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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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 …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

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 …

Comments: 1

Hello, just introducing myself

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Hello, just introducing myself

Post  Steff8 on Wed Jul 13, 2011 3:13 pm

Hi, I am new here. I live in the U.K. but was born and raised in the U.S (married to a Brit). I have had v.vestibulitis for around 8 yrs now (ugh). I only have pain with penetration. I had a normal (healthy)sex life up until then. I am on amitriptyline and taking calcium citrate. I think the calcium has helped somewhat and am considering coming off of the amitriptyline to see how that feels without it. I have had very little helpful treatment from U.K. doctors and am beyond frustrated. I had yeast infections off and on and was on the pill for many years (no longer), I am curious to find out more about what people think these things have to do with this problem. I just had an appointment with my gp today because my periods have gotten really bad (one week of cramps/spotting, followed by a real period); this has happened since I came off the pill due to having a blood clot in my leg last year. She wants me to consider the Mirena coil but I am scared it will make things worse, but am sick of the bad periods. Anyway that's my glamorous tale, hope to learn some helpful information here thank you!


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Re: Hello, just introducing myself

Post  Sarah001 on Wed Jul 13, 2011 6:56 pm

Hi Steff and welcome to the forum. I know lots of ladies here have had yeast infections, myself included, but I'm not really sure how they're connected as lots of women without V have lots of yeast infections too. As for the Mirena, I'd be very careful about that, my friend had one fitted and it gave her burning mouth syndrome so it may well make the V worse. Anyway, have a look around and ask anything you want to, if we can help we do. Wink

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Re: Hello, just introducing myself

Post  Sebby (Admin) on Sun Jul 17, 2011 9:26 pm

Hi and Welcome to the forum

I dont have a lot of faith in the uk doctors. Only met one that really understood.

I ended up researching the condition myself asking for the meds I wanted and paying for a biofeedback machine myself to do home treatment from www.vulvodynia.com - have had a break in treatment and a bad flare up recently so will not know how well im doing for a few more months yet

Keep researching and reading up on things, you will find the right combination of treatments even if you have to pester the doctors for them!


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Re Hello, just introducing myself

Post  Joolibee on Mon Jul 18, 2011 9:13 pm

Hi there, just wanted to comment on the mirena coil idea. I'm not going to advise for or against, but will tell you about my experience. My vulval pain came on very gradually over a number of years, involving UTI symptoms that did not always test positive for infection. I also had lots of uncomfortable brown spotting for up to a week before my period started. Then my periods became so heavy that I started to 'flood' in public. My GP suggested a mirena coil and referred me to gynea. At that point I did not know that I had vestibulodynia, as the pain was mainly manageable and I thought it was just perimenopause. Having the coil fitted was excruciatingly painful and the pain remained quite severe for a couple of weeks afterwards. It was after this that sex became completely impossible and the pain seemed worse than ever. I also spotted for 6 months, but no more heavy periods. When I had my check up, I mentioned the pain and the gynea said she did not think the mirena was the cause. I was too scared to have it removed, as I thought it might make the pain worse still. Anyway, I eventually forgot about the coil and embarked on various other treatments with variable success. I remembered the mirena a few months ago, when I realised that my periods have stopped so I no longer needed it. I had it removed in May and the removal was not too painful. However, with regard to my vulval pain, it has made no difference whatsoever. So I don't think the coil was directly connected to the v pain. It was just that a procedure that is painful for any woman was particularly painful for me. Good luck making your decision. If you do decide to get a mirena, I would ask for some anaesthetic / strong painkillers to help to deal having it fitted.


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calcium citrate

Post  Heidi on Sat Jul 23, 2011 1:59 am

I forgot to add that I also take timed calcium citrate and am on the low oxalate diet. Both help me a lot, although the low oxalate diet has really been the key for me. I've kept a journal of my treatments and tried to only add or delete one at a time (wait a month or so), so I could see really see the effects of the treatment. For example, looking back at my journal helped me realize that eating tomatoes was causing me to flare-up 2-3 days later (as did eating any high acid or high oxalate food). Of course I was in a continuous flare for the first few years; it was only after I started getting better on the diet that I could tell that something made me flare-up (severe pain, burning, itching).


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Re: Hello, just introducing myself

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