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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 …

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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 …

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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 …

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Anyone else have burning on the front of thighs?

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Anyone else have burning on the front of thighs?

Post  Hopeitworks on Sun Aug 13, 2017 2:20 am

10 yrs ago when my vulvodynia first started I had intense burning skin sensations on the front of both thighs. It almost feels like sunburn. Over the years it's calmed down a lot and it only bothers me once in a while. Anyone ever feel this?

My vulvodynia is unprovoked, but I had a Vestibelctomy and my V is doing great.

I do think I have PN nerve damage.

Thanks in advance for sharing!

Hopeitworks

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Re: Anyone else have burning on the front of thighs?

Post  Zbrown on Wed Aug 30, 2017 10:10 pm

I had the burning sensation also. I had it around inner highs, and right under my bum cheeks, also vulva area. I then seemed to get sciatica shortly after. My pain had got alot better but I still have bad days, I think mine is nerve related I had a fall on my bum/Tailbone and the next morning this occurred. Have you any suggestions how to manage the burning xx

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Re: Anyone else have burning on the front of thighs?

Post  Hopeitworks on Wed Aug 30, 2017 10:14 pm

I'm going to a neurosurgeon tomorrow. I will let you know what I find out. What treatment he recommends etc;

I have always believed my Vulvodynia is caused by some type of nerve damage.

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Re: Anyone else have burning on the front of thighs?

Post  mary jane on Thu Aug 31, 2017 8:01 pm

Zbrown wrote:I had the burning sensation also. I had it around inner highs, and right under my bum cheeks, also vulva area. I then seemed to get sciatica shortly after. My pain had got alot better but I still have bad days, I think mine is nerve related I had a fall on my bum/Tailbone and the next morning this occurred. Have you any suggestions how to manage the burning xx


With those symptoms it sounds as though you have pudendal neuralgia and not vulvodynia any longer. the same treatment applies and you can also get nerve blocks for it
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Re: Anyone else have burning on the front of thighs?

Post  mary jane on Thu Aug 31, 2017 8:02 pm

Hopeitworks wrote:I'm going to a neurosurgeon tomorrow. I will let you know what I find out. What treatment he recommends etc;

I have always believed my Vulvodynia is caused by some type of nerve damage.  


it's hard to prove it's nerve damage. I was able to come off my medication alltogether and had 1 year and 4 months of no symptoms. I basically had full remission. I doubt nerve damage would act that way as the moment you quit the medication you get the pain back ....
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Re: Anyone else have burning on the front of thighs?

Post  mary jane on Thu Aug 31, 2017 8:03 pm

Hopeitworks wrote:10 yrs ago when my vulvodynia first started I had intense burning skin sensations on the front of both thighs. It almost feels like sunburn. Over the years it's calmed down a lot and it only bothers me once in a while. Anyone ever feel this?

My vulvodynia is unprovoked, but I had a Vestibelctomy and my V is doing great.

I do think I have PN nerve damage.

Thanks in advance for sharing!

The pain in front of the thighs is just referred pain and not an evidence of nerve damage. when I saw my pain consultant 4 years ago she simply told me I have sensitized nerve endings from frequent bartholin cysts.
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Re: Anyone else have burning on the front of thighs?

Post  Hopeitworks on Thu Aug 31, 2017 8:15 pm

I have never had bartholin cyst. So what causes my referred pain? I'm just worried if I don't treat the nerve Vulvodynia will come back. I'm almost 5 weeks post op and V feels ok. A few flare ups with a little stinging but it doesn't last. I think I could live with the burning sensation on my thighs. But not if it cause v pain or clitoril pain.

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Re: Anyone else have burning on the front of thighs?

Post  mary jane on Thu Aug 31, 2017 8:19 pm

Hopeitworks wrote:I have never had bartholin cyst. So what causes my referred pain? I'm just worried if I don't treat the nerve Vulvodynia will come back.  I'm almost 5 weeks post op and V feels ok. A few flare ups with a little stinging but it doesn't last. I think I could live with the burning sensation on my thighs. But not if it cause v pain or clitoril pain.


https://www.physio-pedia.com/Referred_Pain



Referred pain can be from any nerve irritation at one site, but because nerves "talk" to each other, you can feel pain at a site that seems to not have any connection to the original injury or irritation. for example I used to have coccyx pain and pain in my toes from V.

5 weeks is very early however, so it actually sounds pretty good for the time being Smile

i'm sure the referred pain you get will go away with time
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Re: Anyone else have burning on the front of thighs?

Post  Hopeitworks on Thu Aug 31, 2017 8:25 pm

Mary Jane I would love to pick your brain all day lol. Your full of knowledge! I love it! Thanks I'm just going to stop Googling it for now and hopefully that will ease my anxiety. The internet scared me by saying if nerve pain is NOT correct it could result in genital arousal syndrome! I don't want that!!!!! So I googled that and oh my it scared me because sometimes I get tingling on my clitoris for no reason. Doc said the tingling is from V. Maybe I'll go back on Gabapentin. Idk....

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Re: Anyone else have burning on the front of thighs?

Post  mary jane on Sat Sep 02, 2017 1:59 pm

Hopeitworks wrote:Mary Jane I would love to pick your brain all day lol. Your full of knowledge! I love it! Thanks I'm just going to stop Googling it for now and hopefully that will ease my anxiety. The internet scared me by saying if nerve pain is NOT correct it could result in genital arousal syndrome! I don't want that!!!!! So I googled that and oh my it scared me because sometimes I get tingling on my clitoris for no reason. Doc said the tingling is from V. Maybe I'll go back on Gabapentin. Idk....

Persistent genital arousal syndrome is incredibly rare, a lot more rare than V. I used to have buzzing and tingling everywhere as well !

If this helps, you can try to start drinking valerian and sleepy tea Smile I found that this and magnesium helped me . anything that calms down the central nervous system will help and even eradicate nerve pain (alongside traditional treatment like medication or pelvic phisio)

I've had remission and relapse from V by now so I've learned a lot by reading forums like neurotalk and ones on fibromyalgia. They seem to be related, fibro and V.
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Re: Anyone else have burning on the front of thighs?

Post  Hopeitworks on Sat Sep 02, 2017 4:27 pm

Mary jane,
I probably overreacted and don't have presistent genital arousal. Especially since so many with V have tingling in clitoris. Thanks for your suggestions I'll try them.

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Re: Anyone else have burning on the front of thighs?

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