Support groups

[Guest guest]

Each day I read the post from women who suffer from VV. I have endured pain beginning in 2000. Start out as a stabbing pain, vaginally. To make a long story short, after 3 years and numerous doctors, pt, medication, and pain management, I finally found an angel at the Cleveland Clinic. Had partial vulvectomy in 2002, and the recuperation affected my work time and my lifestyle, in general. Women out there need to be an advocate. Most doctors never hear of VV. After many drugs, most of which I had reactions to and seemed to make me worse off, especially creams. I had the worst case of yeast infection that my doctor ever saw, and even called in an intern to take a look at it. It's now a new year, and I have since taken myself off of Paxil, which made me crazy and the withdrawal made me loose time at work, Thank God that I have a wonderful workplace and they allowed me to work 1/2 days. With continued

support fromy Gyn, and working in cooperation with a urologist, I have since had an interstim implant, which you must qualify for. This is a device implanted in hip with a remote to turn on stimulator when pain occurs. I know of a young woman for whom this device gave her no relief....I guess that I was lucky! I encourage you women to check out the site NVA.org for find a support group in your own area. There are lots of ideas that come from these groups....such as what kind of clothes are more comfortable, learning how to read your own body, talking about intercourse. It's taken some time, but I am well...I have had complete support from my husband.....It's true, this disease has no known cure. ...but get out there and be a sounding machine for people in your life...no one likes to talk about it...but if you have gone through this, then you might be of help to some other woman. Pat Sweeney wrote: I just saw a flier about a Vulvodynia Support Group meeting just outside of Milwaukee this coming weekend. I don't know why none of my doctors ever mentioned it, so it might be new. It's Saturday morning

at West Allis Memorial Hospital. Email me if you want more details..._________________________________________________________________Find sales, coupons, and free shipping, all in one place! MSN Shopping Sales & Deals http://shopping.msn.com/content/shp/?ctid=198,ptnrid=176,ptnrdata=200639**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**Our HOME page is http://groups.yahoo.com/group/VulvarDisordersto search our archives, files, articles, etc.***