What It's Like to Live With Chronic Pelvic Pain

In April 2015, I went to my doctor with standard symptoms of endometriosis – including elongated periods and severe abdominal pain. After many years complaining of the same symptoms, and being fobbed off with “the pill,” I was finally granted a referral to a gynecologist.

I underwent a minor surgery for the endometriosis in July 2015 and following that surgery, developed what doctors are now calling “chronic pelvic pain.” I explained my symptoms which started with “pain down there” and moved onto “unable to sit down,” “unable to have sex,” and furthermore “unable to wear underpants.” (And let me tell you about how difficult it is to have a period when you can’t wear underpants or use tampons either.)

When I returned to the gynecologist who’d performed my operation with my symptoms, she passed me onto the next doctor, and then the next one and the next one.

By the end of 2015, I’d undergone three surgeries and over 12 different tests and I still had the same pain. Christmas 2015 came just two days after my last surgery, I was still hyped up on meds and entirely immobile. I spent Christmas in the house with my partner and my cat. I didn’t get to see my family that year, and they didn’t come and see me either. I guess everyone is busy now, with their own lives and their children – being Christmas after all.

I’ve spent the past 15 months “grinding” through different health professionals, and the search continues for a long-lasting solution to my pain.

“What does it feel like?”

I’ve spent a long time thinking about ways to describe the pain, but as any chronic pain sufferer knows, it’s not so easy to explain what it actually feels like to have pudendal neuralgia.

Imagine the worst fall you’ve ever had, where you hit the pavement so hard – that initial burst of “impact pain” that took you by shock or surprise. Well, my saddle area feels like that all the time. My pain sometimes feels like someone has taken a blow torch to my entire pelvic region. Other times, it feels like someone has tied my legs behind my head and then dragged me behind a car at 100mph. When I walk, I feel electric shocks shooting up and down my most intimate regions.

“You can’t sit down, so how do you get around?”

Traveling is close to impossible. There aren’t any special vehicles for people who can’t sit down. I stumble into a taxi twice a week to go to physiotherapy with my “special cushion” that I can tolerate for about five minutes at a time. Some taxi drivers are cool about it and help me adjust the cushion. Others seem annoyed for some reason, like it’s some slight on their vehicle.

Everyone is expected to sit down. Everywhere you go. I go into the doctor’s surgery and the receptionist says “take a seat” and then frowns when I stand gloomily in the corner. Going to the cinema, going out for a meal, going to the pub – all these things involve sitting down. I can’t do any of them.

“What’s wrong with you?” an old friend asks on Facebook.

How do I even begin to explain this without humiliating myself? Most of the time, I just don’t answer, because I don’t know what to say. I don’t know how to explain it that would involve mentioning the word “vagina.”

“You shouldn’t be embarrassed,” my partner keeps telling me. But I am. Everyone I try to talk to about the condition will utter words of sympathy and change the subject to something that isn’t about pain in the sexual organs.

I am lucky to have the support of an amazing partner.

I am lucky to live in a first world country where I can get help and support for my condition.

I am lucky to be alive.

But sometimes I feel like one of the unlucky few to be diagnosed with this rare condition.

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