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

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

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

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

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

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

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

» Help New Diagnosis
miserable for years 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!
miserable for years 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


miserable for years

2 posters

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Post  cdrocab Thu Feb 19, 2015 6:00 pm

I've ridden and shown horses for years and for the last 18 years carried Lidocaine cream in my saddle bags They say if you suffer from Vulvodynia stop riding horses and bikes. I no longer ride motorcycles but still try to bicycle and if armed, am able to ride the trails on my horse for about 2 hours. I had to find a home for my ungaited horse since the bouncing made it worse. No jeans allowed so I use English riding tights that have no seam. I have a short in stature rescue horse but she is not broke to saddle, just a pet. For the first time in 58 years I am not riding. I researched breeds of horses for the smoothest gate and having the best easy going attitude. It happened to be the Rocky Mountain horse which unfortunately are priced like gold here in Texas. An untrained yearling out of pasture is $3000. There are some in Eastern United States but to get it here is muy money.
I want my life back. Through all of this with outsmarting my vulva with numbing medicine, non-seamed pants and ice paks I was diagnosed with ruptured discs and had surgery that failed, got better with exercise and just as I was going to start playing horse again was diagnosed with Leukemia and it took 6 years to get the weight issue from medications under control. Yes the increase weight made my crotch 10x as bad. I started horsing around again in 2012 and got run over by 3 wild rescue horses and broke 2 vertebrae. Duh, wild horses don't stop when you flail your arms. Everything came to a halt, I lost my job and hit a low point in my life. Oh, and by the way, my husband and I have not been intimate in 3.5 years. I guess he is a brute for punishment.
I am waiting for a spinal cord stimulator to be put in to change the type of feeling that the pain receptors receive from my brain related to my back. I am hoping for the best and just maybe it will reduce the vulva pain. We shall see.
To keep me sane I dream of riding my new gaited horse in my nicely padded saddle in the mountains with minimal pain and the option of not hauling along a quart of Lidocaine salve. Oh, and speaking of salve, even though it is recommended for this type of pain my insurance only allows me a 2 oz tube of it a month. I always weigh out what the most important activity is and only use it parsimoniously. I realize I am being a Chatty Cathy but there is no one to talk to about this and wouldn't I blow my FB friends off the page if I brought this up. Vulvodynia has isolated me in doing things and without being able to talk about it to anyone who understands it has been a saddening aspect. Since I have lived with this before it was even a qualified recognized diagnosis I was lucky to have a Gynecologist who would help treat me symptomatically.

Thanks for listening and any one who is a trail rider who has more ideas for dealing with the pain, give me a shout.

cdrocab

Posts : 3
Join date : 2015-02-19

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Post  meelie Fri Feb 20, 2015 3:44 pm

Hi fellow horse gal. Just read your post and feel your pain. You have really bean thru some shit. I live in Georgia. Wish we were closer. I also suffer with this horrible curse. I had back surgery Dec. 31 for spondylothesis. I have been on pain meds since. Not so much as at the beginning but a couple times in 24 hours. I have been spared the V for a while now since surgery but I'm sure it's the percocet or soma but pray pray pray that it is because the Dr. released many pinched nerve endings. He says he doesn't believe that the surgery would help the V but I believe in miracles. I have also been to PT for manual massage down there before the surgery of course. But my insurance, medicare supplement, changed this year and I can't afford PT anymore. I actually gave up riding due to back and leg pain more than the V. Somehow I learned to sit without pressure on the vulva. I have also started taken mucho magnesium, it helps muscles relax. I also soaked in epsom salts baths, it is really magnesium and helps relax those muscles too. I also take calcium citrate. I don't know the cause of your V, I finally after 2 years decided that it was my pelvic floor muscles all knotted up after I took an unscheduled flight off my green Arab in April 2011 and broke my left pelvis therefore I sat on my right side for over 2 years before I deducted what I was doing.
Anyway I guess I'm saying I'm here for you and totally understand. My burning would go away at night while I slept and relaxed I was very glad of that.
Do you know what may have caused your pain? Is it burning or stabbing or what. Is it on touch or general.
I dream of the day that I can ride again. Due to the surgery I have been forbidden by my surgeon not to ride for six months after surgery. I am going to obey his rules.
You can send me private messages if you would like. I have a husband also but I have found "other" ways to help him out sex wise just to keep him half way sane.
Here for you friend.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  cdrocab Sat Mar 07, 2015 10:57 pm

....meelie.......I have had a heck of a time getting back onto this site. I think it got attacked by viruses because the next thing I know I am chasing a nasty virus through my laptop. Because it has taken so long to get back on and it just happened today I have now run out of time and need to go do my horse at the barn. I now know what it takes to get back on here so will follow up with you about being a horsewoman with vulvodynia. It was great hearing from you and I will come back and we will proceed.
Thx
Candice Razz

cdrocab

Posts : 3
Join date : 2015-02-19

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Post  meelie Sun Mar 08, 2015 11:57 pm

sounds great, pm me if you want. waiting to hear from you. Very Happy

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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