Log in
Similar topics
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
Looking for community and maybe some words of encouragemenr
4 posters
Page 1 of 1
Looking for community and maybe some words of encouragemenr
Hi there!
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?
Thanks,
Sophie
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?
Thanks,
Sophie
sophstew24- Posts : 1
Join date : 2017-07-12
Re: Looking for community and maybe some words of encouragemenr
I haven't had surgery but do have experience of needing to use dilators and PT. Time and patience is the key but they definitely helped me. If you want to read my history you can do so here to avoid me retyping: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement
It's great that you have a supportive boyfriend. My husband has been patient throughout and that's been invaluable to me. Certainly try to stay positive that you can achieve a normal sex life. Don't try to rush the dilator exercises/PT. Listen to your body and also it can help to record your progress in a diary so you can look back and see how you're doing. Good luck.
It's great that you have a supportive boyfriend. My husband has been patient throughout and that's been invaluable to me. Certainly try to stay positive that you can achieve a normal sex life. Don't try to rush the dilator exercises/PT. Listen to your body and also it can help to record your progress in a diary so you can look back and see how you're doing. Good luck.
PainBlogger- Posts : 219
Join date : 2015-07-27
Re: Looking for community and maybe some words of encouragemenr
Hi Sophie,
Just wondering what your recovery was like after the op. Did you still have flares of pain for a few days and so forth? How did it feel?
Just wondering what your recovery was like after the op. Did you still have flares of pain for a few days and so forth? How did it feel?
sj17- Posts : 32
Join date : 2017-05-06
Re: Looking for community and maybe some words of encouragemenr
sophstew24 wrote:Hi there!
I just joined this morning and wanted to share my journey. I am 24 years old and have had vulvodynia for about 2 years now. I was put on 80mg of amytryptiline and pelvic floor therapy which did reduce the pain, but a full vestibulectomy was recommended. This past December, I had Dr. Wang in Greenville, SC perform the surgery so I guess that puts me 6 months out. I am now down to 20mg of the pills and back to PT. I have also started using dilators as well. I am still having pain although much less, however I was hoping for a 100% recovery! I have been told by my new doctor that I have no scar tissue and the only portion of damage that still remains is near the opening of my vagina. Pain scores of the rest of the skin have been cut in half, which is great news. She tells me not to lose hope, as I can be healing for upwards of a year with how much was taken and the area of the surgery. I was just hoping to hear from anyone whose story sounds similar to mine? I have a wonderfully supportive boyfriend who isn't concerned at all about sex, but eventually I would love to achieve a somewhat normal sex life. Any advice?? Or maybe other things I can try?
Thanks,
Sophie
Hi Sophie, and welcome! I am the same age as you but from the UK.. I have also suffered for years. Have tried amitryptline too though I gave up with it too soon to know whether it would've been helpful to me. I had some weird side effects on it that I couldn't persevere with like blurred vision (but nobody reading this and be discouraged by that as one person may have side effects on a medication that someone else doesn't experience at all so please don't rule anything out!!) Well done on going ahead with the surgery, it sounds as if it has gone well! Great to hear. Even if the pain is not fully gone but greatly reduced that is still a victory. And you are still in early days, healing can take time. I would also love to achieve a somewhat normal sex life too! My best advice would just be to not put pressure on yourself. If you feel ready to give it a go, try and relax and not put too much expectation on it, just see what happens. Have a couple drinks beforehand if that may ease any anxiety and make sure you are - sorry haha - well lubricated! I have used a good gel called Sylk which helps if you need extra. I think the dilators and seeing the PT hopefully should help you to relax the muscles also. I'm still on my own journey and quite inexperienced in all this when it comes to the medical side of it all.... But just do what feels right for you
tinkerbelle2- Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.
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