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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» 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.

Comments: 1

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


Post Full Vestibulectomy - 5 Years Later - Please Read

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Post Full Vestibulectomy - 5 Years Later - Please Read

Post  jen007 on Tue May 02, 2017 6:18 pm

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post surgery, I was 99% pain free... I say 99% because I still had some tightness here and there, but nothing my dilators couldn't help along. In October of 2016 that all changed. I went to sleep one night pain free & woke up the next with pain. It's never left me since. The pain is much different than what I had experienced before surgery. This didn't feel like vulvodynia to me. The pain moved around my urethra. I thought I must've had an infection or maybe even a reaction to some scented toilet paper... If only that were the case. It's had some variations over this past year, but mostly my symptoms are constant burning... like a thrush type of burn or UTI type burning. All inside my labia around the urethra. Sometimes it even burns to urinate. I can still enjoy sex & have orgasms, but there's times where it's impossible. The aftermath is also unpleasant. I feel deep stinging pain... my regular burning feeling times 10. It doesn't last long, but I'm out of commission sex wise for a few days to recover. Wearing tight clothes is painful, but I deal with it because I don't want to sacrifice my style... it's one of the things that makes me feel normal. I try to make myself look as good as possible with clothes & makeup to compensate for the awful pain I feel 24/7. I've tried so many things, but nothing seems to help me. At first my surgeon, who did my vestibulectomy, thought the pain stemmed from a Skenes Gland Cyst. He removed it and it changed nothing. I had to go thru the same recovery time as I did with my first surgery & paid all that money for no results. It was very upsetting. Then I tried various creams & medications as I did before my surgery. Even went back on amitriptyline & nortriptyline... neither helped at all. I can't use lidocaine gel to numb the pain because it burns too much... even if I mix it with lubricant gel... I tried it a couple of times & just decided to never use it again. The pain it caused wasn't worth it to me. I've gotten to the point where I had to stop seeing my gynecologist that has been with me throughout my entire journey. She has nothing left for me to try... and honestly she was just guessing with treatments. Antibiotics, medications, creams, therapies... doctor after doctor... nothing helps. I started seeing an infectious disease doctor. I wanted to see if there was some way I could've gotten some kind've new infection that on one has heard of or doesn't test enough for. She couldn't find anything wrong with me either. We did a bunch of blood work... no STDs or anything out of the ordinary. I also went to a urogynecologist to no avail. Currently the infectious disease doctor has me on Singulair for anti-inflammation. I've been on it for 2 months & haven't noticed anything drastic.

Here is a breakdown of my symptoms:

Constant burning pain around the urethra and labia area. Also, every once in awhile the pain escalates... at times I wonder if I have an infection, but I usually don't show anything when I get tested. The pain will last between 2-3 weeks & then I'll feel the regular burning pain until the next time it escalates.

I'm wondering if any of you have experienced something similar to this. I would love to hear recommendations. My gynecologist told me that our nerve endings can grow back after being removed & then travel to a different area. I never heard of anything like this before surgery. I didn't know nerves could grow back after being cut. Maybe I'm just one of the unlucky ones... but I feel like we never hear from women after surgery. We never get to know what happens years later. Who knows if they live a pain free life still. I was hesitant to post here again... it's taken me some time to realize I need to be a voice for women who suffer with this. No one deserves this. I hope that one day I can find relief... as well as all of you.

I hope to get to read some feedback from you ladies. Hope you're all managing as best as you can!

-Jen

jen007

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  fairlight10 on Tue May 02, 2017 8:52 pm

Sorry to hear you are still suffering. Have you considered trying a low oxalate diet? I have had some stinging this past week. Especially after urination. I looked at what I have consumed recently and there are a lot of high oxalate foods. For instance, spinach, peanut butter,beetroot,too much coffee and chocolate. It has calmed down now, but was starting to remind me of the old days. I also used to make sure I was dressed nicely, hair and make up just so. Did not know why I did this but I was probably compensating or trying to disguise what was going on with me. I know you can also neutralise the acidity of your urine with calcium citrate, calcium carbonate and potassium citrate. Hope this can help.

fairlight10

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  sj17 on Sat May 06, 2017 5:59 pm

Hi. Sorry to hear about your suffering, I truly hope your pain goes away soon. I'm just wondering did you receive your surgery in the UK and if so what hospital / doctor?

Thanks,

Sarah

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  flick001 on Mon May 22, 2017 10:12 am

Hi,

To me the deep burning and stinging connected with the urethra sounds like Interstitial Cystitis - have you seen a urologist and been tested for this?

I hope you find out what it is and get some relief!

flick001

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

Post  Meggiemay on Sat Oct 07, 2017 8:19 pm

How are you doing now? All of my pain is around my urethra and clitoral area and they are telling me to have a vestibulectomy but i'm not so sure.

Meggiemay

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Re: Post Full Vestibulectomy - 5 Years Later - Please Read

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