Suggestions

I found a pack of information the other day from the GU clinic I attended regarding my problems, the consultant sent me for a chat with a nurse who had a particular interest in vulvodynia and here are some of the things she suggested to me that day:

1. Use a lubricant and massage the skin gently. This is supposed to get the hypersensitive skin used to touch not being painful, she actually said some women have completely recovered using this method because the vulva no longer fires pain signals when touched.

2. Sex toys that don't involve penetration, the reasoning behind this one is orgasms make the pelvic floor contract and relax so push fresh blood into the area, this is a particularly useful one for women with inflamed skin because fresh blood should help with the inflammation. Bit embarrassing being asked if you own any sex toys that don't involve penetration by a nurse though!!

3. Pelvic floor retraining. We've all heard of this one but she couldn't stress enough how important this is because of the link they keep finding between pelvic floor dysfunction and vulvodynia. Anyone with any signs of PFD should really try this angle but it is best to be professionally examined first because the pelvic floor can go wrong in a manner of ways. Some signs of pelvic floor dysfunction include any urinary symptoms such as incontinence, urgency, frequency, constipation, feeling tight if you feel just inside the vagina and low back pain. There are more so if you suspect your pelvic floor google "pelvic floor dysfunction".

Anyone else been told any useful suggestions that might help others on this site?

Thanks Sarah, will deff be trying those.. haha

As for the pelvic stuff - im due to see pain clinic and vulval clinic (once I manage to get a bloody appointment) soon so will I need to ask one of these to refer me for physical therapy? im so not sure how to go about this. I can get to London or Essex and am really not sure if there is anywhere I can ask to be refered to. I really do think the pelvic floor stuff could be my problem as I do suffer with lower back pain and IBS.

Thanks
Sebby xxx

Hi Sarah,

I definitely agree with the pelvic floor re-training. That's somewhat what I've been doing with my physio. My physio has also been treating my back too. I never noticed my lower back was stiff until she checked it out. I've been doing some back exercises to loosen it a bit and using a heatpack on it too. Can't quite confirm this but it may have assisted in relieving the referred pain I was experiencing for a couple of months too.

Cheers,

Sue

I'm really pleased to hear it may be helping you Sue, I'm seeing a women's health physio this week for a consultation and frankly I've got hypermobile SI joints, stiff areas in the lumbar spine, hip problems, muscle imbalances all around the pelvis, hips and back and fibromyalgia too so I'm really deeply suspicious of my pelvic floor! With all that going on I don't see how my pelvic floor can be anything but dysfunctional!!

Thanks for the suggestions- they all sound helpful and I will def. try them. I have no pain around my clitoris so can enjoy some sexual activities, and I do find that immediately after an orgasm the pain is not nearly as severe- although i have read somewhere that your pain threshold lowers during orgasm, so it may be that I just become more able to tolerate it. I find that I am sensitive to lubricants and latex, so I avoid condoms (not that they would be any use to me anyway as i cant have penetrative sex) and also ask any doctors to use vinyl gloves, and also sensitive to lubricants- I use (on the advice of my gyno- it sounded weird to me at first)olive oil instead and find this much less irritating.

Check out this link for ideas others have tried and the results they got from them:
http://www.curetogether.com/vulvodynia/treatments/

Unfortunately there isn't anything written by any individuals but pretty much every treatment possible is listed with how much better (or worse) it made women feel.