Vulvodynia Support
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» Hope to all my suffering ladies
UK based vestibulitis sufferer EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
UK based vestibulitis sufferer EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
UK based vestibulitis sufferer EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
UK based vestibulitis sufferer EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
UK based vestibulitis sufferer EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
UK based vestibulitis sufferer EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
UK based vestibulitis sufferer EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
UK based vestibulitis sufferer 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!
UK based vestibulitis sufferer 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


UK based vestibulitis sufferer

5 posters

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UK based vestibulitis sufferer Empty UK based vestibulitis sufferer

Post  MysteryMe Sat Aug 13, 2011 12:31 am

I am 26. I was diagnosed with vestibulitis yesterday; until then I had never heard of it. Once it was explained to me it made perfect sense, though until that point I merely thought I had vaginismus. Now I understand that I suffer from both conditions, though obviously I am in the very early stages of diagnosis and I don't really know what will happen next so I am trying to find as much information and support as I can.

To give you a few details I have had this condition all my life, it only affects me when someone or something tries to penetrate me - when that happens I experience searing pain. I have had some sexual contact though sexual relations have always been painful and often distressing.

Psychologically I think I have blocked a lot out and it is going to take an awful lot to come to terms with this - especially as I don't feel I can talk to family or friends. I guess this is a common theme? My doctor has told me that I will receive psychosexual counselling which I am pleased about, though I know from my experiences with "regular counselling" that I am a tough nut to crack and once an idea is entrenched in my head it will be hard to shift it. On that basis I am considering hypnosis. Have any of you had experience of this?

I feel like a complete idiot as I know virtually nothing about a condition that has plagued my adult relationships. I am just so thankful that I have the NHS, for one thing, and that I have found a place where others have had similar experiences.

MysteryMe

Posts : 5
Join date : 2011-08-13

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UK based vestibulitis sufferer Empty Re: UK based vestibulitis sufferer

Post  Sebby (Admin) Mon Aug 15, 2011 12:27 pm

Hi and welcome to the forum

I too have had vaginismus & vulvodynia for as long as I can remember.

It has always effected my sex life and the ability to be examined and use tampons. The pain got more constant for me a few years back (dont panic this does not mean this will happen to you) and this was when I sought treatment. I just thought that prior to this I was just anxious.

I am now doing pelvic floor biofeedback when I can (its been a bit difficult lately) and am on Pregabalin 400mg

Things are up and down but I am getting periods of less and low pain so am thankful for that. I am also able to have a sex life again which is something I thought I couldnt do over the last few years.

Keep strong and read up as much as you can about the condition. This will help you decide which course of treatments you would like to explore and what you think could be a cause of your condition

As you have had vaginismus and pain on penetration for most of your life then I would suggest looking into the Pelvic Floor theory, I got my info from Dr Glazer's site www.vulvodynia.com - you can also ask to be refered to a womens physio or look for one yourself (make sure they have worked with this condition before if you can) Do not dismiss other theories though as a holistic approach is beneficial

Also you are not an idiot, I had no idea what was going on for years and this is what happens to many women. Many of us found that GP's knew nothing about it and many had not even heard of vulvodynia! There is not enough education and awareness even within the medical community. Lets hope this changes soon!!
Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Aussie Tue Aug 16, 2011 1:34 am

I have had hypnosis for depression. Cured it Smile

I also went back when V started, did not help with pain but stopped the anxiety associated with it.

As sebby said, biofeedback! for sexual pain it is the best thing ever. I have 24/7 pain and also sex pain but with biofeedback and physio the sex pain is way way better. I can even orgasm now! The problem is wanting sex, when I am in pain there so start with.

Hope this helps

Claire

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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Post  MysteryMe Tue Aug 16, 2011 7:33 pm

Thanks to both of you for the replies - it is so good to speak to someone who understands...I cannot even think about talking to a friend about it.

I have heard lots of people talk about biofeedback but I don't really know what it is. I'll do some research, thank you. My doctor told me "You can get help with this and we can make things better for you", which sounded amazing at the time. By reading your posts I am getting a much more realistic view of what to expect.

My sexual desire has never been a problem, which in a way makes my failure in sexual relationships even more frustrating. My boyfriend has been amazingly patient but I think really he has written off ever having amazing sex, or even satisfying sex, with me which is really upsetting and is at the root of a lot of unhappiness that I can't even begin to go into with him. I would love to change so that sex can be a major and successful part of our relationship. I'm terrified of losing him. Hearing that you can now orgasm has made me realise that I won't necessarily not do so myself. Thank you.

MysteryMe

Posts : 5
Join date : 2011-08-13

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Post  Aussie Wed Aug 17, 2011 12:00 am

Yeah if my daily pain level is low (ie 2/10) I can usually get past it and get in the mood, If my clit isn't sore that day than thats how I orgasm. If I orgasm prior to sex it loosens everything else up and I am able to really enjoy it. But if my clits sore it doesn't work as well cos I can't orgasm first and I get the burning afterwards. Seem to be doing ok maybe twice a week. Hes good about it though If I am having a bad few weeks it's a no go. I always know how I am going to be based on the daily pain.

You will get there! xx

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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UK based vestibulitis sufferer Empty UK based vestibulitis help

Post  Suffering Thu Oct 06, 2011 9:36 am

Hi,

I was hoping someone could recommend a doctor who knows about vestibulitis. I am convinced that is what i have, all my symptoms match, sex is very painful, always has been, i suffer from Vaginismus also but i believe that the tightness in my muscles is a secondary problem cause by the initial pain.

I have seen a couple of doctors who are all pretty clueless, i tried raising this with them but they have never heard of Vestibulitis and the only treatment they will offer me is counseling.

It is driving me mad trying to find someone who will listen and actually offer me practical help. If anyone knows a specialist doctor in the UK that i can approach please let me know.

I am based in Bristol but willing to travel if i need to.

Thanks! x

Suffering

Posts : 1
Join date : 2011-10-06

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UK based vestibulitis sufferer Empty Also uk vestibulitis but with cuts and sores also

Post  Ukvestibulodynia Thu Oct 13, 2011 5:02 pm

Hi I am also in my twenties (22 next month)and a newly diagnosed vestibulodynia sufferer and wondered what symptoms you get. Is it just pain? As I stated in a recent post I also get cuts and grazes after having sex but the dermatologist said this was not the cause if my pain and it was nerve related. Do u get and visible signs or just feel the pain and can't pysically see any reason for it.

Ukvestibulodynia

Posts : 2
Join date : 2011-10-13

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