Vulvodynia Support
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» Hope to all my suffering ladies
Physio how to find uk  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Physio how to find uk  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Physio how to find uk  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Physio how to find uk  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Physio how to find uk  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Physio how to find uk  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Physio how to find uk  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Physio how to find uk  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!
Physio how to find uk  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


Physio how to find uk

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Post  Zbrown Sun Mar 23, 2014 1:25 pm

What's the best way to find a physio to asses pelvic floor muscles I'm in Northern Ireland researched a couple of times online with no great results , as I do feel they are exstremly overworking with all the tension with the pain any suggestions would be great ! And dialators any use or waste of money debating on buying some ? Xxxx

Zbrown

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Post  Loulou Fri Mar 28, 2014 10:13 pm

Hi there - usually a GP/specialist would refer you or if you want to go the private route have you tried PGOP? (Pelvic Obstetric and Gynaecological Physiotherapy) which is linked to the Chartered Society of Phyiotherapy. It's specialised for women's physiotherapy which is what you'll need.

http://acpwh.csp.org.uk/

If you go to the bottom of the page and the Find a Physio box and type in Northern Ireland a few options come up. Hope you find someone who can help.

Can't comment on dilators as I didn't use them but I know a lot of women on here have so i'm sure they will comment.

Loulou

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Post  Zbrown Fri Mar 28, 2014 11:44 pm

Thanks !!! I'm starting acupuncture on Monday , iv tryed googling womens pelvic floor assement a ect but obviously here they don't seem to be as many but yeah I am with a private gynocologist but luckily she's putting the rest if my treatment threw the NHS thank goodness this is all becoming exspensive !!! Did you find physio helped ? X

Zbrown

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Post  Loulou Sat Mar 29, 2014 11:28 pm

For me it was a chiropractor that made the biggest difference. The women's health physio I first went to focussed on my pelvic floor assessment but she missed the problem with my misaligned pelvis! I only found out about it cos I went to see a chiro about an unrelated problem with my neck and shoulder and she spotted the pelvis problem (due to a sacro-iliac joint that had been stiff and stuck probably for many years) which turned out to be the cause of my vvd. So make sure your physio checks out your back and pelvis structure as well as your pelvic floor just in case. A chiro will automatically do that but most can't/won't do internal pelvic floor work (I think McTimoney chiros can tho as there's been a vvd study using them)

I also did some home physio exercises from the Amy Stein book - Heal Pelvic Pain and i started yoga and pilates once my misalignment was corrected. It took a long time but it worked.

I know what you mean about expense tho! My physio was NHS but the chiro was private, but its worth it to get sorted. And i hope your acupuncture gives you some relief while you get the rest of your treatment sorted.
Lx




Loulou

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Post  Zbrown Sun Mar 30, 2014 12:27 am

Thanks for the great answers I now think I should maybe atleast seek a chiropractors advice , iv had alit of random pain lol tbh I never thought a fall would cause all this !!! Well that's the main thing I think could trigger it yeno , are you cured now ??? Xo

Zbrown

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Post  Loulou Sun Mar 30, 2014 9:17 pm

Yes I would def say get as much professional advice/opinions as you can, keep your options open. I also never believed it could be related to my back or pelvis - I was convinced for ages that it was some type of sub-clinical thrush. But i'd had problems with my back before so when the chiro/yoga/pilates started to work it all kinda made sense in the end.

And yes I'm cured and back to normal now  Very Happy So keep going - it's not a life sentence!
Lx

Loulou

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Post  Zbrown Sun Mar 30, 2014 11:12 pm

Thanks for the positive advice !!!!! Tomarrow I have my first acupuncture maybe it will give me. Bit of relief while I find the next parts to this puzzle ! Congrats on feeling better I think with feeling this way for five months if I felt better I'd cry with relief xxxxx

Zbrown

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Post  Zbrown Sun Mar 30, 2014 11:18 pm

Chriopractor researching in the morning it is Smile possibly the woman doing acupuncture may know of a good source. Yes I was thinking of buying that book is it good ? I just bought recently when sex hurts I'm about half way through so far it's interesting. Are you on any medication ? Was yours all over or one area ?? Sorry for a the questions it's just great to talk to someone in the uk who deals with referrals ect thanks xxxxx

Zbrown

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Post  Loulou Sat Apr 12, 2014 6:53 pm

Hi - sorry for delay in replying to you ZBrown, i only pop in here now and again. To answer your questions (and please don't worry about asking questions! I'm happy to answer in the hope it will help) - the Heal Pelvic Pain book is very good and easy to follow. But if any of the exercises or stretches cause you further pain just miss those out until you start to feel some improvements - listen to your body and don't push it too hard in the beginning especially if you do have tense muscles. Slow and gentle is best and it does take time to retrain your muscles so stick with it.

The only medication I ever took was painkillers (tho they didn't really help tbh). Personally I wasn't keen to do the Ami/Lyrica/Gabapentin etc cos I was concerned it would only treat the symptoms and not the cause - and also I hate taking any type of medication! So I went down the physio route first (with some acupuncture for pain relief), but if that hadn't worked then I would definitely have tried the medication.

My pain was all around my vestibule and when it was at its worst it also affected my clitoris. At its worst I also had some lower abdominal discomfort and a feeling of always needing to pee. The pain in my vestibule felt like a raw, burning feeling and when it was really bad it was like an intense stinging. Soooooo awful. As it gradually got better the burning eased to become more of a feeling of discomfort before finally disappearing.

How did you get on with the acupuncture?
xx

Loulou

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Post  Zbrown Sat Apr 12, 2014 9:45 pm

I find the acupuncture so far has not done much but iv only been twice , thanks for all the advice currently now the pains very raw and sore feeling ouch x

Zbrown

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