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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 …

Comments: 2

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 …

Comments: 3

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

Newly Diagnosed and trying to cope

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Newly Diagnosed and trying to cope

Post  mars215 on Thu Nov 10, 2011 4:09 pm

Hi everybody...

I'm 24 years old, and for the past year I've been dealing with IC. Within the last 2 months, I've also been diagnosed with provoked vulvodynia. Not sure if the vulvodynia was a result of the IC, or if something else caused it... but I'm having a very hard time with the treatment options. They just seem very invasive....creams, suppositories, phys. therapy... and I'm trying to normalize them since they will now be part of my life. But it's very difficult for me.

Does anyone have any advice on how to cope?

Also, has anyone tried decreasing stress and eating low oxalate foods? Has that reduced symptoms at all?



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Re: Newly Diagnosed and trying to cope

Post  Sarah001 on Thu Nov 10, 2011 6:28 pm

Hi and welcome. I think we all just muddle along as best we can, I'm not sure nyone really copes as such. Definitely stick to the physio though as the pelvic floor is a big problem in V and IC. Claire (Aussie) will probably have some words of wisdom for you as she has both too and is doing very well at the moment so she's living proof things can be drastically improved, not quite Australian day time yet though! Have a good browse and see if anything helps you or interests you and although the forum's been a bit quiet recently there are other women with the same problem here to chat to.

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Re: Newly Diagnosed and trying to cope

Post  itchyandscratchy on Tue Nov 15, 2011 11:52 am

Hi mars, sorry but not surprised to hear you're having a difficult time coping right now.

I've never tried a low oxolate diet, I tried a candida diet a while back and found that it didn't have that much effect on my symptoms, for me it's my hormonal cycle and stress levels that have the biggest influence. I would say that making my diet healthier over all (and maybe losing some weight as a result of that) has helped me somewhat.

As far as advice on how to cope, I'm not too sure, when I was first diagnosed I was quite depressed for a while (constantly on verge of tears e.g.) but as I got used to managing it day to day, figured out what I could wear and what I could eat, when in my hormonal cycle I can expect it to get worse, I started feeling a lot better and my mood's pretty much back to normal now.

These sections might be of use to you - Physiotherapy and Biofeedback, Celebrating the Positive.

Hope this is of some help x

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Re: Newly Diagnosed and trying to cope

Post  mars215 on Wed Nov 16, 2011 3:17 am

Thank you Smile I really appreciate both of your comments and kind words.


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Re: Newly Diagnosed and trying to cope

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