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» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
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» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

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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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Amitriptyline Success and new-found love

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Amitriptyline Success and new-found love

Post  mary jane on 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 
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Re: Amitriptyline Success and new-found love

Post  Georgia H on 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 

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Re: Amitriptyline Success and new-found love

Post  Leslieg on Mon Feb 17, 2014 12:15 am

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

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Re: Amitriptyline Success and new-found love

Post  zarli on 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 

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Re: Amitriptyline Success and new-found love

Post  mary jane on 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!
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Re: Amitriptyline Success and new-found love

Post  tinkerbelle2 on 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 
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Re: Amitriptyline Success and new-found love

Post  mary jane on 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 
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Re: Amitriptyline Success and new-found love

Post  Alana3 on Tue Feb 18, 2014 2:09 pm

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

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Re: Amitriptyline Success and new-found love

Post  mary jane on 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
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Re: Amitriptyline Success and new-found love

Post  Nelsonhs30 on 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.

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Re: Amitriptyline Success and new-found love

Post  tinkerbelle2 on 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
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Re: Amitriptyline Success and new-found love

Post  mary jane on 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.....
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Re: Amitriptyline Success and new-found love

Post  tinkerbelle2 on 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
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Re: Amitriptyline Success and new-found love

Post  tinkerbelle2 on Fri Mar 21, 2014 8:00 am

Just PM'd you lovely xx
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Re: Amitriptyline Success and new-found love

Post  mary jane on 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

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Re: Amitriptyline Success and new-found love

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

Wonderful, thank you so much for sharing your success. It gives all our members hope x
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Re: Amitriptyline Success and new-found love

Post  zarli on 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

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Re: Amitriptyline Success and new-found love

Post  Jo44 on Mon Feb 23, 2015 2:41 pm

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

Thanks

Jo x

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Re: Amitriptyline Success and new-found love

Post  WaahwaahUK on Wed Aug 26, 2015 5:18 pm

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

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Re: Amitriptyline Success and new-found love

Post  Katiej on 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

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Re: Amitriptyline Success and new-found love

Post  hannah22 on 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

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Re: Amitriptyline Success and new-found love

Post  mary jane on 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 ...
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Re: Amitriptyline Success and new-found love

Post  hannah22 on 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!

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Re: Amitriptyline Success and new-found love

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