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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

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Vulvodynia diagnosis...now what?

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Vulvodynia diagnosis...now what?

Post  Lancslady on Wed Jul 04, 2012 6:13 pm

Hi there all!

I am a newbie here as I have just been diagnosed with Vulvodynia. It has been a long journey, and involved some experiences with consultants who are less than helpful.

Initially I was relieved to finally see a consultant who seemed to believe what I was telling her and actually had a 'name' for what I have been suffering. But now I am in the minefield of information and am not sure what to do or where to turn first. I have been prescribed a low dose of Amitriptyline but I am nervous about taking this due to the side affects, what experiences have any of you had with this? I would appreciate any feedback?

I suffer from pain on touch and therefore intercourse. I have been with my partner for 10 years, and we got married this year, which is fab, but our sex life is suffering due to this condition. I am lucky, he is very helpful and understanding but I just want a normal sex life. I have suffered with this for about 5 years, but it has got increasingly worse in the last 2 years - and it is very draining. I suffer from intense burning and aching after intercourse and at times have an unexplained pelvic ache teamed with stabbing pains at other times - not a result of intercourse.

Do any of you have suggestions for help? I have read about the gels that numb the area etc, how useful is this? We are going on our honeymoon next month and I was really hoping to be able to try and have some form of a normal sex life Smile

Please share you advice with me, I would truly appreciate it! Very Happy


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Re: Vulvodynia diagnosis...now what?

Post  April lily on Wed Jul 04, 2012 8:33 pm

Hi my name is April

I am also fairly new to this forum too but it has been a great help i have gained some really good help, advise and support from it. It just a nice feeling to know that you are not alone feeling this way and can chat and relate to people, it has been very good for me and i really hope it helps you too Smile

I am very similar to you in the symptoms that you have shared.
When i first got diagnosed they started me off on a low dose of Amitriptaline too, i am now taking 75mg. My side affects are very mild i just feel a bit more drowsey at times but it is nothing major. It has controled most of my inner pain whilst having intercorse, it still hurts at times but it has helped the over all pain alot.

I tried the lidocaine 5% gel, i got it prescribed by my Dr. as i have pain out side to even the slightest touch is painful especially around my clitoris area it is awful. It seemed to work for the first few times of using it it really did make a difference, i just appyed it 30 mins before i had intercorse (which isn't very romantic unfortunately it had to be planned! but needs must) So may be give that a try it may work for you and help you.
Although for some reason after a few times of using it it started not to agree with me it felt burning and saw and itchy so i told my Dr. and she gave me a lower percentage i am now using its called Vagisil it has 2% of lidocaine in it, which i find excellent as it helps with soreness and itching after sex too.

Also i use Yes lubricant which i find really good and effective as when i used other lubricants from supermarkets they made me sore and itchy afterwards which wasn't nice.
I buy the disposable applicators which are really handy because it sends the lubricant inside the vagina instead of just around it which i find helps the pain also.
The Yes lubricants are for patients with Vulvodynia it says why it is good for patients etc. on the website we are advised to use the 'water based lubricants' that's what i have and i have had no problem with them i think they are fab!

I hope this has been helpful too you and hopefully some of the products that have helped me will work for you too.

Take Care x

April lily

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Re: Vulvodynia diagnosis...now what?

Post  April lily on Wed Jul 04, 2012 8:34 pm

PS. Here is the link to the Yes lubricant website if you want to have a look Smile http://www.yesyesyes.org

April lily

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Post  Lancslady on Wed Jul 04, 2012 10:30 pm

Hi April

Thank you so much for you reply and the advice you have given me, it is, as you say, comforting to have a place to discuss this horrid condition and know that people understand.

I am certainly going to try the lidocaine gel and the 'yes' lubricant, it seems a good place to start. I still have concerns about the Amitriptaline, but then I suppose I really can't cope with it much longer so maybe I should try anything available.
I really appreciate your help and ideas, having found this forum from the advise of the consultant I now have lots of reading to do to understand how to try and control things, but just knowing that I am not abnormal and not alone in this counts for so much.

Will keep you informed of progress. Very Happy



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Post  blessed on Wed Jul 04, 2012 11:36 pm

Hi there.. after 6 months of unanswered questions and extreme torment, i was diagnosed last week with vulvodynia. the doc said there is no cure, no hope..but he gave me Amitriptaline to try and get some relief. so far its been 4 days and though i have to give it some time to work, its doing a number on the rest of my body. i have terrible headaches, nightmares and i feel drowsy and dizzy during the day though i take it at night...i hope after a while these effects would wear off and the pain would subside.. but time will tell..


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Right there with ya!

Post  jmcmil on Sat Jul 07, 2012 4:00 am

Hey, I take Amitryptaline and it does have some side effects, particularly drowsiness. Give it a few days to get into your system and the side effects should go away. Good luck and we are here to support you!



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