Vulvodynia Support
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» Hope to all my suffering ladies
I'm back - advice on treatment and biofeedback EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I'm back - advice on treatment and biofeedback EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I'm back - advice on treatment and biofeedback EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I'm back - advice on treatment and biofeedback EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I'm back - advice on treatment and biofeedback EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I'm back - advice on treatment and biofeedback EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I'm back - advice on treatment and biofeedback EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I'm back - advice on treatment and biofeedback EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
I'm back - advice on treatment and biofeedback EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


I'm back - advice on treatment and biofeedback

2 posters

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I'm back - advice on treatment and biofeedback Empty I'm back - advice on treatment and biofeedback

Post  Tyger 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.

Tyger.
 

Tyger

Posts : 11
Join date : 2011-05-05
Location : Melbourne, Australia

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

Post  Sarah001 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!
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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