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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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: 4

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

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

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: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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: 0


My story and cure

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My story and cure

Post  Irish_Girl on Sun Feb 09, 2014 8:56 pm

Hi everyone, I really sympathise with everyone going through the various stages of Vulvodynia, believe me I know how you feel! I thought I'd share my story so that readers know there is hope and that finding a cure is possible, despite how hopeless the situation can seem. I'm going to try and be quite descriptive with my symptoms, as I found reading others descriptions when I realised I had the condition helped me diagnose my symptoms fully, and aid the cure process.

I'm from Dublin in Ireland and have been pain free for almost three years. I'm 26, and I first started seeing symptoms when I was 22, and the pain began as a result of what I thought was a yeast infection (I'm prone to getting them). The pain was sharp, throbbing and consistent in one specific area (just outside the entrance to the vagina, and I also experienced some internal pain as well), I had never been sexually active so the pain wasn't caused from anything like that, but there was also some external symptoms in the form of swelling (but no itchiness). The pain was unprovoked, though if pressure was applied to that particular area, it would also become more intense.

Long story short, I saw several GPs for about two months, and all prescribed me with the same topical creams and antibiotics one would use to treat a yeast or bacterial infection, and nothing worked. The pain remained the same day in, day out and I slowly sunk into depression and started to spend all say in bed, refusing to eat etc,, I was in a bad way. It's worth noting here that I've had Mild Cerebral Palsy, my whole life, though my physiotherapist couldn't find anything to tie up the two. My pelvic muscles are also in really good shape (so I'm told!), so doing this form of excersize didn't help me in any way either. I eventually went to a swiftcare health clinic when I couldn't take any more, and they found an ulcer which, despite careful self - examination and visiting quite a few GPs, we all seemed to miss! I was then referred to a Gyn who did a few tests, and as soon as I mentioned my symptoms, he told me about Vulvodynia.

Unfortunately, he doesn't practice anymore, but it can't tell you how much it helped that right from the get go, he was so supportive of me. I went under general anaesthetic twice so that he could take a closer look at things (I can only stretch so far when awake due to the CP), and he did a biopsy and not only removed the huge ulcer, but discovered that this had pretty much been blocking the entire entrance to the vagina, causing blockages of discharge etc.. I found it odd that I didn't notice the ulcer, but because of my narrowness and the fact that the ulcer was difficult to see, he said I never would have been able to myself. Anyway, you can imagine my happiness that there was a reason for my sharp, throbbing external pain, but even after the ulcer was gone (and it took about 6 weeks for the stitches to heal, which was very painful in itself), the internal pain remained.

I began to get depressed again, because it was the daily, internal pain that bothered me the most. In tears, I returned to my gyn and we decided that he should take a look internally as well. When I went under again, my gyn concluded that the entire area (internally and externally), was hyper-sensitive, thus causing the internal nerve pain. So he prescribed me a six month dose of Gabapentin - 350mg, 3 times a day. During this time, I did all the usual things like only wearing loose fitting clothes and cotton underwear, and avoiding perfumed products and I didn't even think about sex - I couldn't until the pain was resolved. What helped me was the reassurance of my gyn: "if this doesn't work," he said, "we'll keep going until we find something that does." So, girls if you're not happy with your gyn, try looking for another who'll offer more support. And after about 6 months on the tablets three times a day, the pain stopped as quickly as it had started and I haven't had to take a tablet since, and that was three years ago. I do think my pain was amplified due to the fact that I couldn't focus on anything else (and how are you meant to stop this because of where the pain is?!), but I knew I had to try, so I stopped reading about the pain etc and as I continued to take the tablets and felt the pain lesson, I decided to try and change my outlook and think positively about my pain: I was going to defeat this, it was not going to consume me anymore, the way it had for over 18 months. And I took more tablets and after two years, the pain was just not there anymore and I weened off the pills.

It was a long, painful and stressful journey, but I found my cure, despite all the hard work and tears in between. Even to this day, I'm conscious that the pain could rear it's ugly head at any time, so I always try and keep a prescription on standby in case I need to start a dose of them again. I'm not hugely sexually active by any means as a result of all this (I'm conscious that given my history, sexual activity will trigger the internal pain so I approach this side of things a little warily than I might have if this hadn't happened unfortunately), but when I did attempt it when the Vulvodynia pain subsided, it wasn't hugely uncomfortable at all (it was for other reasons, but this had nothing to do with my Vulvodynia pain), and now it's (thankfully) virtually pain free - yay! Sorry about the length, but I hope this will encourage others to keep looking for a solution and know that it is possible for the pain to subside and for your normal life to resume again. I wasn't prepared to give my life up to this pain, I was going to find a cure, and if it ever starts up again ( as I'm fully aware it might), I'll find one again.

Good luck everyone, I know it's tough, but keep trying to get through it xxxxxx

Irish_Girl

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Re: My story and cure

Post  mary jane on Sun Feb 09, 2014 9:56 pm

THANK YOU FOR POSTING THIS STORY. GOD BLESS YOU AND ALL THERE IS, I am also on 50 mg amitriptyline and it works for my nerve pain, I am positive if I add more meds I will be able to live a better life

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Re: My story and cure

Post  Irish_Girl on Sun Feb 09, 2014 11:00 pm

Thanks Mary Jane, I hope it works for you. It's very much trial and error when it comes to defeating Vulvodynia, and about finding a combination that works for you. The problem I had with this was the pain that your left in up to this point! I know just how awful it can be and reading stories that had positive outcomes helped me to stay sane and gave me hope during the worst of days. This forum is fantastic; having support like this is so vital. Before I found my gyn, I was very much coping with it alone, which was one of the toughest parts.

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my vulvodynia experience...

Post  Gemini23 on Tue Jun 10, 2014 6:20 am

hey so I am new here and very confused by this site! I don't think I even posted this correctly...sorry if I put it in the wrong spot! I'm not computer savy.... So I started developing vulvodynia as a teen in highschool and I'm now 25 yrs old. at first it was only one side of my vestibule that I experienced the burning pain in and it would come and go. Usually it only lasted a few hours and was mainly in the left side of my vestibule. It would also be accompanied by a thick yellow discharge that was nearly impossible to get out of my undies. these symptoms would come n go frequently and I never told anyone about them. then as highschool progressed so did my pain. now my whole vestibule hurt everyday and the pain free intervals just got shorter and shorter. the yellow discharge became an everyday thing too. I saw one obgyn after another & none of them knew what was wrong with my vagina. they tested me for yeast, b.v., and every std you can think of but nothing ever came back positive. (I started having sex after I developed the vestibulitis & yellow discharge btw) I also saw a primary care doc & even a chiropractor & a urologist. no one knew what was wrong with me though. finally an obgyn referred me to a specialist (vulvologist I believe..) who diagnosed me with provoked vulvodynia. I tried a lot of the antidepressants and also the topical lidocaine cream but none of that stuff worked. I also went through nearly a year of physical therapy, which helped but didn't cure me by any means. topical steroid cream that my doc gave me to help with the psoriasis I had around my vagina helps a lot for the vvs pain. I am over taking dangerous prescription pills to treat this so at this point I am looking to just heal my body the natural way. I am not sure what caused my vulvodynia but I think it started when I was 16 or 15. I never had trouble with yeast that I can recall, but I won't rule it out completely. Diet always plays a role in disease and disorder in the body. I think poor diet, severe chronic insomnia and severe chronic stress had a lot to do with the onset of this illness for me. I have also had fibromyalgia for quite some time now as well. I almost feel like my vulvodynia is just a symptom of my fibromyalgia. they both started at the same time I think. I believe this also all has to do with inflammation in the body. when I was on prednisone after I got my wisdom teeth removed, my vulvodynia and fibro were not as bad as usual, so it's clearly inflammation related just like the psoriasis patch around my vagina and other parts of me.

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