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
Just got diagnosed after living with VVS for about 3 years (I'm now 20)
2 posters
Page 1 of 1
Just got diagnosed after living with VVS for about 3 years (I'm now 20)
My name is Joy. The pain started roughly 3 years ago (no trigger to speak of, the only thing I can think might have helped start it is leaving in a tampon too long), and I kinda just tried to ignore it because my family doesn't have health insurance and my mom thinks doctors are the devil (yeah, she's crazy). I just stopped using tampons and tried to forget about it/hope it would go away on it's own. I wasn't what you'd call sexually active, so it was kinda easy to push it to the back of my mind. Today, I'm still a virgin (saving it for my husband) but I have since indulged in certain pleasures, or at least, tried to. My VVS made it impossible to allow any insertion due to the pain, (I would just cut my boyfriend off, tell him I wasn't comfortable with it, etc). I recently (by recent I mean like April of this year) became fed up, (what's a girl gotta do to insert a goddamn tampon without pain?!) and saved up for a gyno appointment. Ended up seeing a nurse practitioner because the gyno injured herself or something. This bitch looked up in me, poked and prodded, watched me writhe in pain, and then looked me in the face and said, "There's nothing wrong with you, your vagina just isn't ready for insertion. I'm sure this will go away once you start having intercourse."
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum
joyj0yjoy- Posts : 1
Join date : 2015-07-31
Re: Just got diagnosed after living with VVS for about 3 years (I'm now 20)
Hi Joy,
I know how you feel. I went through this for a couple of years, went to a lot of doctors (even in another state), tried a bunch of medications and spent a lot of money. The only thing that really cured me was surgery followed by physical therapy. But of course different things work for different people so you have to try everything else first.
As for the insurance, I had the same problem. All insurance companies I applied for would´t cover pre-existing conditions. So I found this government insurance called PCIP (Pre-existing Condition Insurance Plan). It was basically an insurance plan that covered anything. But I believe this was only available until 2014 due to the healthcare reform. The good thing is that now if you can get insurance through an employer they cannot leave out pre-existing conditions. The shitty part is that private insurance plans don't have to follow the same rule. But anyway, if you can get it through your job or maybe your parents' job then you would have that covered. It is expensive but totally worth it if you end up having surgery.
Well, I hope you find what works for you!
I know how you feel. I went through this for a couple of years, went to a lot of doctors (even in another state), tried a bunch of medications and spent a lot of money. The only thing that really cured me was surgery followed by physical therapy. But of course different things work for different people so you have to try everything else first.
As for the insurance, I had the same problem. All insurance companies I applied for would´t cover pre-existing conditions. So I found this government insurance called PCIP (Pre-existing Condition Insurance Plan). It was basically an insurance plan that covered anything. But I believe this was only available until 2014 due to the healthcare reform. The good thing is that now if you can get insurance through an employer they cannot leave out pre-existing conditions. The shitty part is that private insurance plans don't have to follow the same rule. But anyway, if you can get it through your job or maybe your parents' job then you would have that covered. It is expensive but totally worth it if you end up having surgery.
Well, I hope you find what works for you!
joyj0yjoy wrote:My name is Joy. The pain started roughly 3 years ago (no trigger to speak of, the only thing I can think might have helped start it is leaving in a tampon too long), and I kinda just tried to ignore it because my family doesn't have health insurance and my mom thinks doctors are the devil (yeah, she's crazy). I just stopped using tampons and tried to forget about it/hope it would go away on it's own. I wasn't what you'd call sexually active, so it was kinda easy to push it to the back of my mind. Today, I'm still a virgin (saving it for my husband) but I have since indulged in certain pleasures, or at least, tried to. My VVS made it impossible to allow any insertion due to the pain, (I would just cut my boyfriend off, tell him I wasn't comfortable with it, etc). I recently (by recent I mean like April of this year) became fed up, (what's a girl gotta do to insert a goddamn tampon without pain?!) and saved up for a gyno appointment. Ended up seeing a nurse practitioner because the gyno injured herself or something. This bitch looked up in me, poked and prodded, watched me writhe in pain, and then looked me in the face and said, "There's nothing wrong with you, your vagina just isn't ready for insertion. I'm sure this will go away once you start having intercourse."
I went back out to my car and broke down sobbing (I'm not a cryer). I felt so helpless. "What's wrong with me??" "Do I have to live with this?" "Is it so much to ask to enjoy foreplay as a virgin?!" It was awful. And I obviously told no one about it because it'd be embarrassing as hell - "Yeah, my vagina hurts upon insertion and I waited years to get it checked, and guess what, it's actually all in my head" NOPE. So I booked an appointment elsewhere ("Fuck that bitch, she's wrong, I need help" I thought). $277 later, (will probably be billed for more due to the diagnosis) I see an (ACTUAL!!) gyno this time, but she starts saying the same shit as the other lady, like, "Try spreading your legs really wide when inserting a tampon" and "maybe use lube" and "try stretching it out with a vibrator". Thankfully, she felt around enough to actually feel the inflammation and was like, "If you wait for Dr. Such-n-Such to get out of his C-section, he can probably give you better answers" so I was like, "Of course I'll fucking wait if it'll get me closer to some answers" so I wait and he comes and checks me out for like 60 seconds and says, "Describe the pain" and I say "Burning" and he said "Yup, I know this." and he sits me up and explains I have VVS, how they don't know what causes it, and there isn't a cure, but some treatments can help, though are a little spotty, and worst case scenario is having surgery. I was so RELIEVED to have an answer, a name, the makings of a solution. Not knowing, and feeling like you're crazy, is the worst part.
He prescribed a low oxalate diet, synalar (ointment) on area twice a day for 2 weeks, once a day for 2 more weeks, every other day on the 5th week and twice during the 6th week, plus citracal 2-3 pills daily for the same amount of weeks, then a follow-up appointment 8 weeks from now. I'm currently waiting on my pharmacy to get my drugs in, they say they'll be ready tomorrow. So that's when I'll start them. I am hopeful. The biggest worry is money. (It's over $150 for these drugs!!) I work 2 part-time jobs, one $10 an hour (about 20 hours a week) and the other $8.25 an hour (about 20 hours also). My health is important to me, GETTING BETTER is important to me! It's worth whatever it takes, but I don't want to go into debt over this, and health insurance seems like such a crazy expense for a plan that may not cover my pre-existing issue.
Thank you for reading, it feels good to lay it all out like that. I will probably tell my bestfriend and roomates, now that I know I'm not crazy. If you have any information/advice about the drugs I'll be starting or the diet or about the insurance situation, please share!
So glad I found this forum
Cami90- Posts : 10
Join date : 2012-10-30
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