter what I tried.
At around this point I was a little scared, because I was realizing that she wasn’t rude but in fact had a theory about something that might be wrong with me. I had blood tests and a transvaginal ultrasound. Although I had no ovarian cysts, my blood tests showed results consistent with a PCOS diagnosis. I later confirmed this diagnosis with two endocrinologists, because when you don't want something to be true you try everything to disprove it.
I went through a lot of emotions when I was first diagnosed. I was relieved in a small way, that I had an answer for symptoms I'd be ignoring. I was also relieved that my inability to lose weight was not just because I was incompetent and hopeless, but because there was legitimately something making it difficult. Those were good things. But I was also terrified. There was no cure available, and I had always desperately wanted children. Being faced with the possibility that it would be very difficult for me to conceive naturally was a hard pill to swallow. There was no treatment that would get rid of PCOS, nothing that I could do that would make it go away.
I went to a dermatologist, who prescribed spironolactone and birth control pills. I had to remove my adored Mirena IUD to start the birth control pill treatment. I have seen two top endocrinologists. The hair on my face and the acne cleared up over the next six months or so, with the help of medication, so those symptoms were ameliorated significantly. But my first endocrinologist did not want to prescribe Metformin, and had no other suggestions to help me lose weight. My weight continued to creep up despite 5-6 days a week of workouts and the recommended calorie intake to lose weight. I was frustrated and beaten down, exhausted from trying at something I could never win. I had been trying to lose weight for over a year when I went to a second endocrinologist, who told me she also would not prescribe Metformin and that I should keep doing what I was doing, but “don’t get too obsessive about calories”. I was about 30 pounds overweight at this point, and feeling utterly hopeless. Hearing doctors, who I have always trusted with every aspect of my health, not know what to do was scary. Hearing them tell me to "just keep on keepin' on!" when I was crawling closer and closer to obesity was scary. Hearing them tell me how important it was that I lose weight, while providing no guidance or help, was the scariest of all.
Frustrated at the lack of answers, I started doing a huge amount of my own research, and joined a group on Reddit with other women with PCOS. Many women recommended a keto diet, but that diet was not sustainable for me personally. After a few more months of searching, I learned that some women with PCOS have lower resting metabolic rates, meaning that they burn fewer calories naturally than other women. I had my resting metabolic rate (RMR) tested at a local university, and they found that my body was burning about 500 calories less a day than would be expected for my weight, age, and height. I had been eating 1700 calories a day, the recommended intake for weight loss for a 5’10 woman of my weight, while really I needed to eat less than 1300 to lose weight. It has been extremely difficult to lower my calories so much more than I already had, but armed with that knowledge I have lost 21 pounds since July, and am now 15 pounds from my goal weight. It has been difficult to cut so much and feel left out as my friends with 23-year-old metabolisms eat half a pizza without a second thought, but I owe it to myself and my health to do everything I can.
It is extremely difficult still, and it is very lonely and frustrating that the medical community does not have the answers I need. I am still terrified for the future as I get older and want children of my own. But to other women with PCOS, I would tell them not to give up. Look for your own answers, do your own research, be your own advocates. It is worth it to find the way to your best self. If I had listened to my doctors and accepted what they said at face value, I would likely be obese. Taking responsibility for my own health care and not giving up is the reason I'm not. YOU are the person you can rely on and trust. If you don't like what you're hearing, please do not give up. Believe that you can do it, because I can tell you from experience it is possible!
Laine touches on some really good points - it's important to do research and figure out what will work for you! There are so many different facets of dealing with PCOS, and she has not let it defeat her in any way. I am so pleased to have her as part of my community!