Vulvodynia Support
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» Hope to all my suffering ladies
Vulvodynia pain and discomfort in remission EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvodynia pain and discomfort in remission EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvodynia pain and discomfort in remission EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvodynia pain and discomfort in remission EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulvodynia pain and discomfort in remission EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia pain and discomfort in remission EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia pain and discomfort in remission EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia pain and discomfort in remission 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!
Vulvodynia pain and discomfort in remission 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


Vulvodynia pain and discomfort in remission

+2
PainBlogger
mary jane
6 posters

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Vulvodynia pain and discomfort in remission Empty Vulvodynia pain and discomfort in remission

Post  mary jane Thu Feb 11, 2016 3:33 pm

Hi everyone,

I have not logged on in ages, uni life has been sucking the living soul out of me.

I wanted to post this as an encouragement for others that Vulvodynia and nerve pain in general need not be for life.

I had this horrible pain from 2013 to 2014, after which things got a lot better, however the change was very slow and gradual.

Things I couldn't do: wear knickers, sit down properly, run, get a check-up, and so on.

What helped me was good old fashioned medication, I was on Amitriptyline for about 4-5 months which was the first thing to help. After this I started on Lyrica, stayed on it for 8 months. Weaning off these has been highly disrupting, never mind that they completely screwed up my memory whilst on them!

I now have insomnia as a result of weaning off these 2, but the bright side is I am losing weight and I feel as though nothing ever happened. I can have intercourse, wear tight jeans, run, everything except ride a bike for more than 2 hours Smile  (this has to do more with my previous bartholin surgeries though). I quit taking meds this past December

Unfortunately, I know these do not work for everyone, I would imagine the percentage to be very low. I wanted to post this to give others hope. When I first logged on these forums, I read all the positive stories to give myself courage.

I wish you all get cured and  live a pain-free life! sunny
mary jane
mary jane

Posts : 345
Join date : 2013-10-05
Location : UK

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Vulvodynia pain and discomfort in remission Empty Re: Vulvodynia pain and discomfort in remission

Post  PainBlogger Thu Feb 11, 2016 9:07 pm

Thank you for posting about your improvement. That's very encouraging to hear. I didn't have much luck with pregabalin (Lyrica) or amitriptyline, but am finding duloxetine and physio quite helpful. I'm much improved from where I was nearly two years ago when it started, but still have a way to go because of tight pelvic floor muscles causing 'functional difficulties'. I can't wear jeans again yet, but that's not the end of the world.

I also had some trouble getting off Lyrica with withdrawal symptoms and I feel so much more alert since I've been off that and the amitriptyline. I can get away with so much less sleep.

Thanks again for posting and I hope your insomnia clears up.

PainBlogger

Posts : 219
Join date : 2015-07-27

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Post  WaahwaahUK Sat Feb 20, 2016 2:33 pm

So grateful to read a positive success story here! I'm really pleased for you. I think its so important to remember that this can indeed be a slow and gradual healing process, so thank you for highlighting that. For me, I'm definitely in a better place pain wise than I was a year and a half ago when this started for me. Slowly but surely, with the odd setback, I can see better days. Good luck with your life away from this pain! Live it full and be happy x

WaahwaahUK

Posts : 117
Join date : 2015-07-31

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Post  let's kick this Wed Apr 27, 2016 12:41 am

Mary Jane,

Are you still pain free?

let's kick this

Posts : 29
Join date : 2016-03-29
Location : USA

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Post  PainBlogger Wed Apr 27, 2016 7:49 am

To follow up to my comments from February - as of this week I can wear jeans again! Not ridiculously tight skinny jeans, but still jeans that are the right size for me and not baggy. Very Happy

PainBlogger

Posts : 219
Join date : 2015-07-27

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Post  emalita Wed Apr 27, 2016 12:52 pm

PainBlogger - That is wonderful! I'm so happy you have found some relief! Very Happy

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  fairlight10 Wed Apr 27, 2016 5:02 pm

Hi PainBlogger. Glad you are starting to feel you are beating this horrible condition. I have been on nortriptyline for four years this summer at 20mgs upping it to 30mgs last September. I have been comfortable for a few months now. Sitting and intimacy almost normal. Then yesterday I thought I would try and drive the car not sitting on my ring cushion for 10 minutes. This started the nerves to start firing off. Then they calmed down but felt stinging for the rest of the evening. Bloody things still there.

fairlight10

Posts : 72
Join date : 2016-04-17

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Post  PainBlogger Wed Apr 27, 2016 5:45 pm

I'm still very much dependent on my ring cushion (it's actually square!) when I sit on hard chairs. Although I'm a lot better and continuing to improve, I'm very conscious of trigger factors and am being very cautious when it comes to trying things to see if I can do them again. Like with trying jeans again - I've only been wearing them around the house so far in case they spark off any irritation I can change straight away.

PainBlogger

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