Vulvodynia Support
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» Hope to all my suffering ladies
sick and now flare up!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
sick and now flare up!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
sick and now flare up!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
sick and now flare up!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
sick and now flare up!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
sick and now flare up!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
sick and now flare up!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
sick and now flare up!! 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!
sick and now flare up!! 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- …

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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 …

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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 …

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sick and now flare up!!

+2
naomi
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Post  Sebby (Admin) Mon Nov 08, 2010 9:50 pm


Cor dear..week from hell!! started off with cold which then turned into throat infection which then turned into tonsilitus!! I have never felt so sick in my life!!

Then got mouth ulcers so was drinking tea through a straw! cos most where on inside of my lips! I cant live without my tea..

Then hey presto really bad pain flare up! methinks it could be linked to not only being run down but also not having done the tse machine for like 5 days..I just mainly lay on the sofa crying and watching telly.

So back to using tse machine today and lets see if pain reduces? if it does the maybe my pain is a nerve thing????

Oh I forgot..what a fucking shit week!!! lol sorry I had too

Sebby
xxx
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Post  naomi Mon Nov 08, 2010 11:24 pm

ohhhhh honestly!!! someone up there's having a right old laugh at us aren't they!!?!

Loads of people I know have come down with the same viral bug. I'm still not 100% as I got rid of poooey tonsilitis and now the last few days Ive bagged a cold....bastard! URghhhh nasty, especially as I went away for a family break and stayed in bed the whole bloody time in the log cabin whilst they galavanted around the countryside!! not fair Sad

These things are sent to try us...I think im all tried out dammmit!

Time for a holiday?!!

Did u take some time out of work Sebby? I hope so as u r working too bloomin hard missy!!
naomi
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Post  Sarah001 Tue Nov 09, 2010 2:48 pm

I hear ya Sebby and feel rotten myself right now. The TSE machine works the same as TENS in that it is supposed to alter pain signals so it doesn't tell us why the pain is there but all pain is transmitted up the spinal cord in the same way so could be nerves, could be muscles or could be well, anything that causes pain really! I've suggested to Naomi the book called Heal Pelvic Pain by Amy Stein, it's a good place to start if you're not seing a Women's Health Physio as it's full of practical advice. It's not expensive and readily available on Amazon. It starts to teach you to relax the pelvic floor and has some good exercises to help with that, in particular look out for the isometric thigh press, it's a good place to start!
Sarah001
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Post  jules Thu Nov 11, 2010 5:20 am

My Gosh...you sick folks across the ocean. I hope you all feel better soon. The only sickness i have right now is this damn Vulvodynia. ouch, ouch and ouch. i am home for the next four day. tomorrow is a holiday-Veteran's

Vulvodynia report: i am starting biofeedback next week. i have met weekly w/ a p.t. last week she massaged my pelvic wall muscles. now, when i go in for a message..i usually request the upper or lower back. I can honestly say i have never had a message inside of my vagina. ha ha! i am working on breathing, relaxation. she tried a ultra sound wand last week (no difference for me). i am working on strengthening my core muscles. I have used my TENS machine a few times. it is difficult to wear to work w/ all the cords that hang out of your pants etc. i plan to use the TENS this weekend, like Sebby. I also am considering going off Lyrica (i have gained about 10 lbs and i really don't know that the lyrica helps me anymore). I am thinking about trying Cymbalta. Has anyone tried that. It is also known as Duloxetine.

I may by stock in Vicodin. i sure take it all the damn time. The good news is...i am working out these days. probably creating more pain for myself. i haven't had to have sex for about a month (yipee) and the hubby has stopped beggin for now.

hope you all feel better very soon!

jules

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Post  Sarah001 Tue Nov 16, 2010 8:38 pm

Thanks jules, I was a bit of a muppet actually and didn't go to the docs until I was too ill to drive myself! Embarassed I'm asthmatic so should know when I cough all night every night, my lungs feel like they are trying to burst out of my ribcage and I whistle when I breathe in and sound like I have a death rattle when I breathe out I really ought to get some antibiotics!! I'm a few days into them now and feel alot better in the chest infection department! Rolling Eyes

I think I've put on about 5 lbs from the Ami which everyone keeps saying isn't bad as lots of people put on a couple of stone in a very short space of time with it but I didn't want to gain weight, I was perfectly happy at my previous weight and had been for 10 years so I'm not happy about that. I haven't even been and asked for the Gabapentin yet and really should get myself organised. Haven't tried any of the others you mentioned though, over here in the UK we get given cheapest first and work up to anything more expensive/more suitable so it'll probably be years before they consider anything else for us!

Let us know how your biofeedback goes, I can't wait to find out what your resting is!
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Post  Sebby (Admin) Tue Nov 16, 2010 9:12 pm


Hey guys and thanks for your replies..am still feeling blocked up and stuffy but the tonsilitus has gone.

I was off work for the first week (got sent home on the Monday) am back at work now but am still not 100%

I have some vitamins to take now so I had best remember to take them!!

I will also have a look at that book you suggested Sarah..thanks..I'll have to raid Amazon lol

Jules let me know how bio-feedback goes and Naomi hope you feel better soon too...can't believe how long this bug is lasting!!!!!

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Post  Mouse Tue Nov 16, 2010 9:17 pm

I put on heaps of weight with the Ami! I talked to the practice nurse at my Drs surgery about the weight gain, she said Oh there's nothing we can about that you chubby wee thing... I punched her. No not really, it was over the phone I just made a face and had some bad thoughts.

I've kicked the Ami and the Gabapentin now and still feel like I'm getting bigger by the second... grrrr how is that fair?

I hope you are feeling better Sarah. The drug game is the same in New Zealand, cheap and cheerful first and then work up to the "good stuff". I offered to pay the difference... ahhh that's still a no, it's breaking some well thought out regulation no doubt made by a man without a pain in his genitals.

In a related story I suggested my husband put his precious bits in a vice so he could experience my pain - he's not keen No affraid

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Post  Sarah001 Wed Nov 17, 2010 2:21 pm

Funnily enough I know a man who has a similar kind of problem in his testicles, he told me about it years ago and I'd forgotten until recently but they've never managed to get him back to painfree status either and have gone down the drug route, then nerve block route etc and he hasn't found any answers. His started after surgery for a hernia so I bet they damaged something while they were in there.

I have heard that Ami can increase the appetite while also slowing down the metabolism, it hasn't increased my appetite but it must have messed up my metabolism to make me put weight on. I normally don't gain weight regardless so I hate it and no matter how much I starve myself it isn't coming off either. Recently when I was ill I had trouble forcing myself to eat even a slice of toast and a bowl of soup each day and I still didn't lose any weight! Normally that would have made me drop several pounds instantly. I'm not yet what you'd term chubby but I still don't like it.
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Post  Mouse Wed Nov 17, 2010 8:57 pm

It's funny (hilarious really) that mine started after surgery as well. My gynae was very quick to say she didn't touch the pudendal nerve. From what I've read, surgery along with a lot of other things can trigger a nerve pain.

I was sick for 10 days and barely ate when I was on the ami but when I went to the dietitian I'd still put on weight!!! How the hell does that work? The weight hasn't shifted since I stopped either. I wouldn't mind but one boob is significantly bigger than the other now. I'm just lucky the circus no longer sets up at the end of my street, with the hair that's started sprouting on my chin and my huge left boob!

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Post  Sarah001 Wed Nov 17, 2010 9:15 pm

I know I shouldn't be chuckling about your "huge left boob" but well, I am! At least my boobs are still fairly equal!! Maybe you should write a book about vulvodynia and call it "my hairy chin and huge left boob", I'm pretty sure it would generate some interest!!

I hear you about the Ami though, if the weight gain doesn't stop I'm asking for a change of meds, my rickety dislocating joints can't handle excess chub!
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Post  Mouse Wed Nov 17, 2010 9:43 pm

It's pretty funny! I keep looking down and thinking that can't be right ...but it keeps busting a move out of my bra.

I might have to write a series of books. My coeliac one is going to be called "Stick your salad up your ass". Every cafe I know thinks gluten free is the same as vegetarian - well I've done a survey and those bastards still get to eat the F$%*@N cake!

I lost over 3 stone last year when the coeliac thing kicked off. I got to see my skeleton from the outside - freaky. It's because there is an auto immune response to gluten that has anti bodies attack the place where food is absorbed which results in malnutrition. I really watch my diet now obviously because I can't eat nearly everything on the planet but also because the weight came back and wanted to bring some it's mates. I didn't need the Ami cocking that up as well.

Owww and you'll love this, the bartholins abscess "may" have been caused by the immune system being compromised and the subsequent surgery triggered the vulvodynia!

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Post  Sarah001 Thu Nov 18, 2010 2:36 pm

I used to work with a woman who had coeliac disease and if she got any wheat or gluten at all she was really ill, it strangely went off when she got pregnant with her first child though and didn't come back. Weird. My immune system has gone AWOL this year, I've had to have 3 courses of antibiotics so far this year which is more than I've had for the last entire 10 years so I'm not sure what's happening there. I've been tested for auto immune antibodies and don't have any but I know some people class Fibro as an auto immune problem. I've started drinking a shot of wheatgrass each day as it's supposed to improve the immune system and I don't think it tastes too bad either!

I think if it started after surgery for a Bartholins abcess they must have irritated nerves in the skin where they excised it, it may calm down on its own given time though, you never know! Or it could be scar tissue that's irritating the area, a friend of mine had a kidney transplant and he had some weird sensations afterwards and it was scar tissue causing them which a physio sorted out.

Maybe I should write a book about Hypermobility Syndrome and call it "stick your cod liver oil up your ass" seeing as everyone else seems to need more mobility as they get older and I just get more and more bendy!

I planned on going to get the Gabapentin today but set my alarm to make an appointment then promptly fell back into an Ami induced coma so didn't make it! Rolling Eyes
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Post  Mouse Thu Nov 18, 2010 8:18 pm

Ohhh the Ami induced coma, I did like those... not waking up in the day, not so much.

The surgery also made my pelvic floor angry, I have bunched up muscles on the left side (?). I've been a bit scared to investigate that further although there is a physio in my street (I can actually see her arriving at work most mornings!) who someone I know went to after she had damage from childbirth - UGH. My specialist said the surgery triggered the nerve pain and in a great show of professional solidarity agreed that the nerves wouldn't have been touched during surgery... hmmm. Of course my therapist says it's an intrusion on my most private parts and the body may have something to say about that Smile

I wish Coeliac Disease could go away but it's auto immune so in the same family as type 1 diabetes. The only known "remedy" is a lifelong gluten free diet. It does however start from gluten intolerance which is not auto immune. The thing with this tricky little sucker is it doesn't always cause gut problems it can have no symptoms at all and not absorbing any nutrients causing oesteo, infertility, cancer etc. There are about 200 other conditions linked to CD. I'm hoping I don't get diabetes as the added extra, I had gestational diabetes when I was pregnant. That was no fun, the diet for that according to my Dr, was basically "anything you like you can't have".

My theory with the low tolerance to drugs is that I have a low tolerance to everything now. I can be absolutely ratfaced on one glass of wine and that ain't pretty. You should try the Gabapentin, it doesn't have the sleep feature though.

In a related story I have been writing, some of it's a bit angry!

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Post  Jacky51 Thu Nov 18, 2010 10:17 pm

Can you take Gabapentin at the same time at Ami? How long does it take to work?

Jx

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Post  Sarah001 Fri Nov 19, 2010 1:54 pm

What I've been told is to take it alongside the Ami and start at 900mg a day with a view to working up higher if I can tolerate it and if it helps the Ami will be reduced but not completely stopped. I believe it's much the same as the Ami in that it can take weeks for it to work and some people need the maximum dose to get any benefit from it. It seems to have alot more side effects than Ami though and the only people I know who've been able to take it ok is Jules on here and one other person on another forum, the majority have problems with vision and muscle control which I can't afford to let happen to me as my muscles are very problematic anyway. I'm going to the doctors to ask for it today and I'll see what happens from there.
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Post  Jacky51 Fri Nov 19, 2010 5:47 pm

OK good luck and thanks for that x

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Post  jules Mon Nov 22, 2010 3:58 am

OK..JULES is back. I am on gabepentin and i have had zero side effects. i started off w/ 100, then 300, then 600 and so on. i had no dizziness and no weight-gain. i am on 2700 milligrams. yes, it helped significantly, but not completely. i added lyrica to the mix several months ago and then increased the lyrica up to 300. since then i have gained weight. the pain did decrease significantly..i was finally able to work out w/out burning pain. but..i gained weight and went up a pant's size. k..i was thin to begin w/ and i am not chubby but i don't want to keep on gaining from the Lyrica. i am trying to taper off, but the pain is coming back.. i think i might have to accept the higher weight and less pain. i was hoping to try Cimbalta rather than the Lyrica (doc. appt in 10 days). i don't know if Cimbalta has been tried on Vulvodynia. it's an anti-depressant that is used to treat Fibromyalsia. so...gabepentin and lyrica both can help. for me lyrica may have caused weight...or it could be all the eating and drinking i have done lately...????

as for the biofeedback. i had my reading done again in physical therapy. my resting rate is 0. my walls are calm. the P.T. did feel my walls and felt some tightness. she sent me home w/ a vaginal dilater. she wants me to stick this dildo shaped thing inside of me and push it up against my walls for 10 minutes a day...geez, if i don't want a cock inside of me, why would i stick this thing inside of me? she said once i get used to this one, she will give me a bigger one..goodie, i can't wait!

jules

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Post  Sarah001 Mon Nov 22, 2010 2:27 pm

Wow that's a low resting tone! It doesn't sound like a tight pelvic floor is anything to do with your problems does it? It's weird too that Dr Glazer said vulvodynia always causes hypertonic pelvic floors and yet I know of a couple of other women who have got low resting tones but still have the problem. Did they test your slow twitch fibres to make sure it wasn't weakness that was the issue? I know in my case the slow twitch fibres were barely working but my fast twitch fibres were very strong and creating the high resting tone so perhaps your pelvic floor could be too weak? My physio says it should be at about 2-5 and she never sees anyone with 0 because that would lead to a loss of support.
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