Log in
Latest topics
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
Pasha electrode
3 posters
Page 1 of 1
Pasha electrode
Did anyone know something about this treatment outside of Germany? I think Vulvodynia pain could be comparable to this kind of neuropathic pain.
http://www.wi-muenchen.de/content/aktuelles/aktuelles.php?id=32
Husband- Posts : 29
Join date : 2010-08-30
Age : 57
Location : Germany
Re: Pasha electrode
I live in the US. i read your post. i have never heard of this treatment. however, i am having something similar implanted into my spine this summer. it's called a neurotransmitter (aka spinal cord stimulator). the docs will implant to wires (leads) in my spine w/ a battery connected to it. I will have a remote control to control the vibrations to the nerves. the vibrations are supposed to interrupt the pain message to the brain. i will have a one week trial (surgery, but battery will be on outside). if the surgery is successful then i will have the wires and the battery permanently placed under my skin. the treatment you found sounds similar.
jules- Posts : 225
Join date : 2010-03-17
Re: Pasha electrode
Hi Jules,
yes I think this is the same basic. My wife is having the same type of problems like you. After the Botox did not work, she only took Ami but it did not work during the last months too. Actually she is trying Lyrica and Cymbalta but this seems to be a really bad flare up.
The difference to the permanent therapy you are going to get is that the nerves will be finally destroyed. This sounds good, but not if other functions will be harmed too. However, we did not contact this clinic so fare. But please keep me informed about your experiences.
yes I think this is the same basic. My wife is having the same type of problems like you. After the Botox did not work, she only took Ami but it did not work during the last months too. Actually she is trying Lyrica and Cymbalta but this seems to be a really bad flare up.
The difference to the permanent therapy you are going to get is that the nerves will be finally destroyed. This sounds good, but not if other functions will be harmed too. However, we did not contact this clinic so fare. But please keep me informed about your experiences.
Husband- Posts : 29
Join date : 2010-08-30
Age : 57
Location : Germany
Re: Pasha electrode
Sounds like a possibility as for some this all started with infection. The idea that the infection stays within the nervous system is interesting.
Jules please post when you get this treatment. Thanks x
Jules please post when you get this treatment. Thanks x
Aussie- Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia
Re: Pasha electrode
I am not a doctor, but I think Herpes zoster virus infection as reason for this neuralgic pain disease (and what they treat with this method up to now) can be easily identified and is not a part of Vulvodynia related pain. However the result, strong pain signals due to a structural change of nerves are obviously similar. They claim a 70% pain reduction by this method but I think they never have done this for Vulvodynia patients. I have to leave this decision to my wife, but I think we will get in contact with this clinic and I will keep you informed.
Husband- Posts : 29
Join date : 2010-08-30
Age : 57
Location : Germany
Re: Pasha electrode
husband,
question: If your wife proceeds with this treatment, would her nerves be permanently destroyed? My surgery will not destroy the nerves. However, in the past, I had four different nerve blocks. Two were in the Pudendal Nerve. I was told that if the blocks took away the pain, the docs would be able to perform a surgery that involves the cutting (laser) of the Pudendal nerves. I am not a candidate for that surgery because it wouldn't help me. I had no relief from the nerve blocks.
I will keep you all updated on my Nuerotransmitter surgery. I am waiting to hear from the clinic. My health insurance needs to authorize it first.
question: If your wife proceeds with this treatment, would her nerves be permanently destroyed? My surgery will not destroy the nerves. However, in the past, I had four different nerve blocks. Two were in the Pudendal Nerve. I was told that if the blocks took away the pain, the docs would be able to perform a surgery that involves the cutting (laser) of the Pudendal nerves. I am not a candidate for that surgery because it wouldn't help me. I had no relief from the nerve blocks.
I will keep you all updated on my Nuerotransmitter surgery. I am waiting to hear from the clinic. My health insurance needs to authorize it first.
jules- Posts : 225
Join date : 2010-03-17
Re: Pasha electrode
They try to stimulate the nerves in order to define the right ones. After this there will be a permanent destroying.
My wife changed the medication. At the moment with Ami and Lyrica, she is o.k.. However the electrode is still an option.
Good luck for your surgery.
My wife changed the medication. At the moment with Ami and Lyrica, she is o.k.. However the electrode is still an option.
Good luck for your surgery.
Husband- Posts : 29
Join date : 2010-08-30
Age : 57
Location : Germany
Re: Pasha electrode
I'm on Lyrica too. i am going to be increasing it from 100-300 over time. i'm on two other meds as well,. i have never tried Ami. my surgery will probably be in mid August. fingers crossed. say hello and good luck to your wife.
jules- Posts : 225
Join date : 2010-03-17
Re: Pasha electrode
Hi Jules,
have you done it and how is the result?
Best regards
have you done it and how is the result?
Best regards
Husband- Posts : 29
Join date : 2010-08-30
Age : 57
Location : Germany
Page 1 of 1
Permissions in this forum:
You cannot reply to topics in this forum
|
|
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