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» Lichen Sclerosus
Yesterday at 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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: 11


My story- a long road to recovery.

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My story- a long road to recovery.

Post  jen007 on Mon Nov 19, 2012 2:14 pm

Hi Ladies!
I've been on the forum for a few weeks and I figured it was my turn to tell my story.

I've had vulvodynia for about 5 years now. It all started when I had tried to have sex. The pain was so unbearable...the only way for me to properly describe it is a sharp pain....like a hot knife made of sand paper was inserted into my vagina. Every time we had tried to have sex I'd have to run to the bathroom and take a warm bath to try to sooth the pain. This pain kept me from fully giving myself to my long term boyfriend. At the time I just thought I was too chicken to have sex, since I knew that sex was supposed to hurt the first time. After we tried with no success I'd cry...every time. I didn't understand why I couldn't just suck up the pain and get the first time over with. After trying about 5 times I started thinking this pain that I was feeling couldn't be normal. If sex had hurt that bad at first I don't think anyone would ever do it. So finally I scheduled an appointment with a local gyno. She checked me and told me there was nothing wrong, that I was healthy down there. I had explained to her that I had been having chronic yeast infections. I mean I had them ALL the time... and they were so painful. She then took a swab of the inside of my vagina, which felt just as painful as me trying to have sex, to test me for bacteria. She called me a few days later saying I had a regular yeast infection, but since I was experiencing pain she gave me a stronger antibiotic. BIG MISTAKE. After a few weeks of this doctors antibiotic I went on to finding another doctor since the other ones treatments never worked. I found a good womens internal specialist in a local hospital. After giving her my records from the last doctor she saw the medication I was prescribed. She explained to me that the antibiotic was for Mensa...a form of staff infection...something that would never have help me with the symptoms I was experiencing. I was so mad.

After all that the internal specialist helped me a lot. She wasn't sure, but she told me she thought I had vulvodynia. When she explained what it was to me it made sense for how I was feeling. I was relieved that I had a diagnosis, but so completely depressed about the entire situation. She put me on topical and oral gabapentin. It didn't really do much for me...so I had to try to find another doctor. So at this point its been 3 years, 2 doctors, and no proper diagnosis. I kept trying, for about a year, to find a new specialist in this area. I couldn't find anyone near me that specialized in vulvodynia. Finally I was suggested by a family member to call another local hospital. Since I had a little luck at one maybe I'll have more in another. So I called and out of pure chance they had a specialist. The hospital had a maternity center and gyno in one. They had 2 specialists who specialize in vulvodynia. I made an appointment right away an began different treatments. She had put me on amitriptyline and another compund cream along with 5% lidocaine cream. Nothing helped much. The amitriptyline helped a little once I got to a higher dose, but for some reason it made me loose about 10 pounds. Before taking the amitriptyline I was 120 pounds...After I was about 105 106 pounds and have continued to stay at that weight. My doctor told me if anything I should've gained weight, but it had an opposite affect on me.

After none of her treatments worked she talked to me about surgery. It was a last resort kind of thing. I had nothing left to do at that point. I could've done pelvic floor therapy, but my doctor told me that in the long run it would probably not help me. Now we were on the search for a proper surgeon. There was one in the hospital that had examined me, but he hadn't done enough surgeries and didn't feel comfortable operating on me. I had done so research online and found a book When Sex Hurts by doctor Andrew Goldstein. After reading it I knew I wanted him to be the one to do it. I brought the book to my current doctor and she said she'd try, but he's a hard guy to get a hold of. Somehow..again by chance...she went to a vulvodynia seminar and doctor Andrew Goldstein was the head speaker. She spoke to him after and he gave me a recommendation! After a few weeks I went in for an examination. He told me that I have PVD... Provoked Vestibuledynia. He said it was very localized and that a full vestibulectomy should fix me right up. So I scheduled the surgery. (I did a lot of research on the topic of surgery and found it was the best option for me.).

I had my surgery on July 6, 2012 at 10 am. Its now been 4 months and I've been feeling minimal pain. I still have a sore spot or two, but nothing like it used to be. Plus I was finally able to have sex! It wasn't pain free, but it will get better over time I'm sure. I'm still not fully healed yet...It take about 8 months to a year to be fully healed from surgery. So was the vestibulectomy a success? So far, yes it has! I have one painful area, but with dilators It should subdue.

If anyone has questions about anything please do ask! Also If anyone want details about the surgery and recovery I'd be happy to tell!

-Jen


Last edited by jen007 on Mon Nov 19, 2012 2:15 pm; edited 1 time in total (Reason for editing : spelling)

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

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