Vulvodynia Support
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» Hope to all my suffering ladies
Any chance this could be something other than vulvodynia? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Any chance this could be something other than vulvodynia? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Any chance this could be something other than vulvodynia? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Any chance this could be something other than vulvodynia? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Any chance this could be something other than vulvodynia? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Any chance this could be something other than vulvodynia? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Any chance this could be something other than vulvodynia? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Any chance this could be something other than vulvodynia? 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!
Any chance this could be something other than vulvodynia? 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


Any chance this could be something other than vulvodynia?

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Any chance this could be something other than vulvodynia? Empty Any chance this could be something other than vulvodynia?

Post  mythreesons Wed Aug 20, 2014 5:45 am

I'm 45 and was diagnosed with vulvodynia 2 years ago. I was put on amitriptyline and vagifem and got the symptoms pretty much under control for almost 2 years, with just minor flare-ups whenever I'd have to wear a pad during my period. I weaned myself off the vagifem after the first 6 months and still didn't have a flare-up. Then in mid-June of this year, I started getting vulvar inflammation and burning again. I went back to my doctor (who is clueless when it comes to this condition) and renewed my prescription for vagifem and increased the dosage of the amitriptyline to 50 mg per day.

I have yet to get symptoms back under control and it's been 2 months now. I've been taking calcium citrate and magnesium and somewhat following the low oxalate diet, in addition to continuing to take the ami and vagifem.

I can have some days where I feel quite good and I feel hopeful. The last 4 days were good, but then today has been horrible again. I have had hemorrhoids since my first pregnancy 15 years ago and they seem to flare up too when the vulvodynia flares up. I also feel like I'm swollen inside. When this flare-up first started, I was definitely swollen outside, but now I feel like the swelling is all internal. Some days I can barely sit. I've also noticed the last few nights that the vagifem is difficult to insert, as though there is something at the top of the vagina preventing it from being fully inserted. Yet when I check myself with a finger, I don't feel anything abnormal, other than feeling swollen. So maybe it's just the swelling preventing the vagifem stick from going all the way in, I don't know.

I saw my doctor yesterday and I'm waiting for a referral to a gynecologist, which can take some time. This is probably wishful thinking, but I keep hoping this gynecologist will tell me the first one 2 years ago was wrong and I really don't have vulvodynia and that what I do have is very simple to fix. The thought of continuing to suffer with something for which there is no known cure just makes me so depressed.

mythreesons

Posts : 4
Join date : 2014-07-30

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Post  bearferret Wed Aug 20, 2014 7:59 am

Are you in the uk? If so you can make an appointment at your GUM or sexual health clinic. They were so much more helpful than my doctor who told me to out up with the pain. Mine too felt swollen to me but my doctor told me it was normal. Sexual health doctor found my problem straight away. Amitryptilin was the first treatment but he said if itddidn't work there were other options. I cried in his office. It was a relief to have someone who wanted to help. Luckily amitryptilin worked but its only been about two weeks since I stopped taking it and I have a very understanding partner. Hope you get the help you need and deserve. X

bearferret

Posts : 8
Join date : 2014-08-19

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Post  mythreesons Wed Aug 20, 2014 2:46 pm

I'm actually in Canada. I'm waiting to see the same OBGYN who delivered my kids and hoping he will be knowledgeable about this condition and be willing to keep at it until we find something that works. My current GP seems to have no clue how unbearable these symptoms are.

mythreesons

Posts : 4
Join date : 2014-07-30

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Post  bearferret Wed Aug 20, 2014 3:00 pm

Hope they sort you. My GP was worse than useless as well. Hugs and support. X

bearferret

Posts : 8
Join date : 2014-08-19

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Post  sailor_moon Thu Aug 21, 2014 11:31 am

There are many different health issues that give the same/similar symptoms as Vulvodynia. Vulvodynia can be caused as a symptom of a bigger problem going on.

Anything and everything from skin conditions to allergies (both contact irritants and food allergy), hormones, endometriosis, PCOS, low iron...so so many different things!

Have you got any other symptoms apart from vulvodynia? Does it get worse or better at different times of the month?
Have you had blood tests and ultrasounds ect?

Finding a decent doctor is the hardest thing. I'm up to doctor number 12! I am hoping he can fix me. I am undergoing a month long blood test to see what my hormones are doing. He is thinking my problem is hormonal as I have many other symptoms.

Do your research and see if there is a vulva specialist.
you can get a referral to. Find someone who specialises in vulva disorders.
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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