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» 7 months since the diagnosis
Inflammation Theory EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Inflammation Theory EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Inflammation Theory 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!
Inflammation Theory EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Inflammation Theory EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Inflammation Theory EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Inflammation Theory EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Inflammation Theory EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Inflammation Theory

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Post  noni on Mon Feb 21, 2011 3:39 pm


I found this on a website...

The experts tell WebMD that among the many theories about what causes vulvodynia, the most likely is a response to tissue abnormality, possibly caused by infection, irritation, or trauma long after it's been resolved. "I think most people believe this is chronic regional pain syndrome, or CRPS," says Glazer. "It was first noted in the Civil War as a consequence of buckshot wounds." He explains that when soft tissue gets irritated or damaged, the body activates a number of defenses. The tissue becomes inflamed and puffs up like a protective pillow to prevent further contact. New nerve endings grow and become hypersensitive so they can detect further contact and withdraw. Blood vessels in the area shut down to prevent possible infection from traveling to the rest of the body. Finally, muscles go on the defensive, producing spasms in the pelvic floor which reduce blood flow and produce further inflammation.


Glazer says treatments reflect the components of the self-protective mechanisms, so anti-inflammatory drugs, such as high-potency steroids, antihistamines, or Cox-2 inhibitors are often used. Tricyclics, which are mainly antidepressants, as well as anticonvulsant drugs, often work to relieve pain. Topical nitroglycerine may be used to open blood vessels.











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Post  Sebby (Admin) on Mon Feb 21, 2011 9:50 pm


Thanks Noni

This is one of the main theories im looking into. Will be starting biofeedback in order to re-train the pelvic floor. I have to take anti-histamines anyway for my hayfever due to start soon! I also get asthma with hayfever so unfortunatly cannot have anti-inflamatorys. Tried shop bought ibroprofen but it doesnt help. The stronger ones they gave me had to go up my bum! lol I had one at night and one in the morning and the first day I felt so sicky I coudnt carry on! Im on the pregabalin at the moment so time will tell if it works.

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Post  noni on Mon Feb 21, 2011 10:19 pm

Hey Sebby Smile

This V thing just has me baffled....have been doing some reading and some women use NSAIDs (non steroid anti inflammatory drugs) to treat Vulvodynia.

But they have a lot of side effects...they can basically destroy your stomach and gut....cause stroke and heart attacks....yikes

Which is worse the V or the treatment ?
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Post  coralburn on Fri Mar 18, 2011 2:48 am

This is really interesting... I have other problems with inflammation so the theory seems like it could make sense. I wish it explained how well the treatments worked, though--I've been on NSAIDs for about a year and I'm getting worse.

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Post  Sebby (Admin) on Sat Mar 19, 2011 8:28 pm


Im currently doing Glazer's biofeedback home training and so will let you guys know if I do get relief from if. It will take many months to know tho and Its only been 3 weeks

The training is to get the muscle stabalised so it refrains from the guarding state and allows oxygen and healing chemicals to flow back to the vulvar.

The only thing I noticed was that over the last couple of days I had a flare up and at the same time my pelvic floor was so weak I couldnt contract very well at all! Now the strength has come back and the flare up is calming. I really have no idea if this is significant or if its a coincidence??

I'll keep note tho

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Post  Coldchris on Thu Jun 09, 2011 6:59 pm

I am seeing a specialist for my vestibule that is very inflammed and red. He believes it was a hyper immune response to an infection (likely yeast from antibiotic use). On a strong steroid cream. He is a vulvar specialist and I think he has got it.

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Post  Lindilou on Wed Feb 15, 2012 11:41 am

So when you have what feels like thrush but isn't it's the vv, what do you do, how do you releive it?

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Post  noni on Wed Feb 15, 2012 11:48 pm

I am on meds for V (elavil)....but sometimes when the irritation is horrible and theres a rawness/burning feeling down there, I apply Lidocaine 2%.

I know its scary to put things down there, but it has helped me and theres always the trusty icepack.
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