Vulvodynia Support
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» Hope to all my suffering ladies
my life story  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
my life story  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
my life story  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
my life story  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
my life story  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
my life story  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
my life story  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
my life story  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!
my life story  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


my life story

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Post  haykay23 Thu Oct 17, 2013 3:36 am

My name is Hayley and I am twenty years old.  I have been recently officially diagnosed with vulvodynia.  For sometime now I have been hovering around the idea of having it but finally have a NP who gave me diagnosis.

Upon examination it was found that the mucosal glands around the vaginal opening were inflamed and very irriatated.  They hurt upon being touched and just felt burny/ sore.  She concluded that I had vv but it was localized and provoked.  She said that it was referring pain to my bladder, which made it feel like I had to pee, but the burning was actually external. I am currently on ETA cream, 7% lidocain, nortriptyline thirty mg, and ten mg of singulair.  My urgency symptoms still persist and seem to cycle with my period.  I am currently on mirocete after apri, which I was only on for two months and did not like.  I am currently sexually active but have not been since my current symptoms started most recently.  I have only had one partner and so has he.  I have also been checked for STDs, which I knew I did not have but I just needed to be sure.  I have had pretty bland diet and only drink on weekends and chose beer as it seems to be the least deadly choice. Basically what I’m looking for is if anyone else has had the 'gotta go symptoms', found a BC that works best, or has any tips for managing flares.  I am very stressed with school as I am in pharmacy school currently and have a heavy course load.


Last edited by haykay23 on Thu Oct 17, 2013 7:47 pm; edited 1 time in total (Reason for editing : needed to shorten)

haykay23

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Post  tinkerbelle2 Thu Oct 17, 2013 10:37 am

Hey Hayley,

I'm Belle, nice to meet you Smile

I have read your story, sorry to hear that you've had such a rough time!

My vvd is slightly different to yours as I get the pain at 2 points one just inside and one at the opening. I really have no clue as to what triggered mine but I think it could have been a yeast or urine infection.

I too get that need to pee feeling, and sometimes it is very sore just after weeing. If I am at home I dab the area with a wet flannel afterwards. Currently the only relief I get is hot baths and swimming - the water seems to soothe the area. For others this would aggravate their problem further. I have also been using a topical spray called Xylocaine which is not actually meant to be used vaginally but is used to numb the mouth by dentists. The chemist said if it's safe for the moutg it should be okay for down there as it's similar delicate skin. I have also been drinking a lot of cranberry juice.

I think you should keep persisting with doctors, that's what I'm gonna do! It's great that you're close with your mum, I am too and it really helps.

Just remember you're not alone, the girls on this forum are really lovely and will be there for you and support you through whatever!
tinkerbelle2
tinkerbelle2

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Post  haykay23 Thu Oct 17, 2013 2:25 pm

Belle,
Thanks for your reply.
I have found that taking aveeno oatmeal baths seems to help. The water seems to subside my symptoms.
Will have to look into the xylocine item.
Thank you for the support

haykay23

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Post  Sarah001 Thu Oct 17, 2013 5:02 pm

Haykay please go and have your pelvic alignment and pelvic floor examined by a Women's Health Physio, the compression shorts could be helping because of an SI problem which could be tightening your pelvic floor up which does lead to UTIs because of incomplete emptying of the bladder (tight muscles don't allow the urine out easily) and a feeling of a UTI when one isn't present due to pelvic floor trigger points. If you do one thing to try and find the answer then please do see someone who knows about both pelvic alignment and pelvic floor trigger points as a first port of call.
Sarah001
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Post  haykay23 Thu Oct 17, 2013 5:05 pm

I have had mine checked and monitored but will look into other examinations. Thanks!

haykay23

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