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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


miserable for years

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miserable for years

Post  cdrocab on 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

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Re: miserable for years

Post  meelie on 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

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Re: miserable for years

Post  cdrocab on 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

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Re: miserable for years

Post  meelie on Sun Mar 08, 2015 11:57 pm

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

meelie

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Re: miserable for years

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