Wow. This post has taken me a while to get up the courage to write and hit publish on, but it's here, I'm doing it, and following a diagnosis and my first therapy session I think I can finally start talking about this. It might be a little TMI for some people so I don't know, if you don't like reading about sex and whatever then don't carry on reading and seriously if you're a family member I don't think you'll want to so stop right here!! It's also a pretty long one so grab a cup of tea and perhaps a snacklet and buckle up.
Vulva pain syndromes include all sorts of things, such as vaginismus, which is an involuntary tightening of the muscles in response to penetration, vestibulodynia which is provoked pain around the vulva area in response to stimulation, and vulvodynia which is unprovoked soreness and burning pains around the vulva. You probably haven't heard of them and I wouldn't blame you - I didn't even know they existed until about a year ago. I didn't even know this sort of condition was a thing. They're classed as psychosexual disorders, which is the category that other disorders come under such as erectile dysfunction, loss of sexual desire and gender identity issues. They can come about after a traumatic sexual experience such as assault, being told your whole life and therefore believing that sex is wrong and shameful, or fear of your vagina being too small, but you can also be born with this sort of condition and it can even come about due to hormone changes.
Mine specifically came from a traumatic and intensely painful first sexual experience in 2016 (it was the first time I'd been penetrated by anything, even a tampon) which I'm not going to go into any more details about since it involves another person and a little TMI and it's also just something I don't really want to talk that much about but to be honest, you don't need to know much more. I first realised something was wrong when I started to try and use tampons in Barbados about a month and a half after the incident had taken place, and I physically couldn't get them up there, and when I tried it hurt, like a serious stinging and burning sensation just around the entrance. I didn't think much of it at the time and put it down to just having a small vagina or even just a strong hymen. I wasn't sexually active for quite a while after the incident but when I tried to do it myself, I couldn't do it, it hurt way too much again and this is when I started to think maybe something was wrong.
To be honest, it's something that at the time didn't bother me that much. I wasn't very active at all and it's only very recently when I went to university and met a guy that I liked a lot and was regularly 'sleeping with' (obviously not the full monty lol) that it started to bother me more. Here I was, seeing a lovely guy who I felt 100% safe with, who I 100% trusted not to hurt me, I wanted to do 'it' with him and yet my body still wasn't letting me. The reason I'd brushed it off for so long was because I'd never been with anyone longer than one night and reckoned I'd needed to try with someone I was regularly seeing, but it still didn't happen. Just as a sidenote, your gal is still single, the guy and me aren't a thing anymore because it's a very tricky situation (much too complicated to be discussed now) but we're working on getting our friendship back to a good place and there's always the possibility that things will rekindle in the future, just very bad timing right now.
Anyway, I booked my first doctor's appointment at the sexual health clinic in Manchester on March 14th, to try and get some answers, a diagnosis and a prognosis for the future, but I still didn't know exactly what was going on so felt this was the best course of action. I'd always felt too embarrassed to go to a GP before but the sexual health clinic made me feel so safe. They didn't seem to know exactly what I was talking about at first as these conditions are pretty rare and some doctors just don't seem to know about them, but to be fair they were all so incredibly helpful. They did full STI testing just in case which they were very kind about, especially as internal swabs hurt a lot for me, and they referred me to all sorts of services, one being the psychosexual disorders specialist at the clinic, since they'll help me figure out which type of VPS I have and the sort of treatment I'll need from there. I do have to say I was incredibly nervous about that appointment. Something that's always worried about is that I'll be like this forever, and it means I won't be able to ever have sex, or have my own children and so on, so you can imagine how scared I was, while being strangely relieved that I'd finally have some answers.
Well, on Thursday I had my first appointment with the psychosexual specialist, which was my first pre-therapy consultation to figure out exactly the kind of therapy I'd need and that's what's happening. When I go back to uni in September I'm starting regular therapy. Unfortunately, it is the only cure at the moment for these conditions, since it can involve reconstructing how your nerves react to pain, unpacking attitudes towards sex and completely reconstructing the way your brain views sex, as well as physical exercises such as using dilators to try and retrain your brain to react in a positive way. Right now, we don't know how long it'll take and there's no magic wand that can be waved and I'll be cured, but I do (happily) know that the support structures are out there, even though they're much less common conditions (although one of my best friends at uni has one too which is so good - it's amazing to know people understand) and it's also good to know there's something I can do about it.
If you suspect you might have a VPS, if you're having pain or burning sensations around your vulva when you're faced with penetration or even unprovoked (this is much more common of vulvodynia) and you can identify with one of the causes, I would urge you to go and see a doctor, either a GP (remember you can ask to see a female one) or at a sexual health clinic if you feel safer there. It can be a really scary thing to face, especially if you're worried about the future or if it came from an experience like mine. But the sense of relief afterwards when you have a diagnosis and a hopefully positive future, is such a fantastic feeling to have.
Thanks to the doctors and the specialist I know that there's something I can do, I know that one day I might be able to have children and most of all, I definitely haven't given up hope, even though I came incredibly close. If you do think you have one and you're not sure you can go to a doctor yet, please know you can chat to me. You don't need to feel embarrassed, or like there's something wrong with you and you definitely don't need to be scared to talk about it. I'll also direct you to the Vulva Pain Society website, which I didn't even know existed until I was told about it the other day.
I hope you enjoyed this post about my condition, if you do want to talk to me further about it leave me a comment or if you want to talk to me in private slide on over to my Twitter DMs or my email. I'd like to do more posts updating on my progress and journey when I start in September, so if it's something of interest to you please let me know. I'll probably keep talking about it anyway since I really want to start undoing the attitudes towards conditions like these as they are really serious and can have serious effects on people's lives.
If you're one of those people who sniggers at erectile dysfunction, or lack of libido of vaginal conditions, I would urge you to rethink your attitudes. Before I knew what was wrong with me, it had a serious impact on the way I saw myself as a young woman, my confidence with anything sexual, my self-esteem and the way potential partners would see me. I thought I was unattractive and no one would want to date a girl they couldn't have sex with, and that I wasn't a 'real woman' because of it and the taboos surrounding this sort of condition don't help at all, and it's something that I'd really like to start to change. So if you're interested in changing these attitudes and perceptions with me then look out for the next post.
As always, be kind in the comments and thank you in advance for the support.
Em xx
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