Log in

I forgot my password

Latest topics
» 7 months since the diagnosis
Diagnosed Recently  EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

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

» Help New Diagnosis
Diagnosed Recently  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!
Diagnosed Recently  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Diagnosed Recently  EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Diagnosed Recently  EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Diagnosed Recently  EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Diagnosed Recently  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


Diagnosed Recently

Go down

Diagnosed Recently  Empty Diagnosed Recently

Post  flissyg on Tue Jan 08, 2019 3:55 pm

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 with a burning, raw feeling all over my vulva and extending down around my back passage. Unfortunately this pain has been constant since. Sometimes it is accompanied with the original shaper pain I felt in my clitoris and sometimes with a sharper pain in the left hand side of my vaginal entrance, always this constant sore, burning raw feeling.

I have seen several GP’s, one of who whom was lovely, and one of whom I left in tears after she basically said it was imagining it!! I have been prescribed thrush treatment, hydrocortisone creams, barrier creams and Betnodate steroid cream. All to no avail. I was then referred to a vulval clinic at a local hospital but the prospect of waiting weeks upon weeks just to see someone, sent me on the pathway of private health care. I saw a gynaecologist 3 weeks ago who diagnosed Vulvodynia and then proceeded to tell me that there was no cure, its complicated to treat and some women have it for life!

So now, completely terrified after that diagnosis, I have been doing my own research and have found this forum. I am very emotional, I feel alone and am quite scared for what the future holds for a single woman with this kind of condition.

I am using Lidocaine twice daily and came off the mini pill 1 month ago just in case. With it being a new diagnosis my Gynaecologist didn't want to start with any medication straight away. The Lidocaine helps with the immediate pain but doesn’t seem to be doing anything else in the long term.

I guess I am here for reassurance, and any tips/advice people might be able to give. I’m sorry for the long post!

flissyg

Posts : 1
Join date : 2019-01-08

Back to top Go down

Diagnosed Recently  Empty Re: Diagnosed Recently

Post  mary jane on Wed Feb 06, 2019 1:24 pm

flissyg wrote: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 with a burning, raw feeling all over my vulva and extending down around my back passage. Unfortunately this pain has been constant since. Sometimes it is accompanied with the original shaper pain I felt in my clitoris and sometimes with a sharper pain in the left hand side of my vaginal entrance, always this constant sore, burning raw feeling.

I have seen several GP’s, one of who whom was lovely, and one of whom I left in tears after she basically said it was imagining it!! I have been prescribed thrush treatment, hydrocortisone creams, barrier creams and Betnodate steroid cream. All to no avail. I was then referred to a vulval clinic at a local hospital but the prospect of waiting weeks upon weeks just to see someone, sent me on the pathway of private health care. I saw a gynaecologist 3 weeks ago who diagnosed Vulvodynia and then proceeded to tell me that there was no cure, its complicated to treat and some women have it for life!

So now, completely terrified after that diagnosis, I have been doing my own research and have found this forum. I am very emotional, I feel alone and am quite scared for what the future holds for a single woman with this kind of condition.

I am using Lidocaine twice daily and came off the mini pill 1 month ago just in case. With it being a new diagnosis my Gynaecologist didn't want to start with any medication straight away. The Lidocaine helps with the immediate pain but doesn’t seem to be doing anything else in the long term.

I guess I am here for reassurance, and any tips/advice people might be able to give. I’m sorry for the long post!

You need to go to a specialist consultant in vulvodynia and not a GP. Do you live in UK? Wendy Reid at Royal free is the best

Creams don't do much for nerve pain. Are you using lidocaine 5% ?

The gold standard is medication for nerve pain like Amitriptyline and Lyrica

Lyrica is no longer expensive so GPs have no effin excuse to not prescribe it.

Most of all, remember most women either recover or manage this very well. You can also read Sukigirl's thread on patient.info where she says she got better with desensitization and amitriptyline 50 mg.
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

Back to top Go down

Diagnosed Recently  Empty Re: Diagnosed Recently

Post  Warrior2010 on Sat Feb 09, 2019 1:46 am

You need to find a pelvic physiotherapist. I did almost 2yrs of it (not consecutively). They can diagnose whether your pelvic floor muscles are too tight or not coordinated. Google an image and you'll see that they make a hammock /basket around your bladder and vagina so if they are too tight causes a lot of pain etc. I was diagnosed 8 yrs ago and had a car accident 3 yrs after that which made everything worse because the back therapy increased the time in my pelvic muscles. That's when I saw my firsymt pelvic physiotherapist and started therapy and exercises. There is hope.. hang in there.

Warrior2010

Posts : 5
Join date : 2017-10-10

Back to top Go down

Diagnosed Recently  Empty Best thing I have found

Post  feeling desperate on Wed Feb 13, 2019 12:26 pm

flissyg
Like me you may be unable to go to the recommended London hospital. It took 8 months for me to get an appointment at the nearest gynae clinic and advice was pretty useless. I've had this condition for 18 months and been prescribed numerous creams, all of which produced horrendous burning and discomfort. Eventually I discovered that they all contain parabens, variations of liquid paraffin and/or alcohol and produce an extreme allergic reraction. The only topical thing I've found which I can tolerate and which provides some relief is called YES vaginal moisturiser. It is organic and water based, available on the NHS and a tube lasts ages.Google it to see variations of the same product. I also take Pregabalin 50mg morning and evening but am doubtful if this helps - it does send me to sleep.

feeling desperate

Posts : 6
Join date : 2018-01-02

Back to top Go down

Diagnosed Recently  Empty Vagicaine!!

Post  davesjen on Thu Feb 14, 2019 6:35 pm

Please go to Target and get Vagicaine - it’s very inexpensive and provides longer term relief! I’m so sorry...blessings to you...

davesjen

Posts : 8
Join date : 2012-11-19

Back to top Go down

Diagnosed Recently  Empty Re: Diagnosed Recently

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum