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» 7 months since the diagnosis
Vulvodynia and other neurological diseases? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia and other neurological diseases? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia and other neurological diseases? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia and other neurological diseases? EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Vulvodynia and other neurological diseases? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Vulvodynia and other neurological diseases? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Vulvodynia and other neurological diseases? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Vulvodynia and other neurological diseases? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Vulvodynia and other neurological diseases? EmptyMon Apr 08, 2019 7:54 am by Jo44

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.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

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 …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

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: 3

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 …

Comments: 4

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 …

Comments: 3


Vulvodynia and other neurological diseases?

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Vulvodynia and other neurological diseases? Empty Vulvodynia and other neurological diseases?

Post  wuhujen on Sat Apr 14, 2018 8:00 pm

Hi All,
I first experienced symptoms in 2010, but it was almost two years later before I got a diagnosis and then another 6 months of medication and PT to get real relief. It's been pretty manageable for the past few years, but I've recently had a flare up. Additionally, I've been having nerve pain that feels similar to my vulvodynia pain in my hands and feet. My doctors are testing for MS and a whole host of scary things, but since the pain feels so similar and vulvodynia is such a relatively unknown and under-researched disease, I was wondering if anyone else had found links between vulvodynia and other types of nerve pain?

wuhujen

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Vulvodynia and other neurological diseases? Empty Re: Vulvodynia and other neurological diseases?

Post  Jazzygirl on Mon Jun 04, 2018 7:44 pm

Have they found anything else wrong?

Jazzygirl

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Post  Denised10 on Mon Jun 25, 2018 10:58 pm

Hello,
I had this for 6 yrs 2012 and i get similar pain down my legs and feet but I also get nauseous too... it's so frustrating !
I also have good days and bad ..

Denised10

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Vulvodynia and other neurological diseases? Empty Re: Vulvodynia and other neurological diseases?

Post  mary jane on Sat Jun 30, 2018 2:31 pm

There is a small possibility to get referred pain in your feet or toes. Referred pain is when you have neurological damage or nerve pain in one area however feel the pain in a completely different area. I used to get shooting pain in my toes when my pain was not under control.
The only other neuro conditions that occur along with vulvodynia seem to be fibromyalgia, central sensitization and pudendal neuralgia (the latter being very, very rare).
Nerve pain in hands and feet can also occur from extreme anxiety.
It's best to get checked out for everything however, as only specific tests can check for nerve abnormalities.
mary jane
mary jane

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Vulvodynia and other neurological diseases? Empty Re: Vulvodynia and other neurological diseases?

Post  Guest on Sat Jul 28, 2018 6:30 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! I will reply to as many women as I can!

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