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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Flare ups from physio?

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Flare ups from physio?

Post  WaahwaahUK on Tue Sep 29, 2015 8:08 pm

I've been seeing an osteopath who specialises in female gynae pain over the last fee months. I've definitely noticed an improvement in my intermittent pelvic and back pain, and in my vulval pain. I do seem to have flare ups of pain after treatment and just wondered if others have experienced that too? Today it's been three weeks since I saw him last, and I had a few good days. But my back is soooo sore today and surprise surprise my vulvodynia is flaring! I really think there is a link with the pelvic issues I have and so does he... I guess I'm just curious if flare ups are part of the process before you see consistent improvement? Seeing him again tomorrow.

WaahwaahUK

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Re: Flare ups from physio?

Post  PainBlogger on Wed Sep 30, 2015 9:24 pm

It's difficult to say. I've sometimes had flares after physio but then other times not. Sorry that's not very helpful!

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Re: Flare ups from physio?

Post  WaahwaahUK on Thu Oct 01, 2015 11:50 am

Thank you for replying. I saw my osteopath again last night and he seemed to understand why I was hurting more and after the session I really burned, but this morning feeling slightly improved. He seems to think there is nerve and ligament issues in my pelvis. So far I've seen the most improvement seeing him than anything else I've tried... I do feel like a combination of factors brought me to this place though in terms of the pain I've been in. About to increase the nortriptyline tonight to 20 mg. How are you doing?

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Re: Flare ups from physio?

Post  PainBlogger on Thu Oct 01, 2015 9:59 pm

I stopped my nortriptyline - bladder emptying problems and palpitations were getting intolerable. I've just started duloxetine two weeks ago. Fingers crossed it'll work. The nortriptyline was helping as the pain increased when I stopped it. I'm not on enough duloxetine yet to be effective, but upping to what the consultant thinks will help - 60mg/day - tomorrow. Hope you get on ok with 20mg nortriptyline. Don't let my experience worry you. I'm on other meds also, which complicates the situation.

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Re: Flare ups from physio?

Post  WaahwaahUK on Fri Oct 02, 2015 3:15 pm

I really hope the Duloxetine helps! Sounds like you've had a time of it with side effects. I'm a bit reluctant about the increase in nortriptyline but the pain was so bad last week I almost found I couldn't walk short distance again without feeling like I'm being stabbed repeatedly with little knives so decided to try it. I swear the anxiety this condition causes is almost as crippling as the pain sometimes. Wishing you lots of luck with the new meds.

WaahwaahUK

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Re: Flare ups from physio?

Post  PainBlogger on Fri Oct 02, 2015 4:27 pm

Thanks. Smile Yes, the anxiety can be crippling. And then that, of course, can make perception of pain worse and cause muscle tension which just feeds in to the vicious cycle. I really don't think I'd have had such bad side effects with the nortriptyline if a) I hadn't already had trouble emptying my bladder before I even started it (tricyclics have an anticholinergic effect so relax bladder muscle = slower emptying) and b) I wasn't already on another antidepressant and tramadol (which, in combination, probably made the cardiac side effects more likely and more troublesome). 20mg is still a tiny dose compared to the amount they used to prescribe when it was used for depression (for which it's not much used now), so hopefully you won't get anything too bothersome. I'll try to remember to update with any progress in a couple of weeks. Be good to see how you get on with the 20mg.

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Re: Flare ups from physio?

Post  WaahwaahUK on Fri Oct 02, 2015 7:26 pm

Anxiety is a cruel partner in crime to this condition for sure.... On the odd good day where my pain is say 4/10, the anxiety kicks in big time! I've noticed how tight I hold my pelvic floor recently. I think its from months of walking in agony and my muscles just tense up permanently now even when I'm resting! But being aware of it is helping me to try and relax them more. Sitting here now, exhaling and letting my pelvic floor go! Crazy!
Yes my GP said 20mg is still very low so I'm just biting the bullet. I take my hat off to you and everyone else here. No one really sees how strong you have to be silently to try and deal with this kind of pain. I think its near on impossible for anyone to imagine who hasn't felt it themselves. I'll keep posting my (hopefully) progress. Please do the same for you. Lots of luck.

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Re: Flare ups from physio?

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