Vulvodynia Support
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» Hope to all my suffering ladies
Pregabalin/gabapentin  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Pregabalin/gabapentin  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Pregabalin/gabapentin  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Pregabalin/gabapentin  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Pregabalin/gabapentin  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Pregabalin/gabapentin  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Pregabalin/gabapentin  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Pregabalin/gabapentin  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!
Pregabalin/gabapentin  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


Pregabalin/gabapentin

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Pregabalin/gabapentin  Empty Pregabalin/gabapentin

Post  Rose86 Tue Feb 18, 2014 6:53 pm

Hi all,

Quick question - have any of you had any success using pregabalin or gabapentin to treat vestibulodynia? My gynae wants me to go on pregabalin but I only have localised provoked pain and can't find any evidence to suggest it works for this. I'm not prepared to go on a drug with side effects if it's never worked for anyone!

X

Rose86

Posts : 51
Join date : 2011-06-23

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Post  Alana3 Tue Feb 18, 2014 7:38 pm

I used it for provoked but it didn't work for me but you don't know until you try. You can always get off it there shouldn't be lasting side effects so once you wean off you should be OK. But if it works that would be cool.

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  alessandria Tue Feb 18, 2014 8:55 pm

The only clinical trial examining pregabalin for vulvodynia was discontinued due to low enrollment, so there are no real studies on whether it is effective or not (there are anecdotal reports of people getting better on it, but mostly in the case of generalized and unprovoked). As far as gabapentin goes, there is a multicenter trial underway right now in the US to see whether it is effective specifically for provoked vulvodynia. There is evidence to suggest it works well in people with generalized and unprovoked vulvodynia, at the very least. However, unprovoked and provoked are thought to be caused by different mechanisms, so what works to treat one might not help the other. There just isn't a ton of data, which means it might work, it might not. Both of those drugs have been under a lot of fire lately for not actually being helpful in a ton of different pain disorders, despite prevalent off-label use. Doctors have been prescribing them for plenty of things under the rationale that you never know until you try, but it has ended up hurting people. So...a lot will come down to whether you feel like its potential risks are worth it, and that's a personal call.

A question, how has physio been going? Did you end up getting botox? I think as long as you have noticeable pelvic floor dysfunction, I'd continue working on that -- it DEFINITELY can be a huge cause of provoked pain in particular, and it's hands down the best route to go with if side effects are a big concern of yours. If you are not super concerned about side effects, then the drugs could totally help out and should be up for consideration. Good luck!!

alessandria

Posts : 39
Join date : 2013-12-07

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Post  Rose86 Tue Feb 18, 2014 9:26 pm

Hi! Yeah the gabapentin study came up in one of my searches, but god knows when we'll see the results of that one! As for the Botox, I didn't go down that route in the end, my new gynae doesn't seem keen on it. But I'm certainly keeping my mind open to it. As for the physio, I've been using a biofeedback machine and dilators since October and haven't noticed any change in my vestibule pain, even though my resting tone in my pf muscles has gone down. I'm still unable to relax the pf muscles when I'm thinking about something else though so maybe that's the problem. I'm reluctant about gabapentin and pregabalin because of the side effects, however I would be prepared to try topical gaba/pregabalin if I could get it prescribed in the UK. I'll be asking my gynae at the next appointment if it's an option.

Rose86

Posts : 51
Join date : 2011-06-23

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Post  JemimaSurrender Mon Mar 10, 2014 7:12 pm

I used Pregabalin for about eighteen months I think, and for a decent portion of that I did seem to be considerably better and sex was almost bearable, but it did return eventually. I am now on Gabapentin, and have been for about six months and have had no success so far!

I did see a consultant today and he said they rarely work for the kind that I have as it's for nerve pain rather than provoked. Another success for the NHS then, thanks guys!

JemimaSurrender

Posts : 107
Join date : 2011-12-03
Age : 34
Location : Staffordshire, UK

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Post  Rose86 Thu Mar 13, 2014 10:41 pm

Hi Jemima,

You say the pregabalin worked for a bit - do you have localised provoked pain of the vestibule or something else? Also how did you find the side effects and also coming off it at the end? x

Rose86

Posts : 51
Join date : 2011-06-23

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