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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 …

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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, …

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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 …

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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, 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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