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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 …

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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 …

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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.

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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 …

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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

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 …

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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


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

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 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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totallycured

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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.

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L5/S1 Issues and Vulvadynia

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

Hi,
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!

karana

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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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Wow

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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