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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
vestibulectomy
+2
tandaschroeder
Alana3
6 posters
Page 4 of 4
Page 4 of 4 • 1, 2, 3, 4
Re: vestibulectomy
I think it's more stitch pulling it feels kinda weird idk how to describe it. And every time I get pee and it gets in it burns any suggestions on how to stop that or when it will stop? Did you have it? And when I stop using those muscles after potty break it's like a dull ache. Sorry I'm probably flipping over nothing but wanting to make sure.
Alana3- Posts : 1093
Join date : 2012-09-25
Re: vestibulectomy
I don't remember if that happened to me or not, but I'd say pour water on yourself while you're peeing. Like some warm water. It should help keep the urine out of your stitches. I'd say that's normal though. Don't worry about too much. That muscle ache feeling is normal. It should last too long though. Until you get the surgery you never realize how many different movements are linked to that area to make your muscles react that way.
jen007- Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A
Re: vestibulectomy
True and what about regular burning/itching all the time? Is that normal too? It's where he took everything off so I guess it's my stitches that are burning and itching constantly? I mean I guess it makes sense too I just don't want to have gone thru this for no reason it's freaking annoying so now I have muscle pain and an itchy burny feeling. Not having fun
Alana3- Posts : 1093
Join date : 2012-09-25
Re: vestibulectomy
The itching is normal. I don't remember having a burning feeling though, but like I said everyones recovery is different. The stitches are probably just rubbing you the wrong way. Once you start soaking that should go away. Everything you're feeling is normal. Don't freak yourself out! And don't question the surgery. I don't think you would've done it unless you were 100% sure about it. It will be worth it! Don't stress too much about every new pain. I was freaking out through out my entire recovery for nothing. You'll develop different feelings down there over the next few weeks, it's all normal! Don't stress, I'm sure you're healing just fine
jen007- Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A
Re: vestibulectomy
I know, I know, but you just need to stay positive
jen007- Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A
vestibulectomy
Alana and Jen,
Don't stop posting your progress notes. I feel like someone turned the TV off in the middle of a movie! I really am interested in both of your progress at these different stages.
I have had vulvar vestibulitis for 40 years. I'm 53 now, didn't marry until 43, and the sex issues helped bring the marriage to an end. I figure I'll be alone the rest of my life because any dating would be leading the person on. I'm not a sex outside of marriage person, and I can't imagine anyone being interested in someone who will never be able to have sex.
I diagnosed myself, and my gyn didn't believe me. Then I moved to Louisville and found a doctor who specialized in treatment. Did all the drugs, creams, compounded ointments, vulvar injections, lidocaine, PT, and counseling. Nothing worked. Well, the gaba and amitriptyline dulled it somewhat, but made me so out of it I couldn't function at work. That Dr. did not do surgeries so I quit trying. Then I was divorced, so it didn't matter anymore. Contemplating surgery no longer mattered, plus I'd read that it doesn't work for everyone and had made some people worse. So why bother?
Now I'm alone and wonder if I should reconsider surgery. But now I am on disability and no way I could ever pay $25,000, or even $5000. Don't even know if there's an experienced surgeon in the Pittsburgh/Cleveland area.
Soooo...I am really interested in hearing your progress at the different stages. I realize, too, that you both are much younger than me and would definitely heal faster and better (I am post menopausal and have fibromyalgia). I am terribly afraid that my condition would be made worse. But still, I would like to hear how you are doing and if sex is possible.
Hope all is going great!
Sharon
Don't stop posting your progress notes. I feel like someone turned the TV off in the middle of a movie! I really am interested in both of your progress at these different stages.
I have had vulvar vestibulitis for 40 years. I'm 53 now, didn't marry until 43, and the sex issues helped bring the marriage to an end. I figure I'll be alone the rest of my life because any dating would be leading the person on. I'm not a sex outside of marriage person, and I can't imagine anyone being interested in someone who will never be able to have sex.
I diagnosed myself, and my gyn didn't believe me. Then I moved to Louisville and found a doctor who specialized in treatment. Did all the drugs, creams, compounded ointments, vulvar injections, lidocaine, PT, and counseling. Nothing worked. Well, the gaba and amitriptyline dulled it somewhat, but made me so out of it I couldn't function at work. That Dr. did not do surgeries so I quit trying. Then I was divorced, so it didn't matter anymore. Contemplating surgery no longer mattered, plus I'd read that it doesn't work for everyone and had made some people worse. So why bother?
Now I'm alone and wonder if I should reconsider surgery. But now I am on disability and no way I could ever pay $25,000, or even $5000. Don't even know if there's an experienced surgeon in the Pittsburgh/Cleveland area.
Soooo...I am really interested in hearing your progress at the different stages. I realize, too, that you both are much younger than me and would definitely heal faster and better (I am post menopausal and have fibromyalgia). I am terribly afraid that my condition would be made worse. But still, I would like to hear how you are doing and if sex is possible.
Hope all is going great!
Sharon
Last edited by dueywag on Thu Jan 10, 2013 5:00 am; edited 1 time in total (Reason for editing : added comment)
dueywag- Posts : 4
Join date : 2013-01-10
Re: vestibulectomy
Hi Sharon!
Sorry for the lack of posting! It's been about 6 months since I had the full vestibulectomy and I think I'm doing pretty well! I'm about 95-98% pain free at this point. I was finally able to have sex after about 4 months of healing. It's not good sex, but I'm just happy I could finally consummate my relationship. I only say it's not good because it's still new to the both of us and I'm still healing. If I don't dilate sex doesn't happen. I'm starting to consider trying PT sometime during the summer. I'm a full time college student so it's hard for me to do anything that doesn't involve school during the semester. My muscles are extremely tight and I think that's why I'm having sex issues. I'm not able to "finish" during sex sadly, but I'm still very hopeful that with time and future PT I will be good to go!
I had my surgery done by Dr. Andrew Goldstein in NYC. He's only on the east cost I think, but maybe you could contact his office and see if they can direct you to a specialist in your area that knows about surgery. You could also join the NVA and they will tell you where you can find a surgeon in your area. I think it costs $45 every year. The money goes towards research in this area.
The surgery costs $9,000. Usually this surgery is not covered by insurance. It's usually out of network. I have medical insurance that accepts out of network procedures if there is no one else in network that can do the surgery. I only got maybe $1200 or $2000 back from insurance. I'm now in the process of appealing it to try and get more money out of it if I can. It's so expensive, but in my mind it's worth it. It will improve your life in so many ways. I know you said you're older, but I don't think It matters if you're 20 or 60 years old. You deserve to be happy and if this could help you and you could get the money for it I'd suggest looking into it.
Btw I always check the fourm almost everyday. I'll try to just write an entry more often than not!
Talk to you soon!
-Jen
Sorry for the lack of posting! It's been about 6 months since I had the full vestibulectomy and I think I'm doing pretty well! I'm about 95-98% pain free at this point. I was finally able to have sex after about 4 months of healing. It's not good sex, but I'm just happy I could finally consummate my relationship. I only say it's not good because it's still new to the both of us and I'm still healing. If I don't dilate sex doesn't happen. I'm starting to consider trying PT sometime during the summer. I'm a full time college student so it's hard for me to do anything that doesn't involve school during the semester. My muscles are extremely tight and I think that's why I'm having sex issues. I'm not able to "finish" during sex sadly, but I'm still very hopeful that with time and future PT I will be good to go!
I had my surgery done by Dr. Andrew Goldstein in NYC. He's only on the east cost I think, but maybe you could contact his office and see if they can direct you to a specialist in your area that knows about surgery. You could also join the NVA and they will tell you where you can find a surgeon in your area. I think it costs $45 every year. The money goes towards research in this area.
The surgery costs $9,000. Usually this surgery is not covered by insurance. It's usually out of network. I have medical insurance that accepts out of network procedures if there is no one else in network that can do the surgery. I only got maybe $1200 or $2000 back from insurance. I'm now in the process of appealing it to try and get more money out of it if I can. It's so expensive, but in my mind it's worth it. It will improve your life in so many ways. I know you said you're older, but I don't think It matters if you're 20 or 60 years old. You deserve to be happy and if this could help you and you could get the money for it I'd suggest looking into it.
Btw I always check the fourm almost everyday. I'll try to just write an entry more often than not!
Talk to you soon!
-Jen
jen007- Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A
vestibulectomy
Thanks Jen!
I was a member of NVA for several years back when there was no other source of information out there on this condition. But there is so little progress, it seems, that after a year or 2, it was a waste of $45. I had already tried everything I read about except for the pudendal nerve block and surgery. That's where I read the horror stories of so many women getting worse after the procedures that I decided against pursuing surgery at that time (maybe 8 years ago.)
It's frustrating and maddening that womens' issues aren't covered by insurance, while mens' little problems of erectile dysfunction are fully funded, you know? I mean, this is NOT just a sex thing. It's a PAIN and quality of life issue, as well as a relational issue. But if it was a man who couldn't have sex because it felt like razor blades dipped in tabasco sauce, you can guarantee it would be covered!
That was a fantasy of mine to try to get my selfish, uncompassionate, abusive ex-husband to understand that I wasn't punishing him by not wanting or initiating sex. It hurt, but he didn't care. I wanted to take a jar of jalepeno pepper juice and dip his jewels in it and say "let me do that to you every day, after rubbing it with sand paper, and see if you enjoy it and want to initiate it." I think that is the only thing that would have even come close to getting him to even begin to understand why I hated him after a couple years of his forcing me to have sex. He didn't realize that I was going through all these treatments (and spending half my life having painful and humiliating things done in doctors' offices) so that he could have sex, knowing that I wasn't going to get anything out of it except pain. In the end, it wasn't enough for him.
Since then, I've only gone out with 1 guy, but ended it because I figured I was leading him on. So I figure, unless I can find a way to only meet impotent men, I have no chance of ever having a meaningful relationship.
Ok, I'll stop the pity party! Thanks for letting me vent
sharon
I was a member of NVA for several years back when there was no other source of information out there on this condition. But there is so little progress, it seems, that after a year or 2, it was a waste of $45. I had already tried everything I read about except for the pudendal nerve block and surgery. That's where I read the horror stories of so many women getting worse after the procedures that I decided against pursuing surgery at that time (maybe 8 years ago.)
It's frustrating and maddening that womens' issues aren't covered by insurance, while mens' little problems of erectile dysfunction are fully funded, you know? I mean, this is NOT just a sex thing. It's a PAIN and quality of life issue, as well as a relational issue. But if it was a man who couldn't have sex because it felt like razor blades dipped in tabasco sauce, you can guarantee it would be covered!
That was a fantasy of mine to try to get my selfish, uncompassionate, abusive ex-husband to understand that I wasn't punishing him by not wanting or initiating sex. It hurt, but he didn't care. I wanted to take a jar of jalepeno pepper juice and dip his jewels in it and say "let me do that to you every day, after rubbing it with sand paper, and see if you enjoy it and want to initiate it." I think that is the only thing that would have even come close to getting him to even begin to understand why I hated him after a couple years of his forcing me to have sex. He didn't realize that I was going through all these treatments (and spending half my life having painful and humiliating things done in doctors' offices) so that he could have sex, knowing that I wasn't going to get anything out of it except pain. In the end, it wasn't enough for him.
Since then, I've only gone out with 1 guy, but ended it because I figured I was leading him on. So I figure, unless I can find a way to only meet impotent men, I have no chance of ever having a meaningful relationship.
Ok, I'll stop the pity party! Thanks for letting me vent
sharon
dueywag- Posts : 4
Join date : 2013-01-10
Re: vestibulectomy
Hey,
I tried to respond earlier but my phone wouldn't let me. I saw you were from Louisville, I lived in Lexington for 4 years! I got my surgery fully covered (except for the down payments and such). My surgery remains to be seen, I still have stitches in 5 weeks later and it's still pulling and I still have pain, but Jen (and my doc) reassured me that its ok. I didn't want to post because it's been an emotional rollercoaster and not all days are pleasant, but I think once the stitches come out I'll have a little relief (I Hope!!)
I can't even tell you how many horrible things I've had done to me before I found a doctor who was able to help. I live in Florida and the doc I see is thankfully half an hour away from me in West Palm Beach. He's awesome. As for the surgery, I thought go for it what do I have to lose at this point? Most women that I've talked to have been significantly better after the surgery, I have no idea if that's because of age or what, but of a study only 7% were dissastisfied I liked those odds, so why not? I'm not going to lie, it's a really rough surgery to recover from and emotional too, but it wasn't as bad as I thought it would be. Especially going thru what I have already been thru. That and it made sex a cakewalk- seriously! I check this everyday too so if you have any more questions- feel free to ask but keep in mind I'm 5 weeks into my surgery and am still in the "recovery" phase. UGH!
I tried to respond earlier but my phone wouldn't let me. I saw you were from Louisville, I lived in Lexington for 4 years! I got my surgery fully covered (except for the down payments and such). My surgery remains to be seen, I still have stitches in 5 weeks later and it's still pulling and I still have pain, but Jen (and my doc) reassured me that its ok. I didn't want to post because it's been an emotional rollercoaster and not all days are pleasant, but I think once the stitches come out I'll have a little relief (I Hope!!)
I can't even tell you how many horrible things I've had done to me before I found a doctor who was able to help. I live in Florida and the doc I see is thankfully half an hour away from me in West Palm Beach. He's awesome. As for the surgery, I thought go for it what do I have to lose at this point? Most women that I've talked to have been significantly better after the surgery, I have no idea if that's because of age or what, but of a study only 7% were dissastisfied I liked those odds, so why not? I'm not going to lie, it's a really rough surgery to recover from and emotional too, but it wasn't as bad as I thought it would be. Especially going thru what I have already been thru. That and it made sex a cakewalk- seriously! I check this everyday too so if you have any more questions- feel free to ask but keep in mind I'm 5 weeks into my surgery and am still in the "recovery" phase. UGH!
Alana3- Posts : 1093
Join date : 2012-09-25
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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