Vulvodynia Support
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» Hope to all my suffering ladies
Lyrica Side Effects...? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Lyrica Side Effects...? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Lyrica Side Effects...? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Lyrica Side Effects...? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Lyrica Side Effects...? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Lyrica Side Effects...? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Lyrica Side Effects...? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Lyrica Side Effects...? 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!
Lyrica Side Effects...? 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


Lyrica Side Effects...?

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Post  JemimaSurrender Tue Jan 03, 2012 10:13 pm

Just a quick one...

I've been taking pregabalin now for about 2-3 weeks and I'm noticing some strange side effects. I've got the usual 'feeling a bit drunk' sensation, mixing my words up a lot, the odd bit of memory loss, but the weirdest thing I've found is my eye keeps twitching!

It's always my left one, and it feels like that little bubble under your eyelid, just bubbling away by itself for 30 seconds, every 5 minutes or so.

It's driving me mad and it's been particularly worse today!

Please tell me someone else has experienced this, haha!

JemimaSurrender

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

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Post  rayster Thu Jan 05, 2012 10:31 pm

aw, that sounds very annoying - I hope it decides to stop soon!

I had the occassional eye twitch when when I took pregabalin, but it wasn't all that bad. I did have generalised muscle twitching though which I found pretty annoying after a couple of years . I'm pretty sure muscle twitching is a known side-effect. I got bad tinnitus (ringing in the ear) with pregabalin and it drove me nuts, so I eventually decided to stop taking it because I couldn't really see any benefit for me.

once again, I hope that your eye smartens up and stops twitching!
rayster
rayster

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Post  ButterflyLiz Fri Jan 06, 2012 6:08 pm

That's interesting, I've recently developed tinnitus and am on pregabalin...had just thought it was too many rock concerts!! That's kind of a relief. Do get the odd eye twitch but it's not too troublesome. Hope your settles down, Jemima x
ButterflyLiz
ButterflyLiz

Posts : 137
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Age : 38
Location : UK

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Post  JemimaSurrender Sat Jan 07, 2012 3:26 pm

Thanks guys...

As I didn't really have any oher side effects (and the eye twitching seems to have stopped for now!) I've gone up to 300mg a day on my doctors suggestion, and I feel like I'm off my head!

I only started the two twice a day dose yesterday, and this morning I felt like I was really drunk. Really, really drunk.

So far today I've walked in a zig zag through the town centre and have fell down the bottom 3 steps of my staircase twice. Not good!

It seems to have settled a bit now, and there is something I quite like about it, haha!

Oh, while I'm hear, was anyone else told about the cost of Lyrica? It's not so much relevant, but my doctor said part of the reason why they're careful about prescribing them is because if they work, then a years worth of taking them would cost around about £1000! Has anyone else been told this? Seems crazy to me, but thank God for the NHS! (For once...)

JemimaSurrender

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

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Post  ButterflyLiz Sat Jan 07, 2012 3:30 pm

Oh, bless you! I know that just-upped-my-dosage feeling well!! It does tend to subside pretty quickly but it can be interesting to say the least. My boyfriend's family work in the pharmacy industry & also said it is pretty expensive. I did feel guilty, ridiculously, but then I added up how much I've paid in tax over the years and I don't feel guilty any more!! I think it's mostly cos it's a relatively new drug which is still under patent. When the patent runs out, in 2013 I think, other companies should then be able to start making generic versions of it and hopefully then the cost will come down. But really, we should try not to worry about it; we need it, and that's that! xx
ButterflyLiz
ButterflyLiz

Posts : 137
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Age : 38
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Post  JemimaSurrender Sat Jan 07, 2012 5:27 pm

ButterflyLiz wrote:Oh, bless you! I know that just-upped-my-dosage feeling well!! It does tend to subside pretty quickly but it can be interesting to say the least. My boyfriend's family work in the pharmacy industry & also said it is pretty expensive. I did feel guilty, ridiculously, but then I added up how much I've paid in tax over the years and I don't feel guilty any more!! I think it's mostly cos it's a relatively new drug which is still under patent. When the patent runs out, in 2013 I think, other companies should then be able to start making generic versions of it and hopefully then the cost will come down. But really, we should try not to worry about it; we need it, and that's that! xx

Good point!

Are you currently taking it? Has it worked for you? I'm in my third (I think!) week of taking it now and haven't noticed any difference as of yet... But fingers crossed the upped dosage will go some of the way to improving this!

JemimaSurrender

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

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Post  Sarah001 Sat Jan 07, 2012 8:10 pm

I'm on Lyrica and find it helps a bit with the external diffuse pain, I have both generalised V and VVS and I don't find it helps much with the internal rawness and soreness but the external areas don't feel so bad. I've been on it for over 6 months now and got some help at 300mg then it stopped working completely so I upped the dose to 450mg a day and that's where I'm at right now. I find it makes me dizzy at times and I don't really trust my driving also I have a dreadful dry mouth which isn't doing my teeth any favours and they're seriously sensitive now and it's made my appetite huge so I've put over a stone on which I'm currently trying (and not finding easy) to lose. I'd love to be able to come off it so I'm giving physiotherapy a try because I know I have a very tight pelvic floor and also pelvic instabilty so I need to work on the pelvic stability before I can have my PF released.
Sarah001
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Post  ButterflyLiz Wed Jan 11, 2012 10:25 pm

Yes Jemima, pregabalin has helped me loads, it's not cured me but the pain is way lower than before. At the moment I'm on 150mg per day but was previously on 300mg per day, which was when I started to feel better. It's hard to quantify but I think it took a month or two before I was convinced it was making a difference. I think it's one of those ones that takes a while to get going. I hope you get on well with it x
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Post  JemimaSurrender Thu Jan 12, 2012 12:18 am

Ooo, this is promising then... I've just been upped to 400mg a day today, so I'll keep my fingers crossed for some improvement soon!

Thanks again guys.

JemimaSurrender

Posts : 107
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Age : 34
Location : Staffordshire, UK

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