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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 …

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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 …

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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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

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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