Navigating people’s questions about some of my personal issues has always been difficult for me. It’s not that I’m hiding anything, and I’m not embarrassed, but properly communicating something that has brutally defined me as an adult is daunting. A few words in conversation are never enough. I have written this to help me better explain my experience to other people. I’m not looking for advice and I’m not in the market for pity. All I want is some is to explain myself and have it be heard.
I can’t even tell you how much this motto has gotten me through each day.
I’m now of the age where most of my friends have their families completed or well underway. I’m 40. I’m at the bookend of my fertility. My door is closing. But it was never really open for me and I don’t think anyone really understands that. I have always felt fundamentally broken. My wide hips have never been childbearing. My C cups, which they say are meant to feed my child, were only ever used to get attention from others. Some call me selfish; some pity my husband, my parents and me. For all my wonderful qualities, I am still a genetic dead end.
In a lot of ways I haven’t felt right since the Fall of 1993. I was 17 and my mom had taken me to see a gynecologist because I hadn’t had a period in a year. Even before that, I was a “late bloomer” when I got it at 14 and managed, at best, to have a quarterly period.
I didn’t really mind since my periods were rather debilitating. Leg cramps, back cramps, abdominal cramps, nausea, diarrhea. It was not fun and I usually had it bad that I’d stay home from school with Pamprin and a heating pad. Once in awhile, I’d get a shot of whiskey because my people were very old school that way.
I was a very innocent 17 year old, and having a pelvic exam, even done by a woman, even when my mom was in the room, was rather horrifying. She had a mobile with butterflies above the exam table and that’s what I focused on. When my blood work came back, that’s when everything in my life changed.
My doctor was kind but told me I had a condition called Polycystic Ovarian Syndrome or PCOS. Simply put, but body produced too much estrogen and testosterone and not enough progesterone. I didn’t ovulate. Instead I formed scar tissue around what should have been erupting eggs. And she told me there was no cure and I likely wouldn’t be able to have children. I could treat the symptoms. I could take birth control pills to have a monthly cycle and I could take a medication that would slow additional hair growth.
At 17 I was looking forward to college, not kids, but still knowing that the option of motherhood might never be there for me was tough to take. I always dreamed about meeting my daughter. I felt a responsibility as the only child of the only boy in the family. I was always the kind of little girl that had played with dolls and thought about having a real life one of my own eventually. Suddenly, that wasn’t likely.
I was already very concerned with my appearance. I hadn’t been able to successfully lose weight since I was around age 9. This, also, was a symptom of PCOS. Go to Weight Watchers was the advice of the doctor. I had already been a veteran of Weight Watchers, Richard Simmons plans, hospital nutrition programs, crash diets in magazines, and an ulcer causing time with Slim Fast.
I realized that as well as having a mustache that I needed to bleach once a month; I had hair on my chin! Like a mini beard! It came out of nowhere. Now I really kept my head down in school. I didn’t want anyone to look at me or see what I felt like I was becoming – disgusting. When I’d ask my family about the things that bothered me about my appearance I seldom got reassurance that helped. Either my mom said I’d grow out of it like she did (how did that help me now?) or someone would say they didn’t notice. I didn’t believe any of it. I hated what I saw in the mirror every day.
The knowledge of my condition made my mental state worse. I just felt wrong and broken. I had serious moments of rage where I’d attempt self-harm. This could have been exacerbated by birth control pills we tried, and the fact that PCOS itself lends to depression biochemistry. But I’d sit up at night, pulling my hair and slapping my face because I was angry and frustrated and I didn’t know who else to blame for feeling shitty. My body betrayed me. My body didn’t keep its contract with me. I didn’t trust my body. I didn’t love my body. I didn’t love myself. I was defective.
And speaking of birth control – there was nothing more embarrassing for me than going to Wal-Mart once a month with my mom to get a prescription. At 17 I hadn’t even really held hands with a boy and was mostly scared to death of them. And to think that I was on birth control like a slut? Well, what did people think about me? Every time I went with my mom to fill that prescription I felt judged. And the irony of it all was funny at the time. Birth control for someone who couldn’t give birth. Birth control for a girl who felt absolutely undesirable.
The next couple years were a struggle with depression as I sorted out the issues in my head and my body. I eventually found a birth control medication that gave me a monthly cycle without horrific side effects. I took a medication that regulated my hair growth so it didn’t get significantly worse. I managed the growth I had. I still felt alienated from my sexuality.
Once I was out of college and on my own, I kept going with the same management of the condition. Birth control and spironolactone to deal with the effects. Try to lose some weight. Antidepressants when necessary. I never felt much like there was anything else to try until I met a doctor who had some additional ideas. I went on an additional medication, Metformin, to deal with insulin sensitivity and to help with the weight loss.
This is about the time I learned something really interesting about PCOS and medicine. Every practitioner had her own idea of how to treat it and what it was. Some managed the symptoms and some wanted to do more underlying cause. Some tried to give me a little hope and others didn’t really want to work with me at all. I tried requesting an endocrinology referral at one point and was told that unless I was trying to get pregnant it wasn’t something the office was willing to do. When my test results came back with some doctors they’d deny me medication that had previously worked because my ranges were still in “normal” for a woman, without the consideration of my age and my history.
It is incredibly frustrating to argue with a doctor about your life.
By far the kindest medical professional I met with in my 20s was a nurse at Planned Parenthood. Without insurance, I turned to Planned Parenthood for the birth control. I did not get dismissal. I did not get judgment. I received compassion, understanding, and every script I asked for.
When I finally did become sexually active, I managed to tell my partners enough about this condition that they understood. Most of the time they just cared that they didn’t have to worry about getting me pregnant. The nagging reminder that I couldn’t have a child didn’t really bother me consciously again until I met someone that I did want to build a life with. Suddenly I started to think about my daughter again and how she would look like a mixture of the two of us. That she’s better get my nose! But I hoped she would get his analytical mind. And then I’d remember that the little girl in my mind wouldn’t be in my arms.
By my mid 30s my friends were having their families. My friends with infertility were dealing with it in proactive ways. And I remained treading water. Still on the Pill, we decided to not use other forms of birth control and if it happened, it happened. My periods became ridiculously light, but my PMS was often crushing. I have taken many pregnancy tests, alone, first thing in the morning, and I am always slightly disappointed by the result. Even when it’s been the worst possible time in my life, any time I get a negative result it is never a relief that it is for some people. It’s a reminder that I am still not a whole woman.
By my late 30s a few interesting things happened in my life. I got off the Pill cycle accidentally because I couldn’t get things filled in time and found my weight loss really benefitted. I started to do more with my nutrition to work with my IBS and I found that my absorption issues were likely hindering some of the medical things I was trying. So I changed some things around and I decided to seek the care of a Naturopathic Doctor.
This decision was not something that was well received in my household! I decided to go off the Pill and to try hitting PCOS closer to the source. I’ve always thought of it more as a receptor binding problem. Chemical messages being sent are not received.
The biggest game changer from my natural medicine experience was finding I was deficient in inositol – an important component of cellular transportation. And by supplementing it intramuscularly, I have gone off the Pill and have a normal cycle. It seems silly to some, but getting a period every month, every 28 days, with no placebo pills to tell me it’s around the corner seems like a freaking miracle. I chart my cycle in an app on my phone with a smile.
I feel like Pinocchio. I feel like a real girl. I feel functional. I feel like a woman. I feel like I’m not broken.
As ecstatic as this makes me feel, it’s bittersweet. I’m 40. I’m married and we made peace to not have children a long time ago. It’s not part of our plan. It’s not equally and enthusiastically wanted by the two of us. At the same time, my mother is helpfully reminding me that since she doesn’t have grandchildren, she feels like she has no one to pass things along to. My thoughts are “I still failed because it’s too late.”
So I will take each day as it comes. I will hold my friends’ children and I’ll focus on my own health. I really don’t know what the future will bring. Despite feeling like the sun is setting on my time to meet my daughter, I could be wrong. And if I’m not, maybe someone younger and in a different situation will be sparked to stop treating PCOS like a sentence and a list of outcomes to manage. Maybe she will try something crazy like seeing a Naturopathic Doctor for another way to deal with it. And maybe she’ll meet her daughter.