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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

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

Heya,

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


so happy to find you guys!!

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so happy to find you guys!!

Post  Nic on Tue Apr 10, 2012 6:37 pm

just wanted to say hey to everyone, cannot explain how happy I am to find this forum. I'm 25 and have had provoked vulvodynia for over 6 years now. The pain began when I became ill and was treated for months with antibiotics for glandular fever. I was first treated for severe thrush but when this went away and the pain remained, I was sent to the GUM clinic several times , everytime being told I was fine. After about 2 years I decided to go private and saw a bupa gp who told me I had a chronic fungal infection and advised me to change my diet. because of this I saw a nutritionist who put me on the anti-candida diet, this helped a little but still sufferring I decided to go back to my gp. I was then referred to a counsellor who after a few sessions was the one who recognised my symptoms and referred me to my local gyno David Nunns who diagnosed me with provoked vulvadynia. Since then I feel like I have tried everything - all the creams anti - depressents, lidocaine, dilators, I saw the physio but on the session i said that I felt it was helping slightly ( to me this was from pain that was making me cry my eyes out to pain i didnt cry as much!) I was told that was all she could do and I was being discharged. The only thing I feel that has helped me the most was acupunture but I just cant afford to carry this on at the moment. When I was referred to my gyno I was so pleased someone believed that I was having pain and that there was even a name for it, after researching I found that he was also involved in a lot research. However (might just be my experience) but I have not been to the hospital for over a year now as I feel like I'm not really listened to and have been asked several times if theres anything Iv seen on the internet (is it not his job to tell me whats available?!)
I feel so up and down with vulvadynia its ridiculous, iv accepted that iv got this condition and have been in a relationship for 7 years with the most supportive boyfriend i could ask for but at the moment I feel like I'm starting on the down again. Everything else in my life is the best its ever been at the moment apart from my vulvadynia which seems to be at its worst. I have a new job as an air hostess and I'm not sure if its that my body is under a lot of stress and tiredness that this is effecting it but I'm worried that me and my boyfriend are going back to not being physical at all because I know its going to be so painful again. I just dont know what to do anymore, I'm so sick of trawling the internet looking for something to take this away. I'm so sorry this has turned out to be quite a long post, got a abit carried away with typing to people that understand, can feel so alone sometimes! but anyways, hi everyone, its not great that we've all got this crappy thing but its fab to have finally found you all!! xxx

Nic

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Re: so happy to find you guys!!

Post  Sarah001 on Tue Apr 10, 2012 7:23 pm

Hi Nic and welcome. I'm really glad you posted that about David Nunns, I was supposed to be referred to him but it went to pain management instead and I've been mulling over whether to push for an appointment but conversations with my physio about what can he offer me that I can't get closer to home and your post have decided it for me and I'm not travelling hours to see someone who doesn't have anything different on offer, I too thought he'd be good because he's involved in research but seems he's maybe just a bit more interested but not better informed. Anyway, I was wondering if you had alot of physio or if you were given the 6 sessions then out that alot of hospitals have now? It seems a very odd point to stop physio if it started to help a bit! Did the physio look at your posture, gait, alignment as well as focus on your pelvic floor? I'm very interested in the physio side of things as that's what I'm currently pursuing but I have a couple of other complicating conditions that are making it very difficult and long winded! Have a good browse and again welcome.
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Re: so happy to find you guys!!

Post  naomi on Tue Apr 10, 2012 9:23 pm

Hello Nic and welcome to the forum!

Ur condition sounds v similar to mine. Provoked vestibulodynia/vulvodynia, all started from yeast infections, anti's.

I've been round the block regards specialists, I think David nunns was my 8th or 9th. He was useless, I saw him twice and I knew that using vibrators to stretch my vagina wasn't the way forward...tried telling him its pure agony, the skin cracks and bleeds. I gave up on him!

Was meant to have vestibulectomy tomorrow but had it cancelled today as I realised (after more painful prodding) that the sore areas were more than he was going to remove with a partial vestibulectomy. Also a part of me still thinks the doctor crandall yeast theory still gives a good fight for the reason I am where I am!

Glad u found us! I think I would have gone loopy by now without the forum and our Facebook group!
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Re: so happy to find you guys!!

Post  Sebby (Admin) on Fri Apr 20, 2012 8:02 am

Welcome to the forum, I hope you find the support and advice you need here. You said that accupuncture helped. Is there no way you can get this on the nhs? Might be worth digging around to find out if there is a legal loophole where they have to fund it if its the only thing that's helping?

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hello

Post  chanel825 on Wed Apr 25, 2012 7:50 am

Sorry you are suffering but please know you are not alone. My vulvodynia was so bad I could not have intercourse and with the nerve block Marcaine helped me alot. I dont know if you would like to ask your doctor about that. What I still have in no pain with intercourse but a lot of discharge and burning that has not gone away. It is very gross and very uncomfortable. God is great hope u get better

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Re: so happy to find you guys!!

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