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I think I have vulvodynia.

7 replies

JustALittleBitEmbarrassing · 06/06/2018 20:13

I've named changed cos it's a bit of an embarrassing topic.

I'm 25 soon to be 26 and have been with my partner for over 2 years. Before being with him I'd only ever slept with one other person and we only did a handful of times (excuse the overshare, my point being that I'd never had enough sex to notice if it was there before my current partner.)

So for the entirety of our relationship I have had issues with sex being so painful for me. The only way I can describe it is like someone pouring acid over my bits! It burns so badly during sex and then afterwards for up to an hour.

I also can't use tampons without pain or if I press on the outside of my vagina or sit down on a hard surface for too long I can feel the pain there still.

As I got pregnant very early into our relationship when I mentioned it to doctors it was widely assumed that it was just thrush.

After birth I used all manner of thrush treatments while seeing my sexual health clinic. They literally gave me every thrush cream and pessary out there and it didn't stop it.

All other tests came back negative so eventually the clinic said to me they had no idea what was wrong and couldn't help me any further.

My smear test at 25 came back saying I had mild changes and HPV. Saw the gynecologist who said everything looked fine and nothing to worry about. Don't know if the HVP could be causing anything??

It's at the point where it's putting a strain on my relationship with my partner as I am afraid to have sex because of the pain.

The only thing I can think it is is vulvodynia.
Does anyone out there suffer from this too? Any words of advice on how to manage it or is this a life long thing I'm going to have to deal with?

OP posts:
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JustALittleBitEmbarrassing · 07/06/2018 07:57

Anyone?

OP posts:
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JuliaRobbers · 09/06/2018 20:04

Sounds like vaginismus. Do look it up.

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WingsofNylon · 10/06/2018 08:35

Hello. I know quite a lot about this having had to do my own research and see private specialist doctors.

From what you have described if say you are right Vulvudynia fits. I'd disagree with ok. Vaginismus is different. I have vaginismus and that pain is internal and feels like a muscle hearing and make sex hard because of how right the clenched muscle makes my vagina. So as well as the symptom of pain another key symptom of vaginismus is tightness. There isn't the physical space for a penis never mind an entire baby to pass through my vagina when untreated. (Not everyone's symptoms are as bad as mine)

When my specialist doctor was testing to see which of the two i had he touched all around the outside and asked if it hurt ( it didnt) that's how he knew it was vaginismus. Volvu seems to be more or a nerve pain whereas vaginismus is more muscular.

I suggest you look up the London Pain Clinic. They will be able to give you a proper diagnosis. I've not used them as i was in the US at the time but I've heard good things.

Chin up, there are treatments for both and life can get better. Xx

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JuliaRobbers · 10/06/2018 11:19

Wings - wow! I didn't realise there were more than 1 such condition!

How are you dealing with your problem? For me stress was the underlying cause and counselling is what improved my situation coupled with live & relaxation. In the end it was another vaginal delivery which resolved it (nearly) completely. Good luck.

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JuliaRobbers · 10/06/2018 11:19

Lube not live Grin

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Shadow01 · 10/06/2018 19:04

I have vulvadynia, it took nearly a year and seeing a specialist after many other appts to diagnose it.
It’s not as bad as it was, at one point I was on oramorph but it’s still painful.

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WingsofNylon · 10/06/2018 19:27

Julia, there are probably more by sadly so little is known about them. I recall my first doctor looked confused and said that he was used colds and broken good so didn't have a clue how to help me!

My was caused my sexual assault in my teens. I actually went for botox treatment with Dr. Pacik, a guy who really pushed for decent treatment d the condition. It was much better after the treatment including using dialators. that was a few years ago now and some things have triggered it again sadly but I'm working on it again.

I just remember before I fully understood I felt so sad and alone. I hated my body and felt like I wasn't a real woman because of it. I still have hard days but feel so much less like a monster now.

Best of luck to all of you.

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