Vulvodynia Support
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» Hope to all my suffering ladies
Not sure what's wrong with me, but.... EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Not sure what's wrong with me, but.... EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Not sure what's wrong with me, but.... EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Not sure what's wrong with me, but.... EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Not sure what's wrong with me, but.... EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Not sure what's wrong with me, but.... EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Not sure what's wrong with me, but.... EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Not sure what's wrong with me, but.... 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!
Not sure what's wrong with me, but.... 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


Not sure what's wrong with me, but....

3 posters

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Not sure what's wrong with me, but.... Empty Not sure what's wrong with me, but....

Post  haybay Tue Mar 31, 2015 8:15 am

I'm so glad to have found a group of women experiencing similar symptoms! My symptoms have been progressing for at least five years now. I'm 27 years old, and I'm finding that I'm becoming more and more insecure and depressed as a result of my symptoms, as well as the uncertainty of any diagnosis. Some suggestions have been made by three doctors, but no one has been able to "cure" me or provide me with any guidance to reduce my discomfort.

My case, like many others I've read, is not simply explained. There was no "start date" and old symptoms have manifested into new ones. However, I have noted some variances in my own experience that may or may not fall under the broad vuvlodynia umbrella.

I'm very interested to read more from the members of this forum so that I can be better prepared to choose my next doctor, and more equipped to ask and answer questions when I have my next opportunity.
haybay
haybay

Posts : 5
Join date : 2015-03-31
Age : 36
Location : Mississippi, USA

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Post  x_chelss@live.com Thu Apr 02, 2015 11:23 pm

You probably haven't found a 'cure' yet because there isn't really one that works for everyone. Most woman have to try a whole range of treatments before finding any relief. I tried 4 different treatments and then ended up having surgery (vestibulectomy). The surgery has definitely helped relieve some symptoms.
Good luck x

x_chelss@live.com

Posts : 50
Join date : 2014-02-12

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Post  haybay Fri Apr 03, 2015 2:26 am

What type of symptoms is the surgery intended to relieve?
haybay
haybay

Posts : 5
Join date : 2015-03-31
Age : 36
Location : Mississippi, USA

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Post  sailor_moon Fri Apr 03, 2015 10:32 am

I'd like to know the answer to the above question too^ the thought of having to have a vestibulectomy really really scares me....On what the area looks like afterwards appearance - wise. ..especially if the surgery is unsuccessful.
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  x_chelss@live.com Fri Apr 03, 2015 3:08 pm

Before the surgery I had constant burning, stinging, like someone was pouring acid into my vagina. I couldn't have pain free sex, I couldnt sit normally or wear tight clothing. I couldn't walk for a very long time which made my job very difficult.
Now I've had the surgery all the symptoms above have vanished really I never have the burning from my vagina hole and sex is getting more and more easier and less painful. I can walk for long periods of times and I can sit normally again.

To the woman who asked about the appearance off the vagina after the surgery, it honestly doesn't look all that different if anything I prefer the way it looks now to the saying used to. They cut away my hymen and the tissue from inside my vagina cut down towards my anus (modified fenton) to make my vagina wider and injected Botox to stop my pelvic floor muscle from spazuming. I'm 9 weeks post op and I do still have red sore tissue from where the stitches were but it takes a year to fully heal from a vestibulectomy. My every day life is so much better than what it was, when I had the surgery I was warned it may not work and I'd loose lubrication, in my eyes it has worked im not 100% at the moment but I'm a lot better than what I was this time last year.
I have lost lubrication so without lube sex won't happen but I'd rather use lube than be in pain for the rest of my life. I only had a parcial vestibulectomy so only half off my vestibule was removed, if you have a full vestibulectomy the WHOLE of your vestibule is removed. I only have half off my labia minor lips as the bottom half was cut away so the tissue from the inside could be sown together.

It took me a year and a half and 4 doctors to finally get the surgery but it was by far the best decision for me, and even if it never worked I'd still do it again because the recovery wasn't that bad. I was back at work after 2 weeks and they told me I'd need 6 weeks off work! I still have irritation with urination and tenderness on my anterior vagina wall but I think that's related to my bladder and NOT vulvodynia.

Private message me if you have anymore questions x

x_chelss@live.com

Posts : 50
Join date : 2014-02-12

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Post  haybay Fri Apr 03, 2015 4:30 pm

Thank you for the quick, detailed and well explained response. I do not think my symptoms would benefit from any kind of surgery unless they took off my whole top layer of skin around my labia majora.
haybay
haybay

Posts : 5
Join date : 2015-03-31
Age : 36
Location : Mississippi, USA

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Post  x_chelss@live.com Sat Apr 04, 2015 9:14 am

A full vestibulectomy would remove the area you are talking about. The vestibulectomy I had only removed the painful tissue, I do still have some painful tissue but nothing compared to what I was experiencing before. And I'm hoping that it's just scar tissue which is causing discomfort x

x_chelss@live.com

Posts : 50
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