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By the way, do they use a microscopic camera on you so you can see the paget's? Is your doctor a gynecological oncologist? Perhaps all of our doctors could consult with each other.
Hunteca and I are both teachers. What were any of your occupations? If you say teacher, maybe it's in the chalkdust!
Are either of you diabetic?
CherylView Thread

I have been told that it is slow growing. I had only one itchy spot the size of a dime. Until a year ago, it was not inflamed, but never went away. I remember that this first occured in the 90's.View Thread


Welcome to our small and very exclusive group. I don't know where you are, or how far you are willing to travel, but my doctor is at a teaching hospital at the University of Arizona in Tucson. He is currently in China trying to find out what they are doing there. He has two other patients other than me, but they remain anonymous. Tucson is lovely this time of year.
All of the studies I have read show something like 40 patients over twenty years. One estimate I read was 200 patients world wide each year. And lots of men have it too. The bottom line is that they don't know what causes it. If we could find a few more people, we could create a questionnaire. I can tell you, however, that I have never given birth.
I never thought of Benedryl. I am using two creams. One is a steroid cream to replace the protective skin layer that Paget's destroys. That is why you keep getting yeast infections. Have they given you fluconozole for that?
CherylView Thread

Thanks,
CherylView Thread



My progress has be halted by multiple mega yeast infections caused by both antibiotics (dental issue) and the lack of protective skin layers. So last week he took me off the Imiquiod and put me on the chlobetasol 24/7 for one month to build up the protective layer. It seems better this week. The yeast causes blistering, even on the inner thigh. Getting in and out of a vehicle is the worst. I am so tired of feeling my flesh tear-thereby ripping off all of the protective layers and starting back at square one.
If your vulvectomy doesn;t do the trick for you, I have been investigating some therapies including superheating of a local area of the body. If you are interested in reading about this I can send you a link.
I am 63 and a former teacher. I was born in Detroit, so Indiana is part of my experience. Is there a way to get each other's email addresses without posting them?
Tell me more about you. I don't think anyone has every done a study to see what we rare birds might have in common. Let it begin with us!
I shall think of you spritzing as I apply my steroids! CherylView Thread

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