Vulvodynia Support
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» Hope to all my suffering ladies
Do we belong? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Do we belong? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Do we belong? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Do we belong? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Do we belong? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Do we belong? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Do we belong? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Do we belong? 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!
Do we belong? 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


Do we belong?

3 posters

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Do we belong? Empty Do we belong?

Post  Cait Sat Sep 17, 2011 10:47 pm

Hello, I'm a transgender woman and I'm asking on behalf of trans women with vulvodynia whether or not we belong in a forum such as this. Obviously we wouldn't want to intrude if we're not welcome - i.e. if our pain is less 'legitimate' because we were not born with vulvas and we had surgery to create them.

~Cait.

Cait

Posts : 2
Join date : 2011-09-17

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Post  Mette Sun Sep 18, 2011 10:25 am

Hi Cait

I'm new to this forum as well, so I don't know what the general consensus is, but in my opinion pain is pain.
To me the worst thing about this disease is that it makes it difficult to have a normal sex-life, which makes it difficult to have normal love life. From looking around on this forum it seems that a lot of women feel that way. I can't imagine what that must be like for you. Trying to establish an intimate relationship with someone with all the prejudice and stereotypes on top of all the problems the rest of us are experiencing. I can only imagine the frustration you must feel, when you finally get the body that you want (I imagine that it is a very long and difficult process) and then you a still not able to live the life you long for because of this horrible condition.
I think we can all relate to the frustration that comes with the tabu of this pain condition. And just because you had your vulva created it doesn't mean that it is less real.

Did your pain come as a result of the surgery or did it emerge afterwards?
What kind of treatment are you trying to relief the pain?

best, Mette

Mette

Posts : 13
Join date : 2011-09-14

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Post  Sarah001 Sun Sep 18, 2011 7:51 pm

Hi Cait, my first thought was would anything we discuss here be relevant to you then I realised of course it would, some ladies here have pain provoked by surgery and therefore possibly nerve damage or scar tissue etc. Then there's the pelvic floor, surgery in the genital region could quite easily set off pelvic floor dysfunction in women born with vulvas and women who weren't. Then of course hormones, or spinal issues or hip problems etc etc so I don't see any reason why this forum wouldn't be a suitable place for you ladies. I'm sure the majority of women on here will agree with me and Sebby is our founder and leader but a bit under the weather right now or I'm certain she'd be welcoming you the same as she does everyone. So welcome to the forum and feel free to discuss anything with us.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Cait Mon Sep 19, 2011 6:59 am

Thank you for your replies; I understand that my question was probably a little awkward and unexpected.
A little history wouldn't go amiss:
I had GRS (Genital Reconstructive Surgery) in November last year, to create a functioning vagina and vulva. I had problems after surgery with clitoral sensitivity, which meant that I couldn't walk without a lot of pain, even though everything appeared to be well healed. I also had pressure pain on the bottom of my outer labia which made having penetrative sex really sore and made wearing certain kinds of underwear totally out of the question.
The clitoral situation has vastly improved, though I still get the odd twinge now and again for no apparent reason.
The labial pain, while better, is still there and continues to cause problems during sex, though I can mentally master the pain sometimes. If I wear bikini-styled underwear, it starts to become uncomfortable after a couple of hours.
Then of course there is the regular dilation I have to do to keep my vaginal cavity from closing, which really doesn't bear mentioning, since that's often one big uncomfortable pain-fest.
So that's my story.
I'm hoping that it all just goes away with time. It's been nine months now and I hope it doesn't end up lasting a lifetime.

Cait

Posts : 2
Join date : 2011-09-17

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Post  Sarah001 Mon Sep 19, 2011 5:28 pm

I can't help but think there's going to be trigger points and restrictions in your pelvic floor, it must have been heavily involved in the surgery and quite possibly reducing blood flow to the area. Have you tried skin rolling the labia? It can help remove stuck fascia, trigger points and help reduce sensitivity to touch, it's always recommended for anyone with scarring in the area so it might help.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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