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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 3

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: 8

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

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


Vulvodynia?

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Vulvodynia?

Post  acidfairyy on Mon Jul 11, 2011 5:02 pm

Hi all, I'm Nikki, 23 and from Warwickshire in the UK.

A couple of months ago I got my first ever UTI and ever since then I have had problems with feeling sore 'down there'. At first I thought it was another UTI, but it wasn't. Then I thought it was thrush, but it wasn't.

Three weeks ago I went to my GP who had a look and took some swabs. All the swabs came back normal. She said it looked red down there but she did say I have some small white spots in a line which she seemed quite perplexed about. I have wondered if I might have lichen sclerosus instead of vulvodynia, but my symptoms seem to fit vulvodynia more.

Anyhoo, she gave me some Dermovate and some Epaderm to use as a soap substitute. It seemed to be working, then it stopped. Then it started working again... but currently it is not working.

My symptoms are an almost constant feeling of soreness, and it tends to be triggered by getting hot and sweaty, going for a wee, or sitting on a hard surface (not ideal as my Saturday job has me sitting on a stool; I might take a cushion in). I sometimes got itchiness but that's pretty rare.

I have a follow up appointment with my doctor next Tuesday (19th) and she said if things haven't worked she will send me to a vulvar specialist. She is a brilliant doctor and she said the specialist is great too, so I am hoping I will get a diagnosis, just not looking forward to the inevitable long NHS waiting list!

So, does it sound like vulvodynia? I can't think what else it can be aside from lichen sclerosus, but I will definitely tell her I want this referral. It gets me down sometimes so I'm trying to stay positive, but I've only had it since April and I can't imagine living with this forever. Then again, there are worse things in life!

Nikki x

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Re: Vulvodynia?

Post  Sebby (Admin) on Tue Jul 12, 2011 6:01 am


Hi Nikki and welcome to the forum

Vulvodynia basically means 'vulval pain' and is a description of a set of symptoms rather than a diagnosis.

"Chronic itching, burning & pain that causes physical, sexual and psychological distress" - from The Vulvodynia Survival Guide (Glazer & Rodke)

Causes can vary so even if you do have it you need to research and try different treatments.

It sounds like a good idea to go to a Vulval Clinic, gynea and dermotology if you can. Hopefully the one your GP knows will be great, but here is the link to the list of Vulval Clinic's in the Uk if you need it

http://www.vulvodyniasupportforum.com/t230-list-of-uk-vulval-clinics#1424

The website has changed a bit so you do need to search for your area.

I have constant soreness too and its triggered by anything touching the area, sitting etc. I am trying the Pelvic Floor theory at the moment. Bascially that an unstable and tense pelvic floor prevents the vulvar area from healing and being healthy (by a release of certain chemicals and prevention of proper blood supply to the area)

I do suggest getting yourself a copy of 'The Vulvodynia Survival Guide' as it explains a few theories etc and is a good all round introduction to the condition.

So get yourself to a clinic and dont give up, you are already way ahead than many women who have rubbish GPs! Hopefully a good treatment plan can be drawn up asap!


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