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» 7 months since the diagnosis
Recovery story please read !! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Recovery story please read !! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Recovery story please read !! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Recovery story please read !! 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!
Recovery story please read !! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Recovery story please read !! EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Recovery story please read !! EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Recovery story please read !! EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Recovery story please read !! 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


Recovery story please read !!

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Recovery story please read !! Empty Recovery story please read !!

Post  pr3ston on Tue Sep 18, 2018 11:04 am

It's taken me a long long time to muster the courage to post this as it requires me delving into some deep trauma which I'm sure you can all relate to.
I have posted in this forum before saying that I wanted to take my own life just to end the pain; I was 100% convinced that there was no cure and this was what the rest of my life would be like.
This time last year, after trying amitryptiline, gabapentin and some other tricyclic antidepressant I forget the name of I was about to drop out of University and I was starting to plan my suicide; but I thought I'd give it a go for a few weeks.
During this time I was put onto pregabalin (Lyrica)
Something... Something felt different.
I was also using a mix of lidocaine and dilators
Things have been gradually settling with a few flares which I haven't suffered since May now.
I've learned to avoid tomatoes which cause a LOT of pain and itching - look up nightshade vegetables, they could be affecting you too!


I was so so so convinced that suicide was the only way out but please please please try to hang in there !!!! I am still here 1 year later and I am much better. Something will work. This is coming from someone who was absolutely convinced it wouldn't. In the meantime be kind to yourself and make sure you have supportive family and friends around you because it makes all the difference. If people ignore your chronic pain don't give them the time of day you don't need that toxicity.

Something my doctor told me was that just because there isn't one specific cure, there isn't no cure it's just different for everyone and that's why it can take a while.

I am sending you all so much love and I hope you find relief really soon <3

pr3ston

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Post  emalita on Wed Sep 19, 2018 2:15 am

I wish there were more doctors like yours out there. I was just telling someone that I wish doctors would replace "there is no cure" with "there are many causes, so we might have to exhaust a lot of treatments." It is so much kinder AND more correct!

Although I am soooo much better than I was a few years ago, and I can sometimes have mostly painfree days...I hate thinking that my life will forever be just "getting by" and managing the pain. It's almost worse when the pain subsides but isn't gone because now I am even more unwilling to potentially cause a flare...so I avoid so much more. Whereas before I was already in pain, so what was a little more...

Anyways, I'm so happy for you! I'm glad you were able to find your food triggers because doing so made a huge difference for me.

emalita

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Post  pr3ston on Wed Sep 19, 2018 6:44 am

Yes! Unfortunately sometimes I think doctors forget to be sensitive; obviously they need to manage expectations but when they say there's no cure it sounds like a death sentence. Another thing to note is "no cure" can actually mean "you might need to try a combination of things" e.g. in my case it was maybe 3 or 4 things. It is definitely not easy because of this - the patient has to do a lot of the legwork in getting better!! I'm glad you've seen some improvement and I wish you all the best for the future; I'm sure things can improve.

Also side note I forgot to make in my main post; during my worst point, referring to this forum I told my mum : LOOK at all these people suffering, no one gets better. She pointed out that if people do get better they stop posting and she's absolutely right. I wanted to close this nasty chapter in my life so I've been avoiding posting for a long time but I thought it was important.

pr3ston

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Post  mary jane on Fri Feb 01, 2019 1:33 pm

I am so happy you are feeling better!!! thank you for sharing
mary jane
mary jane

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