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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
Your experience..
+4
Sarah001
Kathy100
Alana3
Neevi
8 posters
Page 1 of 1
Your experience..
What triggered your vulvidynia off? Or did it just gradually start from nowhere?
What are your exact symptoms??
Im trying to compare as i havnt been diagnosed yet but im pretty convinced i have it :-(
Would love to hear anyone elses experiences..
What are your exact symptoms??
Im trying to compare as i havnt been diagnosed yet but im pretty convinced i have it :-(
Would love to hear anyone elses experiences..
Neevi- Posts : 14
Join date : 2013-11-05
Re: Your experience..
I wouldn't compare everyone is different, see what your doctors has to say and don't diagnose yourself. Because if you convince yourself that you have it you might convince the doctors and they'll concentrate on that rather than a different problem if that does occur.
Mine came out of nowhere sex was excruciating painful and felt like someone poured acid on an open wound. It was horrible. I didn't have any other symptoms at any other time. I had surgery about a year ago and the pain went away and have a somewhat norma sex life now.
Mine came out of nowhere sex was excruciating painful and felt like someone poured acid on an open wound. It was horrible. I didn't have any other symptoms at any other time. I had surgery about a year ago and the pain went away and have a somewhat norma sex life now.
Alana3- Posts : 1093
Join date : 2012-09-25
Re: Your experience..
Mine started mildy with sex for no particular reason - it didn't happen every time - followed by burning after sex & then what felt like a UTI 24 hours later. This happened on and off for a couple of years - I saw several DRs & a gynae who all said there was nothing wrong. Another clue was a very painful smear test but again they said nothing wrong. Then last year out of the blue the unprovoked started with burning & spikey pain all the time. Then a couple of months after that I started get lower back & tailbone pain. Sitting down, wearing jeans etc make it worse. I now take notriptyline tablets and am having physio both of which are helping.
If you think you may have it - I'd go to the Drs & get a proper diagnosis because what starts as mild can get a lot worse as it did with me. You may have try several different ones & several different treatments before you find one that suits you.
If you think you may have it - I'd go to the Drs & get a proper diagnosis because what starts as mild can get a lot worse as it did with me. You may have try several different ones & several different treatments before you find one that suits you.
Kathy100- Posts : 95
Join date : 2012-12-17
Re: Your experience..
I went to my doc yesterday who dismissed me and tolld me to go to a gynae as they never heard of vulvodynia and couldnt see anytin wrong with me. So i have an appointment to see a gynaecologist next Thurs.
Im hoping and praying its something else curable but reading a lot of the posts on here it does sound like i have it. So down and upset over this. Being a woman can really suck sometimes!!! :-(
Im hoping and praying its something else curable but reading a lot of the posts on here it does sound like i have it. So down and upset over this. Being a woman can really suck sometimes!!! :-(
Neevi- Posts : 14
Join date : 2013-11-05
Re: Your experience..
Mine started with sharp pain on penetration only for a couple of years which I ignored then I got intense inflammation and soreness in the vestibule only for 6 months which prompted me to seek help and while I was waiting for the appointment with the specialist (6 months) it became diffuse constant pain which is where it still is. I know mine is caused by pelvic instability and spasmed muscles which I'm working on. I couldn't get to see my GP so went to a GU clinic instead and found a brilliant consultant who understood the condition and sent me to a dermatologist to rule out skin conditions and suggested I find a women's health physio which I have. My exact symptoms are long winded but generalised burning and prickling constantly on the outer areas and rawness constantly in the vestibule which gets 100 times worse if I wear any tight clothes or clench my pelvic floor. I feel my best when I first get out of bed and worsen as the day goes on. The best book to read if you do have it is When Sex Hurts because it guides you through all the known causes and how to treat them.
Sarah001- Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK
Started with UTI symptoms
Mine began back in June 2013 completely out of the blue. Went to the doctors with symptoms of a UTI was given trimitheprin (?) but a couple of days later the burning got really bad and I was told I had urethritis and given amoxicillan..no improvement at all. Walk in GUM clinic was the next stop, swabbed for herpes on four seperate occasions...all negative, then they decided to check for thrush (never had this before) and LOTS of thrush was discovered...treated for this but still the burning didn't really go and I couldn't sit down at all. The only thing that gave me relief was ice packs applied to the area. Eventually, after some return trips to the GUM clinic Vulvadynia/vulvar vestibulitis was suggested and nortryptiline was prescribed. Unfortunately, I had a very bad reaction to this drug after taking it at a very low dose for a few days. At this moment in tim,e a TENS machine is giving me some minor relief and I've an appointment scheduled with a private vulval dermotologist for the end of November...Really need to find a way forward and get back on track with what up to now, was a completely normal , average life with an ordinary functioning vagina/vulva!!
The_Joker- Posts : 7
Join date : 2013-09-11
Age : 49
Location : South West, Uk
Re: Your experience..
hi there,
I was diagnosed at a GUM clinic as well.
I recommend you see Wendy Reid privately if you can afford it, she is the BEST in the country and she cures a lot of women.
I've just been referred today at St Barth's hosp in london, they have a vulval clinic and St Mary does too !
be hopeful, you got diagnosed pretty fast and there are a lot of treatments. i'm on 30 mg Amitryptiline and feeling so much better I can walk again and wear knickers ! 2 weeks ago I was practically dead from pain and fatigue! I have severe nerve pain, stabbing and electric shocks, no burning.
The burning pain might be dermatological, you could try taking some Optibac probiotics, there was one lady who was cured by it.
Here is the link: http://madpeach.blogspot.co.uk/2011/10/hannahs-story-success-with-yeast.html
I was diagnosed at a GUM clinic as well.
I recommend you see Wendy Reid privately if you can afford it, she is the BEST in the country and she cures a lot of women.
I've just been referred today at St Barth's hosp in london, they have a vulval clinic and St Mary does too !
be hopeful, you got diagnosed pretty fast and there are a lot of treatments. i'm on 30 mg Amitryptiline and feeling so much better I can walk again and wear knickers ! 2 weeks ago I was practically dead from pain and fatigue! I have severe nerve pain, stabbing and electric shocks, no burning.
The burning pain might be dermatological, you could try taking some Optibac probiotics, there was one lady who was cured by it.
Here is the link: http://madpeach.blogspot.co.uk/2011/10/hannahs-story-success-with-yeast.html
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Re: Your experience..
I'm sorry she says she was cured by the bacteria in the probiotic, Optibac in one UK probiotic with the same type of yeast that she used to get cured. Saccharomyces cerevisiae (boulardii)
I am taking it myself right now and will report if it helps. I have had yeast infections ALL MY LIFE
I am taking it myself right now and will report if it helps. I have had yeast infections ALL MY LIFE
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Re: Your experience..
I'm sorry, this was all a reply to The_Joker, did not realise I was posting random replies for a completely different question.
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Thanks Mary Jane!
Hi
Have just read your reply...many thanks for the positive and helpful comments! How easy is it to make an appointment to see Wendy Reid? I'm glad to hear that the Amytripline is making a difference for you. Hopefully the Optibac probiotics will too. I'll be very interested to hear if they do.
Have just read your reply...many thanks for the positive and helpful comments! How easy is it to make an appointment to see Wendy Reid? I'm glad to hear that the Amytripline is making a difference for you. Hopefully the Optibac probiotics will too. I'll be very interested to hear if they do.
The_Joker- Posts : 7
Join date : 2013-09-11
Age : 49
Location : South West, Uk
Re: Your experience..
@ the joker Wendy costs 250 to be seen in the harley street clinic privately or through NHS at royal free hospital, but that will take a long long time. but she is the best in the country, so ....I couldn't afford her personally, I just chose someone via BMI healthcare, even though not the best choice, but he still helped me.
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Re: Your experience..
Maryjane, reading your post triggered a memory for me. My issues started 5 yrs ago. After giving birth i had symptoms then diagnosed w/ bv ( not even sure I had this) but then had UTI and was treated w/ lots if antibiotics and subsequently got a bowel infection from antibiotics. The treatment for this was taking stronger antibiotic (ironic) and also a product called florastor. This was to build up the good bacteria (flora) in my bowel. If I remember correctly florastor is boulardii (a type of yeast i belive but not candida). Now getting to my point......I did not have V symptoms during that treatment. They came back after that treatment following a yeast infection. I never made any connection before. Maybe I'll try taking florastor again ...
Interesting...
Interesting...
Leslieg- Posts : 86
Join date : 2013-08-09
Re: Your experience..
@ Leslieg You can try again. I have a lot of reasons for my vulvodynia, but yeast is surely NOT helping my situation with inflammation and nerve pain, so I'm trying to get rid of it. Diflucan helps, but only for 24 hours
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Re: Your experience..
Try eliminating something from your diet. For me a birth control change and getting rid of probiotics helped
Alana3- Posts : 1093
Join date : 2012-09-25
Re: Your experience..
@ alana I'm trying to cut out sugar, but it's hard. I've had yeast infections on and off for 12 years
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Re: Your experience..
@ alana acidophilus was bad for me, it made me very constipated and did nothing for yeast. however, this new one is very well tolerated by my system.
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Re: Your experience..
Hi Neevi, I am still unsure as to whether mine started out the blue or came on randomly. I was a 17 year old virgin in college with no health problems, and like The Joker said, a normal happy painless vagina. I went on the Pill for two reasons - to see if it would help my acne and to see if it reduced my painful periods. Everything seemed okay for a few weeks. I randomly developed a urine infection, it would really itch and burn during and after a wee and my bladder never felt relief. The antibiotics cleared it all up. A few weeks later this dull sort of burning started but I just got on with life . One guy I went on a date with touched me quite roughly down below (the word 'fingered' makes me cringe lol) and that was the first time that had happened and it made me extra sore. The burning kind of faded away but was still kind of in the background. I met a guy in Jan 2010 who I really really liked and we were seeing each other for about 3 months. I ended up losing my v to him. It was painful and bled a fair bit but I guess that's often the case. Unfortunately that little fling ended suddenly, he went back to his ex and I was left devastated! It took me about a year to get over it. Then the burning got really bad. I kept getting std tests as I'd had unprotected sex but everything was clear. I had cystitis and thrush a couple times, what's weird is when I treated them all burning stopped! Then returned after a few days :S but the infections had gone. I met my current boy in oct 2011 and he's amazing! I was off the pill by this point. I tried 2 diff types of pill and the birth control injection which stopped my periods. This made little difference. I also had a cervical cancer vaccine? We're sometimes able to have sex and sometimes not. The burning got really bad in 2012 and is now often quite bad
tinkerbelle2- Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.
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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