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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

Hello I am new, and am looking forward for some support

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Hello I am new, and am looking forward for some support

Post  Feegal on Sat May 12, 2012 11:21 am

Hello wow, ( I feel soo silly for years I have had this pain for soo long, originally I thought I had vaginismus) for all those years talk more soon not feeling well wil write more later sorry all. I cant wait to connect with you al and explain my story to you all how its effecting myself & my husband soo not fun thats for sure. Sad

I feel I had vaginismus for years, but really didnt know what I had, & why was soo painful all the gyno exams, every time we had sex soo painful and frustrating, could never use tampons soo painful. I now am soo happy to actually find out what i really had, my gyno told me about a a really good therapist in Adelaide, his names marek Jantos.
At this stage, have only seen him once, he also does myofacial release too its amazing at what he does, afer i had some internal stuff done that day, found out how inner thigh pain can radiate up to that area, also buttock pain can do that too. I am not happy atm, as bleeding its just not a good time to get back into doing them. Where is everyone else re with this, any support any help will help me out soo much, just needing anyones feedback anything to help me though this makes it soo much better knowing a freind heard of this forum.
I feel i hve had this for years, but never knew it. I have anxiety too, we also went through ivf also, and unfortunately didnt work out. That was back when i didnt know about the vulvodynia just thought I had vaginismus.


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Re: Hello I am new, and am looking forward for some support

Post  sailirish23 on Sat May 12, 2012 9:42 pm


I'm new too. I didnt know anything about vulodynia until my symptoms appearred three months ago. If you would like to share some thoughts, let me know.



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Vaginismus diagnosis

Post  vulvarpainsurvivor on Sun May 13, 2012 12:52 am

Hi Folks,
Just wanted to comment that although I am not among those people who thinks "vaginismus" is a myth, I do want to emphasize that a lot of different types of vulvar pain get unhelpfully lumped under that diagnosis when it is not necessarily correct, or not comprehensive enough. I spent several years thinking I had vaginismus, too, when it turned out to be a (probably) congenital overgrowth of nerve endings in the vestibule. The result--extremely painful sex--is the same, so it's easy to be fooled into thinking your muscles are just too tight or you're getting tense when you have sex. And then there are the doctors who tell you to "just relax," as if you could relax when you're in severe pain.

When I started the physical therapy which I though would cure me of my "vaginismus," I eventually figured out that the tension or relaxation of my pelvic muscles had nothing to do with my pain. I used a biofeedback machine with a vaginal probe which showed whether or not my muscles were "firing." (The machine is available from Empi, by the way.) The higher the number, the higher the tension in the muscles and vice versa. I found that I could have a 0 or 1 showing on the machine and still have severe pain when touched at the opening of the vagina. So while the physical therapy did not solve anything in the end, it was very useful for getting me to try biofeedback, which helped me figure out that tension was *not* the problem. And, as a bonus, I did learn how to control those muscles really well, and probably strengthened them--good for your sex life in the long run!


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Re: Hello I am new, and am looking forward for some support

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