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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 to all of this
+3
Sarah001
noni
annaCA
7 posters
Page 1 of 1
New to all of this
Hi all,
I have read this board for a bit. My story is so similar to a lot of you. My burning pain started about 9 months ago. I went to various doctors (Urgent care, GYN, dermatologist) and they all looked at me as if I was crazy since they did not see anything abnormal. I swore that I had an STD even though I have never had sex because I have only ever heard of pain down there because of an STD. I had a biopsy which was quite painful and only thing it said was a mild inflammation. I finally found a Pelvic Pain Specialist who diagnosis me almost immediately with V and I think I found a doctor who actually understands what I am going though (who would of thought it would be a male). I am so thankful for the nva.org site for helping me find a specialist who finally diagnosis me with something. He put me on estrogen cream which helped a bit and now trying an estrogen/testosterone compound. I think this cream made the burning worst again, but I have another appointment this month. The burning pain is bad, but the emotional impact of this is far worst. I am happier when around friends, but when I am alone, the pain increases with sadness.
I am looking for a bit of support and I have to say just being able to read posts of this forum has been a lifesaver. I thank all of you for having the courage to share your stories.
Anna
I have read this board for a bit. My story is so similar to a lot of you. My burning pain started about 9 months ago. I went to various doctors (Urgent care, GYN, dermatologist) and they all looked at me as if I was crazy since they did not see anything abnormal. I swore that I had an STD even though I have never had sex because I have only ever heard of pain down there because of an STD. I had a biopsy which was quite painful and only thing it said was a mild inflammation. I finally found a Pelvic Pain Specialist who diagnosis me almost immediately with V and I think I found a doctor who actually understands what I am going though (who would of thought it would be a male). I am so thankful for the nva.org site for helping me find a specialist who finally diagnosis me with something. He put me on estrogen cream which helped a bit and now trying an estrogen/testosterone compound. I think this cream made the burning worst again, but I have another appointment this month. The burning pain is bad, but the emotional impact of this is far worst. I am happier when around friends, but when I am alone, the pain increases with sadness.
I am looking for a bit of support and I have to say just being able to read posts of this forum has been a lifesaver. I thank all of you for having the courage to share your stories.
Anna
annaCA- Posts : 8
Join date : 2011-05-16
Re: New to all of this
Hey Anna,
Im so glad you found this forum. Its a blessing for us V ladies.
My experience is quite similiar to yours. I had in the first months of my Vulvodynia just the most disturbing burning and acid like pain in my vulvar area. I went to regular docs, once even an emergency room, dermatologists...again alot of them made me feel like I was crazy and several implied that I may be a basket case. Finally, a specialist told me that I have neuropathic pain of the vulva. Basically, some sort of nerve irritation which manifested itself as burning, searing, acid like, stinging PAIN.
I am currently on Amitriptyline. Although I am not 100 % ...I am better these days. Still, have to limit myself at times...no bike riding or trousers. Oh well.
I have looked into physio for the pelvic floor muscles...just need to find the time to book an appointment. Quite difficult as I work full-time and barely have time to go for groceries.
There are alot of very knowledgeable ladies on here. I have gained alot from reading their stories and posts. We are the experts.
Never would I have thought a condition like this to exist. But life throws curve balls at you sometimes. Its a matter of coping and self-management for me with my vulvodynia. I am not looking for a cure or easy fixes. Its going to be a long road, but I have come so far when I look back at the pain I was in a couple of months ago.
Anna, if you are on meds make sure to give them time to work and build up in your system. Also, you need to find out what dosage gives you pain relief. The Amitriptyline gave me results at 50mg. So as you can imagine, it wasnt an overnight thing. It took a good couple of months.
So, yeah, this is a journey for us ladies. In so many respects....emotionally, mentally, physically, and spiritually we are being tested to the max.
Anywhoo....welcome.
You are in good company here !
Im so glad you found this forum. Its a blessing for us V ladies.
My experience is quite similiar to yours. I had in the first months of my Vulvodynia just the most disturbing burning and acid like pain in my vulvar area. I went to regular docs, once even an emergency room, dermatologists...again alot of them made me feel like I was crazy and several implied that I may be a basket case. Finally, a specialist told me that I have neuropathic pain of the vulva. Basically, some sort of nerve irritation which manifested itself as burning, searing, acid like, stinging PAIN.
I am currently on Amitriptyline. Although I am not 100 % ...I am better these days. Still, have to limit myself at times...no bike riding or trousers. Oh well.
I have looked into physio for the pelvic floor muscles...just need to find the time to book an appointment. Quite difficult as I work full-time and barely have time to go for groceries.
There are alot of very knowledgeable ladies on here. I have gained alot from reading their stories and posts. We are the experts.
Never would I have thought a condition like this to exist. But life throws curve balls at you sometimes. Its a matter of coping and self-management for me with my vulvodynia. I am not looking for a cure or easy fixes. Its going to be a long road, but I have come so far when I look back at the pain I was in a couple of months ago.
Anna, if you are on meds make sure to give them time to work and build up in your system. Also, you need to find out what dosage gives you pain relief. The Amitriptyline gave me results at 50mg. So as you can imagine, it wasnt an overnight thing. It took a good couple of months.
So, yeah, this is a journey for us ladies. In so many respects....emotionally, mentally, physically, and spiritually we are being tested to the max.
Anywhoo....welcome.
You are in good company here !
noni- Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario
Re: New to all of this
Hi Anna and welcome, has your pelvic pain specialist looked at the pelvic floor muscles? They can be the cause of this or at least a massive contributor.
Sarah001- Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK
Re: New to all of this
Hi Anna and welcome to the forum!
Glad you found a dr who cares..thats a brilliant start. I havent tried hormone creams. Was put on various birth control pills which did nothing and just made me dry so that didnt help
I am on Pregabalin (anticonvulsant) 300mg and also trying biofeedback pelvic floor therapy (currently having to take a break from the biofeedback till I recieve the new sensor) I found good pain relief with both approaches but had a flare up last week and think its either due to the sensor being mental or that fact that I started eating more sugar products again or both who knows!
Deff look into the pelvic floor thing, discuss it with your dr and see what he says
Yes I find the time I am alone I feel the worst..get very anxious and desparing...but we are here for you and understand what you are going through
Thanks for the replies
Hi all,
Thanks so much for all the replies! I haven't talked to my doctor yet about pelvic floor exercises, but I know that is on his list of things to try with me. His theory is you need to find the right combination of medication/PT/natural remedies/diet to help you heal. He says that the same thing does not work for each patient which is quite annoying, but seems to be true with what I read. Hopefully, my appt. next week we will find something to at least start to reduce the pain (I am mainly concerned about getting through finals first ).
Again thanks for the replies. I'm glad I have a place to come and discuss as I feel my friends and family don't quite understand it.
Hugs,
Anna
Thanks so much for all the replies! I haven't talked to my doctor yet about pelvic floor exercises, but I know that is on his list of things to try with me. His theory is you need to find the right combination of medication/PT/natural remedies/diet to help you heal. He says that the same thing does not work for each patient which is quite annoying, but seems to be true with what I read. Hopefully, my appt. next week we will find something to at least start to reduce the pain (I am mainly concerned about getting through finals first ).
Again thanks for the replies. I'm glad I have a place to come and discuss as I feel my friends and family don't quite understand it.
Hugs,
Anna
annaCA- Posts : 8
Join date : 2011-05-16
Re: New to all of this
Hi Anna and welcome!
I'm glad you have found a Dr who at least knows what vulvodynia is - the diagnosis really just means pain in your girl bits but it's better than being treated like a fool. We've all been there!
I have burning pain (generalised unprovoked V.) I also had an increase in pain with moods/stress etc. I've come to understand that lifestyle choices have a huge impact. SO diet modification is big in my world. I went sugar free!!! It's hard to imagine life with sugar in it now. It made a significant difference to my pain every day. I also meditate, try to control stress, have pelvic floor physio, limit coffee (that also made it worse) and alcohol. And I have a therapist to blurt out all my crap to. I try for feel good stuff, it doesn't always work but I want to be in control.
Good luck in your search for answers, we are all to offer support and encouragement xx.
I'm glad you have found a Dr who at least knows what vulvodynia is - the diagnosis really just means pain in your girl bits but it's better than being treated like a fool. We've all been there!
I have burning pain (generalised unprovoked V.) I also had an increase in pain with moods/stress etc. I've come to understand that lifestyle choices have a huge impact. SO diet modification is big in my world. I went sugar free!!! It's hard to imagine life with sugar in it now. It made a significant difference to my pain every day. I also meditate, try to control stress, have pelvic floor physio, limit coffee (that also made it worse) and alcohol. And I have a therapist to blurt out all my crap to. I try for feel good stuff, it doesn't always work but I want to be in control.
Good luck in your search for answers, we are all to offer support and encouragement xx.
Mouse- Posts : 303
Join date : 2010-09-09
Location : New Zealand
Re: New to all of this
Hi Anna,
I thought it would be reassuring for you to know that the most recent research coming out of the US supports starting with hormonal treatments for V and then progressing to other meds like ami or gaba (in addition, as your thoughtful dr. mentions, to lifestyle/PT). This research comes out of the 'When Sex Hurts' book by Dr. Goldstein et al. Do you know if you have generalized vulvodynia or provoked vestibulodynia? Usually hormonal treatments are for provoked v., but no harm trying it for either! When I go back to my gynae I'm going to ask if I can try it too!
Best,
Katie
I thought it would be reassuring for you to know that the most recent research coming out of the US supports starting with hormonal treatments for V and then progressing to other meds like ami or gaba (in addition, as your thoughtful dr. mentions, to lifestyle/PT). This research comes out of the 'When Sex Hurts' book by Dr. Goldstein et al. Do you know if you have generalized vulvodynia or provoked vestibulodynia? Usually hormonal treatments are for provoked v., but no harm trying it for either! When I go back to my gynae I'm going to ask if I can try it too!
Best,
Katie
Zazu- Posts : 64
Join date : 2011-04-05
Location : Canada
Re: New to all of this
I have generalized V so it hurts all the time in random places all over. I have been reading a few other posts and was wondering if you could tell me what a flare-up is?
annaCA- Posts : 8
Join date : 2011-05-16
Re: New to all of this
A flare up for me is when the pain gets really bad. I have provoked V and, potentially, generalized too. What I mean is, penetration feels like burning/searing ripping at the opening but I also have days, usually when I try to wear jeans, when there is just irritation everywhere with some stabbing pain or weird crawling feelings thrown in just for fun. When that happens to me, I call it a flare up. I think it's generalized because it's not at the vestibule only, and it can happen when there's no provoking (i.e. when I wake up and I'm only wearing a t-shirt).
Some ladies seem to have the irritation & pain all the time, so it's like a constant flare up. For others the flare up is just when the pain goes from 2 to 8. It's all individual I guess.
How about you?
Some ladies seem to have the irritation & pain all the time, so it's like a constant flare up. For others the flare up is just when the pain goes from 2 to 8. It's all individual I guess.
How about you?
Zazu- Posts : 64
Join date : 2011-04-05
Location : Canada
Re: New to all of this
Zazu wrote:A flare up for me is when the pain gets really bad. I have provoked V and, potentially, generalized too. What I mean is, penetration feels like burning/searing ripping at the opening but I also have days, usually when I try to wear jeans, when there is just irritation everywhere with some stabbing pain or weird crawling feelings thrown in just for fun. When that happens to me, I call it a flare up. I think it's generalized because it's not at the vestibule only, and it can happen when there's no provoking (i.e. when I wake up and I'm only wearing a t-shirt).
I have this exactly, sometimes if I can manage to avoid wearing any tight fitting clothes for a few days I start feeling better then optimistically try jeans and then get what you describe above, tingly crawling feelings...
itchyandscratchy- Posts : 36
Join date : 2011-04-11
Age : 34
Location : UK
Re: New to all of this
A flare up is when the pain gets really bad and intense
For instance I can have moderate or low pain days and then wham! serious pain that makes me wana just cry and retire to bed...
The only thing I can say to myself during these days (having flare up day today) is that it will pass and ease up..
Keep positive..I know it can be so difficult but try and remember you can vent on here!
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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