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» 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

» 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


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 …

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.

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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 7-month quest so far...

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My 7-month quest so far...

Post  Julie on Wed Jul 28, 2010 11:18 pm

I never thought I would be so emotionally drained and distraught as a result of a gynecological issue!

In December of 2009, I started having some uncomfortable itching and pain, and I visited a gynecologist who performed some cultures and diagnosed me with bacterial vaginosis (BV). I was prescribed a gel insert which didn't fully work, so I was then given a pill, which cleared up all of the symptoms -- except a bit of the pain. I found that over the next few weeks, sex with my boyfriend (whom I have been dating now for over 2 years... quite an understanding guy, thank goodness) was becoming more and more uncomfortable. I became more irritated (physically AND mentally!) as time wore on, and in March, I saw another gynecologist. He first suggested I try an over-the-counter hydrocortisone cream -- which, predictably, failed -- and then gave me a prescription form (i.e. slightly stronger), which still did nothing. My cultures and tests all came back normal -- no infections, no STDs, normal pap smear -- so his last move was to perform a biopsy on the vulvar skin to check for any unlikely (but scary) possibilities.

Of course, the biopsy came back all clear, and I was told to try the hydrocortisone cream once again.

At this point, I was not able to have any sex at all, and even after the biopsied spot healed, my overall irritation was so severe that I finally had to stop using tampons. The bits of time before, during, and after my period seriously exacerbated the situation, and my frustration grew. I saw one more doctor in June, who prescribed me the strongest steroidal cream he could think of -- to no avail.

At this point, my emotions were shot. I had become so discouraged and resigned myself to a sexless, uncomfortable life. I hated thinking such dramatic things, but I seriously (albeit VERY briefly) considered the pros of having a hysterectomy (no more periods, no more hormonal surges, etc.), but I wanted to have children first, so I thought...hey, IVF!... I could have a child via C-section and then get my tubes tied, and at least remove some of the issue. Obviously a ridiculous notion, but the frustration ran that deep.

I also began to experience an attack on my sense of womanhood that I never fathomed before. I am not particularly into feminism and I don't often think very deeply about gender norms, but here I was, rendered unable to be intimate with my boyfriend, unable to be comfortable during my period, and in pain while I exercised, used toilet paper, wore tight clothing/thongs, and sometimes when I just WALKED... I felt hopeless. I felt incomplete.

A lot of research led me to the term "vulvodynia" -- chronic vulvar pain -- and FINALLY, the last gynecologist I had seen mentioned the word to me as he referred me to another doctor in his practice, a woman who has been researching the condition. Merely hearing him speak that magic word lifted my spirits!

I visited this new doctor a week ago. She changed my entire regimen -- new detergent, new soap, different pads...everything to cut down on excess irritation. I asked to be put on Seasonique, a birth control on which you only get your periods every 3 months (I never felt comfortable doing this before, but once my periods became living embodiments of hell, I didn't think twice!). She also did some cultures and found that there was some sort of yeast present, so I was put on Diflucan, 6 pills, once a week.

I am still just as discouraged as I was before... my libido has hit rock-bottom and I feel that I cannot become as close to my boyfriend as I did before (although this is most DEFINITELY a testament to our bond, as a lesser person would not have wanted to put up with a dearth of sex... and I know from experience); my moods align almost perfectly with the degree of pain I am in, to the point where I just want to curl up and do nothing, see no one; and I am seriously doubting the existence of any sort of solution -- and, by extrapolation, my future as a woman/girlfriend/wife/normal human -- but at least I am getting somewhere.

I am about to pursue a master's degree in public health, starting next month, and my goal after that is to get a PhD in psychology. At this point, I've had some very interesting conversations with my boyfriend about dissertation ideas, and we converged on this working title from which to start -- "Sexual Dysfunctions and the Psychology of Femininity."

I hope to speak with people who have gone through similar issues, and to make a difference in the field regardless of my success or lack thereof. I have to remain hopeful!



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Post  Julie on Thu Jul 29, 2010 2:22 pm

No matter how positive I try to be, it falls back on me and leaves me so depressed. bleh!


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Re: My 7-month quest so far...

Post  naomi on Thu Jul 29, 2010 4:00 pm

I can totally relate to you hun, seems like it came out of my mouth and head! Like many of us ladies on here Sad Its such a struggle everyday to even get out of bed, let alone try and lead a happy and fulfilling life etc etc etc

All I know is, there might not be any quick, simple answers out there but I know there is support and friendship. I dont know what I would have done if I hadnt found a site like this. It is the isolation that gets me, none of my friends or family have ever experienced anything along these lines or to this degree. I wake up some days thinking "whats the point?"...and that scares me as I have never been that type of person to be so negative and pessimistic. But I havent been given any hope, so i have nothing to go by.

We've got to get some answers soon. I dont believe there hasnt been any advances on research or treatment. WE'LL FRIGGIN GET THERE!!!! (hey that was a bit of positivity there i think!?!)

I'll write some more later Im afraid I'm totally wiped out after crappy tribunal earlier.

Love to you all

Nai xxxxxxx


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Re: My 7-month quest so far...

Post  Julie on Thu Jul 29, 2010 5:45 pm

Thanks for the response =) I hadn't until now tried to reach out for support, and the few friends with whom I've talked really can't get a feel for what's going on, so it is REALLY reassuring. Just made myself get up and go walk a few miles at the gym while reading a science magazine (nerdy, I know!) to get my mind off of things.


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Re: My 7-month quest so far...

Post  Sebby (Admin) on Thu Jul 29, 2010 7:53 pm

Welcome Julie!

I can totally relate to everything you said. I have been battling with doctors to take me seriously and have used every friggin cream under the sun! I was living on Hydrocortisone cream and canestan at one point.

At present I am due to see a pain clinic on Monday and just hope when I say the word Vulvodynia I dont get a blank stare! Shocked like ive just walked in with a chicken attached to my face lol

I also feel its robbed me of feeling like a 'woman' I felt like I should just run away to a nunnery and be done with it!

Im still trying to fight on so dont give up, keep posting and let us know how u get on.

Im hoping to try and go down the whole physcial therapy - pelvic floor road.

Take care and keep us updated


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Re: My 7-month quest so far...

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