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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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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: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 3

I'm back - advice on treatment and biofeedback

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I'm back - advice on treatment and biofeedback

Post  Tyger on Thu May 03, 2012 4:13 am

I just wanted to jump back on these forums, because finally I'll be pursuing treatment (again!) and I need some advice and reassurance.  

I wrote my history so far in this thread: http://www.vulvodyniasupportforum.com/t362-my-story-my-experiences-my-life-with-vulvar-vestibulitis, but in a nutshell, I'm almost 28, I live in Melbourne, I have provoked, localised vulvar vestibulitis.  Basically, it hurts when I have sex, the whole way through the act and I am tender for a day afterwards, and it stings slightly when I pee.  I have suffered from this since I was 18, and had pain-free sex for 6 months before it began from a yeast infection.

I should say that I'm really good at ignoring this condition, and being in denial about it.  When I was seeking treatment after first diagnosis, it made me so depressed focusing on it, so after some failed attempts, I stopped.  I grit my teeth through sex and get on with it, and then don't think about it the rest of the time.  This has gone on far too long now, and what used to be a healthy sex-life is now turning into a boring, painful mess as I get older and more fed-up, and my libido slows down.  I can't just keep ignoring it.  The days where I could enjoy sex and embrace the pain are gone - this is not normal.

Treatments tried (and failed) in the past: long-term anti-fungal called Nizoral I think, and Amitryptiline anti-depressant, for months slowly increasing dosage.  No response to either.

I have been reading a lot about biofeedback.  I always assumed there was some kind of medication I could take that would fix it, if I tried enough avenues, and I thought biofeedback was such a wishy-washy treatment. But now that I look into it, it seems there's something to it.  I didn't think I had problems with my vaginal/pelvic muscles, but my partner has told me over the past few years that I'm extremely tight down there. I should have assumed, from common sense, that I'd be experiencing reflexive muscle tightening because of the sex pain, and I don't know why I thought this wasn't an issue.

So I suppose my questions are these.

Have you had success with biofeedback and dilators, especially with localized provoked?

Have you heard of/had treatment with Marek Jantos, and are his methods effective?

How long does it take to start experiencing progress?

What exactly IS it? What do they do to you?

Is biofeedback/dilators a good fit for somebody with vestibulitis, or should I seek more medication-based treatments first and foremost?

My biggest issue by far is financially... these treatments are all extremely costly in Melbourne and probably all over the world.  I'm going to go back to full-time study next year, and I don't have a lot of savings, plus I already asked and a lot of the specialists aren't covered by any form of private insurance.  I wish there was some kind of guarantee that this stuff is going to work!

But I'm desperate now, and I have been extremely upset the past few months.  I can't ignore it any more.  Any advice would be greatly appreciated! I'm so glad there's support like this out there... I don't know where I'd be without it in the past.



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Location : Melbourne, Australia

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Re: I'm back - advice on treatment and biofeedback

Post  Sarah001 on Thu May 03, 2012 12:08 pm

I've done some biofeedback, basically they insert a vaginal probe (or you insert it yourself if you prefer) then wait a minute or two to see what your resting tone is followed by testing how well your slow twitch and fast twitch fibres work by giving you quick and slow contractions to do with the emphasis on the relaxation part to teach you how it feels to have the pelvic floor relaxed. Once you can relax it better they progress to exercises to suit the individual and go from there. That should also be followed by trigger point work of the pelvic floor to increase relaxation. I can't say how well it works because I have severe pelvic instability so have to stabilise my pelvic before I can fully relax these muscles but I did manage to lower my resting tone by quite a bit and it took my generalised unprovoked V towards being provoked at the time so there's something to be said for it.

I know Aussie (Claire) went to Marek Jantos and made progress with him but I'm not sure if she's still around or not. There's no reason why you can't pursue medical options at the same time either.

Dilators are to gradually stretch the superficial pelvic floor and if I use mine religiously I do feel improvement but again I can't go mad because of my pelvic instability. I leave mine in place for about 15 minutes before I go to sleep at night and I'm currently on the 3rd dilator but with no movement. They can also be used to stretch the pelvic floor and press into trigger points but again gently and gradually.

Let us know how you get on!

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