Vulvodynia Support
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» Hope to all my suffering ladies
Meet up? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Meet up? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Meet up? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Meet up? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Meet up? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Meet up? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Meet up? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Meet up? 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!
Meet up? 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


Meet up?

+2
Sebby (Admin)
naomi
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Post  naomi Tue Jul 13, 2010 9:04 pm

Arrange a meet up sometime folks?

I haven't got Skype and wouldn't have a clue how to set it up or use it!

I love this site thanks Sebby for creating it. Feels like a little family, so supportive

xxx
naomi
naomi
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Location : Cheltenham

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Post  Sebby (Admin) Tue Jul 13, 2010 9:31 pm


Thanks Naomi, A meet up would be fantastic.

Where are all you girls from??? Im in Dagenham Essex (poor me lol) near London tho

Sebby
xxxx
Sebby (Admin)
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Post  naomi Tue Jul 13, 2010 9:37 pm

I'm Cheltenham in Gloucestershire (nr Bristol). Can drive anywhere though as long as my trusty sat nav is with me Very Happy

bed for me, night all xx
naomi
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Post  maggie Wed Jul 14, 2010 11:31 pm

Hi, i'm in forest gate east london, i,m not far from you sebby, your all welcome to meet at my place.
maggie xxx

maggie

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Post  Sebby (Admin) Thu Jul 15, 2010 7:16 am


Oh wow Maggie your not far at all! I work for Newham Council organising the special needs transport.
Sebby (Admin)
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Post  Sarah001 Thu Jul 15, 2010 11:34 am

Well I'm miles from all of you and badly restricted by my other health issues so I'll have to pass!
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Post  julia Wed Jul 28, 2010 5:40 pm

Just thought I'd re-open this post.. I live in Kettering, Northamptonshire and would love to meet up with some of you, either here there or anywhere!

julia

Posts : 31
Join date : 2010-07-21

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Post  naomi Wed Jul 28, 2010 5:48 pm

Me too I'm easy! Love a good road trip! (with this condition it means I have to stop for more Costa coffee stops!!)

People ok to meet up in say a months time ish?

We could do a random day in London? or meet at a stately home? or someones local cosy pub?

Be warned...I will arrive with my big level arch file of gynae information...do not be afraid!
xxx Very Happy
naomi
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Post  julia Sat Jul 31, 2010 3:45 pm

Shall we try to confirm a day soon? I work Monday to Friday, so a Saturday during the day in London would be perfect for me.... what you all reckon?

julia

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Post  Sebby (Admin) Sun Aug 01, 2010 3:25 pm


Yes a Saturday is perfect for me as I also work Monday to Friday and can get to London no problem

Sebby (Admin)
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Post  naomi Sun Aug 01, 2010 5:48 pm

hows about a sat near the end of aug? and near to Sebby and maggie? where do you guys live again? I'm up for crashing at a travelodge (people are welcome to share a room to keep costs down, I dont snore!) and having a night out if anyone fancies it? might as well throw a meal in there too if anyones up for that?...just something to look forward to then Smile
naomi
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Post  naomi Tue Aug 10, 2010 7:12 pm

Sat 11th Sept...meet up then ladies?!!
naomi
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Post  Sebby (Admin) Tue Aug 10, 2010 7:56 pm


Ok Sat 11th sounds good to me xxx
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Post  naomi Tue Aug 10, 2010 8:08 pm

ace! thought id just throw a date in there! I'm happy to come down to ur and maggies part of the country! xxx
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Post  Sarah001 Mon Sep 20, 2010 12:44 pm

Did you girls meet up? How was it meeting other board members face to face?
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Post  jules Tue Sep 21, 2010 2:54 am

Hey...I feel left out. No road trips from the U.S. did you all meet? If so, how did it go?

jules

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Post  Sebby (Admin) Tue Sep 21, 2010 7:07 pm


Hey Sarah, yeah me and Naomi met up!

It was a random and fun nite!!

We went up to London and got chatted up by two American fellas! lol We can't remember their names now!!

It was great to meet up face to face...its wonderful to get to know and speak to those who understand you condition as it really makes you feel less alone with it!

Sebby
xxx
Sebby (Admin)
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Post  Sebby (Admin) Tue Sep 21, 2010 7:08 pm


Oh Jules its you!!

I got confused with the name change! lol

Laughing
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Post  jules Sat Sep 25, 2010 5:05 pm

Yes, I changed my profile name. I didn't want some of the identifying info. I had included w/ my profile name (my initials). so glad you met and you were hit on by American men. Must not have been too memorable if you can't remember your names. Hope everyone is hanging in there.

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Post  Sebby (Admin) Wed Sep 29, 2010 9:15 pm


Well I got a friend request from one of em on facebook!! lol Aparently he is called Andrew!! Lmao
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Post  jules Thu Sep 30, 2010 3:29 am

ha ha! that's great. i'm not your only American facebook friend, huh?

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Post  naomi Sun Oct 03, 2010 9:33 pm

hello all!

back from hol with my folks it was so relaxing just going to the beach and BBQ's in portugal. Def what the doctor ordered!

Yeh meet up was funny!! I remember he had tinsey hands/arms?...or am i making that up??! he couldnt touch his shoulders?! And some random mini festival on the banks of the river thames! Glad we didnt go off clubbing with them though as I would not have been able to drive back home the next day.

Ooooooowa Sad I really wished we lived close to each other and could met up regularly. Its so random how u meet people!! Ur ace company though Sebby, felt like Ive known u forever!!

We need to arrange another meet up! If anyone has any suggestions as to where? Im always up for a road trip and dont mind driving, only thing is I need a few weeks to save up pennies....benefits dont really add up to much. Unforch we cant cross the ocean though to visit u guys in the US Sad
naomi
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Post  jules Mon Oct 04, 2010 1:01 am

Naomi, it sounds like you had a great time. I would love to go to Portugal. It hear there is a high alert for Americans to travel in Europe and the UK. Also the British are being warned about traveling. Those damn terrorist. Get a life!!! I would really have to save up my pennies to come and see you all. Naomi, how long of a drive is it for you to meet w/ Sebby? It sounds like you two are pretty close in distance?

Hope you all are w/out pain today. One day at a time. I went to a big event last night...dinner/dancing/drinks etc. I could barely sit. However after three Martinis...or so, i was feeling pretty good.

Let me know how your meeting is...it would be great to meet you all in person. If you are ever in the U.S. in my state..i would love to meet you. Not sure if i will ever get my husband to travel to England, unless of course, you all have casinos, then maybe :-)

jules

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Post  Sebby (Admin) Tue Oct 05, 2010 6:51 am


Yes Naomi he did have little hands and arms!! haha
Laughing

Yeah it does feel like we have known each other for ages!

Would be great to go on a road trip and meet up with you other girls.

My mums disabled so as long as I can make sure she is ok and has someone else to hand if she feels unwell then im up for it!

Sebby
xxx
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