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» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

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» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Do you know what your "cause" is?

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Re: Do you know what your "cause" is?

Post  Sarah001 on Tue May 07, 2013 5:57 pm

With me it was very, very obvious, my pelvis has been severely unstable for 9 years due to another condition and my V started after a physio had me use extra pelvic floor activity during exercise in an attempt to gain some stability, it didn't work and left me with V so an additional problem for the last 3 years of the 9. After being silly and doing as you say "fighting symptoms" I finally went to a women's health physio who checked my resting tone, 2 or below is normal, some women can have problems at 5 and around 15 was the highest she'd seen in 30 years so my resting tone of 20 that crept up to 29 when I was totally relaxed talking to her was a bit of a giveaway too! Because of my other condition I have to be very careful and can't have my pelvic floor released yet so I'm not a good example of typical PFD. I do find relaxing the pelvic floor helps my V though and clenching makes it much worse so again pretty obvious with me! Physio is a longterm situation so some women would be fine after a couple of months and others take much longer, the only way to know if you should stick with it is if there is still some trigger points and spasm to release and/or areas to realign and stabilise. Only a trained physio would be able to tell you if those problems exist on you and it really is worth going to one and finding out.
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Re: Do you know what your "cause" is?

Post  juleps on Tue May 07, 2013 7:21 pm

thanks for taking your time!
i also had pysio but it seems not to help me so well, although i also have to admit it is hard to find time forall the exercises al the time. but my physio concluded that i seemto have no issues to relax my muscles and it seems to be the skin.
now i dont know if i should just be more patient or assume that is not my ideal treatment.

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Re: Do you know what your "cause" is?

Post  Kathy100 on Wed May 08, 2013 10:47 am

Hi Juleps

I'm having physio at the moment too as I do have issues relaxing my muscles. Earlier on I went to see a vulval dermatologist to check whether it was a skin problem. For me it wasn't, so the next thing to try was physio. I think Sarah is right you have to know the cause so you can find the treatment that's the right one for you. Unfortunately this can take loads of time (and money). If you haven't already it may be worth seeing a dermatologist to check whether it is a skin problem. Good luck.

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Re: Do you know what your "cause" is?

Post  Kathye10 on Wed May 08, 2013 2:29 pm

Hi Girls,

I agree with Kathy, seeing a derm will definitely rule out certain skin problems and the biospy isn't that bad. If you can afford it, DO IT! Very Happy

I had a vulvar biopsy done. At the time I had folliculitus so it showed that I had that, and some other type of inflammation but no word on what it was. They ruled out skin diseases, so who knows. The process like you said, is lengthy, expensive and frustrating as hell. I'm seeing a PT on the 20th to rule out PFD. I have a feeling the muscles have a lot to do with it.
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Re: Do you know what your "cause" is?

Post  Alana3 on Wed May 08, 2013 3:11 pm

I saw a vulvar specialist, best thing going, expensive as hell, but so worth it in the end! If you can find one you should go seriously Smile

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Re: Do you know what your "cause" is?

Post  juleps on Wed May 08, 2013 4:41 pm

ok so a dermatologist?
what and how do they tests things?
does anyone actually have the skin as the issue as the seems for most people it´s muscles?!

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Re: Do you know what your "cause" is?

Post  Alana3 on Wed May 08, 2013 5:11 pm

Mine was skin and nerves once I had the surgery I was fine but no dermatologist is going to be able to diagnose vv unless they're specializing in vulva issues

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Re: Do you know what your "cause" is?

Post  Kathye10 on Wed May 08, 2013 7:07 pm

They will need to biopsy a piece of your skin. Some ladies have this due to a skin condition, others bacterial/yeast issues, others pelvic muscle probs, etc. Try and find a derm that specializes in the vulva.
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Re: Do you know what your "cause" is?

Post  Sarah001 on Wed May 08, 2013 7:08 pm

I saw a vulvar dermatologist, there are a handful in the uk and they travel around the hospitals and run one clinic a month in several they cover so yes there are vulvar dermatologists out there and they also deal with prescribing pain meds for V too if it turns out not to be a dermatological issue. A biopsy is a possibility when you see one but it depends what there is to see.
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Re: Do you know what your "cause" is?

Post  Kathy100 on Thu May 09, 2013 10:42 am

Mine examined me but didn't do a biopsy as she said the skin was healthy.

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Re: Do you know what your "cause" is?

Post  Ridgwell on Sat Jun 08, 2013 1:15 pm

When the pain started for me during sex I just kept saying it would fade that it was just an odd circumstance that wouldn't last. Weeks of this I finally went to the doctor who told me I had thrush which I treated and the first time I had sex afterwards the pain was gone. Then next time it was back. I went back to the doctor and had multiple tests again an everything came back clear and so I was sent away. This happened with multiple doctors and the pain continued until I was finally diagnosed with vulvodynia. As they say the cause is often unknown, but I think the cause for myself may have been the thrush

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Re: Do you know what your "cause" is?

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