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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: 1

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: 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


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

Feeling extremely down.

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Feeling extremely down.

Post  fedup.com on Sun Mar 24, 2013 5:40 pm

My problems started about 5 years ago when I was 18/19.

My symptoms started with pain after sex, at which point I went to my university doctors. On both occasions I went it was suggested I had an STI, and on both occasions the tests came back clear yet no further advice was offered. It was then just something I accepted but as time went on pain did get worse so it was occurring during and afterwards, sometimes unbearable.

After 3 years of that, I then went to my local GP several times. On the first occasion, I was diagnosed with herpes and sent to the GUM clinic, who quickly retracted that diagnosis. Next it was suggested I was suffering from thrush, after following a course of treatment that also turned out to be an incorrect diagnosis. My GP then put me on 10mg on amitriptyline on the hope that it would reduce the pain. After a year of visiting my GP and making no progress, I was then referred to a dermatologist at the hospital treatment centre and that was about a year ago. On my first visit I was diagnosed with vulvodynia on the entrance to my vagina.

My dosage of amitriptyline was then increased to 75mg each night which I found unbearable. I work as a teacher and found I couldn't cope with that amount of amitriptyline on top of the early mornings and light nights. I also put on a great deal of weight when taking that dosage, putting on a stone and a half. I was also provided with dilators to try and use to get comfortable with something entering the vagina! That is currently the situation now ... no progress, weight gain and feeling pretty miserable.

My boyfriend has been absolutely amazing throughout it all, really encouraging and supportive which has helped make things less stressful but I just feel like there is going to be no end to it all!

Did anyone else have similar treatments to mine and find them unsuccessful? If so, what other solutions do you have to offer? A| huge thanks in advance!!


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Re: Feeling extremely down.

Post  Alana3 on Mon Mar 25, 2013 2:33 pm

haha yup your story sounds exactly like mine except I refused to go on oral pills so they made a compound for me, but I don't think they do that where you're from. I decided to go ahead with surgery, but I'm not sure that's a big hit over there either. I tried PT which helped, but it was more my skin that was affected than my muscles, and it became excruciating. I guess google a vulvodynia specailst in the location where you're at and go from there, but other than the surgery nothing worked for me Sad I'm glad you had a boyfriend who is supportive, that's important too! Mine cheated on me so we obviously broke up and I felt like a complete loser, which made this whole process even worse. You can try lidocaine on it before sex and maybe that will help you- but you will have to use condoms (which I would do anyway) because his penis will go numb lol. But I would def try to find a vulvodynia specialist someone who does this everyday so they can help you better than a regular gyno. It took my forever to find one, but I am so thankful that I took the time to do so. I traveled all over the place looking for the right doctor and spent crazy amounts of money, but it was honestly so worth it.


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Re: Feeling extremely down.

Post  Kathy100 on Wed May 01, 2013 3:35 pm

Yep - your story is similar to mine first they said STDs but all came back clear, then cystitis gave me antibiotics, then thrush, then just take paracetamol,. Finally gave me amitriptyline but I couldn't take the side effects. Then I found a pain management specialist in v so now I take notriptyline which is the same class of drug as the ami but is newer & has fewer side effects. Also doing physio as my muscles are really tight and its starting to help. The best thing to do is find a dr who specialises in vulvodynia who can put together a treatment plan for you & discuss various options. Lucky you having understanding boyfriend - mine left! Mind you with this I prefer being single - ha!
Good luck.


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Re: Feeling extremely down.

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