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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 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

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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 …

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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


How can you tell whether v is caused by a muscular problem or by nerves?

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How can you tell whether v is caused by a muscular problem or by nerves?

Post  The_Joker on Thu Nov 28, 2013 2:11 pm

Just wondering whether anyone has any thoughts on this...Is there a way to tell whether my vulvodynia symptoms are caused by irritated nerves in the vulva area from a UTI/thrush  or by tight pelvic floor muscles etc Would be grateful for any ideas!

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I've wondered the same thing!

Post  Misa1626 on Fri Nov 29, 2013 3:18 am

I've always thought it was a nerve issue with me so I stopped doing physical therapy, but now I've gotten much worse since stopping so I don't know what to think! I have constant burning down there 24/7. I can't wrap my head around this condition! I'm going back to physical therapy starting next week so I guess I'll see if that helps bring it back down from a 8/10 to a 5/10. I'll keep ya posted.

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Thanks

Post  The_Joker on Mon Dec 02, 2013 11:07 pm

Misa1626 wrote:I've always thought it was a nerve issue with me so I stopped doing physical therapy, but now I've gotten much worse since stopping so I don't know what to think!  I have constant burning down there 24/7.  I can't wrap my head around this condition!  I'm going back to physical therapy starting next week so I guess I'll see if that helps bring it back down from a 8/10 to a 5/10.  I'll keep ya posted.
Thanks for taking the time to reply Misa1626. I'll be really fascinated to hear if the physical therapy has any effect on your V ie whether it improves the burning or not! I've been told that my V was caused by a  UTI or thrush aggravating the nerves, but I can't help wondering if a prolonged period of stress caused pelvic floor issues which impinge on the pudendal nerve and that in turn has caused the sore/raw burning feeling at the back of the vestibule... whatever, I just want to get better, wear my jeans and be able to sit down comfortably again...not too much to ask after 5 months surely!!

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Re: How can you tell whether v is caused by a muscular problem or by nerves?

Post  Loulou on Tue Dec 03, 2013 12:46 am

Joker, the best way to find out if its pelvic floor tightness is to get yourself referred to a women's health physio and ask for a biofeedback assessment. It involves having a vaginal probe inserted (ouch I know but worth it) and this takes a measure of your pelvic floor tone (they measure it as rest and also get you to do various types of contractions and relaxations). A normal PF tone is 2 or under - any higher and there is PF tightness.

A quick and unscientific method is to see how you feel in the mornings -if you wake up with no V pain but then find pain increases as you get up and move about during the day then its possible that its muscular (as your muscles will have relaxed during sleep but then tense up again once your awake and up). Presume you've had all the tests to rule out UTI/thrush?

And i agree, i think stress can be a factor in tight PF. Mine started after a stressful period and i later found out that I had been clenching my butt and abdominal muscles constantly without even realising it!

Misa, physical therapy (in any format) is a long road unfortunately - took me over a year. I think of it as muscles have memory and they have to be retrained.

Good luck ladies. let us know how you get on.

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Re: How can you tell whether v is caused by a muscular problem or by nerves?

Post  tinkerbelle2 on Tue Dec 03, 2013 12:08 pm

The Joker, I am wondering the exact same thing about my own vulvodynia. I have initially always assumed mine is more in the skin because of the type of pain that it is, but recently I just don't know anymore. When I press down on the sore areas they almost ache, so I don't know if it could in fact be muscular. Or could it be two things going on at once? Or nerves just being messed up and feeling pain when there isn't any. I can only speculate. My plan is to see a vulvar dermatologist and a gynaecological physiotherapist to sort this shit out. Someone just fix us, please ! Hope I offered you some support x
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Thanks

Post  The_Joker on Tue Dec 03, 2013 6:56 pm

Thanks for your support Tinkerbelle 2 and Loulou! It's nice to get some expertise and thoughts from other people. I don't wake up with any pain any more at all, it creeps up during the day which I guess points in the direction of pfd/muscular issues. Bring on the Womens Health physio...

Good luck with the vulvar dermatologist and  gynaecological physiotherapist Tinkerbelle2, I hope they can help you to help your body heal..

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Re: How can you tell whether v is caused by a muscular problem or by nerves?

Post  Kathy100 on Tue Dec 03, 2013 7:31 pm

Mine is muscular /pfd related & I do get no pain in the mornings and then get worse as the day goes on. At first I thought it was nerves but tight muscles can irritate the nerves and cause pain. So it can be difficult to tell. My pain then spread into my legs which I couldn't relax at all and back & hips which all pointed to muscular.
What is helping me is notriptyline for the v pain & physio to ease my muscles. I do pilates exercises & pelvic floor stretches every day too. My pain levels have dropped and I'm managing now to take 5mg of notriptyline every other day (to start with I was on 10-20mg a day). I not out of the woods yet but I am much better than I was a year ago. I agree that stress plays a part too because when I get stressed I can literally feel all my muscles tightening up.

I'd say it's worth seeing a physio who specialises in pelvic pain to get checked out.
Good luck....

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Re: How can you tell whether v is caused by a muscular problem or by nerves?

Post  tinkerbelle2 on Wed Dec 04, 2013 11:38 am

Thank you, I hope you do too sweetie! If you don't wake up with pain it definitely sounds like the women's health physio could be helpful! Good luck and keep us posted Smile
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Re: How can you tell whether v is caused by a muscular problem or by nerves?

Post  Misa1626 on Sat Dec 07, 2013 2:20 am

Hi Guys, so I went to physical therapy and decided to ask her what she thought. She said that she thinks it's a bit of a vicious cycle, like you said Kathy. It may start with thrush or a UTI that gets the nerves out of whack but that in turn can cause muscle spasms which then end up causing more pain! I'm hoping I can calm the nerves with amitriptyline and Celebrex which I'm about to start tonight and retrain my muscles with physical therapy. Gotta keep positive. Eyes on the prize. I'm going to get better. In the mean time glad I have the support of you all!!

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Re: How can you tell whether v is caused by a muscular problem or by nerves?

Post  tinkerbelle2 on Sat Dec 07, 2013 12:43 pm

Hi Misa, that's a really interesting thought on how things could be linked like that. I have a dermatology appointment coming up and it's worth me having a physio one as well I reckon. Thinking of all you girls!
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Re: How can you tell whether v is caused by a muscular problem or by nerves?

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