Vulvodynia Support
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» Hope to all my suffering ladies
New girl from Nottingham EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New girl from Nottingham EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New girl from Nottingham EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New girl from Nottingham EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New girl from Nottingham EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New girl from Nottingham EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New girl from Nottingham EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New girl from Nottingham 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!
New girl from Nottingham 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


New girl from Nottingham

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New girl from Nottingham Empty New girl from Nottingham

Post  chachi Mon May 09, 2011 1:13 pm

Hello All

I have passed through this forum so many times & never become a member so today I thought I should.

I wondered if anyone else gets intense pain and soreness in their legs? For me, it feels like my skin is red raw & sort of itchy and prickly on my buttocks & vagina but mainly down the back of my thighs which is basically the bits of me that make contact with a chair! I haven't read anyone else mention this particular symptom so I wonder if it's something different to vulvodynia?

I know that I have vulvodynia, I have had it for about 6 years now. I did the usual two year trip around the medical disciplines before I landed back in gynae. I am currently taking amytryptilene (spelt wrong!) which does work but I still have break through pain. I am on 10mg a day or 20mg if It's really painful at night, I really could do with upping the dose but it makes me feel like I'm living in a cotton wool cloud as it is & it gives me the most AWFUL nightmares every night I feel terrible every day on waking just from the bad dreams. I would ideally like to stop taking it but I really dare not stop. I have tried all the other usual stuff too but that just made me a dribbling mess!

Anyway, thought i'd say hi.

Keep on keeping on ladies Surprised

chachi

Posts : 2
Join date : 2011-05-09

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New girl from Nottingham Empty Re: New girl from Nottingham

Post  Sarah001 Mon May 09, 2011 7:51 pm

Hi Chachi and welcome! The area of prickliness you're describing sounds more like the sciatic nerve to me, it runs through the buttocks and down the back of the leg and usually causes odd sensations as far as the knee but not lower but of course there are always exceptions to the rule. It doesn't supply the vulva however there are muscles that can press on both the sciatic nerve and the pudendal nerve which does supply the vulva, the piriformis is one trouble maker for both and the pelvic floor another. Tightness of muscles around he sit bones could also do the trick, I think a physio appointment if you haven't had one would be a good idea. They may send you for an MRI too to check the disks are ok in your lumbar area, been there done that *sigh*!

Anyway glad you joined us and welcome again.
Sarah001
Sarah001

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New girl from Nottingham Empty Re: New girl from Nottingham

Post  noni Tue May 10, 2011 1:26 am

Hey Chachi,

I can relate to your mention of odd sensations on the upper thighs. I get prickly or strange sensations where it feels like drips of water on my upper thigh Bizzzzare.

Anyways, Like you, I have found that Amitriptyline is the ONLY thing that has come close to taking the edge off pain. I am on 50mg but I could also go higher...and then go into la la land forever.

I actually went through my prescitption too fast and the Pharmacist was hesitant to re-fill my Ami. Well, what can I say...pain is pain.

Anyways, take care.

oh and welcome.

Smile
noni
noni

Posts : 242
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Age : 36
Location : Ontario

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New girl from Nottingham Empty PNE misdiagnosed as Vulvodynia?

Post  chachi Tue May 10, 2011 10:41 am

Hey noni & sarah,thanks for your replies. This is really odd actually but since reading sarahs reply I have done a little searching and I'm pretty damn sure I have been misdiagnosed! I think i have PNE it's actually like reading a text book on my symptoms. Apparently, it is often misdiagnosed as vulvodynia as there is vulval, clitoral and rectal pain with both. The tell tale sign with me though is the pain in the backs of my thighs, it's unbearable at the moment to sit down or having anything touching my thighs at all. How are we all supposed to carry on working thats what I'm thinking?! If i take the amitriptyline (which i do) I'm out of reality for most of the time and don't feel like i've got my head in the game, if I dont take them I'm in so much pain I need to spend the day laying down. It makes you grumpy being in pain all the time to.

Sometimes, I'll be honest, when I look to the future & imagine this pain for the rest of my life......I wonder if I can handle it. Also, I'm 37 & really want to have a baby ASAP but i'm terrified of the thought of 9 months and no amitriptyline, I'll have to do it I know but it's a horrible thought. Then i get to thinking....how will I be able to work if i'm pregnant and have no pain relief?! Anyway, rant over It's nice to know that you guys are out there and know exactly what I'm talking about.

I'm waiting for an appointment to come through for the specialist anyway so I'm going to take it up with him.....fingers crossed (deffinately not legs as it hurts!)

take care Very Happy

chachi

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Join date : 2011-05-09

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Post  noni Fri May 13, 2011 3:07 am

Im on the path of healing rather than curing, at this point anyways.

noni
noni

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Age : 36
Location : Ontario

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Post  itchyandscratchy Fri May 13, 2011 3:53 pm

Yeah I get that prickly feeling sitting on a chair, not as intense as you're describing though, and not as far down as my thighs, mainly just around the ass area...

*sets off to google PNE*
itchyandscratchy
itchyandscratchy

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Age : 34
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New girl from Nottingham Empty Re: New girl from Nottingham

Post  Sebby (Admin) Sat May 14, 2011 9:34 am


Welcome to the forum...deff do some research yourself. Im sick of doctors misdiagnosing either that or telling me its cos Im anxious!

I'm on Pregabalin (anticonvulsant) 300mg and for the first 6 weeks I did feel like I had started the day with a bottle of whiskey! The side effects have pretty much gone now and I have had relief from the more severe pain.

As for having a baby, yes I worry that if I was pregnanat how would I cope with no pain killers but to be honest if you really want one I believe that desire will give you the strength you would need to get through. Also I do wonder if being pregnanat would effect the symptoms? I mean my worst flare ups are just before coming on my period or just after so 9 months of no periods would suit me just fine lol

I also agree with seeking healing rather than focusing on cure.....even if I was never completley cured I would be happy just to have long term relief from the severe flare ups even if that meant I still got low level pain

Sebby (Admin)
Sebby (Admin)
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https://vulvodyniasupport.forumotion.net

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