Vulvodynia Support
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» Hope to all my suffering ladies
New girl from US EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New girl from US EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New girl from US EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New girl from US EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New girl from US EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New girl from US EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New girl from US EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New girl from US 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!
New girl from US 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


New girl from US

+3
CamperUK
Mouse
shakerite11
7 posters

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New girl from US Empty New girl from US

Post  shakerite11 Tue Feb 22, 2011 1:19 am

Hi everybody!

I was just diagnosed with vulvar vestibulitis a few months ago and am super excited to have found a support group! I definitely need it! I'm 18, heading off to college next fall and it's been really hard for me to cope with the idea that I may never have a normal sex life :/ in fact, part of the reason I found out that I had VVS was that I was trying to work towards having intercourse for the first time with my boyfriend and realized how much the 'other stuff' hurt me and thought there was going to be no way for me to be able to actually have sex since those things hurt me so much. I'm one of the lucky ones and only experience pain when I attempt any sort of penetration (including tampons) but I've still been really depressed lately at the prospect of not really being able to enjoy sex ever in my life No anyone have any good advice on that?

Thanks so much for being here! You all seem like an amazing group! Smile

shakerite11

Posts : 3
Join date : 2011-02-22
Age : 31

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Post  Mouse Tue Feb 22, 2011 3:31 am

Hi hon and welcome! It's completely shite to end up here but we're pretty nice Surprised) There are a few people your age.

How are you going for treatment? Do you have a PT? It really helps to get your pelvic floor assessed. I've just had mine today woooo!!! She gave me some acupuncture on my ass. That's going to leave a mark. I'm not sure how I'm going to sit down for the next few days.

If you email Sebby she can add you to our FB group if you like. It's completely private, none of it posts to your wall. It's nice to see peoples faces, we're all real =)

Try not to worry too much about this being your life. We're all hopeful and looking for answers. That's not to say we don't get frustrated and swear a bit as well. This is a safe place to do that. Having a therapist also helps a LOT!

Take care
Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

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New girl from US Empty Thanks Vicki :)

Post  shakerite11 Tue Feb 22, 2011 4:15 am

@mouse I'm so excited to be in such a wonderful group of ladies. I will definitely see about joining the Facebook group Smile I only recently started thinking about seeing a PT. What will that visit likely entail? I'm a little intimidated haha

shakerite11

Posts : 3
Join date : 2011-02-22
Age : 31

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Post  CamperUK Tue Feb 22, 2011 9:12 am

Welcome Shakerite11!
I'm new here myself but you will find very quickly that this is the best place on the net for advice and support. Take care!

CamperUK

Posts : 15
Join date : 2011-02-15

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Post  naomi Tue Feb 22, 2011 1:45 pm

Hi Shakerite11!

Welcome to the forum that our Queen Sebby started Smile godsend that girl, I would have lost the plot (even more) if I hadnt have stumbled on this website!!

These girls are amazing so I hope you get the support u need! facebook group is ace too...we dont just talk about our Lady La-las all day Smile Smile

right, Ive got hair dye to wash off so catch up later on xxxx
naomi
naomi
Moderator

Posts : 262
Join date : 2010-04-09
Location : Cheltenham

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Post  noni Tue Feb 22, 2011 3:09 pm

Hey there

I second Naomis comment...Sebby is an angel !

This forum has saved us in our most darkest moments (for me, deff)

Anyways...this V stuff stinx! But we are all hopeful on here...lots of support and advice.


Take care
Noni
noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

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Post  Sebby (Admin) Tue Feb 22, 2011 10:04 pm

Embarassed Thanks girls Im blushing! lol do I get a crown with chocolate orange segments in it! Wink

and welcome Shakerite11 I do hope you can feel supported with our lovely little community

Have a read around there are various treatments we are all trying and we are determined not to give up! we of course do have our down days but thats when we can turn to each other Very Happy

It does seem the treatments for VVS and Vulvodynia are similar from what I have read except that surgery is an option for those with VVS but usually a last resort

Physical therapy is deff worth a try especially to help with pelvic floor and vaginal tightness and spasms. Im soon to try bio-feedback home training via Vulvodynia.com (Dr Glazer's site)

Ive also started Pregabalin (anticonvulsant) for nerve pain (I have constant pain) dr said it may take a couple of months to really know if it is working

A number of us myself included are also trying anti-yeast/suger diets...from the candida theory by Dr Crandell I(I prob have not spelt her name right) Naomi our moderator is our guru on that one Wink

Im certainly taking a multi-disiplinary approach to it!

Beware of any drs telling you its in your head or because you are depressed or anxious. Yes stress can effect any chronic pain condition but research has shown this is NOT the cause of VVS or Vulvodynia.

Take care and my email seems to hate me at the moment so if you wish to join our secret facebook group inbox me on this site

Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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New girl from US Empty helllo

Post  shay Wed Feb 23, 2011 9:16 pm

hi
Im shay and im 22 years old and in college so i know how it feels to be overwhelmed about being on your own and surrounded by young people all enjoying life and maybe sex sssssssssssssssh lol but do not let this madness stop you from enjoying the college experience

and you have come to the right place these lovely ladies our like god sent to me so you are blessed to be in the company of such wise and strong women

im also in the us so feel free to contact me

shay

Posts : 7
Join date : 2010-12-30

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New girl from US Empty Thanks ladies :)

Post  shakerite11 Thu Feb 24, 2011 11:47 pm

Sebby, the ladies are right! you've created an amazing group Smile I feel really privileged to be a part of it!

@Naomi on a side note, I notice that your avatar is a boxer. Do you have a boxer? I absolutely love them and I have two at home. Their names are Lucilla an Max and they are my big babies haha I love you

shakerite11

Posts : 3
Join date : 2011-02-22
Age : 31

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