Having a Sex Life When Your Sex Organs Hate You

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Photo by Timothy Meinberg on Unsplash

September is PCOS Awareness month and yet most people don’t even know what it is that we’re supposed to be aware of. In short, PCOS (PolyCystic Ovarian Syndrome) is an endocrine disorder that affects up to 1 in 10 women with varying levels of severity and symptoms. Despite the name, having ovarian cysts is not required to be diagnosed with PCOS. Diagnosis is based on the presence of symptoms. I have several friends who have been diagnosed, as well as myself, and we all display slightly different variations.

A laundry list of PCOS symptoms looks a bit like a list of reasons that either make you not want to have sex or make it more difficult to find someone who wants to have sex with you. I cannot speak to struggles with weight as that is not one of the symptoms that I display. However, there’s nothing to make you feel attractive quite like thick black hair sprouting around your nipples or clusters of cystic acne. Acne is itself is quite nasty but cystic acne takes it to a whole other level by forming large, swollen lumps along your jawline, chin and shoulders. If a parasitic alien decided to make its home under my skin in order to reproduce, I’m pretty sure it would look and feel like cystic acne. And I don’t even want to think about the amount of time, money and energy I have spent on various hair removal techniques. At least the hair on my head doesn’t fall out. It does for my roommate, and I had to clean the drain on her shower once. When I showed her why the tub wasn’t draining properly, she almost cried. There were huge chunks of hair clogging the pipes and it had only been a few months.

There is an awful lot of pressure on people, especially those who identify as female, to conform to this sort of magical beauty ideal where you are slim and curvy, no hair anywhere except perfect brows and luscious flowing locks, and perfect, clear skin. Also, you should smile more. You have to come to terms with all of this in order to feel desirable and PCOS seems like an unfair handicap in a race that you’re already destined to lose.

Say that we’ve overcome all these obstacles, have a partner that we share mutual attraction and sexual compatibility and it’s time to get busy. There’s only one thing that we haven’t mentioned yet; the pain. Polycystic Ovarian Syndrome is named after the “ring of pearls”, a ring of ovarian cysts that are formed when the follicles that are supposed to become eggs and release into the uterus instead become inflamed fluid-filled sacks. Guess what happens to these sacks when they’re enthusiastically jostled around in the pursuit of amorous pleasures? If you pantomimed popping like a balloon, congratulations, you have won the sensation of excruciating pain. If you’re lucky, you may even have the added bonus of nausea, dizziness and vomiting as stars flash in your eyes and you beg for death. I would literally rather give up a kidney than have a cyst burst. Then you’re bleeding on the sheets and cramping for the next 24 hours. Sound like fun yet?

The obvious solution to this problem sounds like abstinence. In this case, like almost every other situation where abstinence has been touted as the answer, it just doesn’t work. Things as simple as sneezing and stretching can cause a cyst burst. Not to mention, I like having sex and giving up it up isn’t exactly an option that I am willing to entertain. I’ve tried more hormonal birth controls than I can count over the last 8 years. There was one doctor who told me that some women just have painful periods for no reason, and I should try belly-dancing. Another doctor told me that he couldn’t help me with the pain but to let him know when I was ready for fertility treatments and he’d help me get pregnant. It frustrates me that I can go to the doctor and tell them that the pain is affecting both my daily life and my sex life and those aren’t valid reasons to seek further treatment.

Sexual dysfunction is treated far more seriously in men than it is in women. Viagra was first used to treat erectile dysfunction in 1998. PCOS was first identified by an Italian scientist in 1721, but we still don’t know what causes it or how to treat it. I’m not trying to say that the two are equivalent, ED has a relatively straightforward cause and solution, but it is telling that something that affects up to 10% of women and can have debilitating symptoms is still unknown. I don’t have a penis but I still know what erectile dysfunction is. I think it’s time that those with and without ovaries should know about PCOS.

Crazy dog mom, mental health advocate, project manager and writer

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