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» 7 months since the diagnosis
New member desperate need of other vulvadynia sufferers  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New member desperate need of other vulvadynia sufferers  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New member desperate need of other vulvadynia sufferers  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New member desperate need of other vulvadynia sufferers  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 member desperate need of other vulvadynia sufferers  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
New member desperate need of other vulvadynia sufferers  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
New member desperate need of other vulvadynia sufferers  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
New member desperate need of other vulvadynia sufferers  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
New member desperate need of other vulvadynia sufferers  EmptyMon Apr 08, 2019 7:54 am by Jo44

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 member desperate need of other vulvadynia sufferers

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Post  Tfc13 on Fri Feb 08, 2019 6:55 pm

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in a lot of pain and discomfort , I feel so raw down there feel like I can't shut my legs ! Sitting for long periods of time is agonizing and I'm having sleepless nights so feeling great !!!!! (Not) I've been prescribed amitriptyline 10mg which I'm taking at night and have been for 11 days since first diagnosed, and diprosone cream which is supposed to help !
My gyno said if symptoms don't improve then see my gp and get them to up my dose , does anyone out there on the same meds as me ? , has it helped ? Not sure when the tablets are supposed to kick in , should I give it more time b4 I go back and see my gp to higher my dose ? I here it can take weeks b4 u feel the difference
Since taking the tablets I suppose I've felt better for about 8 days and now it's flared up again !!!! I'm so frustrated and depressed, please anyone have some insight

Tfc13

Posts : 3
Join date : 2019-02-08

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Post  fairlight10 on Sat Feb 09, 2019 7:39 am

Hi there. We are all going through the same shit on this forum. Persevere with the amitriptyline, you said you are feeling better so I think it is helping you. It takes time to gradually desensitize the nerves. I have been on a similar drug called Nortriptyline. They are both tricyclic antidepressants, used in lower doses they can help with nerve pain. I have been on it for 7 years now. You may need to up the dose but give it a bit more time, then go back to your GP and ask to go up to 20 mgs. You will still experience flares, consider what you eat or drink this can aggravate the delicate area our problem is situated. I ate too much pineapple once and paid for it later. This condition affects the urethera and it can feel like you have cystitis. You will get better but it takes time. Being frustrated and depressed are affecting your emotions and in turn affect the pain we can have with this condition. Try not to be so tense ,it does work. Try and find a position to sit that doesn't put pressure on the vulvar. Some suffers use a cushion with a hole in the middle. I still use one of these when I drive my car. I have put it in a black pillowcase to disguise it. I do hope this information helps you. This forum was a great help to me. Just knowing I wasn't the only one dealing with this horrible condition was a great help psychologically. I also had acupuncture which I found helpful.

fairlight10

Posts : 72
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Post  Tfc13 on Sat Feb 09, 2019 8:41 am

Thank you so much for the reply , am trying to remain calm , as I know stress doesn't help our situation but it's so hard isn't it .
My poor husband bless him , has to put up with it all
He has been a great support , don't know what I'd do without him , but it's nice to talk to some1 who fully understands , as much as he tries , that's why I came on here .
I've cut down on my coffee and have done for awhile as I had constant u.t.i.s so was forever on antibiotics , so now only have 1 cup a day , which I feel better , I'm a pretty healthy eater really eat tons of fruit and veg ,gonna keep a diary I think and see when I get my flare ups , I've had pains aswell in my top thighs round my buttocks too is this normal? I suffer with ibs so I've heard this doesn't help ?
May invest in one of those cushions too!
Thank you again for replying

Tfc13

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Post  fairlight10 on Sat Feb 09, 2019 9:10 am

Yes,my husband was a great support and helped me when I had a meltdown. Watch out on what fruit and veg you consume. Citrus is not good as this causes your urine to be more acidic and burn or string when you urinate. Also, there is some fruit and veg that are high in oxaltes. Spinach is very high. When I have been on holiday and eat out, I will eat salad and it is served with vingarette dressing, l will have a flare up. Watch out for shampoos if you wash your hair in the shower.These can run down into that area. I pop a flannel between my legs. I don't use anything down there, just rinse with water, don't have a hot bath this can still cause discomfort for the rest of the day. I have found really useful info from some of the girls on this site. Also, UK vulvar pain society have a site, so get reading.

fairlight10

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Post  fairlight10 on Sat Feb 09, 2019 9:11 am

Yes, you can have pain in your buttocks and the top of your legs.

fairlight10

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Post  Tfc13 on Sat Feb 09, 2019 10:09 am

I mainly only eat grapes and apples , well that's what I take to work everyday , seldom have citrus fruits , I eat a lot of salad without any dressing , not so much spinach but a lot of green veg
Silly really how the food that's good for you can be not so good for you at the same time
I have been prescribed dermal 500 too which I wash with , and like u put a flannel there when washing my hair , will have a look at that site and get reading thank you for your advice I really appreciate it

Tfc13

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