Vulvodynia Support
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» Hope to all my suffering ladies
Looking for guidence EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Looking for guidence EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Looking for guidence EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Looking for guidence EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Looking for guidence EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Looking for guidence EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Looking for guidence EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Looking for guidence 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!
Looking for guidence 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


Looking for guidence

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Post  Hodg72 Sun Mar 31, 2013 4:27 pm

Hi to all

I guess I am looking for others with similar symptoms/experiences to mine, and looking at some of the posts I think I might find some here.

I have experienced itching, burning and some pain 'down there' for about 15 years. For 12 of those years I thought I had recurring thrush, and treated the problem accordingly. I had many swabs over the years, but was never actually told that they swabs were negative - so I subjected myself for the harsh treatments for years unnecessarily! Finally my Gynae looked in my file and asked why I was going through all the courses of treatment when I had always come back negative??!! (GRRRRR).

We them looked at other things such as dermatitis etc, and I was given steroid treatments to try. Nothing has really helped, although there are some (very few and far between) months when I DON'T suffer. That is the other thing about me - my symptoms are definitely ciclical (although this was poohoo'd by my Drs).

So - finally I was referred to a dermatologist to look at allergic causes - and after waiting for many more uncomfortable months I went through patch testing. I tested positive to an allergy to Balsam of Peru (has anyone heard of it??) and nickel. So - I have cut these products out of my life as best I can (Balsam of Peru is little heard of but in EVERYTHING! Especially in producst you are likely to use 'down there'. I have been looking on forums, and products suggested to me to use as an anesthetic or cooling gel seem to contain it (anything with Benzoayte, basically!)

My Dermatologist did suggest that I may have Vulvodynia, esp if my patch tests came back negative. I am wondering if this is in fact the case, as my symptoms are not always visble (especially when I get an examination) and also the sensation can be on one side, then shift front, back, other side, etc etc. I hve read that itching is not usually a symptom for this condition, through.

Any help GRATEFULLY received

thanks all

Hodg72

Posts : 3
Join date : 2013-03-31

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Post  jen007 Sun Mar 31, 2013 4:52 pm

Hello Hodg72 and Welcome to the forum!

I've had vulvodynia for 5 years now. I too had itching and burning pains "down there" for a long time, mostly caused by chronic yeast infections. A lot of the time, vulvodynia is misdiagnosed as a bacterial infection. Theres a few ways to tell if you have vulvodynia...at least that I know of. Let me know if you answer yes to any of these questions:

Are you now on or have ever been on birth control?
Do you have any food allergies?
Do you get reoccurring yeast infections?
Is the pain constant or is it provoked? ....meaning does it hurt all the time or does it only hurt when you touch "down there?"

The allergy you mentioned could be the issue, but if you took all of it out of your daily routines, things should've gone back to normal. Also it isn't unusual to have periods of no pain. I always had pain...but only provoked pain, but a few women here have talked about going through a few months pain free or even a few years and then it comes back. Not sure why...this is a very strange disorder, in my opinion. I'd recommend finding a vulvodynia specialist if you have one near you. If you do have vulvodynia it is important to get some help to keep it under control.

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  Hodg72 Sun Mar 31, 2013 7:05 pm

Thanks, Jen

In answer to your questions:

It seems that although I had suspected yeast infections, it wasn't so.

Food allergies would be the nickel and Balsam of Peru - both are present in both food stuffs and other products. I have ben advised to avoid tomatoes (Nickel) and the presence of B of P, and things that are similar (cinnamon, cloves, citrus peels etc etc) It is nigh on impossible to avoid in products AND food, but I've been doing my best by changing shampoos, any other bathing products used elsewhere on my body (I have not used products in the effected area for years) washing powders,, cleaning products etc. Really made no difference except to my bank balance!

When I get the symptoms, they are fairly constant, this month has been worse than recent - I am towards the end of my period and still in a bad way - normally things start up halfway through my cycle and finish as my period starts (hence my notion that my issues are cyclical and flare-ups with hormone levels). Sex is very uncomfortable both during and afterwards.

I am having acupuncture this week (haven't had since our long quest for a child (he's four and asleep upstairs!) - and am hoping she may be able to help me.

Thanks again for your response - other than my husband and Drs I haven't really talked about this before -As I said to my husband this morning, due to the nature of the problem, it isn't really easy to discuss, like evident skin problems behind you knee!

Fliss

Hodg72

Posts : 3
Join date : 2013-03-31

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