“I didn’t know what it was causing the agonising pain”

**Trigger Warning: mention of rape**

 

Last Monday was International Day of Disabled People. Lots of people in the student movement came out on Facebook and on their blogs as disabled. They talked about mental health problems, about learning disabilities and about physical conditions. They were proud to say they were disabled; proud to be counted and happy to stand up to the prejudices of our stupid society.

 

I am too ashamed to come out. I am terrified by the stigma and prejudice that surrounds my health problem. My disability dictates how comfortably I can sit, stand and walk. It dictates whether I can/want to get out of bed in the morning. For the last two years, it has dictated that I haven’t had a relationship, that I haven’t dated and that I haven’t had sex. Since I was 17 it has dictated the nature of my relationships with boyfriends. It has forced me into uncomfortable, abusive situations, because I didn’t know what it was causing the agonising pain I felt. It’s had me called prudish and selfish for not giving it up on demand. It’s had me very publically humiliated for not having sex with my boyfriend (on a night out without me he told a large group of my friends and acquaintances about our sex life– I am fairly certain the whole of KUSU knew we weren’t having sex).

 

I have a chronic pain condition that leaves me in pain and discomfort all day. It’s neuropathic so over the counter painkillers do nothing to help. Instead, I take amitriptyline, which is normally used as an anti-depressant, but also works as a painkiller for neuropathic pain.

 

I don’t hurt in the obvious places. It is an invisible pain to everyone else. If you slap my back, I won’t wince. It’s my vulva that hurts. Actually hurts doesn’t cover it. It burns. It stings. It aches. I feel like someone has stuck a knife in me and is twisting it around. It feels like I’ve been punched repeatedly. Putting on my knickers is so painful I want to scream. Water stings, which makes showering an assault course most mornings.

I can’t tell anyone I have this condition. Anything lady garden related tends to be associated with STIs. The assumption is I must have caught something to be in this much pain. People assume I must have had lots of unprotected sex with random people. I must be a right little slut. I told the person I thought was my best friend and she made me feel like the most worthless piece of shit. The disgust was written right across her face, like I was something nasty she had found under her shoe.

 

I got a diagnosis in May. I have vulvodynia, which is a chronic and unexplained pain condition. No one knows what causes it. It is very difficult to treat. Aqueous cream and neuropathic painkillers, maybe a bit of CBT – nothing concrete, nothing that promises to make it stop.

It’s NOT an STI, it’s NOT related to HPV. It CANNOT be passed on via sex or skin contact – it is NOT contagious.

I think I have had vulvodynia symptoms for 7 years, but they have got considerably worse in the last two. It has taken two years to get a diagnosis. My pain was initially dismissed as not using enough lube during sex. I was also told that this kind of pain was normal for women. It took two years to get a diagnosis. Every doctor I talked to had to be convinced I wasn’t having sex to believe I didn’t have an STI, even with 6 negative test results for everything as evidence in my favour. I was treated for chronic thrush for 4 months, even though there was no evidence I had it.  In the end, a doctor at Hathersage wrote me a note confirming I had neither an STI nor thrush, which I sobbingly handed over to my GP.

I can’t tell anyone, because even though I know it’s not an STI no one else does. We don’t talk about all the shit that can go wrong with women’s genitals and reproductive organs. There is a stigma attached to my vagina that I can’t escape. When I told my best friend, I thought I’d get a hug and some comfort. We no longer speak.

I told my mum – she looked like horrified and it took weeks to convince her that this awful thing that is destroying me inside has nothing to do with the fact I haven’t waited till my wedding night to have sex.

I am terrified that I won’t be able to have children. I am not yet reassured that things aren’t more complicated, that my ovaries and womb aren’t just giving up on me. Although vulvodynia does not cause infertility problems, it does interfere with one’s sex life. If I don’t get the pain under control, I won’t be having the sex that gets me pregnant. I confessed my fears to my cousin. She rubbed in my face her ability to reproduce, told me that I won’t be a real woman until I have had a child, that I won’t know real love until I push 9lbs of screaming baby out of me. She didn’t acknowledge that I’d told her about a disability that might prevent me getting pregnant.

I already know what a damaging affect this condition has on relationships. I’ve been sexually assaulted, because I have refused to have sex or let a guy do something to me due to pain. The guys I have dated didn’t like that. I’ve been called prudish and selfish. I’ve been accused of lying. I’ve been told that I don’t love someone enough, because I didn’t really want clumsy fingers probing everywhere. I’ve been pushed into having sex by pressurising comments about love and loyalty, and once by having two friends tell me my boyfriend had told them I wasn’t giving it up. My personal comfort and safety have always come second to someone else’s sex drive. I’ve spent relationships paralysed by guilt and anxiety about not having sex, worrying that I am driving someone away, but not able to explain what is wrong.

The boy I was madly in love with dumped me, because I wasn’t good enough in bed, because I wasn’t sexually available every time he wanted it. That break up had me crying in the street, in my office, on my supervisor and once on the bus, and those were good days, because I could leave the house. I barely ate and didn’t sleep for weeks.

 

I am very worried about starting a new relationship. I’ve promised myself I’ll start dating in January when I move to London, but I know I won’t. But I am scared of what will happen. What if I fall in love? How do you explain vulvodynia to someone else? Someone who has never heard of it before, who probably won’t believe you that it’s not an STI, not even with the NHS website open in front of him. What if I get rejected? What if he tells other people? I am not sure I am strong enough to handle another failed relationship.

The boy I like thinks we aren’t having a relationship, because I am leaving for London. He thinks I am cool with being a casual fuck and I’ve desperately been trying to play it cool, but I’m not sure I am. I like him, but I don’t want to lose a good friend just because I am shitty when it comes to sex. I’ve deliberately shot myself in my foot rather than explain what is freaking me out.

To my friends and allies that came out, you are all amazing. But I am still too scared, too ashamed to come out. The world we live in is changing its attitude to disability, but it isn’t changing its attitude to sexual health problems.

I can’t come out until I know no one will reject me. When no one’s eyes will be full of disgust at what I am telling them.  I don’t know when that will be.


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