Vulvodynia Support
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» Hope to all my suffering ladies
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Needing Support for Vulvodynia - anyone able to speak I am struggling!  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Needing Support for Vulvodynia - anyone able to speak I am struggling!  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!
Needing Support for Vulvodynia - anyone able to speak I am struggling!  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


Needing Support for Vulvodynia - anyone able to speak I am struggling!

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Post  JS007 Thu Dec 17, 2015 1:20 pm

Hi, I appreciate I have already posted a couple of things on here and thank you for the responses that I had. I am struggling to come to terms with having this condition - I wake up every morning thinking "this is going to be the day it disappears" or "after I go to the toilet today first thing It will feel normal"...sadly this is not the case. I started having symptons of discomfort back in June this year and only over the last month has the Gyneo suggested it is vulvodynia and put me on a course of Amitryptiline. I am now on 50mg a day (only upped this dosage 2 days ago) but I still have this feeling of "nappy rash" after going to the toilet, it is almost as if my skin becomes sensitive after pushing down for a bowel movement...or urinating, almost like the feeling of soiled underwear that rubs?? does this make any sense to anyone - I feel very alone with understanding this condition. I want the meds to work but don't know how long it should take to work?? I always have symptons EVERYDAY but they do vary dependent on my activities. I can have intercourse with no issues once inside - sorry TMI. I would like to hear how people get through having this before it disappears or gets under control? No one understands what this feels like, and the fact that because I don't have any "physical signs" of tenderness or redness etc. Is this still definitely Vulvodynia? I am worrying that it might be bladder related instead...but I feel everything down below??
I hope to hear from someone who is happy to give me some comfort that I will deal with this and get over it! Smile

JS007

Posts : 8
Join date : 2015-11-16

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Post  WaahwaahUK Thu Dec 17, 2015 1:42 pm

There are lots of people that have frequented this forum, and now don't, simply because they got better. People do get better. I understand the need for understanding with this condition, as it can make you feel so very alone. I think its important to remember that there are a lot of people who don't come here now because they got better. Healing can take time. Stress I believe can add to any pain. Empower yourself and arm yourself with knowledge and concentrate on being kind to yourself. This forum has helped me look at ways to improve how I feel and though I am by no means better, I do have better days.

WaahwaahUK

Posts : 117
Join date : 2015-07-31

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Post  meelie Thu Dec 17, 2015 9:53 pm

i don't come so often because i talked my primary into Rx for Trammadol for pain which keeps me comfortable most of the time. God bless this understanding Dr.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  sailor_moon Sat Dec 26, 2015 12:53 am

I am always up for a chat on here, so please feel free to PM me any time! It is so hard to try and vent to someone who has no idea how horrific this condition is. I wish this forum was more active like how it used to be. I would love to hear more about your story and how all this came about. Try and stay strong! xxx
sailor_moon
sailor_moon

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

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Post  sarisbaris Thu Dec 31, 2015 4:15 pm

I am cured. I've been pain free for over 2 years. This didn't happen by accident. It didn't randomly go away. I was in and out of pain for 15 years until I found the right doctor. From what I have read on this site, my cure is rare. If the medicine you are taking isn't helping you, you need to find a doctor/medicine that can. Most doctors (both western and alternative) won't tell you that they don't know what it is. If they don't have a theory why it started and if your symptoms aren't getting better, then you need to find a doctor who can. When I finally found the right doctor (who is an alternative doc who gave me herbs in pill form... oh yeah, while I was 2 months pregnant) it took about 1 month for the pain to be manageable and 2-3 months for the pain to go away completely. It has never returned. Vulvodynia is just a label... it really only means your vagina area hurts. Seriously... that's it. It could be muscle, it could be an infection that they can't detect. It could be lots of things. Most doctors have absolutely no clue which is why this is so so hard for those in pain! We want answers and they don't have them. You need to be brave and listen to what the doctors are not telling you. Please read my post in 'Vulvoydnia Info' forum titled 'Cured from vulvodynia... ' There is hope!

sarisbaris

Posts : 69
Join date : 2014-02-17

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