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
How to deal at work
3 posters
Page 1 of 1
How to deal at work
Hi everyone,
I am a 29-year old from the UK and have recently been diagnosed with Vulvodynia. I have just spent hours reading through the forum and feel reassured that I am doing the right things to address it. My symptoms have become so bad that I had to get signed off work and I have been at home for nearly 2 weeks now. At the moment, I just can't imagine sitting at a desk all day and being in a stressful environment as this makes the pain a lot worse.
I was wondering how everyone is dealing with their work and working environment? Has anyone got any tips on how to reduce the pain in an office setting (is there a seating position that makes it easier? Do you go without underwear/tight clothes?) and has anyone taken any more drastic measures such as requesting longer breaks etc? Has anyone tried mindfulness/meditation to control the pain at work?
Looking forward to hearing your advise. Thanks
I am a 29-year old from the UK and have recently been diagnosed with Vulvodynia. I have just spent hours reading through the forum and feel reassured that I am doing the right things to address it. My symptoms have become so bad that I had to get signed off work and I have been at home for nearly 2 weeks now. At the moment, I just can't imagine sitting at a desk all day and being in a stressful environment as this makes the pain a lot worse.
I was wondering how everyone is dealing with their work and working environment? Has anyone got any tips on how to reduce the pain in an office setting (is there a seating position that makes it easier? Do you go without underwear/tight clothes?) and has anyone taken any more drastic measures such as requesting longer breaks etc? Has anyone tried mindfulness/meditation to control the pain at work?
Looking forward to hearing your advise. Thanks
fran- Posts : 2
Join date : 2016-10-29
Re: How to deal at work
Have you tried a pressure relief cushion? https://putnams.co.uk/collections/pressure-relief/products/sero-pressure-cushion-dr-huff-cut-out is the one I have for hard chairs.
PainBlogger- Posts : 219
Join date : 2015-07-27
Re: How to deal at work
I use a cushion with a centre cut out when I drive. I was off work for 4 months until I felt I was able to go back to work. Nortriptyline 20mgs was what got me back on my feet. That was in 2012. It is improving all the time. Still have set backs. Summertime is challenging for me. If I get too hot due to high temperatures it sets it off. So I cope better when its cooler. I can sit comfortably now. Try not to put too much pressure on the vulva. Sit back further and try to relax. It's very early days for you. I hope it gets better for you soon. I also recommend Dr Huff cushion to sit on. This didn't help for driving. My husband bought me a dunlop ring cushion which is more of a heavy duty foam. This seems to help more as when I drive I am sitting more upright and putting more pressure on the vulva. Good luck
fairlight10- Posts : 72
Join date : 2016-04-17
Re: How to deal at work
My husband has just reminded me I also had 20 sessions of acupuncture during the first 12 months. This was beneficial for the stress this condition can cause. I was also counselled when having the acupuncture.
fairlight10- Posts : 72
Join date : 2016-04-17
Re: How to deal at work
Thanks for the advice. I already have a ring cushion but it doesn't really help so I might try and find a gel cushion instead. I'm just finding the idea of taking a ring cushion into the office a bit strange because people know what it is and what it's for....but maybe I just need to get over the embarrassment. I am getting signed off for another month now which is very frustrating (and a drain on money as I am seeing a lot of private doctors and specialists because my NHS referrals have got 2-3 months waiting times which I'm assuming is something most people here are familiar with.)
I am starting CBT/mindfulness on Monday and I have a physio examination for my pelvic floor booked in as well. Both self-funded. I'm really keen to try acupuncture - do you think the practitioner needs to have any knowledge about vulval pain? Did you see a specialist? I'm just worried that someone could make it worse?
I have been given Amitryptaline and I have the pills at home but so worried about the side effects that I haven't touched them yet.
Do you know of any good doctors in the UK? I am with a good Gyaenecologist and have been in contact with David Goldmeier who knows a lot about this. Also waiting for another referral to a dermatologist who specialises in Vulvodynia.
Have you seen a pain specialist? This was recommended by Dr Goldmeier.
Sorry about all of these questions but I want to take control of this as soon as possible. Thanks
I am starting CBT/mindfulness on Monday and I have a physio examination for my pelvic floor booked in as well. Both self-funded. I'm really keen to try acupuncture - do you think the practitioner needs to have any knowledge about vulval pain? Did you see a specialist? I'm just worried that someone could make it worse?
I have been given Amitryptaline and I have the pills at home but so worried about the side effects that I haven't touched them yet.
Do you know of any good doctors in the UK? I am with a good Gyaenecologist and have been in contact with David Goldmeier who knows a lot about this. Also waiting for another referral to a dermatologist who specialises in Vulvodynia.
Have you seen a pain specialist? This was recommended by Dr Goldmeier.
Sorry about all of these questions but I want to take control of this as soon as possible. Thanks
fran- Posts : 2
Join date : 2016-10-29
Re: How to deal at work
Get started on the amitriptyline in low doses while you are off work. If you find the side effects unpleasant ask to try nortriptlyline these are tricylic antidepressant used in low doses they very gradually calm nerve pain. Mine is in my vestibule. It works by desensitising the area giving you the problem. So, when it gets provoked I.e. sitting, wearing underwear and so on you will be more comfortable. This is also when your cushions will help. You will then be able to let go of thinking about it most of the time. My acupuncturist is a GP in the Maidstone area. I had to go by the private route eventually as a lot of doctors don't know what is wrong. They tell you it is thrush or a uti. They give you medication for that and it makes it worse. My gynaecologist told me I had vulvodynia and started me on the antidepressants. I saw him again on the nhs as a referral from my gp for the removal of a lost mirena coil, a vulvoscopy and a histoscopy. I have not been embarrassed to talk to family and colleagues about this condition. They were supportive when I was at my worst and when I thought this would never get better.
fairlight10- Posts : 72
Join date : 2016-04-17
Re: How to deal at work
fran wrote:Thanks for the advice. I already have a ring cushion but it doesn't really help so I might try and find a gel cushion instead. I'm just finding the idea of taking a ring cushion into the office a bit strange because people know what it is and what it's for....but maybe I just need to get over the embarrassment. I am getting signed off for another month now which is very frustrating (and a drain on money as I am seeing a lot of private doctors and specialists because my NHS referrals have got 2-3 months waiting times which I'm assuming is something most people here are familiar with.)
I am starting CBT/mindfulness on Monday and I have a physio examination for my pelvic floor booked in as well. Both self-funded. I'm really keen to try acupuncture - do you think the practitioner needs to have any knowledge about vulval pain? Did you see a specialist? I'm just worried that someone could make it worse?
I have been given Amitryptaline and I have the pills at home but so worried about the side effects that I haven't touched them yet.
Do you know of any good doctors in the UK? I am with a good Gyaenecologist and have been in contact with David Goldmeier who knows a lot about this. Also waiting for another referral to a dermatologist who specialises in Vulvodynia.
Have you seen a pain specialist? This was recommended by Dr Goldmeier.
Sorry about all of these questions but I want to take control of this as soon as possible. Thanks
I think you're doing the right thing by self-funding treatment to avoid the long NHS wait. I've been doing the same. I'd rather go without other things and put my health first because it's difficult to enjoy life when in pain, isn't it? I've been lucky enough to finally find a combination of therapies that have worked for me (Duloxetine, physio, home physio exercises, acupuncture, common sense measures). You can read my background here: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement
If you can find an acupuncturist who specialises in pain then all the better, but any qualified practitioner should be able to treat you.
PainBlogger- Posts : 219
Join date : 2015-07-27
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