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» Hope to all my suffering ladies
Amitriptyline Success and new-found love EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Amitriptyline Success and new-found love EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Amitriptyline Success and new-found love EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Amitriptyline Success and new-found love EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Amitriptyline Success and new-found love EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Amitriptyline Success and new-found love EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Amitriptyline Success and new-found love EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Amitriptyline Success and new-found love 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!
Amitriptyline Success and new-found love 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


Amitriptyline Success and new-found love

+9
Jo44
Sebby (Admin)
Nelsonhs30
Alana3
tinkerbelle2
zarli
Leslieg
Georgia H
mary jane
13 posters

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Post  mary jane Sun Feb 16, 2014 4:14 pm

After 5 months of hell and suicidal thoughts, I finally have some peace of mind and partial success with the amitriptyline. I have been taking 50 mg for 3 1/2 months and it has finally taken my pain levels down to a ZERO! I can wear skinny jeans again, sit down without pain, walk in high heels, WALK long distances, wash without pain. The electric shocks and nerve buzzing are GONE! Magnesium has also REALLY REALLY helped me!
My latest "cure" however has been finding the most sweet caring guy who is very calm and patient about my whole problem. He is very patient and assures me it is not the end of the world for him if we have to wait until I am better. My central nervous system is far too busy these days with happy hormones (=falling in love) and it no longer focuses on the pain. My next step is to find a way for painless sex and to reduce the pain with/after touch.
I urge anyone out there with nerve pain to not give up and keep trying as many things as possible.
I also follow a girl with vulval and bladder pain and she also found success after 6 years of treatments and pills. she is half way to being cured. Her problem turned out to be in the superior hypogastric nerve. (read more here: http://madpeach.blogspot.co.uk/)

love you all and wish you all find relief  I love you 
mary jane
mary jane

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Post  Georgia H Sun Feb 16, 2014 11:49 pm

That's so great Mary Jane!! So happy for you! I've been thinking about how long I would give the amitriptyline and this has inspired me to persist!

So nice to see so many success stories on here right now. Yay!

Xxx  I love you 

Georgia H

Posts : 18
Join date : 2014-01-27
Location : LONDON

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Post  Leslieg Mon Feb 17, 2014 12:15 am

Maryjane!!!! Smile Smile Smile
Truly happy for you!! xo

Leslieg

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Post  zarli Mon Feb 17, 2014 5:30 am

You made my day, so thrilled for you . OH the sweet joy of NO PAIN !!!!! Enjoy your wonderful life like crazy...... I love you I love you 

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  mary jane Mon Feb 17, 2014 2:56 pm

thank you all Smile You're all very sweet!
Yes, please try everything out there, even if it does not give you a cure -you CAN and WILL manage this!
mary jane
mary jane

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Post  tinkerbelle2 Mon Feb 17, 2014 5:49 pm

Mary Jane I am thrilled for you!!!! This is brilliant. I have been much better since taking Ami although not quite there yet. But we can all get there. So pleased about the new guy too! Xxxx  I love you 
tinkerbelle2
tinkerbelle2

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Age : 31
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Post  mary jane Tue Feb 18, 2014 11:24 am

thank you tinkerbelle ! You're such a sweetheart, you deserve to be rid of this once and for all ! Just stick with the treatment plan and be positive !  I love you I love you 
mary jane
mary jane

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Post  Alana3 Tue Feb 18, 2014 2:09 pm

Congrats! I told you so!!!!!  Very Happy 

Alana3

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Post  mary jane Thu Feb 20, 2014 11:05 am

thank you Alana, I remember how you've always told me to keep a positive perspective on things Smile
mary jane
mary jane

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Post  Nelsonhs30 Sun Feb 23, 2014 11:42 pm

Congrats!! That's great! I can't imagine waiting 6 years to have success tho. Too long! I'm only 7 months in and wanting to die already.

Nelsonhs30

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Post  tinkerbelle2 Sat Mar 15, 2014 1:31 pm

Mary Jane I WAS doing much better on the ami but now it seems to have decreased effectiveness and I'm soo sore. But i am definitely going to give it a go for another few months. Are your pain levels still low or even gone? Hope they are! !!! Xxx
tinkerbelle2
tinkerbelle2

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Post  mary jane Sun Mar 16, 2014 9:28 pm

Hi Tinkerbelle...have't bee on the forum much because I'm still feeling good.
I can now wear skinny jeans AND walk in high heels for hours, sit down all day long with some soreness (nothing big). I still have some pain with touch. My nerve buzzing and crawling under the skin is GONE 100%
I am now on amitriptyline 50 mg and Pregabalin Lyrica working up to 300 mg a day...the only thing Lyrica did for me so far is numb my "tickle nerves". It is impossible for me to get tickled now, and my stomach was a tickling horror-fest, the slightest touch would feel super sensitive....I will grab the courage to try intercourse in a few weeks, luckily my guy does not pressure me...if these don't work, my dr wants to try a pundendal nerve block on me...I'd rather just stick with meds....


about the amitriptyline now, it still gives me some occasional panick attacks...I'd stick with it for 3 months if I were you, I know it seems like forever, I also thought it would never work for me, but the pain gradually went away...

I'm now on the hunt for a pharmacy who does valium rectal suppositories or lidocaine 10%, maybe my stupid GP will help me with those...

btw, have you thought of ALOE organic gel ?? it is like a natural NSAID

I don't know what else to recommend, just keep trying...
Oh yeah, and my yeast infection is also cured Smile

I cured it with 4 months of probiotics (bio kult candea) and the final touch was raw garlic for one week ..it's a natural antibiotic.....
mary jane
mary jane

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Post  tinkerbelle2 Fri Mar 21, 2014 7:58 am

Ahhh brilliant! This is amazing news. I do think I should stay on the ami at least one more month. Is it okay to be on the ami and lyrica at the same time? Do you have any side effects? Xx
tinkerbelle2
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Post  tinkerbelle2 Fri Mar 21, 2014 8:00 am

Just PM'd you lovely xx
tinkerbelle2
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Post  mary jane Sat Jun 14, 2014 7:33 pm

Hello again,

I'll just update this quickly in case anyone else is googling for vulvodynia/pudendal issues ...general pain, pain with touch and painful intercourse.
Symptoms were in my signature.
After 8 months on Amitriptyline 50 mg + Pregabalin/Lyrica everything was cured and I was ready to stop taking the meds.
I now have bartholin gland issues which will probably take me back to square one with the pain because they require surgery, but anyway.

Amitriptyline took 3 1/2 months to work and had craploads of side effects, but slowly it worked for the GENERAL PAIN.
After about 6 months I added Lyrica 300 mg to this and the pain with touch and painful intercourse STOPPED HAPPENING COMPLETELY after about 2 more months. At this stage, sex was pain free (minus the initial first minute-tight muscles) and enjoyable. Also if you have pain with touch you must de-sensitise the area with gradual touching.
The only side effects lyrica gave me were head aches for the first week and some random days of feeling high. Way better than the ami.

To this I add the MAGNESIUM, the happy days, the vit D, the B-vitamins, distracting my mind from it, etc.

I hope this helps anyone out there.
May we all get cured

mary jane
mary jane

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Post  Sebby (Admin) Fri Jun 20, 2014 10:31 am

Wonderful, thank you so much for sharing your success. It gives all our members hope x
Sebby (Admin)
Sebby (Admin)
Admin

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https://vulvodyniasupport.forumotion.net

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Post  zarli Sun Jun 22, 2014 5:32 am

Hi mary jane just wondering if you only take lyrica or are you still on both amil and lyrica ? And if you stopped the amil did you have any bad days? Thanks Smile

zarli

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Post  Jo44 Mon Feb 23, 2015 2:41 pm

Hi Mary Janes, I would love to know how you're doing now please?

Thanks

Jo x

Jo44

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Post  WaahwaahUK Wed Aug 26, 2015 5:18 pm

This story gives me hope. So happy for your recovery x

WaahwaahUK

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Post  Katiej Sat Nov 18, 2017 12:24 pm

Maryjane I dunno if you are still on this. I just started ami 10 days ago. I am on 15mg . How are you now ? I hope I wouldnt have to stay on it forever? I know this post is so old but im just in a bit of a panic. Have lots of stabbing nerves and pinching sensations down there . Did u have this and did the ami take it away. Thanks

Katiej

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Post  hannah22 Thu Dec 07, 2017 1:56 am

Hello,

I am so happy you are feeling better Very Happy I had previously tried amitriptyline. I have different pains at the vulva, uretha, and clitoris area and when I was on amitriptyline it slightly helped the needling pain at the clitoris, but no where else and after months it never got any better. I had a vestibulectomy a few months ago and the pain is worse so they put me on lyrica which helps a tiny bit at the clitoris with the needle feeling, but nothing at the vuvla again. I was wondering if you felt better all at once or slowly? I also was curious if you felt a little better before a few months or nothing until then? I am just not sure how long I should stay on lyrics if it isn't helping at all after a month. Sorry for the long message!

Thank you,
Hannah

hannah22

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Post  mary jane Sat Dec 09, 2017 4:45 pm

hannah22 wrote:Hello,

I am so happy you are feeling better Very Happy I had previously tried amitriptyline. I have different pains at the vulva, uretha, and clitoris area and when I was on amitriptyline it slightly helped the needling pain at the clitoris, but no where else and after months it never got any better.  I had a vestibulectomy a few months ago and the pain is worse so they put me on lyrica which helps a tiny bit at the clitoris with the needle feeling, but nothing at the vuvla again.  I was wondering if you felt better all at once or slowly?  I also was curious if you felt a little better before a few months or nothing until then? I am just not sure how long I should stay on lyrics if it isn't helping at all after a month. Sorry for the long message!

Thank you,
Hannah

Hello, I have had remission and relapse since this post, also broke up with that guy sadly..

Amitriptyline started working for me from 30 mg up, this means after approximately 1 and 1/2 months ... but I only achieved adequate pain control after 3 months on this medication at a total of 50 mg.

Lyrica worked very fast for me, I would say maybe give it 2 months in your case, but for me it worked in weeks, albeit it made my skin numb so it had an overall effect on my sensitivity (a good thing)

I was able to get to full remission, one year and 4 months of no symptoms...
I have spoken with a neuro privately and she said it was impossible for me to have actual nerve damage because I would not have been able to give up on my medication. Was told it's psychogenic but not given any tips on how to actually overcome this if it's the case...argh

I'm currently experimenting with valerian tea to quiet the nervous system because I am trying to decrease my dosage of ami from 50 to 40 mg ...
mary jane
mary jane

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Post  hannah22 Mon Dec 11, 2017 2:47 am

Thank you for the helpful information. I am going to stay on the lyrica for a while longer and hopefully it helps. I am sorry to hear about your relapse and I hope the valerian tea works for you. Best of luck!

hannah22

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Post  megaanx Wed Oct 03, 2018 4:42 pm

Hi Mary! I just came across your post now and I’ve been diagnosed with Vulvodynia since March this year, I find it so frustrating dealing with this pain everyday! I have a constant burning sensation and lime a stabbing sorta pain which is hard to describe. I was on amitriptyline for 2 weeks but I had the worst flare up so the doc changed me to nortiptyline which I was on for 5 weeks with hardly any relief. I’m back on amitriptyline to give them longer to work, I’ve been on them for three weeks, how long did it take for your amtriptyline to work and are you still pain free now? I can’t even wear jeans or sit without pain.

megaanx

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Post  mary jane Fri Oct 05, 2018 7:24 pm

megaanx wrote:Hi Mary! I just came across your post now and I’ve been diagnosed with Vulvodynia since March this year, I find it so frustrating dealing with this pain everyday! I have a constant burning sensation and lime a stabbing sorta pain which is hard to describe. I was on amitriptyline for 2 weeks but I had the worst flare up so the doc changed me to nortiptyline which I was on for 5 weeks with hardly any relief. I’m back on amitriptyline to give them longer to work, I’ve been on them for three weeks, how long did it take for your amtriptyline to work and are you still pain free now? I can’t even wear jeans or sit without pain.
Hi, I am so sorry to hear! the amount of distresss can be really overwhleming with such a health problem ./..

I had V in 2013 and a 3 year remission period, was off my medication and now back on it again, I took 50 mg amitriptyline again and now have successfully reduced this dose to 30 mg. I have no pain apart form some ocasional stabbing which I ignore. I also use a lot of lidocaine, 5% ointment.

Amitritptyline takes very long to work, 3 weeks is not enough Sad All antidepressants take a long time to build up in your system.
If ami doesn't work, you can try Cymbalta next and maybe pregabalin. anti-anxiety medication like klonopin can also work

It's somewhere between 5 weeks and 3 months, depending on dose. I would use it in combination with another treatment like acupuncture, lidocaine, desensitzation therapy, there is also a product a user on this forum swore by called saginil gel especially for soreness and burning ... basically I am recommeding you throw EVERYTHING at it... heck, I even use calming teas like valerian, anything to get the nervous system to stop overracting ....
Best of luck ! You will heal soon !

V is treatable and most women get better, they just don't always come back and post on forums
mary jane
mary jane

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