Vulvodynia Support
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» Hope to all my suffering ladies
Three years down the line ..... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Three years down the line ..... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Three years down the line ..... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Three years down the line ..... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Three years down the line ..... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Three years down the line ..... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Three years down the line ..... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Three years down the line ..... 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!
Three years down the line ..... 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


Three years down the line .....

+4
tinkerbelle2
Delilah1
Leslieg
Jacky51
8 posters

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Post  Jacky51 Thu Nov 14, 2013 11:46 pm

Hello everyone

Three years ago I developed chronic burning pain which came on literally overnight. On a scale of 1 - 10 it was nearly always at a 9. After scouring the web, finding this website and seeing a gyni I knew I had vulvodynia. I was beside myself, was in the depths of depression and unable to work. My gyni prescribed lidocaine and amitryptoline, both of which didn't work. I also tried acupuncture but that wasn't much help either.

I finally decided to see a private pain consultant. O my he was my saviour - finally I had found someone who could sympathise and understand my agony. He immediately put me on 150mg of lyrica, kept me on the amitryptoline and gave me a supply of tramadol for emergencies (I only ever needed to take them once). Within 48 hours the pain had all but gone. In my second week he increased me to 300mg and I had no pain at all. In total I was on 300mg lyrica and 50mg ami.

Unfortunately I did have some side effects such as a dry mouth and weight gain but this was a small price to pay.

I was petrified that if I came off the meds the pain would come back. however, with the support of my gp (who incidentally admitted she didn't know much about the condition and was as pleased as I was that I had found something that worked), I have weaned myself off the lyrica over a long period of time. I am still on 10mg of ami and that is only because it helps me sleep!

Thankfully the burning has not returned. However, now that I know that something has worked for me it is no longer a fear, if it does come back I'll be straight back on the pills - let's face it most people have to take some form of medication for their ailments.

I really would encourage anyone to give it a go, it might work for you too. My heart goes out to you all, I honestly don't know how I got through those initial months I really had got to the point where I had virtually given up. I haven't been on this site in a long while and was really surprised to see how much it had grown in numbers, there are so many of you all suffering x

Jacky51

Posts : 18
Join date : 2010-11-15
Location : East London

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Post  Leslieg Fri Nov 15, 2013 1:59 am

Jacky, thanks for posting! It is so great to hear success stories . I'm glad you are well! God Bless xo

Leslieg

Posts : 86
Join date : 2013-08-09

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Post  Delilah1 Sun Nov 17, 2013 3:16 am

Thank you for returning to the forum and sharing your success story!! So glad you are feeling better!! Can I ask if sex was painful for you? Has your sex life returned to normal?

Delilah1

Posts : 55
Join date : 2013-04-24

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Post  Jacky51 Sun Nov 17, 2013 11:12 am

Thanks for your well wishes. If I am honest I was scared of having sex in case the burning pain came back. My poor husband put up with a lot, but things are back to normal and not at all painful now.

Jacky51

Posts : 18
Join date : 2010-11-15
Location : East London

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Post  tinkerbelle2 Sun Nov 17, 2013 9:51 pm

Hi jacky, I didn't even realise the site has been running that long I only joined a couple months ago. If only I had found it sooner. An amazing way to share and support each other. So glad to read your story! I was going to mention lyrica to my gyno tomorrow as quite a few women have mentioned it. What were your symptoms? So happy for you!
tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

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Post  Jacky51 Tue Dec 10, 2013 11:28 pm

Hi tinker belle did you speak to yr doctor about Lyrica.  In terms of my symptoms I had the most excruciating burning pain, at times it felt like someone was grabbing hold of my vagina and at others it was really painful inside as if I had inserted a tampon badly.  On a scale of one to ten I was always around a 9.  It really is the most awful condition for anyone to have, especially as most people don't understand and it's embarrassing to talk about.

Jackyx

Jacky51

Posts : 18
Join date : 2010-11-15
Location : East London

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Post  mary jane Wed Dec 11, 2013 11:41 am

Hi Jacky, loved hearing your story as it gives me hope. I also take 50 mg ami and I shall beg for some Lyrica, if only my stupid GP would put her brain to contribution. I hate GPs so much, in my country GPs are worth s... we only see the specialists.
anyway, so amazing you are cured !! yey loved reading this !!

How long were you on the lyrica??

thanks
xxx
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Post  Jacky51 Wed Jan 01, 2014 11:51 pm

Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way. I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

Jacky51

Posts : 18
Join date : 2010-11-15
Location : East London

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Three years down the line ..... Empty Thanks

Post  907hopeful Wed Jan 08, 2014 6:08 am

I can't tell you how great it is to hear success stories. I am just in the beginning stages if this roller coaster and still working to get properly diagnosed. I started with skin irritation which has somewhat disappated and I have moved on to stinging, burning and some days (or weeks) pain. My pain levels are not at a 9, but this problem has really taken an emotional toll on me. Your story gives me hope. I will make sure to add Lyrica to my list if meds to ask about next week!

907hopeful

Posts : 17
Join date : 2014-01-03

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Three years down the line ..... Empty Lyrica help please

Post  Jo44 Wed Nov 18, 2015 9:28 am

Jacky51 wrote:Hi maryjane

I was on Lyrica for nearly three years, but was slowly coming off it over the last year. With the help of my gp I gradually lowered the dose ever so slightly every couple of months. Mainly because I was scared that the pain would return but also because I had read that some people can have real problems coming off it. I'm pleased to say it worked doing it this way.  I have now been off it for over six months and no sign of any pain - yippee! It really is worth trying, I felt a bit spaced out the first couple of weeks but this soon passed. Only downside was weight gain but hey ho that was the least of my problems.

My heart goes out to all you lovely ladies, I do hope you all find relief soon, don't give up trying x x x

Hi Jacky

I have messages you privately a couple of times but no joy! I was wondering how much you reduced Lyrica each time & did you struggle with any withdrawals please?

I'd appreciate a reply?

Thanks


Jo x

Jo44

Posts : 35
Join date : 2015-02-10

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Three years down the line ..... Empty pain and burning?

Post  amyhp Wed Nov 18, 2015 8:06 pm

Jacky,
Did you have a sore pain feeling along with the burning? I have tried Lyrica in the past and it didn't work. Do you think it was the combination of the amitriptyline and lyrica that helped?

amyhp

Posts : 34
Join date : 2015-09-22

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