Vulvodynia Support
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» Hope to all my suffering ladies
A little Hope for 2012 EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
A little Hope for 2012 EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
A little Hope for 2012 EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
A little Hope for 2012 EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
A little Hope for 2012 EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
A little Hope for 2012 EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
A little Hope for 2012 EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
A little Hope for 2012 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!
A little Hope for 2012 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


A little Hope for 2012

3 posters

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Post  esilv Mon Jan 02, 2012 4:55 pm

I was diagnosed with Vulvodynia in 2005, right before my 24th birthday. Like most people I had never heard of this condition and investigating it online was a really depressing task. So many women suffer and are in pain constantly, and it seemed pretty hopeless. I never joined a forum in the past but I joined one today to tell my story to show that there are happy endings for some of these sufferers.

In 2005, I had just started dating a new guy, and things were better than ever in the bedroom. In the past I had suffered from frequent UTIs and occasional yeast infections, and when our intercourse started being painful, I thought I had another yeast infection. Tried a few days of over the counter treatment, ended up going to my gynecologist because OTC meds for that stuff rarely helped me. My doctor succinctly told me that there was no infection or any other sign of pain, and that she thought I had something called Vulvodynia. It was a condition that had no real known cause or solution. At that point, my pain was mainly during sex but it was severe. For those first few months I couldn't use tampons, and while I did continue to have less frequent sex with my boyfriend, for the first few weeks I was crying most every time, not from pain, but from knowing that this was my future. I was upset because at 24 sex was pretty important to me and to my idea of what a relationship should consist of, and after dating for 4 short months, I couldn't see any reason why the man I was with would want to stick around and deal with such hassle. Sure, I'm great, but there were so many other girls out there who wouldn't start bawling every time things got romantic.

At any rate, I tried a lot of solutions, including elavil, physical therapy, vitamin e oil, good old fashioned ice, acupuncture and even found some relief in a triple x gag gift called 'me so horny' cream that was supposed to turn women on (ya, right) but was essentially icy hot for your lady parts. Most things didn't work. My first run of physical therapy actually did seem to be doing a lot of good, things got much less painful, but then for insurance/cost reasons I had to stop. I would say the first year of my V, there was a lot of up and down as far as pain went, sometimes it was bad, sometimes it was good...definitely felt like a lot of movement. No matter how bad it was, I know I was lucky. It was only during sex, not throughout my normal life, and it was never so bad that I couldn't also enjoy parts of sex, with my patient and still standing by partner. True, there was no more 2nd or third round...I could barely make it through the first round, but I know many women suffered much more. Ice and the icy hot cream helped with soreness afterwards. elavil, vitamin e and acupuncture didn't work for me.

My doctor would recommend other temporary solutions like lidocaine and she had told me that it often goes away just as mysteriously as it appears. I think the first visit, when I was diagnosed, she said "It will probably go away in about 2 or 3 years" which seemed like forever at the time. By 2010, I had stopped trying to find a solution and had just submitted to living my life with V, sex once a week maybe, always a slow and delicate procedure, always with about the same amount of pain (which had leveled off after the first year). My boyfriend and stuck with me for almost 5 years and though I still looked back at our first few months together as the best because they were so easy going and carefree, we had been living a great life otherwise, and decided to marry. Even after 5 years with vulvodynia, it was still a real bummer to have the best wedding day ever and then party til late in the night only to go back to our hotel and try to 'consummate' and in the end, have a pretty unsuccessful time since I was in a lot of pain. Around that time, since I was turning 29, I realized I'd dealt with this for 5 full years and hadn't done much about it in the last 2-3 years so I renewed my efforts with physical therapy and acupuncture.

My doctor told me, quite discouragingly 'Don't bother with those things, it will just go away as it came, usually in 5 to 7 years.' At this point I seemed to remember her telling me 2-3 originally, and I was already at 5, and I simply didn't believe that my life was going to just turn around. I felt like, better to do something that nothing. So I continued for a while and....nothing. This story has gotten really long, so I'll fast forward one year, to about a month before my 30th birthday when suddenly, sex didn't seem like it was as painful...and I could go for longer without having to stop. And I wasn't positive, maybe it was just a fluke, but it seemed to happen again and maybe again. Wait a second, I know we just finished, but can we do it again? Somehow, I don't need to go sit with an icepak over my crotch. It took me about a month to fully accept that things were different, but they were. And so it was. my vulvodynia just sort of...went away.

It's incredible. I don't know how I lived with it for 6 years, but I feel like a new person and I know I never even had it thaaaaat bad. I am sorry to all the women who have to deal with this, especially since it's mostly in silence. I told my mom and sisters and best friends and obviously my boyfriend/now husband, but I really hated having such a painful experience and not being able to properly complain about it. And when it went away I wanted to shout it all up and down Facebook, but obviously, can't do that. I'm not even here to share my excitement; I'm here because I remember being 24 and seeing the most depressing stories ever and thinking there was no hope. Maybe there is for you, just like me! My doctor who was also very excited said that it's unlikely to return for a long period of time...maybe here and there when I'm stress out but for the most part I should be good. I guess she was right before so I'll choose to think positively about the future, but either way I am enjoying the time that I have, and making up for what me and the hubby missed out on in my 20's. Best of luck to all of you, too!


esilv

Posts : 1
Join date : 2012-01-02

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Post  ButterflyLiz Mon Jan 02, 2012 8:00 pm

Hi, thank you so much for sharing your story! I'm so happy for you that your v mysteriously disappeared, that's amazing Smile Though obviously it's still rubbish that you had to go through those 6 years of painful sex. Do you have any theories on what might have changed to make your pain go away? Might it have been your renewed attempts with physical therapy? Anyway, long may it continue for you x
ButterflyLiz
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 38
Location : UK

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Post  Sarah001 Fri Jan 06, 2012 1:36 pm

That's very good news but like Liz I'd be interested to know if the renewed PT effort might have done the trick? I think you may have posted and gone but if you do come back we'd love to hear more detail!
Sarah001
Sarah001

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

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