How do you live with this?

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

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

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?

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

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