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» Vulvodynia is a secret
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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: 6

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

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

Hello I am new, and am looking forward for some support

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Hello I am new, and am looking forward for some support

Post  Feegal on Sat May 12, 2012 11:21 am

Hello wow, ( I feel soo silly for years I have had this pain for soo long, originally I thought I had vaginismus) for all those years talk more soon not feeling well wil write more later sorry all. I cant wait to connect with you al and explain my story to you all how its effecting myself & my husband soo not fun thats for sure. Sad

I feel I had vaginismus for years, but really didnt know what I had, & why was soo painful all the gyno exams, every time we had sex soo painful and frustrating, could never use tampons soo painful. I now am soo happy to actually find out what i really had, my gyno told me about a a really good therapist in Adelaide, his names marek Jantos.
At this stage, have only seen him once, he also does myofacial release too its amazing at what he does, afer i had some internal stuff done that day, found out how inner thigh pain can radiate up to that area, also buttock pain can do that too. I am not happy atm, as bleeding its just not a good time to get back into doing them. Where is everyone else re with this, any support any help will help me out soo much, just needing anyones feedback anything to help me though this makes it soo much better knowing a freind heard of this forum.
I feel i hve had this for years, but never knew it. I have anxiety too, we also went through ivf also, and unfortunately didnt work out. That was back when i didnt know about the vulvodynia just thought I had vaginismus.


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Re: Hello I am new, and am looking forward for some support

Post  sailirish23 on Sat May 12, 2012 9:42 pm


I'm new too. I didnt know anything about vulodynia until my symptoms appearred three months ago. If you would like to share some thoughts, let me know.



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Vaginismus diagnosis

Post  vulvarpainsurvivor on Sun May 13, 2012 12:52 am

Hi Folks,
Just wanted to comment that although I am not among those people who thinks "vaginismus" is a myth, I do want to emphasize that a lot of different types of vulvar pain get unhelpfully lumped under that diagnosis when it is not necessarily correct, or not comprehensive enough. I spent several years thinking I had vaginismus, too, when it turned out to be a (probably) congenital overgrowth of nerve endings in the vestibule. The result--extremely painful sex--is the same, so it's easy to be fooled into thinking your muscles are just too tight or you're getting tense when you have sex. And then there are the doctors who tell you to "just relax," as if you could relax when you're in severe pain.

When I started the physical therapy which I though would cure me of my "vaginismus," I eventually figured out that the tension or relaxation of my pelvic muscles had nothing to do with my pain. I used a biofeedback machine with a vaginal probe which showed whether or not my muscles were "firing." (The machine is available from Empi, by the way.) The higher the number, the higher the tension in the muscles and vice versa. I found that I could have a 0 or 1 showing on the machine and still have severe pain when touched at the opening of the vagina. So while the physical therapy did not solve anything in the end, it was very useful for getting me to try biofeedback, which helped me figure out that tension was *not* the problem. And, as a bonus, I did learn how to control those muscles really well, and probably strengthened them--good for your sex life in the long run!


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Re: Hello I am new, and am looking forward for some support

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