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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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

Post  megaanx on 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.

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Re: Amitriptyline Success and new-found love

Post  mary jane on 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
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