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» Hope to all my suffering ladies
Any advice on with amitrytline? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Any advice on with amitrytline? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Any advice on with amitrytline? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Any advice on with amitrytline? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Any advice on with amitrytline? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Any advice on with amitrytline? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Any advice on with amitrytline? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Any advice on with amitrytline? 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!
Any advice on with amitrytline? 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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Any advice on with amitrytline?

+4
bluejean
MLily92
Caropes
Sparkle
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Post  Sparkle Mon Oct 06, 2014 9:00 am

Hello,

Anyone tried this in pill form? What's it's like? What side effects have you had? This is next on the list for doc to percribe me for my vestibular vulvadynia but I'm worried about the side effects.

Also did it work with anyone with provoked pain?

Any advice is much appreciated. X


Sparkle

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Post  Caropes Mon Oct 06, 2014 11:26 am

I am currently on Ami at 50 mg/day. I started Ami after Trying Gabapentin. The GABA alone was not enough. Once I started Ami! It brought my pain levels down to a tolerable level. My side effects have been a 20 pound gain in weight and some brain fog, but it did help! Everyone is different but I have seen many benefit from Ami. Worth a try??

Caropes

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Post  Sparkle Mon Oct 06, 2014 11:38 am

Ok that's good that it's brought your pain down. just a shame about all these side effects! What vulvadynia do you have? And how long have you suffered with it?
Im worried about it cos of seeing it causes drowsiness and I previously had taken anti depressents(not for vulvadynia) and I had to come off them cos I cuouldnt function at work proparly and felt paranoid and very tired. I also don't wanna gain weight cos this condition is bringing my confidences to an all time low :-( I also heard these can ruin your sexual relationship even more then this condition does already. An area I'm really struggling with at the minute... I heard that you can find it impossible to orgasm and you have no labido. Sorry for TMI! Which was side effect of the anti depreasents I used before too. Im really struggling at the minute with all this and the things we can do (me and my BF) is helping to keep me strong. I don't wanna take anything that will take what little I have left away from me...

Sparkle

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Post  Caropes Mon Oct 06, 2014 2:30 pm

I have unprovoked Vulvodynia/vulvar vestibulitis. I have constant burning pain 24/7. I have been on antidepressants before. Ami doesn't have the same side effects for me. My libido is good ... not that I want to have sex with all the pain!! I was sleepy for the first few weeks I was on Ami, but that sort of went away. My dose is 50mg. I think it acts as a anti-depressant if it is taken at higher doses. The weight gain does suck but from the place I was at before taking the meds (practically suicidal) to now is so much better. I would give it a try, you can always stop if the side effects out-weigh the benefits. Good Luck!

Caropes

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Post  Sparkle Mon Oct 06, 2014 3:23 pm

It must be so hard for you to have to deal with this pain all the time...I feel for you :-( How old are you?

Yeah your right I guess if I don't like it then I can stop taking it. I'm jist a bit worried about it affecting my work. I have to be on the ball at work. So maybe I should try them at the weekend first off all. I've got a few weeks yet to deside as atm I'm just using lidocaine and I've got the creme form amitriptyline 2% both Mixed together waiting for it tho from pharmacy. Do you take anything else?

Sparkle

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Post  Caropes Mon Oct 06, 2014 4:12 pm

I am 46 and was diagnosed with vv about 6 months ago. It happened after being treated for a yeast infection and bacterial infection back to back. Luckily, I do not work. What dose of Ami were you prescribed? My Dr. started me out at 50mg but I have read a lot of women start at just 25mg and still have good results. What type of job do you have? Where are you from? I live in Alabama in the US.

Caropes

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Post  Guest Mon Oct 06, 2014 4:46 pm

I've been taking Amitriptyline for about 15 years, I take 60 mg a day I also take Gabapentin, Vesicare, & Impramime

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Post  Sparkle Mon Oct 06, 2014 5:11 pm

How long did you have it before you was diagnosed?

I think that's how mine happend too, I started getting pain after having a bad few yeast infections and I have BV twice.

She hasn't told me the dose yet. I'm trying this creme for a month and taking calcium citrate vitamins aswell and I brought some Vit E oil & coconut oil to rub on myself and fish oil tabs to try and help pain naturally but then she will put me on ami when I go back if I want to. She offered it last time but i said no bcos I wanted to look more into side effects. Cos u get provoked pain maybe I will have the lower dose?

I have an office job but it's quite stressful and I need to be alert or I'll make mistakes. I like in UK, England.

Sparkle

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Post  Sparkle Mon Oct 06, 2014 5:13 pm

Hello des,

How did you get on with amitriptyline? Do all those meds help with your pain?

Sparkle

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Post  Sparkle Mon Oct 06, 2014 5:15 pm

Sorry in my above post I meant to write I have provoked pain, not u! Silly spell check lol

Sparkle

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Post  MLily92 Thu Oct 16, 2014 2:21 am

I've just started on 20mg. It's been two days and I swear the tingling/itchying (which is the only symptom I get, which is driving me f***ing nuts) has gotten worse.

I think it takes a couple of weeks to really start working.

Only side effects I've gotten so far is a return in appetite which is nice and dry mouth which is shit.

MLily92

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Post  Sparkle Thu Oct 16, 2014 10:49 am

Oh dear yeah maybe you need to try a few weeks before anything happens to do with your symptons. Is 20mg a low dose?
I just don't want the tiredness at work and weight gain. I'm quite small tbh but last few years I've got a bit bigger so I worry I might put on a bit.
Don't like the idea of dry mouth. Do all the side effects lessen in time?

Sparkle

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Post  bluejean Mon Oct 20, 2014 4:59 am

I was on different antidepressants just for depression before I ever delveloped VV. They killed my sex drive an made me gain 20 pounds or more. My dr asked me if I would like to try to ami and I told him please no due to my past experience, He put me on a cream form of GABO pentin but it didn't help much at all.

I'm wondering now after reading these posts if my VV was caused from anti biotics through the years.

bluejean

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Post  Sparkle Mon Oct 20, 2014 8:32 am

Hey blue jean,

Yeah my symptoms have gone down dramatically using home remedies so I think if it carrya in this way I will not be starting ami. I don't wanna be in medicine for rest of my life, and like u I've had bad experiences with any deprwssents but using oils and being on vitamins isnt so scarey... I wanna do this the natural way as I have had so much relief already from this way. Just read your post about essential oils and I'm going to purchase some frankincense. I already use vitamin e which helps but your post has convinced me to try others too :-)

It could be cos of antibiotics, all story's seem to be similar starting with thrush or infections ect.
I think mine started when I had thrush for ages and couldn't shift it. Maybe it's anti fungal cremes too.

Thanks everyone for your advice I think I'm going to leave ami for now and carry on treating myself naturally
X

Sparkle

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Post  yoginimom Mon Nov 10, 2014 7:07 pm

Sparkle wrote:Hey blue jean,

Yeah my symptoms have gone down dramatically using home remedies so I think if it carrya in this way I will not be starting ami. I don't wanna be in medicine for rest of my life, and like u I've had bad experiences with any deprwssents but using oils and being on vitamins isnt so scarey... I wanna do this the natural way as I have had so much relief already from this way. Just read your post about essential oils and I'm going to purchase some frankincense. I already use vitamin e which helps but your post has convinced me to try others too :-)

It could be cos of antibiotics, all story's seem to be similar starting with thrush or infections ect.
I think mine started when I had thrush for ages and couldn't shift it. Maybe it's anti fungal cremes too.

Thanks everyone for your advice I think I'm going to leave ami for now and carry on treating myself naturally
X

Hi Sparkle, what all have you been trying naturally? I am also putting off on the Ami for the same reasons. The gyno has given me nortriptyline because the side effects are milder, but i'm still putting off getting that perscription filled.

I'd love to hear about what all you have tried that has worked (and what didn't work, or made you worse) for your symptoms.

So far i have tried:
coconut oil (sometimes helps, sometimes not)
vit e oil (flares me up worse)
vaginal probiotics (soothing, but only temporarily)
juicing (seems to help quite a bit)
acupunture (helps a lot)
pelvic floor physio (flares me big time, but i'm better the next day)
Osteopathic adjustments (help a lot)
Fish oils, vitamins, B & D suppliment (not sure if they help or flare me tbh)

I'm also doing a long term diflucan to suppress yeast because of how badly i react to even the slightest hint of a yeast infection. Hopefully i wont have to do that for much longer.

yoginimom

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Post  Sparkle Mon Nov 10, 2014 7:59 pm

Hey yoginimom,

My symptoms have more or less gone now. I still get slight pain some days but I would say that I'm mainly pain free and haven't used any meds at all.
I have provoked vv. which one do u have? ALthough some days I feel it all day like an ache.. This is mainly if I wear anythink that is too tight around that area or sometimes times after sex with my bf I might have an ache all the next day. Also around my period is worse.
Before I used to bleed after sex and it felt so bad it burned all the way through at times (and going to te loo after was torture)somtimes it was impossible cos the shooting pains I got around the entrance was agony.
Now I get a slight burn occasionally but nothing compared to how it was before.

Vitamins I take are fish oil, calcium citrate and magnesium.
I have come off the combined pill and now only take mini pill which doesn't have the hormones in it. Just progestin.
I use vitamin e oil down Ther which has been a god send for me, it's an organic one from Dr organic so maybe u should try a different one? Which one have u tried? For me this worked better then coconut oil. But I know everyone is different.
I use lidocaine every night rubbed into the vestibules area after my bath and in my bath I am only using aqueous creme to bath with, nothing perfumed. I stopped washing my hair in the bath aswell and now only do that over the sink. As the shampoo can end up getting in that area otherwise... I only wear cotton knickers and wash them seperate to my clothes in non bio powder with NO softener.
I also put baking soda into my baths a few times a week.
I only wear leggings to work as I sit at a desk all day so making sure I am comfatable down Ther is very
Important.

At home I normally just wear no knickers and a pair of my bf shorts or just a baggy tshirt. No knickers to bed got to let yourself breathe.

I started feeling better within a few weeks of doing all these things religiously and every day it just got Al owly better, I feel like the bath thing helped the most. Keeping all perfumed products away from your privates is proba the best advice I was ever given. Fish oils is supposed to be really good coa it has anti inflammatory property's (so keep on with that) and calcium citrate breaks down any oxalate u have in your body. And the vitami e oils really southe me but if that doesn't work for u coconut is the next best thing! Makes sure u use it every morning and night. Like I am with vitamin e.
I'm not sure if one or all these things have worked for me but I'll carry on doing them all as none of them are massive life changes just little things that could help so much.
It's so hard having this and I feel very lucky I am healing so any advice I can give to u isnt a problem at all.

So have u been tested for yeast then? And it came bk positive?? I HATE yeast infections. They are horrible ESP having this too makes the whole situation much worse. Bless you.. X

Sparkle

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Post  Sparkle Mon Nov 10, 2014 8:00 pm

Wow sorry for the essay lol I just wanted to make sure you have all the information

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Post  yoginimom Mon Nov 10, 2014 9:11 pm

Sparkle wrote:Wow sorry for the essay lol I just wanted to make sure you have all the information

Thank you!! No worries i read it all and it was great! I tested negative for yeast, but they still think i have it. When i go off the diflucan my symptoms flare like mad, so next time i go off it i'm going to swab myself and send it to the lab just to be sure that's what it is. They think it may be a non albicans type of yeast.

I feel like it's getting better for me too. I'm going to try and find the kind of E oil you use. I was just using regular E i used a pin to pop it out of the capsule. Is yours a cream?

I would so much rather do everything natural than go on pills with crazy side effects. I also went to an energy healer, and i tell you that has helped more than anything!

Thanks for all the tips, i am going to try some of them for sure!

yoginimom

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Post  Sparkle Wed Nov 12, 2014 8:43 am

No my vitamin e oil is an oil I dont use any cream down Ther except lidocaine but even that is an ointment. Have u tried it?
What's an energy healer?

Yeah I totally agree try and stay off the pills and leave them as a last resort. I do swear by not using perfumed products down Ther and vitamins so defo try those methods and see how u get on :-)

It's funny that u tested negative for yeast but u are so aure u have it? I kept getting treated for yeast too and all my test results came bk as negative. Maybe Ther is somthing elae in the diflucan that is helping u? Rather then it's treating yeast maybe Ther is somthink in Ther that is helping your vulvadynia? Just a thought though..

Keep in touch and let me know if any of my methods have worked for u :-)

Sparkle

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Post  yoginimom Thu Nov 13, 2014 4:08 am

Sparkle wrote:No my vitamin e oil is an oil I dont use any cream down Ther except lidocaine but even that is an ointment. Have u tried it?
What's an energy healer?

Yeah I totally agree try and stay off the pills and leave them as a last resort. I do swear by not using perfumed products down Ther and vitamins so defo try those methods and see how u get on :-)

It's funny that u tested negative for yeast but u are so aure u have it? I kept getting treated for yeast too and all my test results came bk as negative. Maybe Ther is somthing elae in the diflucan that is helping u? Rather then it's treating yeast maybe Ther is somthink in Ther that is helping your vulvadynia? Just a thought though..

Keep in touch and let me know if any of my methods have worked for u :-)

Thanks for that! I will look and see if i can find some organic E oil. The coconut oil does work for me, but i've been trying to just leave it be for a while and see if it will heal on it's own. But it's good to have some thing that i know will sooth the area without freaking it out, to have on hand for a flare. Ive also switched to all organic soaps and stuff to see if that may help.

The energy healer person told me that i have trapped energy in my pelvic region from a few very traumatic events, and once that energy is released all the other things i am doing will start to help. Like the acupunture and physio and supplements etc. I thought that was an interesting take on things, so i am trying to work with releasing the trapped energy with his help. I'll let you know how it goes! Fingers crossed it will help. If you want you can PM me and i can tell you more stuff about it. Smile


Last edited by yoginimom on Thu Nov 13, 2014 4:13 am; edited 1 time in total

yoginimom

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Post  yoginimom Thu Nov 13, 2014 4:11 am

PS yes i use lidocane 5% during flare ups, but i try to not use it unless the pain is more than a 6 out of 10, because it can be irritating for me if i use it too much.

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Post  Sparkle Thu Nov 13, 2014 9:34 am

I got no idea how to PM im not sure what version of this I m using? How do I PM?

I think if coconut soothes u that u shud use it all the time. I use vitamin e oil for the same reason and I use it more then twice a day even tho I'm mostly pain free now. I know u don't wanna feel like u have to rely on anything and it wud be great if this thing would just disappear but if somthing works for u to make te pain any less then keep on with it :-) Thers is no cure for this we just have to try and manage it. It's a shame lidocaine irritaes u... That stuff alway stings a bit but afterwards it goes away and numbs the area it must be fustrating for u to not be able to use that for relief..,
Do u have generalised? Or provoked? Would u say u have for better with any methods or is your pain still bad?

Sparkle

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Post  Sparkle Thu Nov 13, 2014 9:39 am

Oh I also heard that ingesting coconut oil works wonders for some ppl. I used to make Lollys with it but don't anymore.

Sparkle

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Post  A2015 Sat May 23, 2015 6:22 pm

Hi Sparkle,

I realise it has been some time since you posted, but I am hoping you may see this reply.

My symptoms & situation really seem to match yours. My provoked symptoms have started after a Yeast & BV infection a few months ago.
Also, to cut my long story short, I suffered with VV 3 years ago, which started in exactly the same way with those 2 infections, as well as being on the Pill. What completely cured me was coming off the combined Pill. I haven't been on the Pill since, but have had my VV symptoms start immediately again after this recent Yeast & BV infection.

I've felt some hope reading that your vestibule soreness was greatly relieved/cured?! by using natural remedies such as Vitamin E oil. Although when I read that you changed from the combined Pill to the the mini pill, I can't help thinking this is what resolved things for you, beyond the topical treatments applied. Can I ask what time frame you made these changes? When I was cured of VV, all I did was come off the Pill and it disappeared entirely within weeks, no topical treatments needed.

Do you still use Lidocaine? Or the Vitamin E oil? Have you had problems since?

Thank you
A2015

A2015

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Post  Sparkle Sat May 23, 2015 8:43 pm

Hey A2015

You know I don't use vit e anymore, I use coconut oil every single day down there and it's so nice I feel it helps keep things at bay. I also think not using purfumes products down Ther helped me the most in the bath. I find my symptoms come back a bit when i get thrush.

I did all the stuff I mentioned in previous posts about a year ago and I am cured most the time but I still get flare ups of I wash my hair wile im in the bath or sontimes sex can make me sore again for a bit.
Oh I Find that fish pils work too as they natural inflammatorys.

Hope this helps. Glad to hear you found some reliefs with yours I think that thrush can bring back symptoms Sontimes, I find that happens with me but I guess even of you didn't have VV thrush would still make U sore...so make sure that U concentrate on getting rid of that and hopefully the symptoms will disappea again. I use the pill not cream when I get it.

No I don't use lidocaine unless I flare up but I haven't needed it lately.
Let me know if U have any more questions
X

Sparkle

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