Vulvodynia Support
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» Hope to all my suffering ladies
Hello, my name is medical mystery  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Hello, my name is medical mystery  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Hello, my name is medical mystery  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Hello, my name is medical mystery  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Hello, my name is medical mystery  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Hello, my name is medical mystery  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Hello, my name is medical mystery  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Hello, my name is medical mystery  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, my name is medical mystery  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, my name is medical mystery

5 posters

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Hello, my name is medical mystery  Empty Hello, my name is medical mystery

Post  coline83 Sun Sep 19, 2010 1:08 pm

Hello everyone,

my name is Coline and I've been suffering from vulvar pain for 7 years, on and off. I had many diagnosis but for the past 3 years, it seems that doctors ran out of ideas. My current gynecologist made me do blood tests, I had a PAP test and everything looks perfect! There seems to be absolutely no reason that could explain my constant burning and stinging/itching on different areas of my vulva. So my doctor said, and I quote: "I don't know what to do with you". I was treated for yeast at least a hundred times, I was told I had genital warts, which was probably true but couldn't explain the intensity of the symptoms. And now, the warts are gone and the symptoms are still here. Funny enough, they can disappear for a moment when I'm sexually aroused but they come back soon after. If I'm lucky. If I'm not, I just won't be able to have sex. The pain has been present for a year now but before that I had a one-year break. Before the one-year break, it was slightly annoying but ok. Before that, it was one or two weeks per month. And now we're back to that and I can't think of anything (psychological or situational) that could have triggered this. I tried to stop going to the pool once a week, I tried to change my diet, I tried to stop biking, nothing changes.

Several doctors heard my story and admitted they didn't know what I had but refused to look further and just sent me back home. I have an appointment coming at a specialized clinic (VUVO for vulvo-vaginal disease) in Montreal, where I live, in december. In the meantime, I tried acupuncture to release the pain but the treatment actually suppressed all sensation in my vulva, which is even more disturbing than the pain cause now I feel numb and unable to be aroused. I stopped the treatment and just hope it will come back soon.

I read the V book and I found my symptoms to be very similar to what she described as vulvodynia ( gynecological exams really hurt, I can't use tampons, etc...) but as long as I'm not diagnosed, I'll get no treatment.
Does my story sound familiar to anyone? Am i crazy to think it could be vulvodynia? Does anyone know a specialist in or around Montreal?
My apology for this way-too-long post...

To end on a positive note, my fiance is very understanding and involved in my quest for an answer so I have plenty of support from him. Looking at the bright side....

Thanks to you all

Coline I love you

coline83

Posts : 1
Join date : 2010-09-19

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Post  Husband Sun Sep 19, 2010 3:58 pm

Hi Coline,
Sounds like vulvodynia. Can you provoke pain by a slight touch with a cotton swab? If this caused pain and if the doctors have no ideas any more than you have the diseases name.

Husband

Posts : 29
Join date : 2010-08-30
Age : 57
Location : Germany

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Post  Sarah001 Sun Sep 19, 2010 5:26 pm

Hi Coline, it certainly sounds like vulvodynia but it would do because that just means "pain in the vulva"! It's quite interesting acupuncture made the area numb, I'd say that points to at least partly a musculoskeletal problem and perhaps over time more acupuncture might help restore normal sensation? I haven't tried it myself but it seems pretty hopeful that it changed the sensation. The other thing that springs to mind is an overabundance of lactobacilli, it's not common but tends to present in a pattern of a couple of weeks a month where there's pain. Not many doctors think to look for too much good bacteria but it can upset the balance just as easily as not enough good bacteria. Have you ever had antibiotics and found the problem improves while you're on them?

Anyway, welcome to the forum.
Sarah001
Sarah001

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Join date : 2010-06-11
Age : 50
Location : UK

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Post  Sebby (Admin) Mon Sep 20, 2010 7:13 pm


Hi and welcome coline

It does sound like Vulvodynia which as previously said does just mean pain in the vulva!

How did they treat your warts? I have read in the vulvodynia survival guide by Dr Glazer that the treatment for warts have been shown to "irritate the vestibular are futher" ...Trichloroacetic acid (TCA) and lazer surgery. but it is not thought that the HPV virus itself is linked to developing Vulvodynia.

Sebby
xxx
Sebby (Admin)
Sebby (Admin)
Admin

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Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  jules Tue Sep 21, 2010 2:49 am

Hi Coline,

Read our stories....you have very similar symptoms. Also, I suggest you read the support and advice section. We all share different treatment techniques we have used. Many of us are on medication, ie: Amitrip., Lyrica, neurontin, vicodin (for pain) etc. some have tried physical therapy, spinal blocks, acupuncture (like yourself), botox, etc. There are a number of treatments for this nerve pain. you will also want to rule out a skin disorder w/ a biopsy. It sure does sounds like Vulvodynia. I live in Minnesota. So, I don't know of a doctor in Montreal. But, it sounds like you are heading in the right direction. In my opinion, you may benefit by going on meds for the nerve pain and then physical therapy for the pelvic wall muscles. Good luck. We are here for you.

jules

Posts : 225
Join date : 2010-03-17

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