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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 …

Comments: 1

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 …

Comments: 0

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

New member- Elyssa Morse

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New member- Elyssa Morse

Post  Guest on Tue Aug 30, 2011 1:24 am

So I'm sixteen and I haven't been officially diagnosed with vulvodynia, but my doctor believes that I have it. I lost my virginity back in April, and obviously it was painful. But, no matter how many times we had sex, it was painful and the burning actually get so bad that we would have to stop. I started to realize it wasn't normal, so I researched it and found an article about vulvodynia. All the symptoms matched up with what I was experiencing, so the next time I went to my doctor's, I told her that I believe I have vulvodynia. She examined my vulva/vagina and did a pain test. After the examination, she believed that my self-diagnosis was correct and she referred me to a gynecologist for treatment. Unfortunately, I don't have time to go to the gynecologist because I leave in a few days to spend 10 months in Germany (I won a scholarship to study there). I'm really frustrated because I wanted to be able to enjoy sex, if I had it, in Germany. Then, I found this water-based organic lubricant that said it could get rid of the pain from vulvodynia during sexual intercourse. I tried it and, sadly, it didn't make a difference. Then, I researched the causes of vulvodynia and one of the possible causes is hormone levels changing. I started on a birth control pill in February and I'm pretty sure I never had a burning sensation when sitting down for extended periods of time before I went on the pill. So, I think the cause of my vulvodynia may be the birth control pill (Ocella). I've decided that I want to go off of it to see if the vulvodynia goes away (even though I'll start to have heavier and longer periods again Sad ). I really hope it works. When I get back from Germany, I'm going to try different birth control pills if the cause of my vulvodynia was my current birth control pill. Anyways, I joined this forum to hear people's opinions, rant, and seek support.
Responses are appreciated Smile


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Re: New member- Elyssa Morse

Post  Sarah001 on Tue Aug 30, 2011 7:43 pm

Hi and welcome, have a good browse through the sections and see what you can find that will hopefully help you. There's not much else I can say really except hi.

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The Pill

Post  Aussie on Tue Sep 06, 2011 1:37 am

Please please please get off and stay off any hormonal birth control. Google Dr Goldstein and you will see his research about the pill causing vulva pain. The theory is that it perminantly alters your testosterone and oestrogen levels and something to do with sex hormone binding globin. Goldstein thinks that anyone with vulva pain should come off the pill and get a baseline hormone test. From speeking with a parmacy the best way to do this is via saliva testing because it test for only free hormones (which are the ones effected)

For me, even if there is any chance what so ever of somehting I am putting in my body causing vulva pain, I am going to avoid it at all costs.

There is research suggesting that if you start the pill in your teens you are 900x more likely to develop v. And the fact that you started the pill in Febuary and then got pain in April strongly suggests a conneciton.

My pain with sex has improved to the point it rarely hurts as long as I am properly turned on and lubricated. Daily pain remains unchanged. I have been off the pill for 2 months now. No period yet. But sex pain is heaps heaps better! (I have had pain with sex and daily pain for 1 year)

If nothing else just get off the pill.



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Re: New member- Elyssa Morse

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