Vulvodynia Support
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» Hope to all my suffering ladies
Girls, does your skin mark easily?   EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Girls, does your skin mark easily?   EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Girls, does your skin mark easily?   EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Girls, does your skin mark easily?   EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Girls, does your skin mark easily?   EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Girls, does your skin mark easily?   EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Girls, does your skin mark easily?   EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Girls, does your skin mark easily?   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!
Girls, does your skin mark easily?   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


Girls, does your skin mark easily?

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Girls, does your skin mark easily?   Empty Girls, does your skin mark easily?

Post  tinkerbelle2 Thu Feb 20, 2014 11:44 am

Try lightly scratching your skin e.g. inner arm and see what happens.

This is what my vulval dermatologist did, and when my arm came up very raised and red, she said this was very interesting. She said often this is the case in women with certain types of vulvodynia.

(Info from Wiki:)

Dermatographic urticaria (also known as dermographism, dermatographism or "skin writing") is a skin disorder seen in 4–5% of the world's population and is one of the most common types of urticaria,[1] in which the skin becomes raised and inflamed when stroked, scratched, rubbed, and sometimes even slapped.[2] It is most common in teenagers and young adults, ages 15-30.

The symptoms are thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas.

Dermatographia

Self-referential illustration of dermatographic urticaria
This weak membrane easily and rapidly breaks down under physical pressure causing an allergic-like reaction, in general a red weal (welt) to appear on the skin. It can often be confused with an allergic reaction to the object causing a scratch, when in fact it is the act of being scratched that causes a weal to appear. These weals are a subset of urticaria (hives) that appear within minutes, in some cases accompanied with itching. The first outbreak of urticaria can lead to others on body parts not directly stimulated, scraped, or scratched. In a normal case, the swelling will reduce itself with no treatment within 15–30 minutes, but, in extreme cases, itchy red weals may last anywhere from a few hours to days.

The underlying cause of dermographism is not known, and can last for many years without relief. Five percent of chronic cases are never solved. Increased incidence has been observed following prolonged exposure to microwaves.[3][4]The condition may subside and be effectively cured; however, it is often a life-long ailment. It is not a life-threatening disease and is not contagious.

Symptoms can be induced or worsened by periods of anxiety, physical stress, tight or abrasive clothing, watches, glasses, heat, cold,[5] or anything that causes stress to the skin.

She diagnosed me with UNPROVOKED and PROVOKED vestibulodynia and slight vaginismus (where vagina goes extremely tight and resists anything being inserted). She said because I have this demographic skin, it could be a contributing factor to my vulvodynia. I have burning pain around and very slightly inside the vulvodynia. So I have been having Aveeno oatmeal baths, washing gently with Aqueous & a flannel and wear nothing but stretchy black leggings and sleep in baggy PJs. The dermatologist scraped my arm lightly with the lid of a biro (I did wonder what the hell she was doing at first!) and about half a minute later it came up extremely red and took a few hours to wear off. I'm sure for most it would come up slightly red, but this was VERY red and inflamed. She said this may also be the case for my vagina even with very light pressure which is why she believes it is partially provoked. She recommended taking anti-histamines before sex and using lidocaine (although to be honest I'm not a big fan of lidocaine!).

Give it a go and see what happens as if you have the same result, it may be worth seeing a dermatologist too!


Last edited by tinkerbelle2 on Fri Apr 11, 2014 9:50 pm; edited 1 time in total
tinkerbelle2
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Post  Alana3 Thu Feb 20, 2014 12:11 pm

Nothing happened?

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Post  alessandria Thu Feb 20, 2014 4:57 pm

http://online.liebertpub.com/doi/abs/10.1089/15246090050073657

In this study, they found 27% of their vulvodynia patients had dermatographism, and 83% had irritant contact dermatitis! You're definitely onto something, Belle Smile

(FYI, in the paper, they treated dermatographism with oral antihistimines, and the contact dermatitis by figuring out the culprit and minimizing use of creams in the vulvar region, which they argue generally exacerbate symptoms).

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Post  tinkerbelle2 Sun Feb 23, 2014 4:59 pm

Alana, that's good that means you don't have this 'demographic' skin. Most women actually don't

Yeah, that's what my dermo said alessandria !
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Post  tinkerbelle2 Sun Feb 23, 2014 5:33 pm

Alessandria, that article says that no women in the study were treated with amitryptline, what does that mean? That's what I'm on now. T x
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Post  alessandria Mon Feb 24, 2014 1:45 am

Amitriptyline is a great drug for VVS and neuropathic pain in a lot of cases, tinkerbelle, but it's one that generally people are a little afraid of prescribing unless it's absolutely necessary. It is one of the few wonder drugs for vulvodynia and does cure some patients, so the risk is by all means worth it in those cases. But, TCA poisoning is a terrifying event, and one I'm sure your doctor warned you about extensively. You are very unlikely to get it just taking your medication as prescribed, but if people accidentally or intentionally overdose, it's BAD news. So, they mean that they are just are aiming to shift patients from a high risk therapy to a low risk one.

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Post  tinkerbelle2 Fri Apr 11, 2014 9:37 pm

Ah i see!... i'm weaning off it now, i was up at 75mg for about 3 weeks and got so emotional that me and gp both decided it probably wasn't going to work. May be worth giving lyrica a go next then ! x
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Post  Takver Wed Apr 30, 2014 6:21 pm

Yes, I have dermographism, which is a type of mast cell disorder. (It's nothing to do with the word "demographic", by the way!) I'm on two antihistamines, a proton pump inhibitor and an H2 blocker for it, which is controlling the symptoms reasonably well. By which I mean that I am no longer prone to getting an allergic-type reaction and passing out as as result of merely standing up. I'm not sure if the treatment has helped the vulvodynia or not. Being in a good relationship, and specifically a good sexual relationship, seems to be the thing which has helped the most.
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Post  tinkerbelle2 Mon Jun 16, 2014 7:43 pm

Oops, i was spelling it wrong lol :-) interesting how we both have it !!!
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Post  tinkerbelle2 Mon Jun 16, 2014 7:44 pm

Takver, what is a proton pump inhibitor and an H2 blocker ??xxx
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