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» I'm sorry im rambling
Today at 5:49 am by Jet227

» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

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 …

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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 …

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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 …

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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: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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

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

Post  totallycured on Mon Mar 12, 2018 4:33 pm


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 trying to help. It went on for about five or six years.

Yes, I went to doctors, had biopsies, changed my diet, tried various creams, powders, vitamins, supplements, etc.

I couldn't imagine what my life would be like in five or ten years if the pain continued. I couldn't imagine being alive in twenty years.

What finally helped me figure it out was an article in the New York Times health section about a possible connection between vestibular pain and the L5 vertebrae at the base of the spine. A light went off in my head. I'm a runner and I'd been experiencing some hip, knee and muscle pain. I'd seen various chiropractors on and off. Every time I went for an adjustment, the chiropractor would note that my 5th lumbar was "out again". The last chiropractor had noted that my left hip was lower than the other. "It looks like one of your legs is longer. If I were you, I'd put a heel insert in your left shoe," he told me. I tried it, but it felt too uncomfortable, so I gave up after a day or two.

After reading the Times article, I decided to give it another go. I put the insert in and kept it there. At first it felt excrutiating as my muscles and skeleton tried to adjust. Around the fourth day, it felt like God himself had come down and given me a new body. NO MORE VULVAR PAIN! It didn't dissipate slowly. It was just GONE one morning!

Over the next few years as I experimented with different sizes of lift, the vulvodynia would come back for a day or so until I corrected the lift, but now my body seems to have strengthened and figured it out enough that I have been completely pain free for at least 15 years. I wear a heel lift all the time. When I run, I wear a full toe to heel lift. I've found out that my leg length discrepancy is 6mm. Not much, but enough. Many people have discrepancies but go undiagnosed. Check your shoe wear. If one sole is worn differently than the other, you could have a leg length discrepancy.

Twenty-some years later, I have three daughters, run almost every day, am physically active, and almost never think about the horrible, unrelenting pain I used to be in.

Good luck to anyone reading this. I hope this brings relief to at least one person.

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Being cured of vulvodynia I have trouble with the fifth lumbar vertebrae in my back wonder if this could be contributing to my pain

Post  Polly Gillikin on Wed Mar 14, 2018 9:47 pm

I am wondering if a lower back problem with my fifth lumbar vertebrae could be contributing to my pain. I have had this 3 years it is a terrible pain and I cannot wear underwear or have anything touch my vulva area. I have used estrogen creams amatriptylin and gabapentin creams now I am seeing a pelvic floor specialist and I seem to be getting some relief.They say mine is nerves pinched and I had low estrogen any advice I can get would be appreciated.

Polly Gillikin

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L5/S1 Issues and Vulvadynia

Post  karana on Mon Apr 02, 2018 7:04 am

I wanted to write and support what you said for anyone else who reads this. I've been dealing with vulvadynia on and off since I was a teen (I'm in my 40s), and it wasn't until I was in my 30s that it was properly diagnosed. I've also had issues with disc bulging and pinched nerves from L5/S1. It took years to take the pressure off of those nerves and when my muscles were finally strong enough to properly support my spine the vulvadynia pain decreased. I've just recently had a re-injury to my low back and the horrible vulvadynia pain has returned, so I'm using the exercises I learned years ago to try to release the pinched nerves and it is slowly helping.

Over those same few years of initial L5/S1 issues I also found some research that pointed to low free testosterone levels as a possible cause of vulvadynia pain. It took a long time but I finally found a doctor who was willing to test those levels and when we did, sure enough, they were very low. She prescribed a testosterone cream to be applied locally to the vulva and that over time helped as well.

My advice for anyone dealing with vulvadynia is to be your own best advocate. Do research on all the schools of thought as to what may cause vulvadynia and what may treat it, read forums, and most of importantly if your doctor doesn't want to try something that you feel will help you, find a new doctor. The "specialists" I've seen were each set in their own lines of thinking that their resolution was the only one that worked and that if it didn't work for me then I was going to be like this for life. I didn't accept that. I kept researching, kept trying everything I could find and persisted at each thing until it was way past the point when it should have worked, then moved on to the next (and the next doctor when necessary).

I also advise getting a coccyx cushion to sit on, at least while you are at home. Get one with a donut hole in the middle and the tailbone space empty. This will take the pressure of of your spine and other sensitive areas.
Hang in there!


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

Post  Warrior2010 on Fri Apr 06, 2018 4:06 am

Thank you. I'm also in my 40s and I herniated my L5-S1 when I was 17. My vulvodynia (since 2010) is 95% gone thanks to years of pelvic physio, doing all the core exercises etc, acupuncture, nutrition except I have a spot between my anus and vulva on the left side- which bothers me all the time when I sit and if I've walked for a long time. Because of the sitting issue I can't wear pants because the seam runs right along that spit and makes it worse. Yes, I've tried the donut and that presses on the area too. Any advice?
(BTW- I just read a previous post on this conversation and I also wear a heel lift which I wear to eliminate foot pain on opposite foot that I had injured 12 years ago. As an aside I've done several years of physio exercises and my feet are strong since I can walk bare foot for days around the house)


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Post  stillinpain on Thu May 10, 2018 3:23 am

I've never heard of doing this before, but that could really help me! I already take Lyrica for the nerve pain I experience from having a tilted pelvis, but my L5 disk is very slightly pinched from my Scoliosis and one of my legs appears longer than the other. I wear really expensive shoe inserts because I have a high arch, but I would totally try removing the one on my left side to put in a heel insert to see if I notice a difference. My question is, how do I know what size to get? Should I just go to my chiropractor and ask what he suggests based off of the discrepancy between leg lengths? What brand/kind do you all suggest?


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

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