Vulvodynia Support
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» Hope to all my suffering ladies
Hello, just introducing myself EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Hello, just introducing myself EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Hello, just introducing myself EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Hello, just introducing myself EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Hello, just introducing myself EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Hello, just introducing myself EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Hello, just introducing myself EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Hello, just introducing myself EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Hello, just introducing myself EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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 …

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- …

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

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 …

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 …

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 …

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 …

Comments: 3


Hello, just introducing myself

5 posters

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Post  Steff8 Wed Jul 13, 2011 3:13 pm

Hi, I am new here. I live in the U.K. but was born and raised in the U.S (married to a Brit). I have had v.vestibulitis for around 8 yrs now (ugh). I only have pain with penetration. I had a normal (healthy)sex life up until then. I am on amitriptyline and taking calcium citrate. I think the calcium has helped somewhat and am considering coming off of the amitriptyline to see how that feels without it. I have had very little helpful treatment from U.K. doctors and am beyond frustrated. I had yeast infections off and on and was on the pill for many years (no longer), I am curious to find out more about what people think these things have to do with this problem. I just had an appointment with my gp today because my periods have gotten really bad (one week of cramps/spotting, followed by a real period); this has happened since I came off the pill due to having a blood clot in my leg last year. She wants me to consider the Mirena coil but I am scared it will make things worse, but am sick of the bad periods. Anyway that's my glamorous tale, hope to learn some helpful information here thank you!

Steff8

Posts : 2
Join date : 2011-07-13

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Post  Sarah001 Wed Jul 13, 2011 6:56 pm

Hi Steff and welcome to the forum. I know lots of ladies here have had yeast infections, myself included, but I'm not really sure how they're connected as lots of women without V have lots of yeast infections too. As for the Mirena, I'd be very careful about that, my friend had one fitted and it gave her burning mouth syndrome so it may well make the V worse. Anyway, have a look around and ask anything you want to, if we can help we do. Wink
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  Sebby (Admin) Sun Jul 17, 2011 9:26 pm


Hi and Welcome to the forum

I dont have a lot of faith in the uk doctors. Only met one that really understood.

I ended up researching the condition myself asking for the meds I wanted and paying for a biofeedback machine myself to do home treatment from www.vulvodynia.com - have had a break in treatment and a bad flare up recently so will not know how well im doing for a few more months yet

Keep researching and reading up on things, you will find the right combination of treatments even if you have to pester the doctors for them!

Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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Post  Joolibee Mon Jul 18, 2011 9:13 pm

Hi there, just wanted to comment on the mirena coil idea. I'm not going to advise for or against, but will tell you about my experience. My vulval pain came on very gradually over a number of years, involving UTI symptoms that did not always test positive for infection. I also had lots of uncomfortable brown spotting for up to a week before my period started. Then my periods became so heavy that I started to 'flood' in public. My GP suggested a mirena coil and referred me to gynea. At that point I did not know that I had vestibulodynia, as the pain was mainly manageable and I thought it was just perimenopause. Having the coil fitted was excruciatingly painful and the pain remained quite severe for a couple of weeks afterwards. It was after this that sex became completely impossible and the pain seemed worse than ever. I also spotted for 6 months, but no more heavy periods. When I had my check up, I mentioned the pain and the gynea said she did not think the mirena was the cause. I was too scared to have it removed, as I thought it might make the pain worse still. Anyway, I eventually forgot about the coil and embarked on various other treatments with variable success. I remembered the mirena a few months ago, when I realised that my periods have stopped so I no longer needed it. I had it removed in May and the removal was not too painful. However, with regard to my vulval pain, it has made no difference whatsoever. So I don't think the coil was directly connected to the v pain. It was just that a procedure that is painful for any woman was particularly painful for me. Good luck making your decision. If you do decide to get a mirena, I would ask for some anaesthetic / strong painkillers to help to deal having it fitted.

Joolibee

Posts : 36
Join date : 2011-03-09
Location : France / UK

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Hello, just introducing myself Empty calcium citrate

Post  Heidi Sat Jul 23, 2011 1:59 am

I forgot to add that I also take timed calcium citrate and am on the low oxalate diet. Both help me a lot, although the low oxalate diet has really been the key for me. I've kept a journal of my treatments and tried to only add or delete one at a time (wait a month or so), so I could see really see the effects of the treatment. For example, looking back at my journal helped me realize that eating tomatoes was causing me to flare-up 2-3 days later (as did eating any high acid or high oxalate food). Of course I was in a continuous flare for the first few years; it was only after I started getting better on the diet that I could tell that something made me flare-up (severe pain, burning, itching).
Heidi
http://lowoxalatefamily.wordpress.com

Heidi

Posts : 28
Join date : 2011-07-17
Age : 55
Location : Missouri, USA

http://lowoxalatefamily.wordpress.com

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