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

» Please tell me this can get better
officially diagnosed.... EmptySat Jul 18, 2020 7:38 pm by sammykramer

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

» How I cured my Vulvodynia!
officially diagnosed.... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
officially diagnosed.... EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
officially diagnosed.... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
officially diagnosed.... 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!
officially diagnosed.... 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- …

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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 …

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officially diagnosed....

5 posters

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Post  julia Mon Aug 02, 2010 9:44 pm

with vulvodynia. by my gyno, so i'm an official member of the club now unfortunately! the consultant will write to my gp for me to take amytriptyline as i have done previously. Thought I would tell you all the news, but I'm in a weird mood about it after 3 years of waiting for a diagnosis, here it is.

xxx

julia

Posts : 31
Join date : 2010-07-21

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Post  Sebby (Admin) Tue Aug 03, 2010 11:36 am


Why on earth does it take them 3years to diagnoise! Its silly...I had to diagnoise myself and eventually the gynea agreed!

Welcome to the club then, I should make up sum sort of memebership badges lol Lets hope we will all be members of the 'Im now out of pain' club very soonnnnnnn!!!

Sebby (Admin)
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Post  Julie Wed Aug 11, 2010 6:55 pm

I was just prescribed amitriptyline (elavil) today as well... any progress? I didn't know how I felt about the idea of it being a nerve/pain receptor problem but any relief would be good!

Julie

Posts : 15
Join date : 2010-07-28
Age : 36
Location : Florida, USA

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Post  Sarah001 Wed Aug 11, 2010 7:19 pm

Funnily enough I keep being sent away with information leaflets that imply Amitriptyline is a temporary thing for vulvodynia and after 6 months or so most women should be able to come off it but that's not what I'm reading online from real women!

I was really worried about side effects from the Ami when I was given it for my musculoskeletal pain and the majority of people I told didn't help by claiming it would make me "like a zombie" and "completely loopy" so I started by chopping the tablets in half and taking half the dose to see how I felt. After a couple of weeks I'd got past feeling drowsy so I went to a whole tablet and the drowsiness started again so I'm working my way through it again until I up the dose some more. I get a terrible dry mouth with it though and have to drink nearly constantly to be able to speak!! If you keep taking it the side effects do actually seem to decrease as your body gets used to it so it's not too bad and I would liken the drowsiness to how I feel if I have a big glass of red wine so it's quite nice as long as you don't have to drive! I'm not at a high enough dose to get much pain relief yet but I'm working on it.

What bothers me is just because we can't feel our clothes rubbing on the skin and making it redder and sorer doesn't mean it isn't still happening so I try and stay sensible about what I wear and do etc.
Sarah001
Sarah001

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Join date : 2010-06-11
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Post  julia Tue Aug 17, 2010 1:03 pm

that sounds so bad Sad

I was on amytriptyline for this beforea bout 2 yrs ago. I can't remember how much it helped because I was on a cocktail of a lot of different things at the time.

But I do remember when I came off of them I felt very low.. damn antidepressants.

julia

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Join date : 2010-07-21

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Post  Sarah001 Tue Aug 17, 2010 1:46 pm

Do you know Julia I find if I miss one tablet I get really irritated! They must be having a calming effect on me I think. My partner says I'm a naturally irritable person so when I don't take a tablet I revert back to my normal self Rolling Eyes but it feels alot worse than that and I feel so annoyed all the time. For the first few days I took them I actually felt very depressed and down but it does say in the leaflet they can do this. Weird isn't it? An anti-depressant makes you more depressed to begin with! I'm not a fan of taking medication but I frankly can't deal with all my joint pains, the Fibromyalgia and this hateful vulvodynia without them so I'm resigned to a life of medication now.
Sarah001
Sarah001

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Post  Sebby (Admin) Tue Aug 17, 2010 7:33 pm


Im on Citalopram and Buspirone for anxiety anyway so I dont think it would be a good idea to change to another anti depressant..I do think I would get side effects.

Im pretty scared also of trying the anti-convulsants as they have a warning of increased risk of depressive symptoms.

I used to self harm so I have to be careful

Sebby (Admin)
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Post  Sarah001 Tue Aug 17, 2010 7:39 pm

What about good old fashioned co-codomal Sebby? It's quite a good painkiller if you can take it with your other meds.
Sarah001
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Post  jules Thu Aug 19, 2010 2:36 am

Hey everyone..i have written under other topics..this is to Julia. If the amitrip. does not work, try Lyrica. Lyrica has taken my pain away by about 95%. it has been a miracle for me. it is used for people w/ fibromyalgia. I like others, have tried everything else. i never did try amitrip. but, tried it years ago for headaches and for me..i became a zombie. i have had no side effects w lyrica. i'm on 150 mgs. can go up to 300%. i am slowly tapering off my neurontin (was at 3000 mgs)...that helped cut the pain by about 40%. now that the pain is controlled, i am doing physical therapy. i am working w/ a pelvic pain specialist. i am truly hopeful that this will get even better.

keep on trying! if amitrip. doesn't help try Lyrica. I am so happy.

jules

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