Vulvodynia Support
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Vulvodynia Support

Does life feel like one huge pain in the Vulva??? I have created this forum so that women living with Vulvodynia (Vulva Pain) can have a place to share, chat and support each other.


The link to my research project is in the Announcements forum, please participate if you can!!
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» Hope to all my suffering ladies
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
PUDENDAL NEURALGIA, NOT VULVODYNIA? 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!
PUDENDAL NEURALGIA, NOT VULVODYNIA? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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


PUDENDAL NEURALGIA, NOT VULVODYNIA?

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Vulvodynia Support :: Support and Advice

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PUDENDAL NEURALGIA, NOT VULVODYNIA? Empty PUDENDAL NEURALGIA, NOT VULVODYNIA?

Post  Ellen1112 Tue Oct 04, 2016 8:11 pm

Hi ladies,
So I was diagnosed with vulvodynia about two years ago when I was 16. I am now 18 and only just starting to find answers.
I had every test done and I was showing up perfect. Nobody would do an internal exam as I was so young (which in my opinion is bullshit, I was too young to be in that pain), but after coming to my wits end and finding a lady who does accupuncture/physiotherapy, I am getting answers and this may apply to you.

She did an internal exam and within minutes found my pudendal nerve was pulsing and I have a tight, short pelvic floor. She has been treating me with a small bit of manual internal massaging and needling my pudendal nerve in my lower back and leg, and I can say it has been a long time since I felt this good.

I fell a few years prior on my hip and bum and this is what she thinks caused my pain.
Here were my symptoms:

-Burning/discomfort in the vulva, around the urthra
-Huge relief after urination (due to the warmth calming the nerve)
-Worse when exercising, sitting down for long periods or walking.
-Relief on period.
-Worse a few days prior to ovulation (not sure why)
-vaginal dryness

I hope that somebody finds help in this, I know how painful it is as vulvodynia is very very similar.
Please let me know how you get on.

Best of luck xox I love you

Ellen1112

Posts : 4
Join date : 2015-06-21
Age : 26
Location : Ireland

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Post  WaahwaahUK Sun Oct 09, 2016 3:02 pm

Your story and symptoms are very similar to mine. I had the added complication of an infection early on also, but have had pudendal nerve issues too.

WaahwaahUK

Posts : 117
Join date : 2015-07-31

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Post  sailor_moon Mon Oct 31, 2016 9:44 am

I have recently been properly diagnosed with pudental neuralgia and possible pudental nerve entrapment after seeing the only PN specialist in the southern hemisphere. MRI shows that I have had a fracture in my spine at the s3-s4 junction that was not diagnosed by doctors as despite having numerous falls and having a very sore lower back, they dismissed me. And I have been stuck in this mess for 3 1/2 years.

Recently saw a physio who rejected me and immediately put me in the too-hard basket Sad so i see another one next week who will hopefully be able to help me.

Looking into getting acupuncture...just trying to find a good one!
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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