Log in

I forgot my password

Latest topics
» Pain management - what works for me
Mon May 22, 2017 8:05 pm by SinclairSassy

» Vestibulitiis surgery
Mon May 22, 2017 4:18 pm by Gill

» Does it go away?
Mon May 22, 2017 2:12 pm by mary jane

» Amitriptyline and Uribel
Mon May 22, 2017 1:35 pm by SinclairSassy

» Post Full Vestibulectomy - 5 Years Later - Please Read
Mon May 22, 2017 10:12 am by flick001

» Social Security Disability Benefits
Fri May 19, 2017 8:50 pm by SinclairSassy

» Recovered from Vulvodynia
Thu May 18, 2017 4:20 pm by sarahjane1332343

» Curing the Incurable. VLSC now only have Vulvodynia but 75% improved
Tue May 16, 2017 4:07 pm by sarahjane1332343

» Post-vestibulectomy (partial) recovery- going back to work?
Tue May 16, 2017 4:04 pm by sarahjane1332343

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

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 …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 9

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6

New to the group

Fri Mar 17, 2017 9:52 pm by canuck girl

Hi Everyone
I found the site tonight, and am so pleased I did, I hadn't realised it was such  a problem, and I for one am grateful that the group exists. I recently had a really awful , well the worst one I had ever had UTI, after 4 days of antibiotics it should have cleared though. i now had this awful feeling, and sensations, very sore, burning, some strange sensations I have  that  are hard …

Comments: 1

How do you live with this?

Wed Feb 22, 2017 12:15 am by Persevere1990

Hi everyone,

It's great to see there is a support network here... I was diagnosed a few weeks ago and have started nightly treatment with lidocaine cream one week ago. Not noticing any difference yet.

I notice I get flare ups throughout the day, typically after peeing, showering, walking and when I'm stressed. I'm pretty sure my vulvodynia was caused by nerve damage due to a bad case of thrush …

Comments: 4


How do you live with this?

View previous topic View next topic Go down

How do you live with this?

Post  Persevere1990 on Wed Feb 22, 2017 12:15 am

Hi everyone,

It's great to see there is a support network here... I was diagnosed a few weeks ago and have started nightly treatment with lidocaine cream one week ago. Not noticing any difference yet.

I notice I get flare ups throughout the day, typically after peeing, showering, walking and when I'm stressed. I'm pretty sure my vulvodynia was caused by nerve damage due to a bad case of thrush over Christmas.

I am really struggling to cope with this condition so far and get very anxious when I'm at work or out the house about it. I'm panicking that I'm never going to have a day without pain ever again.

Does anyone have any similar experience or advice to share?

Thank you
Xxx

Persevere1990

Posts : 3
Join date : 2017-02-22

View user profile

Back to top Go down

hang in there

Post  amf329 on Wed Mar 08, 2017 10:36 pm

Hi there,

I just wanted to reach out to say that I'm sending you hope and healing vibes.

I've been dealing with this issue - though I've chosen not to label it V because I know it's not just that, and claiming that it is just labels me as 'sick' - for over a year and a half now BUT I am SO much better than I was when it first started. And that was pretty horrific so I have a lot of empathy for where you are right now. Just take it one day at a time, ok?

While I'm not 100% healed, I'm very close - and I have tried a lot of things to get well... and am still figuring out this last piece of the puzzle... But I have had weeks of no pain at all so I know I can get there. And I know you can too.

My first suggestion is to decide you will get well. The second is to use what you need to by way of prescriptions/medications/etc. to get through this part. While I'm not a huge proponent of drugs because they don't heal but they CAN help when the pain is bad. And my third is to search this forum for success stories and stories of healing and hope, as that will help ease your mind.

We're all different and we'll all healing on some level though it may be by different methods so stay open to what may work for you...

hugs,
A

amf329

Posts : 1
Join date : 2017-03-08

View user profile

Back to top Go down

Thank you!

Post  Persevere1990 on Thu Mar 09, 2017 8:43 pm

Thank you for the reply A, it makes such a difference being able to talk to someone who really understands.

Over the last two weeks I have started taking 30mg Nortryptiline every night and it dramatically decreased my pain levels. Over the last 5 days I have been mostly pain free with just a few hours of pain on one or two days. I am hoping the pain can be reduced further by staying on the medicine. I have been to have accupuncture too, twice now and hope this is also contributing to the results.

Can I ask what has worked well for you in terms of treating the pain?

Persevere1990

Posts : 3
Join date : 2017-02-22

View user profile

Back to top Go down

Things to try

Post  ellenb on Tue Mar 28, 2017 1:30 am

I know this may sound silly but it has helped me some. Get a squirt bottle and rinse after you pee. This helps if residue from your urine is causing the pain. I've been taking gabapentin, seeing a physical therapist. Steriod cremes and lidocaine have not helped me but everyone is different. I feel your pain!! Good luck

ellenb

Posts : 2
Join date : 2017-03-28

View user profile

Back to top Go down

Re: How do you live with this?

Post  Madsmum on Wed Mar 29, 2017 5:27 pm

Hello
My 12 year old daughter has vulvodynia and has had it for about 4 months. It was awful not knowing what was wrong with her but knowing has made it a bit easier to try to deal with after lots of misdiagnosis that made her pain worse. She has missed nearly the whole term of school but has managed 10 days since half term and she has caught up with her work. She is seeing a vulva specialist who prescribed instillagel which is a lighter form of lidocaine. Lidocaine ust stung her but the gel doesn't hurt and can be used as often as every 30 mins. The specialists says to use it at least 4 times a day or when you need to and it can be used with other creams like emuaid. We tried emuaid but we are not sure it worked. I got her a bony parts cushion which she says helps in the car and on soft furniture but not on hard seats so I have ordered a Bonmedico orthopaedic surgical ring donut pillow for her to use at school as the hard seats take their tole the next day and it takes the pressure of according to people with piles and some vulvodynia sufferers use memory foam donuts so I thought I would try something more orthopedic.Vagikool was recommended by the specialist it's a gel ice pack that you freeze put in a sleeve and put it in your underwear and this is the only thing that really seems to help my daughter straight away. So I bought 4 of them

Madsmum

Posts : 2
Join date : 2017-03-29

View user profile

Back to top Go down

Re: How do you live with this?

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

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