Soul Cyster Saturday, vol. 1

Since this is the first in a series, I'm going to be longwinded in my intro - forgive me! As I've mentioned before, I deal with Polycystic Ovarian Syndrome (commonly called PCOS), a disorder that affects around 5 million women in the United States alone. There is no known cure for it, and it really can only be managed to a symptom reduction that makes life better. As the name suggests, it can cause multiple cysts on ovaries, and it increases androgen (male hormones) levels. Increased androgens can cause a whole host of issues including infertility, weight gain, acne, unwanted hair growth (except where you want it - on your head - it can cause male pattern baldness), depression, etc. 

I've met lots of women with various mixtures of the symptoms of PCOS, and I want to have their stories told. I want PCOS sufferers to know they're not alone. Each Saturday, I will feature another woman who has those four terrible letters hanging over her head. I'm calling it Soul Cyster Saturday, a name I borrowed from a support group I found when I was first diagnosed. 

My first Soul Cyster is Marly, a lovely lady I met on a PCOS subreddit. I posted a contributor request, and she was so enthusiastic with her reply! She even wrote her post while battling a terrible cold. Marly is 28, like me. She lives in Canada with her husband, two annoying dogs (her words), and one awesome cat (her words as well). What Marly has dealt with really moved me, because she has not had any easy time of it with her diagnosis. Here is Marly's story:

Introducing yourself is hard. 

If we were all gathered together right now, I would likely stand up, ruffle my hair nervously and say "Hi, I'm Marly, and I have Poly Cystic Ovarian Syndrome." "Hi Marly" you would drone back, and I would sit down again, part of this experience with you, but still pleasantly anonymous. 

This is not that gathering. This is my life with PCOS.

I was diagnosed with PCOS at 15, after my doctor decided that the random abdominal pain, wildly irregular periods, and the hair that was showing up on my stomach just weren't adding up to anything good.  

My stupid PCOS hairline. 

My stupid PCOS hairline. 

I spent a few hours at the Children's Hospital of Eastern Ontario, where they took blood, my weight and height, and subjected me to my first (but certainly not last) internal ultrasound. 

I remember being upset. I remember being in pain from the exam, and remember the prescription for birth control (Marvalon, at much too high a dose) to "even out my cycles." That was it. That was literally the only treatment I received.

For the next three years, while I wilted my way through the rest of highschool, I watched cystic zits come and go, watched my hairline inch farther and farther back, and felt my body develop into a shape I was certainly *not* impressed with.  The birth control did nothing to help my other symptoms, but I'm told it prevented more cysts from developing, for a little while. 

By the time I went to college, I had stopped taking the birth control pills, and developed an eating disorder to try and control my weight. Both were terrible choices at the time, but they were the only options I felt like I had. 

Now, this may seem like a sob story so far, but while I've been focussing on the negative impact my diagnosis had on me, I haven't mentioned all the other, more amazing aspects of my life so far. I've always had a wonderful, supportive family, and friends who have been there for me through every cancelled plan and hospital trip. One of my best friends ended up becoming a nurse, and insists that seeing my struggle to find a caring, helpful doctor were what inspired her to it. 

No one told that I would forever struggle with my weight. No one told me that my period would come and go, sometimes disappearing for years, sometimes lasting for months. No one told me what I already suspected about myself: I was never going to be a Normal Girl, with long hair and a defined waist. I was not going to have clear skin, or a pleasantly hairless body.  I was not going to be traditional beauty - I was going to be Different. 

Did I mention the doctors? They were mostly assholes. When I went to my GP, her reaction was mostly "Oh, this again? Take more birth control." If I didn't go to the hospital for prolonged bleeding, I was being negligent of my health. If I did go, I was just being whiny about period cramps. No one was offering me CARE or TREATMENT, just birth control and internal ultrasounds. So eventually, I gave up. I researched alternative healthcare. I tried acupuncture, and about a zillion diets that supposedly helped my ladyparts somehow. I read about insulin resistance and flirted with the idea of Metformin, but found only more rejection when I broached the subject with doctors.  Now, I maintain as health conscious a diet as I feel comfortable with. I eat my veggies, I stay away from unnecessary sugar, and if it's your birthday, I eat the damn cake. I am not thin. I'm a little chubby, actually, at 160 lbs and only 5 feet tall, but I've found a place where I'm happy, and my body feels right to ME. That's what matters, I think. Some of you might struggle with your body image, or weight, or sense of beauty as well.  Know that it doesn't matter if you aren't like other women. It doesn't make them better, and it doesn't make you worse. If they knew the war you fight with your body, it would be them wishing to be more like you - to be as strong as you.

My crazy hair is my biggest "I rule, PCOS can bite me" habit. It changes color monthly!

My crazy hair is my biggest "I rule, PCOS can bite me" habit. It changes color monthly!

This isn't the end, by any means, and I will continue to struggle with PCOS for the rest of my life, and in many ways I'm sure I don't anticipate. For now, I am learning the difficulties of family planning - I am 28 now, and my husband and I are trying to start a family. So far, I have hitting more walls with my doctors, and trying to keep up with terms like Clomid and Follicle Maturity, and considering whether or not i want to get a needle in the bin every day for a month, or hop straight to in vitro fertilization. It's a tough road, and a hard one; two months before my wedding I experienced my second miscarriage due to "unknown infertility." My reproductive organs are crappy, and they might always be. I will struggle, I will cry, and I will eat all the chocolate ice cream in the house sometimes. I honestly hope that you do those things too. There is no shame is struggle, or in tears. 

I am not my diagnosis. PCOS is not what defines me, and it does not shape who I am as a woman. It may have taken me more than a decade to work it out, but I am no less of a woman because of a few (hundred) little bubbles.  I am braver, stronger, and more resilient because of them, and so are you.

Marly's story is truly inspiring and heartbreaking, all at the same time. I am so honored that she was willing to share it with me and with all of you! Thank you, Marly! You're so great, and I'm so lucky to have found a friend in you through this experience.