Vulvodynia Support
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Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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» Hope to all my suffering ladies
Hello, newbie here EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Hello, newbie here EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Hello, newbie here EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Hello, newbie here EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Hello, newbie here EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Hello, newbie here EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Hello, newbie here EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Hello, newbie here 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!
Hello, newbie here 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


Hello, newbie here

4 posters

Vulvodynia Support :: New Members

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Hello, newbie here Empty Hello, newbie here

Post  EviE°Bee Wed Oct 02, 2013 12:41 am

Hello, I'm Evie.

I was diagnosed a couple months ago, pain originally started in 2008. Currently taking Gabapenton 300mg.

I'm lonely and frightened. Meds are not workin'.

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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Hello, newbie here Empty Re: Hello, newbie here

Post  zarli Wed Oct 02, 2013 1:16 am

Hi Evie,
Every time I read a post when some one says they feel frightened and alone I wish I could give them a big hug!! It is frightening at times and very lonely, Ive suffered for 6 years but have had much relief for long periods of time. You will find something that works for you. You are not alone and any time you like please feel free to contact me. Read as many posts as you can the women on here have so much great advice and treatments to try. Smile 

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Hello, newbie here Empty Re: Hello, newbie here

Post  EviE°Bee Wed Oct 02, 2013 3:24 am

Thanks so much babe. Im glad you have found relief. Muah!

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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Hello, newbie here Empty Re: Hello, newbie here

Post  tinkerbelle2 Thu Oct 03, 2013 2:30 pm

EviE°Bee wrote:Hello, I'm Evie.

I was diagnosed a couple months ago, pain originally started in 2008. Currently taking Gabapenton 300mg.

I'm lonely and frightened. Meds are not workin'.
Hi Evie.

You have had this a long time! Poor you Sad *Hugs*

I was also on Gabapentin 300mg but had to come off it as it was making me nauseous and giving me headaches! I was on it for about 3 months then gave up as it wasn't doing a thing.

I am lonely and frightened too. Even my mum, who is a nurse and has been very supportive, sometimes doesn't understand how bad this is and thinks i'm being dramatic!

There are still many options to try so don't despair! Are you in the UK/US/ elsewhere?
tinkerbelle2
tinkerbelle2

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

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Hello, newbie here Empty Re: Hello, newbie here

Post  EviE°Bee Thu Oct 03, 2013 3:16 pm

Im in the US, California. The Gaba i starting to give mw headaches too. I wanted to try Lyrica but My insurance does not cover it. I'm kinda confused on what Meds to try, and kinda worried about long term effects.

It sucks to not have anyone to relate to. I don't know anyone who has VV personally. My mom, my sisters, friends.... they dont know what to say, unable to relate.

Poor babe, your mom may be frustrated because she can't help you. I wouldn't wish this on anyone.

::hugs:: back at ya babe.

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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Hello, newbie here Empty Try Lyrica

Post  Donna84 Thu Oct 03, 2013 9:35 pm

Try Lyrica, try to buy it somehow...it helped me! And the dose of 75mg only! So, it will not hurt to try. I never tried gabapentin, but Lyrica gave me no side effects at all...so... Smile I really hope this med can help other women as it helped me.

Donna84

Posts : 3
Join date : 2013-10-03

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Hello, newbie here Empty Re: Hello, newbie here

Post  tinkerbelle2 Wed Oct 09, 2013 7:46 am


Hey evie, how you getting on? I agree that you should try lyrica, it seems to help a lot of women.
Hope you're okay lovely! Xx

tinkerbelle2
tinkerbelle2

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

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Hello, newbie here Empty Re: Hello, newbie here

Post  EviE°Bee Wed Oct 09, 2013 9:44 pm

Hey TiNk, I'm always up and down emotionally, some days positive, some days negative. I will definitely look into getting my hands on some Lyrica.

How are you doing babes?

EviE°Bee

Posts : 72
Join date : 2013-09-30
Age : 40
Location : Southern Cali

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