Vulvodynia Support
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» Hope to all my suffering ladies
Is this Vulvodynia!?! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Is this Vulvodynia!?! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Is this Vulvodynia!?! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Is this Vulvodynia!?! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Is this Vulvodynia!?! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Is this Vulvodynia!?! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Is this Vulvodynia!?! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Is this Vulvodynia!?! 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!
Is this Vulvodynia!?! 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


Is this Vulvodynia!?!

5 posters

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Is this Vulvodynia!?! Empty Is this Vulvodynia!?!

Post  VaxilRae Wed Aug 31, 2011 6:50 am

Hi guys!

I am so glad I found somewhere who might be able to tell what these strange symptoms might be!
I'd like to share my story, I apologize if I get graphic, I will try not too bad.

The first time I ever experience 'the burning sensation' it lasted for 6 hours but never came back.

I started on the Micronor mini pill, and after taking it for two weeks, one day after removing a tampon, it was like my entire vulva was burning with pain! I dont know how to describe it except similar to maybe an insect bite, that warm burning sensation. The only thing that made it feel better was peeing and not wiping afterwards.

It eventually went away, but now every single week, at least 3-5 times a week I will get this same burning sensation in my vestibule area!
It's not muscles, I can have sex normally and use tampons fine, its like the skin at the opening of my vagina and labia minor just BURN with pain. Sometimes I bath takes it away, other times a bag of ice between my thighs, and at the last attempt taking a narcotic pain killer.

I've been STD tested and I am completely free, no infection, no BV.....its very hard to get to the doctor to check this because I cant just go in when it happens mostly in the evenings and disappears within an hour two.

Is this vulvodynia or something else?

VaxilRae

Posts : 6
Join date : 2011-08-31

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Post  VaxilRae Wed Aug 31, 2011 6:53 am

One other thing, vagisil or other yeast infections products use to help me a bit, but Im not kiddiing now they only increase the burning!

VaxilRae

Posts : 6
Join date : 2011-08-31

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Post  Sarah001 Wed Aug 31, 2011 12:45 pm

It is vulvodynia because that just literally means "pain in the vulva" but it's important to attempt to figure out what causes it, as it comes and goes it might be an idea to write down everything you do, eat, put near the area so you can figure out if there's a common factor that could be causing it.
Sarah001
Sarah001

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Join date : 2010-06-11
Age : 50
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Post  mmorgan Wed Aug 31, 2011 1:58 pm

Have you changed your laundry detergent? Try switching to something without fragrance or dyes.
What soap do you wash with when you bathe? Try just plain water or Dove hypoallergenic.
Does it burn every time when you wear tampons? You could be allergic to the kind you are using.

Like said above write down everything your eating, food can play a role in the dreaded sensation.
Orange juice increases my burning sensation from a 2 to an 8.

Hope to hear back from you.
Very Happy
mmorgan
mmorgan

Posts : 65
Join date : 2011-07-14
Age : 35
Location : Texas

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Is this Vulvodynia!?! Empty Advice

Post  Aussie Tue Sep 06, 2011 1:19 am

Get off the pill and get your hormones tested.

My pain is way, way better off the pill. I am awating a baseline hormone test (saliva) to see where I am at. The pill screws with your oestrogen and testosterone, this can in theory cause problems with the skin of the vulva.

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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Post  VaxilRae Tue Sep 06, 2011 7:50 pm

Thanks for the replies guys!

I went off the pill MONTHS ago, and my burning does not seem to be related to laundry detergent or tampon usage at all. When I am burning tampons are painful to use, but they themselves do not cause it by my observation Neutral

The only thing I've noticed that relates to it, is peeing! 70% of the time the burning starts is after I pee, wipe, and flush. I have no STDs or infections, vaginal or urethral.

I am so frustrated I have been needing to take more and more narcotics to get rid of the pain!

VaxilRae

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Join date : 2011-08-31

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Post  mmorgan Tue Sep 06, 2011 7:58 pm

I have noticed that with mine as well. I feel completely normal when I sleep but as soon as I do my morning void the sensation awakes. Try keeping a food diary and see which foods could be causing this.
mmorgan
mmorgan

Posts : 65
Join date : 2011-07-14
Age : 35
Location : Texas

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Is this Vulvodynia!?! Empty Bicarb Soada

Post  Aussie Tue Sep 06, 2011 11:56 pm

Your morning urine is the most acidic. Try drinking one t spoon of bicarb soada in a glass of water it will alkalise your urine. Follow the IC diet on the IC Network. If the urine burns then alkalising it is the best bet.

Hope this helps.

Aussie

Posts : 230
Join date : 2011-03-15
Age : 35
Location : Queensland, Australia

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Post  VaxilRae Wed Sep 07, 2011 4:14 pm

what is so confusing is why does it not always happen? Like I mentioned a high percentage of the time is does, but not all the time. Why does the burning last for so darned long after peeing? Even washing off with water doesnt help. I still burn!

VaxilRae

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Join date : 2011-08-31

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Post  mmorgan Wed Sep 07, 2011 4:22 pm

Sometimes it effects me while other times it doesn't. It's hard for me to pinpoint what is causing my discomfort but I can say that my pain level has shot down from an 8 to a 2 or 1. Try writing a dairy of what you consume. I found drinking nothing but water has helped alot and in-taking tons of fluids. There is a light at the end of this condition. It's just sad that you have to fight for yourself to get better and kind of be like your own doctor because it is rare to find a doctor that is knowledgeable about this condition. You will get there. Smile
mmorgan
mmorgan

Posts : 65
Join date : 2011-07-14
Age : 35
Location : Texas

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Is this Vulvodynia!?! Empty me too!

Post  grassy Wed Sep 07, 2011 8:39 pm

I sleep all night, get up. First pee and i feel like needle pricks and burning. Then during the day, i feel better after i pee. Also after a poop i sometimes get a polka red hot burning up the entire v area. Like red hot pepper. It lasts a minute and dis appears. I also get this sensation my urine is hotter then my body. Has anyone ever wondered if they were allergic to cotton underware???? I'm wondering if maybe the underware has re= cycled garbage in it? now a days you never know. whats in a product.
I am making some progress being on a once a week diflucan. To supress any yeasty beasties. But This has taken 10 weeks, and only a 50 percent improvement. I'm going to get some calcium citrate and add that. I'm 50, so menopause may be complicating things. who knows? FOUR doctors dont! i just guess and ask ladies on the internet what they think. I have found they know more then the doctors anyway! for sure! cindy

grassy

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