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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Hello I'm new :)

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Hello I'm new :)

Post  candyD on Tue Apr 03, 2012 9:36 pm

Hey Like a Star @ heaven

I'm really glad I found this forum. You do tend to feel so alone with this condition don’t you? I don’t feel any of my friends or family would understand (and to be fair there’s some things I wouldn’t want to talk to them about) I'm 26 and I've had vulva pain for what must be about four years. I kept thinking it was thrush, constantly. Everything was so dry (it gets worse if I’m stressed). Anyway, that thrush test came back negative and I was referred to a consultant because I get vaginal spasms too. They had to knock me out to do a smear test! Anyway, so I have totally avoided relationships and sex for nearly four years (as I'm sure many of you have). I had an experience before that where the pain was so horrendous penetrative sex was impossible. It was my partner at the time who suggested I visit my GP. Ultimately the relationship didn’t last because of this problem and I felt so embarrassed and ashamed by the whole thing, I’ve given up. I really loved that my partner and I feel this condition robbed me of a great relationship. I mean there’s only so much patience a guy can have, right? My Mother (who really doesn’t understand) thinks that if I meet the right person, it will all magically fix itself Rolling Eyes and he might even come with me to get the problem sorted – meanwhile, in the real world….
Anyway the consultant has suggested that I try loads of moisturising cream in the area, I was prescribed a non-scented one but this isn’t really working. I’m used to having sensitive skin and so I don’t use scented products anyway. The other route he suggested is putting me on pills that normally people who have depression and epilepsy are given. There is NO WAY I am taking those. I’ve heard such bad press about those types of pills and plus he said ‘ooh they only make you a bit drowsy’. Really? A guy I know was like a walking zombie on epilepsy tablets, he couldn’t help it..he needed to take them for his actual problem. Surely there is some other natural way to ease or overcome this? I was thinking of Buddhist pain meditation. I’m going to try the dilators and numbing gel for the spasms and I’m going to have a chat with my GP next Friday about it all. I didn’t feel the consultant was very sympathetic to the problem…certainly not on an emotional level.
Sorry if this post was a big ramble. I didn’t realise how angry I am that the choice seems to be, take these tablets or face a very lonely life.
Does anyone have any advice or similar stories…


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Re: Hello I'm new :)

Post  charly24 on Sat Apr 07, 2012 8:39 pm


I'm Charly! I just joined this evening! Reading your story, it was like reading about me! Its good to know theres a place like this people can share their stories and know your not alone Smile.

I know what you mean about always thinkings its thrush, and then being told your thrush free! I went through a faze of buying pessary and creams like every couple of weeks! Shocked

I am dry too! Its so horrible! I'm only 24! I've tried so many things! Lubricants burn! Although, I have found that Sensilube works well, as it doesn't burn, and you can get that in most chemists and stuff. But its no use if you get spasms. I get those too! And I have recently been given a dilator, so I am hoping it works (fingers crossed). Numbing gel is a good start as it lubes and then numbs it. Just give it a little while to settle in! Its also very runny! lol. Gynaes say I need to RELAX lol. Its hard though when it hurts so bad!

I have used Bio-fem which is useful for comfort, and I often put a few drops of tea tree oil in my bath, as its good for soothing burning pain. I have also put apple cyder vinegar and baking powder in the bath when I am raw, sore and burning. Its unusual what you can put in there, but they can offer relief from pain. I found this on other on-line sites.

I am thinking about trying Yoga and different diets, as I get urinary burning too Crying or Very sad

I hope all goes will with your GP next week Very Happy


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Re: Hello I'm new :)

Post  charly24 on Sat Apr 07, 2012 8:46 pm

P.S. I tried those pills for over a year and they didnt help! I just ended up sleepy all year Crying or Very sad . I was so adamant in not taking them, but I was made to feel like I had no option! I felt like I wasted a year of my life!


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