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

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

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

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

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

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

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

» Help New Diagnosis
Heaviness ??? 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!
Heaviness ??? 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


Heaviness ???

5 posters

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Heaviness ??? Empty Heaviness ???

Post  Zbrown Mon Mar 03, 2014 7:12 pm

Does anyone else ever feel like a heaviness bulge down there with what I think is unprovoked vulvodynia ???? I hate feel like iv a tennis ball sitting there lol !!!!!

Zbrown

Posts : 131
Join date : 2014-02-26

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Post  Mariahopes Tue Mar 04, 2014 7:14 pm

Hiya,

Yes I do! Often feel like a little ball is stuck inside me or my pelvic floor is supporting a great weight! It's part of the Pfd that may be causing your v! Have you started physio yet?? Also have a read of this article..

http://www.elle.com/beauty/health-fitness/pelvic-therapy-practitioner-amy-stein-interview

Xx

Mariahopes

Posts : 14
Join date : 2014-01-27

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Post  Zbrown Tue Mar 04, 2014 7:34 pm

No ATM I'm still back and forward to my gp with no diagnosis yet but I am pretty sure this is it , all my stds and stis clear yeadt clear bv clear .... Blood test for imflamation came back with a small marker or something?? Everything looks fine except swollen and bit red . But I have the constant burning around vulva anus and inner thighs can't wear pants at all lately Sad and sex is just awful. I'm living in Northern Ireland I'm not sure if there is many tryed researching but I'm getting referred to a gynocologist soon ??? Any tips where I should go xxx

Zbrown

Posts : 131
Join date : 2014-02-26

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Post  Mariahopes Tue Mar 04, 2014 8:06 pm

I've not had an official diagnosis either... Like u all swabs etc came back clear. Mine started after having my little girl... Had a very painful episiotomy and my PT believes the trauma of the birth caused my Pfd which in turn creates the internal muscular stinging. I'm working hard with her to release the muscles and restore normal tone to the muscles. Felt some improvement over the last few weeks but there's no quick fix. Do u know what May have triggered your pain. Xx

Ps get referred to a knowledgeable gyn ASAP and search for a cause of the pain and thus the correct treatment! Good luck doll! Xx

Mariahopes

Posts : 14
Join date : 2014-01-27

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Post  Zbrown Tue Mar 04, 2014 8:12 pm

Awwww dear :/ well tbh it sounds literly very crazy I went on a night out hot quite drunk fell on my bum was fine rest of night came home fell asleep in my leggings ect got up was pain in one area then moved around from day to day. I was quite drunk and after awhile I started thinking to myself putting crazy thoughts into my head was I assulted or anything just because this came out if nowhere silly girl for getting that drunk tbh or idk was it the fall. It is depressing as only my gp are starting to listen now :/ but no physical findings just red swollen four months later. My boyfriend and mum have been great but my only real relief is talking on here as none of them understand that burning feeling tbh .... For months people said I was imagining it all crazy xxxx

Zbrown

Posts : 131
Join date : 2014-02-26

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Post  Rainy Day Fri Mar 07, 2014 11:34 pm

Yes, when I was at my worst, I too remember having 'heaviness' down there near my v area. It would feel like a weighted tennis ball. I also had terrible burning down my thighs. Once one area gets pissed off, it 'talks' to other areas...and they get all pissed off. It's an endless cycle. Just don't irritate the pain. I don't get flares too often anymore, but I have learned NOT to touch the area of pain at all with anything (e.g. wearing skirts...NOT sitting...keeping legs apart). It takes a long time to reverse the nerve pain. I recall my physio saying it would take 2x longer to get out of pain as how long you have been in pain. There is some truth to that I think. I would use a flat ice pack wrapped in a soft towel at night....and sleep with the ice pack touching both my burning thighs. I had to keep my mind off the pain in order to reverse the pain. Once I finally got the burning to go away in my thighs (with medication and staying OFF the pain), it turned into more of a tingling sensitivity. I had to desensitize my thighs then...would rub my thighs for about 1 minute with a dish rag each day to get used to them touching things again. Sounds crazy, but the nerves ARE crazy. It took months and months to reverse my pain, but I am easily 90% back to normal again...and I am even thinking about having a 2nd child. I just check this site from time to time to give people hope that it DOES get better. SO many people avoid these sites...afraid to cause a flare from thinking about it, but I force myself to get back on here from time to time to let people know there is a future...stay positive...keep yourself unstressed....relax....it gets better!

Rainy Day

Posts : 54
Join date : 2012-07-19
Location : US

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Post  Zbrown Sat Mar 08, 2014 8:31 am

Thanks for the advice !!!! I am currently not on any medication ect yet apointment on Tuesday so hoping to get something ! Yeah it's so annoying mine changed from day to day where the pain is and the steroid cream I got just agitated me after 6 days had to stop , I just can't wIt to start feeling myself again lost a lot of weight recently too only benefit of it lol xxxx

Zbrown

Posts : 131
Join date : 2014-02-26

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Post  Loulou Fri Mar 28, 2014 11:23 pm

Hi Zbrown

i think i've responded to another of your posts tonight? (i'm catching up having not been on here for a while - so sorry for all my posts girls!) but I wanted to respond to this one too cos i DEFINITELY think you should get your back and pelvis checked out by a good chiropractor or physio after the fall you had. If you've knocked something out of place or something was damaged and is now inflamed in your back/sacrum/coccyx/pelvis area as a result of the fall it might be the cause of your vvd. Sounds like you might suspect that too? Even something slightly out of line or inflamed can have a knock on effect on nerves and muscles, and all the nerves for the vulva and anus originate in the lower spine area. If you have a read through some of the older threads about physio and one particular long one I remember about "6 months of pain" I think it was called (can't remember which section it was under - don't think it was Physio), you'll see a lot of info about this type of issue and vvd which myself and others commented on.

So definitely worth getting a good checkover to rule it in or out as a cause.

Loulou

Posts : 124
Join date : 2012-01-18

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Post  Zbrown Fri Mar 28, 2014 11:49 pm

I just replied to your other post lol !!! Yeah I am starting to think myself this may be a cause like after a night if sleeping ect I feel
Almost fine until I get up start moving around. And I do feel a lot tighter down there than before could be dye to tensing up, the pain burning actually sometimes randomly will go down my right leg then a sort of tension burning the part behind my knee back of leg it's all very strange ?? Sitting too long is the worst tbh !!!! Xxx

Zbrown

Posts : 131
Join date : 2014-02-26

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Post  lavrose Sat Mar 29, 2014 1:26 am

Absolutely. I remember it was St patricks day, and I was roaming around this crowded bar with my girlfriend thinking, omg, cant wait to get the hell outta here, It feels so bad, it feels like a bowling ball up in there, it was awful
lavrose
lavrose

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Post  Zbrown Sat Mar 29, 2014 8:38 am

It definitely does after a few drinks I forget the pain only upside but the next day I pay for it !!! So do use think physical therapy be best idea xxx

Zbrown

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