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
Vulvodynia burning mouth and bladder discomfort
+2
PainBlogger
Annmaria
6 posters
Page 1 of 1
Vulvodynia burning mouth and bladder discomfort
I have been diagnosed with vulvodynia and I also have burning mouth pain at the same time. I was convinced I must have herpes simplex but I have exhaustively tested negative for this including having a western blot test which is the gold standard test for herpes simplex.
Now I just don't know what to do and would love to hear from anyone who might be able to advise... Is there anyone out there who has experienced burning mouth and vulvodynia together and if so did you find anything to help relieve the discomfort of the mouth?
I also find with the V symptoms I get a full bladder feeling... it isn't cystitis but is uncomfortable... any advice on dealing with this also?
I've given up on trying to get any medical support and I have been asked by doctors if I suffer health anxiety... no one seems to understand that this is real!
I just want one pain free day but suspect that this just isn't going to happen
I'm 57 and so post menopausal
Thanks very much
Now I just don't know what to do and would love to hear from anyone who might be able to advise... Is there anyone out there who has experienced burning mouth and vulvodynia together and if so did you find anything to help relieve the discomfort of the mouth?
I also find with the V symptoms I get a full bladder feeling... it isn't cystitis but is uncomfortable... any advice on dealing with this also?
I've given up on trying to get any medical support and I have been asked by doctors if I suffer health anxiety... no one seems to understand that this is real!
I just want one pain free day but suspect that this just isn't going to happen
I'm 57 and so post menopausal
Thanks very much
Annmaria- Posts : 7
Join date : 2016-05-01
Re: Vulvodynia burning mouth and bladder discomfort
With regards to the bladder symptoms I'd suggest (if you're not already doing this) cutting out: caffeine, alcohol, carbonated drinks, artificial sweeteners, and citrus fruits/juice. Decaffeinated tea/coffee is best avoided too as it's still acidic and can irritate. I still have some caffeine because I do eat chocolate, but by cutting out the above and switching to redbush tea or peppermint tea as my hot drinks I noticed a lot less urge to empty my bladder when I didn't really need to. I don't limit my fluids - in fact, I drink about 10-12 large mugs of (redbush/peppermint) tea per day plus plain water. When I empty my bladder now it is generally pretty full and I empty 6-7 times a day, which is normal.
I can't offer any advice on the burning mouth issue. I don't get that thankfully.
I hope you get some relief soon.
I can't offer any advice on the burning mouth issue. I don't get that thankfully.
I hope you get some relief soon.
PainBlogger- Posts : 219
Join date : 2015-07-27
Re: Vulvodynia burning mouth and bladder discomfort
Thank you so much!
I do drink redbush as it's the closest to thinking you are drinking tea and I make a lot of teas from herbs I grow. Is the bladder thing a common symptom? I am so confused with this partly because of the mouth symptoms ( which now I think about it probably started first) I really struggle with not understanding why I have got this which is why I assumed I must have had herpes simplex .
I think some of this for me is learning to not overthink things and if I could just get one symptom under control it would be a relief!
Thanks again
I do drink redbush as it's the closest to thinking you are drinking tea and I make a lot of teas from herbs I grow. Is the bladder thing a common symptom? I am so confused with this partly because of the mouth symptoms ( which now I think about it probably started first) I really struggle with not understanding why I have got this which is why I assumed I must have had herpes simplex .
I think some of this for me is learning to not overthink things and if I could just get one symptom under control it would be a relief!
Thanks again
Annmaria- Posts : 7
Join date : 2016-05-01
Re: Vulvodynia burning mouth and bladder discomfort
A lot of women with vulvodynia also have some bladder involvement. It's not surprisingly really given how close together everything is down there.
PainBlogger- Posts : 219
Join date : 2015-07-27
Re: Vulvodynia burning mouth and bladder discomfort
Check out IC. Thar could result in bladder pain...
Alana3- Posts : 1093
Join date : 2012-09-25
To Annmaria
hi, you sound similar to me I'm 56 menopausal. As regards bladder, I always show blood on urinalysis strip, suffer dys vulvo. Are there anyways that help you, Lyrica helps me.
Tilly56- Posts : 9
Join date : 2016-11-27
Re: Vulvodynia burning mouth and bladder discomfort
I used to have burning tongue and mouth....thought it would never go away. This was before I got vulvadynia. It did go away but I wonder if the burning is somehow related. I also got atrial fibrillation in between! It's been a tough couple of years.
Eliza123- Posts : 2
Join date : 2016-11-27
Age : 74
Location : Florida
Re: Vulvodynia burning mouth and bladder discomfort
Hi Eliza
Sounds as though you have had a tough time! I think the Vulvodynia started a little before the burning mouth for me but the mouth burning is what really gets to me. I have recently had some days where it has been OK and then it comes back. It doesn't seem as bad now though. I was wondering however: How long did you have it for and did you find you got some days without it once it started to go away?
I have some medication from the doctor but I've been coping better using meditation and trying to reduce stress by not obsessing over it !
I do think there must be a connection between the two conditions but I don't come across many people who experience it!
Thank you for your reply
Sounds as though you have had a tough time! I think the Vulvodynia started a little before the burning mouth for me but the mouth burning is what really gets to me. I have recently had some days where it has been OK and then it comes back. It doesn't seem as bad now though. I was wondering however: How long did you have it for and did you find you got some days without it once it started to go away?
I have some medication from the doctor but I've been coping better using meditation and trying to reduce stress by not obsessing over it !
I do think there must be a connection between the two conditions but I don't come across many people who experience it!
Thank you for your reply
Annmaria- Posts : 7
Join date : 2016-05-01
Re: Vulvodynia burning mouth and bladder discomfort
Yeah I have both aswell sorry I know this is a old post but yeah I do feel as if it's stress sometimes but I don't know the burning mouth pain is so annoying it comes and goes I can't pin point a trigger if I'm honest xx
Zbrown- Posts : 131
Join date : 2014-02-26
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