PCOS – A Candid Discussion

When I say I have PCOS (polycystic ovarian syndrome), I usually get a blank look.  Few people seem to have heard of it, despite it being the leading cause of infertility among women.

The Mayo Clinic has this to say about it:

  • Polycystic ovary syndrome (PCOS). In PCOS, complex changes occur in the hypothalamus, pituitary gland and ovaries, resulting in a hormone imbalance, which affects ovulation. PCOS is associated with insulin resistance and obesity, abnormal hair growth on the face or body, and acne. It’s the most common cause of female infertility.

My original plan was a blog post, talking about the facts.  However, the more I thought about it, the more I realized a blog post wouldn’t do it justice.  Even a series of blog posts wouldn’t cut it.

I have subconsciously known that I had the condition since I was 10 years old.  That gives me 24 years of experience with this disorder.  I’m not an expert.  I’m not a doctor.  I do know that PCOS goes well beyond a “condition” that has to deal with “female problems.”  I have talked to dozens, possibly hundreds, of women with PCOS and their stories all break my heart.

PCOS provides fodder for bullies, both young and old.  It gives opportunities for body shaming that has nothing to do with weight.  It makes relationships awkward to the point that some women don’t even bother.  And I hate to admit it, but I have suffered the wraith of bullies, been shamed by girls in locker rooms, and even given up on dating because of the embarrassing side effects of this condition.

Unlike most disorders, you can’t look at a person and say “well, I have PCOS,” and everything is automatically explained.  You have to take the time to educate them.  That education process is embarrassing.  It’s humiliating.  It’s degrading.  And the disorder is life threatening; women with PCOS have an increased risk for heart disease, stroke, Type II diabetes, and endometrial cancer.  As a matter of fact, last year, a woman in my support group died of endometrial cancer complications.  And in the last year, seven of the twenty women I talk to regularly have developed Type II diabetes; they are all under forty.

There’s no cure.  You can treat the symptoms, but that’s it.  And sometimes, treating the symptoms just isn’t enough.  My diet contains less than 1600 calories a day.  About 600 of them comes from soda, so I know that’s part of my weight problem, but even when I cut out soda, I don’t lose much weight.  Several years ago, I did a test.  I cut out all soda and all carbs.  I began going to the gym four times a week for an intense physical work-out lasting one hour, with an extra hour spent warming up and cooling down.  I cut my calorie intake down to a measly 700 calories a day.  During the six month experiment, I lost 9 pounds.  Meaning I was still “obese” according to the BMI index.  I also made myself sick as hell because I wasn’t consuming enough calories to maintain the exercise routine along with my every day needs.

So, instead of series of blog posts, I’m writing a memoir.  It will include my own personal experiences, the experiences of the women I know and the facts that I have learned over the years.  Parts will be gritty… it will include information about menstruation and body hair in weird places (like nipple hair and butt-crack hair).  It will include my own experiences with body shaming for having “guy hair on my legs,” and a mustache that has to be dealt with.

The purpose is to educate those that know someone with PCOS and isn’t getting all the gritty details, because we are ashamed and embarrassed to say more than “it’s a girl thing that causes cysts on my ovaries.”  It is to give hope to sufferers, to reassure them that they aren’t alone.  Everything they’ve experienced, everything they deal with on a day to day basis has been dealt with by others.  And, for the first time, I will come clean about everything I have ever had to experience, endure, and battle; from bullies and body shaming to feeling like shit just because my hormones were more out of whack than normal.  It won’t be a text book or a case study.  It will be full of facts, but with those facts will come my own commentary talking about my experiences; like the jackass that put a razor, shaving cream, and a note on my locker in 8th grade telling me to “shave the ‘stache.”  (And the complex that developed from it).

Aside from my own experiences, I’ll provide a few from other women I know.  Women who have symptoms that aren’t really associated with PCOS, but seem to be pretty common in sufferers (as one of the ladies’ in my group said “It’s fine for a guy to have werewolf butt, but when a girl has it, people make jokes about when she snipped off her tail” – after this comment, three more woman owned up to suffering from “werewolf butt.”  Since then, I’ve met several others that have it.  “Werewolf Butt” might not be the best term for it, but I think it captures how we view ourselves about our “abnormal” hair growth patterns.  I’ve used the term “troll” to refer to my facial hair.  Another woman I know refers to herself as a yeti because she has a little bit of back hair and dark hair on her stomach).  All of us use these terms for a reason, at some point in time, someone has used them against us.  I know someone else referred to me as a “troll” because of my mustache (which is visible, but not hanging over my lips or catching food while I eat).  Then people wonder why anxiety and depression are common in women with PCOS.  Some think it’s a symptom of the disorder.  It could be.  I think it is also a symptom of the symptoms.

We don’t know the cause and as I said before, there is no cure… so we need to find better ways to treat the symptoms.  We also need a better understanding from the world around us.

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