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» 7 months since the diagnosis
There is hope after all!!   EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
There is hope after all!!   EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
There is hope after all!!   EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
There is hope after all!!   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!
There is hope after all!!   EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
There is hope after all!!   EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
There is hope after all!!   EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
There is hope after all!!   EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
There is hope after all!!   EmptyMon Apr 08, 2019 7:54 am by Jo44

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


There is hope after all!!

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Post  Cbrimer28 on Sat Apr 28, 2018 2:55 am

Hey guys, I’ve been a part of this group a while, the silent one in the back. I have maybe posted two or 3 times. This journey has really put me through hell, with the pain of course, but also the emotion of it. I was broken. Tired. Defeated. I went so long without even getting on these sites because I felt I had no good news to give. These young girls with their new diagnoses begging with someone to say it gets easier. And I didn’t want to be the one to say, it likely won’t, because there is no help in that. I was scorned. I’ve seen so many doctors I lost count. And only ONE has ever looked me in the face and said I think I can cure you. Excuse me, you said cure, not just offer relief? He said yes, it will be a long road, but together we can get there. I believe him. I’m going on 12 years of this terrible condition that has closed doors on a healthy sex life. And babies. Don’t even get me started. Anyway, I don’t want to run around saying this guy is a miracle worker, because we are in the first stages. But he had a plan. A diagnosis(multiple) and treatment for it. He told me I had conditions I’d never heard of. I got more in one visit from him than all my other doctors combined. He is different. I drove from SC to Washington DC because I truly felt he could help me. I had already done my research. For the first time in a long time, I don’t feel like I’m destined to ride this out in misery the rest of my life. It’s not just “something you’re born with” like that’s an excuse to deal with this. I was tired of being the guinea pig and getting looked at like I was crazy. I made the big step, slightly stalked the dr, and ended up being his patient. I do not regret any of it. His Name is Andrew Goldstein and this is what he does. All the conditions that no one else knows how to manage, he does. So if someone out there wants to no more about him I’d be happy to talk about him. He is by far the best chance I’ve ever had to rid myself of this disease permanently.

Maybe this will be a beacon of hope to someone else, like it was for me.

Casha Brimer (now Whitaker)

*vestibulodynia, severe pelvic floor dysfunction, low levels of estrogen and testosterone, cervical ectropion. Those are some of the crosses that I bear, that will hopefully be long gone. Trust me, no one is too complicated.

Cbrimer28

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Post  fairlight10 on Sat Apr 28, 2018 9:33 am

Hi Cbrimber. I have read many posts saying what a help Andrew Goldstein has been. Just finding this forum was a relief for me. Knowing I wasn't the only one suffering was a help.Thank you for posting and keep us informed of your journey to eradicate this spiteful condition.

fairlight10

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Post  bambi82 on Tue May 15, 2018 4:25 pm

Hi Cbrimber,
What are the treatments Dr Goldstein is advising for your conditions? I also have a cervical ectropion. Estrogen/testosterone creams, gels? Pelvic floor rehab/physio? I would be interested in the treatments he offers for you.

Glad you got some light at the end of the tunnel, wish there were doctors in the UK offering such hope or anything above a steroid cream or antidepressant which is so poor but are the only offerings here.

bambi82

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Post  Cbrimer28 on Wed May 16, 2018 2:50 am

Hi bambi82,


A ton of things came out of my visit with dr Goldstein. He took me off birth control completely and said under no circumstances do I go back on it. He gave me an estrogen/testosterone cream, Valium suppositories, pelvic floor rehab. I go back in July and he said if the muscles werent loosened he would make them loosen with Botox. So we will see. I started the suppositories and I go for my second PT appointment Thursday.

Cbrimer28

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