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» Please tell me this can get better
Today at 2:10 am by anon99

» Acupuncture advice please
Today at 12:00 am by Bx11

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

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

Wed Feb 14, 2018 3:33 am by Athena


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 …

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Sat Feb 10, 2018 12:18 am by rockylife


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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 …

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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

Just needed to share

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Just needed to share

Post  tweety on Sun Mar 14, 2010 10:24 am


My name is Sue. I've been dealing with Vulvodynia for 8yrs now so am grateful to have found this forum. I'm a very private person and up until 3mths ago (when i told my close friends), the only people who knew where my dr, bf at the time and myself. Although my friends are supportive, I dont think they can fully understand what it's like to have this condition. I have seen two r/ships end and am at the point where I don't know what I want to do about this problem anymore.

In my initial consultation with a doctor, I was fortunate to have one who knew about the condition. She couldn't even use a cotton swab in me without making me jump out of the examination chair. A gynaeocologist also confirmed the diagnosis.

During the first r/ship, I was on an anti-depressant medication to help with the vulvodynia, used lidocaine gel and also went to a physiotherapist. I found the physio treatment quite beneficial as I was never aware of my pelvic muscles. This is when I started to learn about my muscles and controlling them a bit better. I did some dilator work as well. We got to a point where we decided to "try" having sex. I would use the lidocaine gel prior to sex. It was never pleasurable. I called it a bearable discomfort. Somewhere along the way, I detached myself emotionally from sex in order to force myself to continue trying... hoping that over time it would feel better. My r/ship ended and I stopped all treatment. I took a break.

In my 2nd r/ship, I started treatment again about 6mths ago. I looked up a specialist and decided to follow through with his plan of treatment. I did biofeedback work and dilator exercises. i found both were very good in teaching me to become more aware of my muscles, control my muscles more in order to relax them. It also helped strengthen my muscles. As I hadn't done any treatment for over 2 years, I started off with the smallest sized probe attached to the biofeedback device. Over the months, I did dilator work and reached a size 4. I struggled with the size 4. I felt like I was progressing. I never had sex with my BF throughout the r/ship and then my r/ship ended a week ago. The stress of the condition got to him too much and I understand how difficult it was for him to go through it.

So at the end of this... I'm mentally and emotionally scarred. I have never experienced the so-called joy of sex. I resent sex. I blame it for the breakup of my most recent r/ship. I wish the activity never existed. I had days where I hated my body because I just wished it was normal so I wouldn't have this problem. I stopped thinking about marriage and having kids years ago cos I could no longer imagine even a guy staying long enough to get to that point. This idea upsets me very much. I don't know what to do anymore. A large part of me doesn't even want sex anymore - cos I can only link it to negative experiences and emotions. Even if I'm aroused, as soon as I think of sex, I turn dry. I don't know how to change my mindset. On the one hand, I know I need to get over this condition, on the other, my heart & mind just don't even want sex. Some days I feel like I'm just sick of trying. I'm sick of it. Just thinking about this condition makes me cry.

Anyways, thanx for listening. Sorry it was so long but it is 8 yrs of emotions.

Sue flower


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hi sue

Post  Sebby (Admin) on Mon Mar 22, 2010 8:11 pm

Thank you so much for sharing. I'm so sorry to hear of your recent break up. I am not in a relationship, I have taken a break for a year now but it gets lonely. I don't even think about sex anymore but I'm so hoping to have a child one day but at 29 I'm feeling like I have left it to late. I always had some sensitivity and difficulty with sex but it got a lot worse 18 months ago and then when I turned 28 I realised I did want kids but I had this problem.
I keep joking that I need a man with a small penis and won't last long! Mite be only way I get pregnant lol
Try not to lose heart, I read a story about a couple who despite her vulvodynia got married and they had never had intercourse she was hoping they could try on the wedding nite. I also read of a couple in Dr Glazers book who resorted to a turkey baster to get her pregnant and they had twins!
Keep in touch and let us know how your treatment progresses.

Sebby x
Sebby (Admin)

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Re: Just needed to share

Post  tweety on Tue Mar 23, 2010 3:36 am

Hi Sebby,

I know how u feel... It does feel lonely - like its just you fighting this battle alone and no-one else who can really support you. You know, after this most recent break up i was gooing to throw in the towel and just give up. But after some thought I realised that this is actually something I needed to do for myself.

It's hard to get my mind around it... cos I hate the idea of sex so much. I'm 28 and I stopped thinking bout a future with a guy a while ago. I see my friends getting married - which can be depressing.

As for you and having kids... its not too late. I've head the stats how doctors say its much harder after 35 and all. But the way I see it.. it'll be up to fate. Whether you meet the right guys etc. In the meantime, you might as well just keep plodding along and trying different treatments... and in someway its somewhat easier going through treatment without having that stress of knowing your partner is hoping it'll get better.

I'm hoping I wont have to go through any type of surgical procedure so am really doing my best to stick to my treatments and physio etc. Are you still on a break? Sometimes it is a good idea. Just to re-collect yourself before you start again. Are you planning to start treatment?


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Re: Just needed to share

Post  Sebby (Admin) on Tue Mar 23, 2010 7:40 pm

Yeah I get so envious of those with partners and kids, I really hope I can meet someone understanding that I can start a family with.
I am seeing a gyneacologist, it has taken ages to get referrals and follow up appointments. Have seen some right horrible doctors along the way and luckily the gynea I am seeing now at least is sympathetic. There is not much avaliable on the NHS that I know of and most doctors have not even heard of Vulvodynia in uk. He put me on cerezette mini pill to stop my periods as my flare ups seemed to be conected to my periods. It did not work it just made me really dry which made things worse. I am now on combined pill to see if the oestrogen will make a difference. If this does not work he will refer me to the hospitals Vulval clinic. Dont know why I wasnt referred there in the first place but I will give this pill a ago.
I cant take amitriptyline as I am already on meds that I cant mix with it. I would like to try bio feedback but will have to find out if I can get it on NHS? I will have to kick up a fuss I reckon. I dont think I would be able to afford private treatment.
I am not activily looking for a boyfriend but If I did meet someone who I liked then I would take a chance. The only problem is at what point do you introduce the topic of Vulvodynia? Over a romantic meal one day or before he gets too frisky? lol Smile
I think it was good for me to take a break and not have the pressure of a boyfriend who kept hoping he could have sex. A break will probably be a good idea for you too.
Lets hope we both meet millionare, low sex drive men who love cuddles! I could even set up a website for that! lol

Take care and keep me posted on how your treatment etc is going.

Sebby (Admin)

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Re: Just needed to share

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