Log in

I forgot my password

Latest topics
» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 3

Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 0

vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0


Post Full Vestibulectomy - 5 Years Later - Please Read

Go down

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

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

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

Posts : 57
Join date : 2016-04-17

View user profile

Back to top Go down

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

sj17

Posts : 31
Join date : 2017-05-06

View user profile

Back to top Go down

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

Posts : 2
Join date : 2017-05-22

View user profile

Back to top Go down

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

Posts : 13
Join date : 2014-09-25

View user profile

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum