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» Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia
Yesterday at 8:15 pm by WVR00

» What helped (and practically cured) my Vulvodynia
Yesterday at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Yesterday at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Hi New Member - so pleased I found this site x

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Hi New Member - so pleased I found this site x

Post  Jacky51 on Mon Nov 15, 2010 9:33 pm

Hi my name is Jacky and although not yet diagnosed after reading stuff on this site and the internet I am convinced I have vulvardynia.

Have been to see my gp this morning, although this was before I came across vulvardynia, didn't even know it existed until today. I am currently in constant pain and have been for the past two months when I began an episode of depression. I read on another site that anxiety can copnause the nerve endings during the fight or flight syndrome to trigger the pain.

How do people get on with sleeping? Currently I'm have to take a sleeping tablet. I am also worried sick about work I'm currently off due to depression but quite frankly if I am still in this much pain I don't know how I will be able to return.

Does anyone know of any specialists, pain clinics etc in London. I live in Chingford which is east london.

In a nutshell I have a burning sensation inside my vagina and also a sensation that there is something inside me like a tampon (is this also a symptom)?

I am unable to relax, read, watch telly, etc and feel like my whole world has collapsed. I have an appt with a gynae on Wednesday and just hope that she has some knowledge of this condition.

I anxiously await your replies on any advice, help, etc you can give me so that I can get my life back x

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Re: Hi New Member - so pleased I found this site x

Post  Mouse on Tue Nov 16, 2010 1:25 am

Hi Jacky, Welcome and I'm so sorry you had the need to find this site! But since you're here, you are in good company!

I also have the constant burning pain and was diagnosed with generalised unprovoked vulvodynia earlier this year... this means constant pain not to touch in my girl bits.

I found a sub specialist in vulval pain after I found my gynaecologist was completely useless. Her response was pretty much don't know/can't be assed finding out and no referral to someone who did. I researched and by pure luck found my new improved specialist. So my first piece of advice is a gynaecologist may not have sufficient knowledge - go figure, you may need to find a vulval clinic. Oh but further to that when I went to my GP months later she knew what I was talking about!

If you need information to take with you, we have plenty. I also have the printouts my specialist gave me. It pays to go with a list of questions to ask maybe even journal your symptoms until then. The more information you provide the better. I kept a journal of my pain - scale 1-10, diet, sleep hmm sex if that's possible, stressors which for me were coffee/alcohol/stress(?).

The next thing that worked for me was finding someone to talk too. This isn't in your head BUT your brain is where you register pain, unloading in a safe environment is really beneficial. So if you don't have one already find a suitably qualified therapist. I see a sex therapist which may sound a bit frightening but it makes sense really and also more likely to have the specific knowledge. I tell people she is my pain therapist though Smile

She has taught me how to do mindfulness meditation. Perhaps another strange concept to get your head around but believe me it helps with everything. I believe that to heal you need to work on the messages you are sending yourself.

I know that for some people this condition has been triggered by antidepressents which is kind of ironic that it's treated with the same - in fairly mild doses. I have heard of people feeling like there is something in there as well.

Vulvodynia basically means pain in the vulvar. There are dozens of conditions that come under that general umbrella.

I'm not sure what else to tell you. I'm in a fairly low pain phase at the moment. I've been concentrating on reducing stress, eating a really healthy diet (ahhhhhh), cutting back on coffee and alcohol (I'm only human otherwise I'd give it up altogether) and the meditation. It's sounds a bit OTT but it's a do anywhere solution which sometimes is as simple as taking a deep breath.

Good luck with the Dr and be kind to yourself, stress makes it worse!


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Re: Hi New Member - so pleased I found this site x

Post  Mouse on Tue Nov 16, 2010 1:30 am

Oh and note the day of your cycle as well. Often this follows a cyclic pattern with things getting nastier around your period or mid cycle. So if you know dates write those down as well Smile

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Re: Hi New Member - so pleased I found this site x

Post  Jacky51 on Tue Nov 16, 2010 7:25 am

Mouse
thanks for your prompt response. I am in a scarey place right now because after not knowing what this could be I now have the full sp and realise it is not going to be an easy road. My first gp told me it was in my head and it would go eventually once I learned to love the feelings!!!!! I am willing to try anything. Are you able to email or attach the info you have so I can take it to my appointment tomorrow. Also is there anything I can do myself to ease the pain asap. On a bad day it is 10 and I am in tears, my poor hubby doesn't know what to do with me! I had to take 2 sleeping tablets again last night to get some sleep.

I have been swimming nearly every day to help with my depression and now realise I have probably aggravated it, so won't be going again for a while. I certainly know that stress makes it worse because now that I am worried it has got more intense. Can anyone recommend any painkillers that might work that I can get on prescription or over the counter?

I really am desperate.

Jacky x


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Re: Hi New Member - so pleased I found this site x

Post  Mouse on Tue Nov 16, 2010 8:33 am

Hi Jacky,

Oh my goodness! That sounds horrible. I've attached some info for you to read. It sounds like you have something similar to me but believe me most people are unique. I don't know about pain relief but someone will.

There are a lot of simple things you can do, take away anything that may make things worse - try fully cotton underwear, no soap down there for now, be careful with laundry powder, tight clothing may also make it worse. Forget the swimming for now and try some exercise (if you can, endorphins are important Smile) without chemicals until you get the pain under control. If you start a journal (I'll send you that as well) see if you can identify trigger foods or drinks. I know when this started for me as soon as I had a wine/coffee or got stressed I got an instant zap. I guess because it's a nerve pain.

It all probably seems like one big mess but there is a way forward. You need to find someone to treat you. I really hope the Dr you see tomorrow will be the one. I know a lot of people see a number of Drs before they find one who has the right knowledge. I was REALLY lucky, it ONLY took me 4 months to find someone who didn't think I was barking mad. I would really recommend finding a therapist. I was absolutely furious when this was suggested to me, I'm happy to say now it's been the best advice to date.

Are you already taking something for the depression? Antidepressents are commonly prescribed in low doses to treat vulvodynia. Amitriptylene, Notriptylene sometimes Gabapentin.

Let me know if the info doesn't come through and I can email it to you.

Take care

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Re: Hi New Member - so pleased I found this site x

Post  Jacky51 on Tue Nov 16, 2010 8:46 am

Mouse

I don't seem to be able to see the attachment can you email it to me at jacky.potts@ntlworld.com.

Many thanks, I am going back to my gp today to ask for some amyil which may help. I've googled it and apparently you can take small doses for pain alongside your normal anti depressant and it should also help with sleep.

Thanks for your help, it is so appreciated. By the way no trigger with foods, lost over a stone in weight due to lack of appretite

Jx

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Re: Hi New Member - so pleased I found this site x

Post  Sarah001 on Tue Nov 16, 2010 8:30 pm

Hi Jacky, I find 50mg of Amitriptyline each night helps me sleep, some nights I even can't sleep on that but mostly I do. It's also supposed to help with the burning, my pain is mostly soreness so it hasn't helped my pain as much as I'd hoped but at least I can sleep. I have to admit I haven't heard anyone else mention feeling like something is inside but that doesn't mean it can't happen, have you been checked for a prolapse with that sensation going on? Anyway, welcome to the forum.
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Re: Hi New Member - so pleased I found this site x

Post  Sebby (Admin) on Tue Nov 16, 2010 8:46 pm


Hi and welcome Jacky,

I have been seen in a pain clinic at King Georges hospital in Goodmayes Essex and found them to be understanding.

They feel with me it could be the nerves so im due for a nerve block injection on 23rd December...early xmas present? lol

I also use a tse machine, similar to a tens and am finding it helpful

I suffer anxiety and am on medication and also see a therapist. I have found the therapy to be more helpful than the meds.

Also I wear only white cotton knickers and wash them with no washing powder on 90c to kill any bacteria. I also wear a long skirt indoors with no knickers and do not wear any knickers in bed. This helps a lot

I also only shower and do not sit in the bath and just wash the vulvar area with luke warm water.

When pain is bad I take 15mg co-codermols just when and if needed. I am not going on Ami as I am already on an antidepressant that im currently trying to cut down and have not yet tried anti-convulsants for the same reason..I have too many drugs in my system already!

I would be interested to read the site that talked about anxiety and nerve pain. Do you remember which one this was?

I have read up some reaserch mainly from Vulvodynia Survival Guide that show NO correlation between mental health issues and vulval pain.

I would like to point out that I have had it said to me many a time that its my anxiety or my head that is causing it. The research ive read dispute this and have often found drs say this mainly cos they do not understand the condition, they cannot be bothered or think you are making it up!

I would be intrested tho if any other research can prove a link...im open minded!

Take care and let us know how u get on with the meds

Sebby
xxx
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Re: Hi New Member - so pleased I found this site x

Post  Mouse on Tue Nov 16, 2010 8:57 pm

Hey guys,

It took me a while to remember where I read the foreign body info - don't we read so much!!!

Anyway it's a symptom of pudendal neuralgia or pudendal nerve entrapment. As we know the pudendal nerve is the demon in all of this.

http://www.wrongdiagnosis.com/p/pudendal_nerve_entrapment/symptoms.htm

I hope that's helpful.

Take care xx.


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Re: Hi New Member - so pleased I found this site x

Post  Sebby (Admin) on Tue Nov 16, 2010 9:18 pm


Thanks so much mouse!! I will deff read!! Very Happy
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Re: Hi New Member - so pleased I found this site x

Post  Jacky51 on Wed Nov 17, 2010 12:33 pm

Te hanks for all your responses. Have the gynae appt this evening so am hoping she may be able to hope I just hope she has some experience with vulva pain. My gp has confirmed that I have a small prolapse but doesn't seem to think it is big enough to cause the symptoms I have. How were you all diagnosed. I have read that lots of women get this following a bout of thrush or something similar, but I didn't have anything, it just came from nowhere!

I will def be talking to my gp about amil or something similar.

Mouse, I am already seeing a CBT Thereapist and doing mindful neditation but am struggling if I'm honest. I def know that stress makes this worse because when I get anxious the pain increases so I am trying to relax and go with it which is difficult.

I will let you all know how I get on.

Jx

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Re: Hi New Member - so pleased I found this site x

Post  Sarah001 on Wed Nov 17, 2010 1:38 pm

I do know from my research that a prolapse can cause vulvodynia as it causes a descent of the pelvic floor which stretches the pudendal nerve and irritates it so it might be worth asking about that at your appointment tonight.

I had a suspected UTI with my initial symptoms but tested negative for infection although I had blood in my urine. Some women do start with no infections whatsoever though, it depends what the cause is. In the case of pudendal neve problems it wouldn't need an infection to set things off.

Hope your appointment goes well and let us know how you get on.
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Post  Jacky51 on Wed Nov 17, 2010 5:30 pm

I have to say after reading all yours posts I am now very scared. Have all of you had to give up work because of the pain? I have a really senior job in local govt and although I will get good sick pay the thought of not being able to go back terrifies me. Have any of you managed to get to a position whereby the pain is bearable. I know I am still in a depressed state of mind at the moment but this is helping to keep me there, I should have been well on the road to recovery by now. Would my depression exacerbate the pain? I can't quite get my head around it all.

If I do get diagnosed with it what do you suggest I do next in terms of treatment. Obviously I will go straigbt back to my gp, should I be suggesting meds to her. Thankfully I have private healthcare through my husbands' employer so can get referred quickly. Should I go to a pain clinic? Sebby is the one in Goodmayes NHS, do you know if they do private?

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Re: Hi New Member - so pleased I found this site x

Post  Mouse on Wed Nov 17, 2010 7:49 pm

Hi Jacky, fingers crossed your appointment went well and you have some idea of a treatment plan. I don't think there is any magic solution but there are things that help. What works for some doesn't work for others because we all seem to be fairly unique but the basics are the same. I know that reducing stress seems to be working for me. While I gave up work it was more that my contract finished and I've chosen not to look for work until the New Year. It's summer here and I live at the beach so I've been wandering down there with the dog - there's a really funky coffee caravan that puts out old retro lounger chairs so it would be rude not to sit for a while. Smile

As far as the drugs go I couldn't cope with the foggy brain and increasing the dose frightened the bejesus out of me so I stopped. I haven't told my specialist yet, my GP isn't that pleased and wants me to try a different one, my therapist is fairly happy. I also have an auto immune disease that has had me in a fug so clearing my head was important.

I can't wait to hear how you got on - I've crossed everything that you got a good response. I had a hard job not hugging my new improved specialist which was a huge contrast from the gynae who preformed my surgery which triggered this mess in the first place. I had a hard job trying not to hug her further up with my bare hands... especially when her only suggestions besides a therapist (cos you're clearly crazy) was take evening primrose oil.

Whatever happens give the Mindfulness another go. Try the guided ones I posted or download some, just stopping the world for a while can help.

xx.

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Re: Hi New Member - so pleased I found this site x

Post  Sarah001 on Wed Nov 17, 2010 8:26 pm

I had to stop working years before the vulvodynia as I have Hypermobility Syndrome (I don't make strong enough collagen to support my joints so they continuously dislocate) and Fibromyalgia which has no doubt been caused by the extra work my muscles all have to do in the absence of healthy ligaments so it wasn't the vulvodynia that stopped me working. I have to say I haven't found pain meds that help yet and I'll soon be starting on Gabapentin alongside the Ami so we'll see how that goes. Pain meds are important as breaking the pain loop can help normalise the central nervous system, if you like meditation it can be relaxing but it's not for everyone, you could get your pelvic floor checked out although with a prolapse present I'd hazard a guess it's weak rather than tight but strengthening it could well help. I wanted to avoid pain meds in the beginning but I just have way too much pain to cope without them so I'm ok about taking them now, I would say if you take Ami give it a month or so to see how you get on as the side effects usually settle in most people over that period of time, I have no drowsiness from it whatsoever anymore and in the beginning I was totally woozy on just 10mg, I now take 50mg and the only side effect is a dry mouth.
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Re: Hi New Member - so pleased I found this site x

Post  Sebby (Admin) on Wed Nov 17, 2010 8:57 pm


Hi Jackie

I too work in local government and have not had to give up work. I manage. I have a soft cushion for my chair and take painkillers if pain is bad.

My line manager is very understanding with my various hospital appointments.

I am hoping I dont have to give up work but to be honest I cant see that happening as if I am managing the pain now I can continue to do so.

I also have a therapist who helps me to work through the anxiety, distress with the pain and keep me at work

Try various treatments and see which one works for you

I hope this helps

Sebby
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Re: Hi New Member - so pleased I found this site x

Post  Jacky51 on Wed Nov 17, 2010 11:15 pm

Well met lovely consultant tonight who confirmed I have a larger prolapse than originally thought hence the sensation inside and vulvodynia. She took some swabs, has arranged a scan for tomorrow and I've been prescribed Ami 10mg to start with, increasing slowly up to 50mg. Also steroid cream and Lidocaine. Immediately came home and put that on, but hasn't seemed to do much good. Also Ami doesn't exactly seem to be knocking me out either! Best not take a sleeping tablet as well ay!

I'm just hoping this is going to work for me, otherwise she said pain clinic for a nerve block. If I can get it to a manageable level I would be happy right now.

Mouse - sounds positively lovely where you live. I have relations in Wanaka, that anywhere near you?

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Re: Hi New Member - so pleased I found this site x

Post  Mouse on Wed Nov 17, 2010 11:48 pm

Oh I am so pleased for you!!! It's not always easy to find the lovely ones. It sounds like you have a lot of options as well.... phewwww!

The best thing with the Ami is sleeping like a baby! Good luck with that, it's a huge bonus. I found in the early days when I couldn't sleep it gave me time to realise all the positions I couldn't sleep in.

Wanaka is particularly beautiful, I wish I did live there! It's inland towards the bottom of the south island and has a beautiful lake. I'm in the north island and on the coast. It's a little slice of paradise in it's own right though. We have an amazingly beautiful mountain to gaze at and the coastline is stunning. We even have some white cliffs. My family are from Cornwall and I imagine it's a similar rugged coastline.

Good luck with your scan. I had one on my ovaries earlier this year it wasn't so bad. What are your options with the prolapse?

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Re: Hi New Member - so pleased I found this site x

Post  Sarah001 on Thu Nov 18, 2010 2:26 pm

It might be a good idea to have a word with a women's health physio about strengthening the pelvic floor to improve the prolapse and the vulvodynia, it does seem that's the likely source of your pain. I'm glad you found someone you like but I know what you mean about the steroids and lidocaine, I found them useless too. If it's a muscular problem causing the pain though they often don't help. With us women who have tight pelvic floors they are usually weak too so strengthening is part of the plan for that problem too so it's a good place to start.
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Re: Hi New Member - so pleased I found this site x

Post  jules on Mon Nov 22, 2010 4:27 am

hey jacky...there is hope.

i work a full-time job and always have throughout. there was time where it was very tough, but once i got the right mix of meds, it became far more manageable. i, too, have to sit on a foam cushion otherwise i would be in bad pain. good luck w/ the ami. i have not tried that medication.

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Re: Hi New Member - so pleased I found this site x

Post  helen4444 on Wed Nov 24, 2010 11:17 pm

Hi Jacky,
Really sorry to hear about these awful symtoms - god it reminds me so much of when I was at my worse. My Gyno now works at St Thomas's in London - not sure wherein London that is- He is called Geoffrey Lane,really good , diagnosed me in 5 mins. He also has a special interest in vulval conditions.I would defo recommend him - I actually ended up going to see him private as waiting list quite long.Got to see him same day when enquired about appointment.Was put on Amitriptyline and got some relief within a week.
Ask your GP about neropathic pain , he should know to start you on an appropriate drug even if not 100% sure it's vulvodynia it's worth a go!!
I know as we all will, how you are feeling - you need to get sorted.

Take care
Helen

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Re: Hi New Member - so pleased I found this site x

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