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» UK Vulvodynia Clinics
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» 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


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


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

How do you deal?

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How do you deal?

Post  Micrm on Sun Apr 20, 2014 8:17 am

I am in my 20s, a virgin and am completely overwhelmed with the thought that I may never have sex and therefore never have a functional relationship with a guy. How do you deal with this? I am rollercoastering between blocking out the thoughts and pretending everything is fine and completely breaking down and honestly not seeing a point to living.
Any help?


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Re: How do you deal?

Post  alessandria on Mon Apr 21, 2014 2:31 am

We all deal in our own ways, I think. Many people on this forum do have great relationships with their significant others, and find ways to be sexual and intimate despite vulvodynia. I'm also in my twenties, and actually was fortunate to have lived for a while without vulvodynia. When it started and it became clear it wasn't going away, I originally was devastated about the idea of not being in a normal relationship ever again. I am in no pain anymore, but vulvodynia caused me to really redefine my life and my goals in a way that was ultimately positive. I have discovered that by following my passions in my career and by making better friends than I ever have before, I became happier than I ever had been before any of this even started. Even though my pain is in remission, I still have little to no interest in dating, and it's because I've realized how wonderfully fulfilling life can be without a boyfriend and without sex, even though those had been so central to my life before.

Think about it this way: there are countless paths to happiness and fulfillment, and ANY of those are valid. Relationships are an easy one for people to get. But how about a deeply fulfilling career doing what you love? Or learning everything there is to know about the things you're passionate about? Having friends to explore the city and world with, and sculpting memories of new adventures? Being in your twenties is actually an awesome time to be single, try not to let the societal notions that you need to have a boyfriend and you need to have sex get you down. It's just an easy way to be happy, but honestly, it's far from the only one. Do some soul searching as to what you love, and chase after your dreams -- it feels a thousand times better than a relationship ever has, trust me. Smile You will be okay, do not despair. I'm always here by PM, if you want to talk.


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Re: How do you deal?

Post  Micrm on Mon Apr 21, 2014 3:05 am

Thank you so much for the reply. It gives me hope and I'm sure I will be contacting you. If I may ask, what did you do to get rid of your pain?


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Re: How do you deal?

Post  alessandria on Mon Apr 21, 2014 4:05 am

I think much like everyone else with vulvodynia, I tried a million different things. In brief, what I really thought the biggest things were:

1) Changing my diet and lifestyle: I became much more physically active, and just went to eating healthier foods (lots of vegetables, lean meat, less processed and refined stuff).

2) Changing clothing and cleaning: I honestly wore a lot of ultra tight jeans and lacy/synthetic panties before this all started, and continued to do so for a while. I only wear 100% cotton panties now, and don't wear anything that has any potential to chafe or compress the area. It's more important to be comfortable than to squeeze into the size 2 jeans that don't really fit. Smile I also stopped having sex, and did my best to stop irritating the area. Water is all you need to clean your genital region, soaps can and will irritate you if chemical sensitivity contributes to your pain. (Also, hypoallergenic laundry detergent is a good idea!)

3) This is by far the biggest one: I started doing physical therapy with a pelvic floor specialist. She was able to figure out weak muscle groups and postural issues throughout my body that were all contributing to increased pressure and dysfunction of my pelvic floor. The exercises we did together included a combination of core strengthening and determining how to walk/sit/move, and reacclimatizing my brain to equating a touch in my vestibule as simply being touch, rather than scary and painful. We also worked with dilators, and have gone from barely being able to tolerate the smallest one, to the largest one no longer causing pain. I cannot begin to tell you how wonderful a well-trained physical therapist can be in helping with vulvodynia, and especially in younger women, it seems to have pretty good success rates.

(This is very abridged, but I'm happy to give more specifics!)


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Re: How do you deal?

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