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» 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

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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 …

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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 …

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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


Newly Diagnosed with Pudendal Neuralgia

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Newly Diagnosed with Pudendal Neuralgia

Post  AroraNightfire on Sat Mar 31, 2012 6:52 pm

I am 27yrs old and have for the past 9yrs been suffering with vulvar itch, needle like stabbings in my labias, raw pain upon urination, and the last symptom which developed a little over 1yr ago was knife like pain in my buttcheeks when sitting. I was misdiagnosed with yeast by 3 different doctors, then with vulvar distrophy, then vulvodynia, and last week I was diagnosed by Dr Conway of NH with pudendal neuralgia.

I have already done a s1s2 nerve block with 120mg of depomedrol last june. Conways recommendations are 2 more nerve blocks, this time pudendal between the sacrotuberous and sacrospinus ligaments. If that fails to work then he wants to try pudendal nerve decompression surgery.

I'm nervous and scared because I've been misdiagnosed so many times in the past. I want to make sure this time it is pudendal neuralgia. I don't want to end up worst because of nerve blocks and or nerve decompression surgery. All I hear is negative things online concerning nerve blocks on the pudendal hope site.
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Re: Newly Diagnosed with Pudendal Neuralgia

Post  Sarah001 on Sat Mar 31, 2012 7:18 pm

Hi, I have to say I've been having a few discussions with my physio about Pudendal nerve involement because she thinks it may be a factor in my problem. With me I have tight tender muscles all around the sit bones (common place for the nerve to get trapped) and my sacral ligaments are all messed up (another common place) also tight pelvic floor, piriformis and other hip rotators are a common factor too. She said she wants to soon start a little pelvic floor work on me to try and free any areas where the nerve might be getting irritated and I asked about nerve blocks. Her opinion of the nerve blocks is that they make matters worse from a physio point of view by decreasing sensation to certain areas so the patient can no longer control the muscles correctly and therefore clenching or a complete lack of activity tends to happen so she advised me not to have them. The surgery will definitely destabilise the sacroiliac joints which in turn can set off a whole myriad of painful problems (I'm living proof of that because I have very unstable SI joints and it hurts like hell) including referring pain to the genital area. Have a search for pelvic floor physio on that site because I've found some very encouraging stories about it on there and it should be part of any pudendal nerve treatment before nerve blocks are even considered. A good physio will be able to touch the nerve to see if it is indeed part of the issue by eliciting pain when touched so it might be a good idea to hold off on the nerve blocks until you've had some decent physio first. Tight muscles trapping the nerve can be treated with more conservative means although it will mean alot of homework to get results.
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PT

Post  AroraNightfire on Sat Mar 31, 2012 7:30 pm

I had physical therapy in Orleans Ma Dec2010, Jan2011 and the physical therapist gave up on me because I wasn't able to do the leg exersizes she wanted me to do because it caused me too much pain. She pressed on my ass muscles for 30min and it hurt like hell, felt like pressing on bruises when she held my ass muscles. I don't feel physical therapy would be beneficial. I would rather run on my treadmill for 1hr than do pt again. I've worked with inserting a dildo and leaving it for 15min each day for 1 week and I had to stop because my pain was only worst during the day. I just don't feel it is helpful for me.

Leg movements hurt my crotch, when I bend over to pick stuff up I get needles stabbing my clit labias. I'm on 600 to 900mg of lyrica a day for pain control.
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Re: Newly Diagnosed with Pudendal Neuralgia

Post  ButterflyLiz on Tue Apr 03, 2012 5:47 pm

I may have said this before but through the vulval pain society you can get in touch with a lady who had successful pudendal nerve entrapment surgery in France. Page here:

http://vulvalpainsociety.org/vps/index.php/vulval-conditions/pudendal-nerve-entrapment

I know the surgery's not always successful but she should be able to give you a good account of what she went through and it's always good to have more info.

Still not sure if PN is one of my issues. My experience is that a pudendal nerve block didn't make me any worse but neither did it make me any better.

Do as much research as you can, especially on the experience of the surgeon if you decide to go ahead.
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Re: Newly Diagnosed with Pudendal Neuralgia

Post  embem on Sun Apr 15, 2012 2:44 pm

Hello, I may also have pudendal neurolgia. Mine was caused by surgery I had for vulvodynia this past August. Now the vulvodynia is nearly gone, but the pudendal neuralgia is even worse! My physical therapist believes that I have pudendal neuralgia, but I have not been officially diagnosed.

Might you be able to find a different physical therapist? How horrible that your PT gave up on you! She doesn't sound very good! I'm in Rochester NY and mine is absolutely wonderful. She's very knowledgeable; however, I have not personally seen any benefits yet.

Please post if you have the nerve block. My physical therapist recommended it. I have not had a nerve block, but I have had a muscle block. It helped a little for about a day. I also just started back on Gabapentin, which my GYN specialist put me on, but the PT also said it would help with the nerve.

I have similar symptoms to you. I have the stabbing between my butt cheeks and soreness down my thigh and bottom. I can't wear jeans or khakis, and it is very painful to sit. The National Vulvodynia Association can give you a list of doctors and physical therapists. I know you don't have vulvodynia, but my physical therapist is on that list and is very knowledgeable about pudendal neuralgia. Good luck! Keep us posted.

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Re: Newly Diagnosed with Pudendal Neuralgia

Post  mary jane on Thu Oct 24, 2013 12:59 am

embem, what type of surgery did you have to vulvodynia that could possibly trigger PN?
did you excise your bartholin's ?
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pudendal nerveblock

Post  Maria74 on Tue May 03, 2016 3:00 am

Hi
I've had 2 nerve blocks and I'm going for my third in the end of this month. I drive over 2 hours to Rochester NY to get them. My pt said she can tell a difference but I'm still in pain but I can tolerate her following the nerve from the inside better but I still have constant burning. I've been in this hell for the past 19 years and I've tried countless meds botox and more. Now I'm giving it one last try with nerve blocks Cymbalta and pt.





embem wrote:Hello, I may also have pudendal neurolgia.  Mine was caused by surgery I had for vulvodynia this past August.  Now the vulvodynia is nearly gone, but the pudendal neuralgia is even worse!  My physical therapist believes that I have pudendal neuralgia, but I have not been officially diagnosed.

Might you be able to find a different physical therapist?  How horrible that your PT gave up on you!  She doesn't sound very good!  I'm in Rochester NY and mine is absolutely wonderful.  She's very knowledgeable; however, I have not personally seen any benefits yet.  

Please post if you have the nerve block.  My physical therapist recommended it.  I have not had a nerve block, but I have had a muscle block.  It helped a little for about a day.  I also just started back on Gabapentin, which my GYN specialist put me on, but the PT also said it would help with the nerve.

I have similar symptoms to you.  I have the stabbing between my butt cheeks and soreness down my thigh and bottom.  I can't wear jeans or khakis, and it is very painful to sit.  The National Vulvodynia Association can give you a list of doctors and physical therapists.  I know you don't have vulvodynia, but my physical therapist is on that list and is very knowledgeable about pudendal neuralgia.  Good luck!  Keep us posted.

Maria74

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Re: Newly Diagnosed with Pudendal Neuralgia

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