Please someone ., anyone with this help me:(

Hello .. My name is Claire and I have been diagnosed with vulvodynia about 2 months ago. I was devastated because I already did my research on it. I'm going to order neogyn tonight and have been doing pelvic floor muscle pt ..( which is very hard for me and uncomfortable) they prescribed me norontin and I've been on it before and had to go to the hospital because my withdrawals were so bad so I don't want that.. Does anyone think I should try this neogyn and see if it works .. I'm trying to have faith but I feel as though no one in my life understands the stress and anxiety of this condition.. Thank you to those who will take the time to give me advice I appreciate more then you know!!

You are one of the 1st people I have ever read that has withdrawls from neurontin.....i too suffered unbelievably!!! I just dropped down to 1800 a day(from 3600) and i am noticing after about 2 months it is starting to help a little. I have read that the cream you are referring too does not have great results....i'm not sure what your symptoms are, but from what i am learning the pain we have on our vulva is from nerves...which is where the PT starts to help. I would be careful of creams....once I stopped everything, but Crisco I have noticed a little improvement...I think all of the creams aggravate the vulva that was never really the problem(in some cases). I am also finding a little improvement when I had magnesium supplement to my vitamin regiment....it helps with inflammation...which is what my doctor believes is the ulitmate problem with me...I know most of what i wrote you won't really help but i know how desperate you feel!! I am so sad for all of us suffering alone!!

Hotmess,

I'm not a fan of commercial creams that advertise they help stop vulvar pain or cure vulvodynia. Usually these types of cream are just scams with false promises. Did you're doctor recommend this cream to you? I wouldn't put anything down there before consulting a doctor.

What kind of pain do you have? Provoked or unprovoked? Is your pain interior or exterior?

I'm asking these questions because, depending on the above, different treatments cater to different types of vulvodynia. In my case I had provoked pain where I only experienced pain when I was touched, also my pain was around the interior entrance area, around the rim, of my vagina.

-Jen

Thank you so much for replying first of all!! And yes I refuse to go back on neurontin I just think its a bad drug.. But as for the cream I'm kind of desperate and will do anything I have to to make the pain go away I have provoked localized vulvodynia and its definetly interior .. I feel like the pt isn't going to do anything until the pain in my vulva gets better .. This seriously is such a frustrating condition and I pretty much cry everyday and think about it 24 7 which is making it worse because of all the stress .. Anything I eat I'm like oh is this affecting it or how I sit or how I stand .. I have never felt so alone. I keep trying not to have self pity because I'm not like that and don't like to think this negatively .. Thinking positive is the way to go but it's literally impossible right now .. But about the cream I was thinking about the affects it would do to the inside of me. Does anyone else feel this alone and ashamed about this? I wish there were groups we could go to so we feel not so alone:(. I'm going to call my doctor tomorrow and ask about the cream. I already know she's going to say no but I will make the desicion.. Again thank you ladies for answering me you've made me feel not so alone for a couple minutes:)

I had experienced the same pain you're feeling now. I'm going to be honest with you, the cream most likely won't work, in my opinion. The only cream/ gel that ever gave me relief was 5% lidocaine cream. It temporarily numbs the area you apply it to. I would highly recommend having your doctor prescribe it to you. It really takes the edge off when you're experiencing a lot of pain.

My doctor also had suggested for me to try pt, but told me in the end it wouldn't solve my problem. My pain was so bad I couldn't even stand to bare the cotton swab test. After 5 years of suffering and 3 years of treatments that didn't work I decided to have surgery to remove the affected areas which caused me pain. I only did it as a last resort. There was nothing else I could do so I figure what the hell...what else could I do? It was the best thing I ever did. I'm no longer in any pain. It doesn't always work out that way for everyone, but my doctor assured me that with the type of vulvodynia (the same as yours) the surgery would be a success. I would take to your doctor about it, but only as a last resort kind of thing. Try everything you can until you've tried it all before considering a vestibulectomy.

But definitely do give the lidocaine a try. I've even heard of some women using coconut oil or crisco down there to sooth the area.

Don't feel alone! You've got a great group of ladies here who do really care about all of the members here. There's always someone to talk to! Stay strong!

-Jen

Thank you jen I really appreciate it! I do have the 5% lidocaine and sadly that doesn't work for me at all .. I put it on before sex but it is still absolutely excruciating. I want to do the surgery but I know they will not do it until I've tried everything .. I need to just chill out about the whole thing .. I'm just getting mixed info so it's aggravating. I need to stop stressing its just so hard .. My boyfriend just told me it makes him want to cry because of how I can't stop thinking about this and can't stop looking up research .. He knows how much it's killing me. Everything's going to be ok I just have to keep telling myself that .. Thank you for making me feel better though .. I'm going to ask about the surgery next time I go to the doctors and shell prob laugh at me but its worth a try! Thanks again !!