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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 …
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- …
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
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 …
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 …
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 …
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 …
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 Here
3 posters
Page 1 of 1
New Member Here
Hello everyone,
Finally after about 15 years of suffering from this condition I have found a support forum.
As far as my story goes when I suffered the symptoms of the condition it didn't even have a name and the doctors knew nothing about it, hence I had years and years of tests, swabs, you name it, I went round thinking I must have the most horrendous infection.
I have to say for much of those years it was something that I put up with and learned to live with because nobody knew about it back then but not now, after a few bad attacks I decided enough was enough and having read the book by Howard I Glazier I realized that I need to be relentless in my quest for finding relief from the acute, burning and raw pain I feel and I also had the realization that I was not alone. I am having a particularly bad attack at the moment and feel drugged up to the eyeballs and a bit depressed as the pain is relentless which is why it's nice to actually write it down here.
I have since had a skin biopsy which was the most painful thing I have been through and completely knocked me off my feet for a wee quite literally but I needed to do that for me to be referred to a specialist.
I have been on various drugs and at the moment have just started a course of Pregabalin (75mg), strangely enough this has coincided with this very bad attack and I ended up at the doctors in tears because sometimes I just don't feel I can function day to day with the pain and now the drugs I'm taking. The doctor has prescribed me a mixture of Ibuprofen and Cocodamal to try and ease the pain, she is also going to talk to my specialist about a pain clinic and pelvic exercise, I may even increase the dose of Pregabalin.
So I continue on my road to try and find some relief from this condition, I just want to add that most of the time I just feel a mild burning but this attack has made me remember how bad this condition can get at times, I guess the other frustrating thing is that I don't know what has caused it.
Anyway just wanted to tell you a bit about my story and I'm looking forward having a look around the site getting and hopefully giving some helpful advise.
SB
Finally after about 15 years of suffering from this condition I have found a support forum.
As far as my story goes when I suffered the symptoms of the condition it didn't even have a name and the doctors knew nothing about it, hence I had years and years of tests, swabs, you name it, I went round thinking I must have the most horrendous infection.
I have to say for much of those years it was something that I put up with and learned to live with because nobody knew about it back then but not now, after a few bad attacks I decided enough was enough and having read the book by Howard I Glazier I realized that I need to be relentless in my quest for finding relief from the acute, burning and raw pain I feel and I also had the realization that I was not alone. I am having a particularly bad attack at the moment and feel drugged up to the eyeballs and a bit depressed as the pain is relentless which is why it's nice to actually write it down here.
I have since had a skin biopsy which was the most painful thing I have been through and completely knocked me off my feet for a wee quite literally but I needed to do that for me to be referred to a specialist.
I have been on various drugs and at the moment have just started a course of Pregabalin (75mg), strangely enough this has coincided with this very bad attack and I ended up at the doctors in tears because sometimes I just don't feel I can function day to day with the pain and now the drugs I'm taking. The doctor has prescribed me a mixture of Ibuprofen and Cocodamal to try and ease the pain, she is also going to talk to my specialist about a pain clinic and pelvic exercise, I may even increase the dose of Pregabalin.
So I continue on my road to try and find some relief from this condition, I just want to add that most of the time I just feel a mild burning but this attack has made me remember how bad this condition can get at times, I guess the other frustrating thing is that I don't know what has caused it.
Anyway just wanted to tell you a bit about my story and I'm looking forward having a look around the site getting and hopefully giving some helpful advise.
SB
Shortbird- Posts : 5
Join date : 2011-09-15
Re: New Member Here
Hi and welcome, you're in good company here! I notice you don't mention having your pelvic floor checked out so that's a good thing to do next, in my opinion it's something every woman with V should have done. High resting tones and clenching the muscles through the day are things we V sufferers often find.
I'm on Pregabalin and I know a few others here are too, I'm finding it helps a bit for a while then stops working and I need to up the dose then it does the same thing again and stops after a period of time so I'm not convinced it's going to be the answer for me. I'm also on Ami which didn't help much at all and I stopped the dose increases at 50mg because I was sure it would be pointless to keep adding more. I have seen a few women online say Pregabalin made their V worse while they were on it but I don't know why so if it doesn't calm down it might be an idea to swap it for something else.
Anyway, have a look around and feel free to chat to us about anything.
I'm on Pregabalin and I know a few others here are too, I'm finding it helps a bit for a while then stops working and I need to up the dose then it does the same thing again and stops after a period of time so I'm not convinced it's going to be the answer for me. I'm also on Ami which didn't help much at all and I stopped the dose increases at 50mg because I was sure it would be pointless to keep adding more. I have seen a few women online say Pregabalin made their V worse while they were on it but I don't know why so if it doesn't calm down it might be an idea to swap it for something else.
Anyway, have a look around and feel free to chat to us about anything.
Sarah001- Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK
Re: New Member Here
Thanks Sarah, so nice to know there is somewhere to come for support and I actually feel much better today
Shortbird- Posts : 5
Join date : 2011-09-15
Re: New Member Here
Is Pregab Lyrica? If so Lyrica made me flare like crazy. (bladder and v) the week after I got off it pain shot down a few pegs, I now take no medication for v, I hated that drugged feeling and it was doing nothing for me for the pain.
Claire
Claire
Aussie- Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia
Re: New Member Here
Hi Aussie,
Funny you should mention that because my pain has been really bad since I have been on Pregablin, wonder if I should stop taking it or at least maybe call the specialist on Monday
Funny you should mention that because my pain has been really bad since I have been on Pregablin, wonder if I should stop taking it or at least maybe call the specialist on Monday
Shortbird- Posts : 5
Join date : 2011-09-15
Re: New Member Here
I weaned off over a week. My Neurologist said that Lyrica would make my bladder symptoms worse but eveyone eles said the opposite. I wish I had listened to him in the first place....
Aussie- Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia
Re: New Member Here
Hi,
I am waiting for my specialist to call me back today (still waiting)...I need to talk to her about this and also if she can put me forward for the pain clinic and also the pelvic floor, I have just been thinking that in all this time I have never been referred for any of these.
My pain is slightly better today, I went and bought a water spray for after I have gone to the loo which is lovely, takes the burning off for a while, I also took advise from another poster who said to imagine fresh blood cleansing the nerve endings (sorry can't remember who it was) but it actually does ease things a little.
I am also very nervous as I am going on a date on Saturday for the first time in years, my brain keeps telling me that I must be an idiot for even contemplating this with all my issues but at the same time I don't want to stop living my life, I guess all these things go through your mind which doesn't help if I'm honest.
I am waiting for my specialist to call me back today (still waiting)...I need to talk to her about this and also if she can put me forward for the pain clinic and also the pelvic floor, I have just been thinking that in all this time I have never been referred for any of these.
My pain is slightly better today, I went and bought a water spray for after I have gone to the loo which is lovely, takes the burning off for a while, I also took advise from another poster who said to imagine fresh blood cleansing the nerve endings (sorry can't remember who it was) but it actually does ease things a little.
I am also very nervous as I am going on a date on Saturday for the first time in years, my brain keeps telling me that I must be an idiot for even contemplating this with all my issues but at the same time I don't want to stop living my life, I guess all these things go through your mind which doesn't help if I'm honest.
Shortbird- Posts : 5
Join date : 2011-09-15
Re: New Member Here
Glad to hear the water bottle is helping, just be careful not to overwash the area though, I found rinsing after every pee was too much and made me even more sore so I just rinse after a few now.
As for the date, it's only the first one so no reason to wonder where it's heading, some of the girls on here have started new relationships despite having V but I have to admit I'd be like you and wondering if it was worth the effort. However saying that I don't think all men would run a mile about it (unlike my ex) so it's probably worth at least going on the one date, let us know how you get on!
As for the date, it's only the first one so no reason to wonder where it's heading, some of the girls on here have started new relationships despite having V but I have to admit I'd be like you and wondering if it was worth the effort. However saying that I don't think all men would run a mile about it (unlike my ex) so it's probably worth at least going on the one date, let us know how you get on!
Sarah001- Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK
Re: New Member Here
Update
Well there is good news and bad news.
The bad news is my date cancelled on me which was a kind of a relief in a way and I noticed that my pain did get better once it was cancelled, maybe there is something in that.
The good news is I spoke to my specialist who has now written to me and has referred me to the pelvic pain clinic and also for pelvic floor physiotherapy, I spoke to her about my concerns about the Pregabalin but she advised that I need to be on it for at least 6 months, after that she has recommended SSRI Fluoxetine, has anyone tried this and has it improved things.
I actually feel quite positive now that things are finally getting sorted
Well there is good news and bad news.
The bad news is my date cancelled on me which was a kind of a relief in a way and I noticed that my pain did get better once it was cancelled, maybe there is something in that.
The good news is I spoke to my specialist who has now written to me and has referred me to the pelvic pain clinic and also for pelvic floor physiotherapy, I spoke to her about my concerns about the Pregabalin but she advised that I need to be on it for at least 6 months, after that she has recommended SSRI Fluoxetine, has anyone tried this and has it improved things.
I actually feel quite positive now that things are finally getting sorted
Shortbird- Posts : 5
Join date : 2011-09-15
Re: New Member Here
You do sound like a clencher if the anxiety about the date was making matters worse! Still at least it's one less thing to have to worry about right now. Good luck with your appointments and let us know how you get on.
Sarah001- Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK
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Fri Oct 23, 2020 12:04 am by ringostarr26
» Please tell me this can get better
Sat Jul 18, 2020 7:38 pm by sammykramer
» By no means cured, but doing much better!
Mon Mar 16, 2020 1:26 pm by tinkerbelle2
» How I cured my Vulvodynia!
Sat Dec 07, 2019 11:54 am by Millie
» 7 months since the diagnosis
Wed Aug 14, 2019 2:38 am by agtoronto
» Gabapentin Gel. or other topical creams
Sat Jun 15, 2019 5:22 pm by mary jane
» IMPORTANT FOR UK SUFFERERS
Sat Jun 15, 2019 5:21 pm by mary jane
» Help New Diagnosis
Sat Jun 15, 2019 5:07 pm by mary jane
» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Tue Jun 11, 2019 12:56 am by VVSSufferer