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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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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