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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


Never had un-painful sex

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Never had un-painful sex

Post  cba321 on Sat Jul 14, 2012 7:06 am

I guess I first suspected something was wrong when I was around 15 and tried to use a tampon...there was absolutely no way it was going in, and to this day I don't wear tampons.

My first experience with sex was when I was 19. It was very unpleasant and his penis maybe went in 2 cm. After a while I could finally let him come into me completely but was still unpleasant to say the least, awful actually, most of the time I would have to stop and a lot of the time I couldn't cope with the pain and would bring me to tears. It felt like something was tearing and ripping the skin. I went to the GP, to which she told me I was anxious about sex and that was causing me to tense up and cause the pain. I didn't really agree with this but what else could I say, I was inexperienced. I continued to have painful sex for at least a year, then I went back to the doctor who then sent me to a gyno. The gyno was so irrelevant, his final conclusions after seeing me for approximately 20 minutes over two session was that I had an anxiety disorder and that I would have trouble conceiving children in the future??? I nearly collapsed when I left the office. Luckily for me my partner was understanding and helped me somewhat with the condition until we broke up, mostly for other reasons than vulvadynia, but it didn't help, but would have happened anyway. During this time I tried Endep (antidepressant), low oxalate diet, antibiotics and huge amounts of anti fungal tablets - it did nothing at all

I then started seeing Marek Jantos from a google search. I did the biofeedback for a few months I think, it did help to minimise my emotional reaction to the pain and let me relax somewhat despite the pain, but I could not maintain the relaxed muscle. I stopped seeing him due to how expensive it was and limited changes and plateau of change

I then went to another GP who sent me to a gyno in Burwood NSW Australia, Dr. Ann Prys Davies, who was amazing and suggested I try Botox, being at university, poor and single I ended up not going down that pathway at the time. No one else knew of my diagnosis and my family being very religious was also not somewhere I could turn...therefore I blocked it all out, I "forgot" about vulvadynia, relationships and sex for about three years....I don't think I could bear to think about any of it, so I pretended it didn't exist.

I started seeing a guy late last year (2011) and realised that I just could not cope with telling him, things faded between us and he disappeared. It was the awakening I needed I guess, I made an appointment to see Dr. Ann Prys Davies again, I cried the entire appointment, I felt so sorry for her, she was on the receiving end of 3 years of pent up anguish. She suggested I see Sherin Jarvis a physiotherapist at the women health and research institute. An appointment that I think may change my life. She was amazing and knowledgeable. I have always had digestive issues and for the first time someone finally knew about the link. I had suggested it to a dr as I believed the pain was caused by a tight muscle that goes between both the bowel and vagina opening, he laughed at me...I was right though Smile I have meet with Professor Thierry Vancaillie who will be doing Botox treatment. I cried in front of both of them as well...they were very understanding. I also saw the psychologist there for three sessions, but it wasn't for me and I don't think it would have helped me with anticipatory pain, and is something I could practice myself as I have already done sessions with Marek Jantos about relaxing despite the pain as it does decrease the pain somewhat.

At the moment I am 2 weeks away from getting a botox treatment...I am scared but I am happy that I have been able to face my fears and try something even though it may not work or work enough...I have seen the thread about Botox and will add how this goes in 2 weeks time...



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Re: Never had un-painful sex

Post  abcdefg on Sun Jan 13, 2013 8:00 am

I have had the "it's all in your head" lecture as well. I've been told it's because I'm too stressed, despite my telling my gyno that I'm a fairly laid-back person. I have never had sex during which I did not tear up from the horrible burning pain. I decided that I was just pathetic and kept trying to have sex in hopes that it would get better. It did not. I was placed on amitriptaline for my migraines, and that has actually helped some of the pain. I am also using the dilator method, which I have hope for. I'm not supposed to have sex until I can use them with no pain. I hope that the botox works for you! I know how stressful the condition can be!!

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Re: Never had un-painful sex

Post  cba321 on Sun Jan 13, 2013 10:46 am

Very sad that a lot of people have the "it's all in your head" lecture.I think it would be more helpful if health professional just said, we don't know what the cause is. Even if it was all in our heads, which it isn't, health professionals should be pointing us towards psychological help! Not just palming us off...very sad indeed no matter how you look at it.

The botox has been helping a lot. I had sex for the first time in while and the pain was significantly diminished, i was blown away. HOWEVER...the botox is still working in my system, and should do for another month. I have been stretching and using dialators and HOPEFULLY even when the botox is gone the muscle will remain stretchec. I have also started with a chiro and had my first session of remedial massage, specifically myofascial massage so see how that goes. In my case it is not just the pelvic floor muscles it is all the muscles involved in stabilising the pelvis that are tight

All the best with your journey!! Smile

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Re: Never had un-painful sex

Post  Alana3 on Mon Jan 14, 2013 6:25 pm

Hey,



Does the botox hurt when they do it? I am maybe heading in that direction, I had a vestibulectomy, but my muscles are totally ridiculous and they are really spasmed. This is all over my body not just the hooha, but I might be headed in that direction. What's it like?

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Re: Never had un-painful sex

Post  cba321 on Tue Jan 15, 2013 7:30 am

Hi alana,

I went under general anaesthetic, had to apparently to ensure i dont move. It hurt for a day or two but then went away. Took about 5 days to start working. It was very weird for a number of weeks, felt like mypelvis was bouncing around everywhere! But after a while that went away. I had to do daily stretches with a dialator im up to 45 mins every day with the largest dialator. Hope fully that will stretch out the muscle permanently

I should change the name of my post as i had sex a few days ago (been a long while) and it wasnt painful wasnt that pleasurable either but ill take it as a win! First time. There was discomfort but definitely bearable! All thanks to botox! However, see if that lasts after the botox has gone....

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Re: Never had un-painful sex

Post  Alana3 on Wed Jan 16, 2013 5:15 pm

Yeah, I don't think so. They like rape you in your sleep with dilators not cool. Plus the side effects freak me out. I don't want to be knocked out again, as I don't handle the anesthesia well. Do you think its worth it?

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Re: Never had un-painful sex

Post  cba321 on Thu Jan 17, 2013 9:31 am

Yeah definitely not nice going under. My doctor does it under general but i have heard others say that they didnt. It was for me but really does depend on each person

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Re: Never had un-painful sex

Post  Alana3 on Thu Jan 17, 2013 1:58 pm

I just had a vestibulectomy, I do not want to go under again! haha I'm working on strecthing and breathing exercises, and it's been a little better everyday, so hopefully I won't have to do botox, I just don't want poison in my vagina lol

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Re: Never had un-painful sex

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