Hysterectomy and Autoimmune Progesterone Dermatitis

Knitter,
I was doing a search trying to come across information on APD and Endometriosis and your thread came up, so I joined to specifically be able to talk to you. I have been battling with endometriosis for years, I've been put into medical menopause with Lupron twice and Danazol once, but the last couple years I've also had these rashes come up on my shins that were unexplainable and completely resolved while I was placed on Leuprolide Acetate until after nine months they put me on add back therapy for the side effects with an estrogen/progesterone HRT and within two days the rash was back with a vengeance. That's when I realized they must be hormone driven and started to research it. But it was second seat to my endometriosis which has really been problematic since that add back therapy. I went through excision surgery with a specialist and felt good for 12 weeks only to have the pain return (less than before but still pretty significant and daily). Which leads me to question the APD... if my body is allergic enough to break out in rashes all the way away in my legs, what is it doing AT THE SITE OF RELEASE? Wouldn't you think there would be allergy issues within the pelvis where your body is also dealing with presence of something it sees as toxic? But no one can answer my questions, no one here has ever even heard of the condition. I made an appointment with an Immunologist who had "seen it once when she was a resident" and agreed it sounded extremely likely that it was what I have, but she had no idea how to get the progesterone suspended in water for testing (she only can get it in oil which the oil alone causes reaction and so does not work for allergy testing) and said she would look into and call me back. That was three months ago and I have never heard from her. So my question for you is, how do you find a doctor that knows anything about this disease? Is there any place that you know of where it's someones SPECIALTY or area of study? You spoke highly of the doctor that treated you.
Whether I have this condition or not GREATLY effects what treatments are available for my endometriosis as well but I imagine finding a doctor that is familiar with BOTH and how they interact with each other is way too much to ask for. Any suggestions or help would be greatly appreciated!

Wendy D.

I had a hysterectomy for the pain related to endometreosis. They literally had to scrap it out. It was growing down into my groin and felt like it was going into my inner thigh. It pretty much gone. I get fan tom pains when my cycle was last but the pain where the endometriosis was is gone.

	Quote:
Originally Posted by MyHighRoad Knitter, I was doing a search trying to come across information on APD and Endometriosis and your thread came up, so I joined to specifically be able to talk to you. I have been battling with endometriosis for years, I've been put into medical menopause with Lupron twice and Danazol once, but the last couple years I've also had these rashes come up on my shins that were unexplainable and completely resolved while I was placed on Leuprolide Acetate until after nine months they put me on add back therapy for the side effects with an estrogen/progesterone HRT and within two days the rash was back with a vengeance. That's when I realized they must be hormone driven and started to research it. But it was second seat to my endometriosis which has really been problematic since that add back therapy. I went through excision surgery with a specialist and felt good for 12 weeks only to have the pain return (less than before but still pretty significant and daily). Which leads me to question the APD... if my body is allergic enough to break out in rashes all the way away in my legs, what is it doing AT THE SITE OF RELEASE? Wouldn't you think there would be allergy issues within the pelvis where your body is also dealing with presence of something it sees as toxic? But no one can answer my questions, no one here has ever even heard of the condition. I made an appointment with an Immunologist who had "seen it once when she was a resident" and agreed it sounded extremely likely that it was what I have, but she had no idea how to get the progesterone suspended in water for testing (she only can get it in oil which the oil alone causes reaction and so does not work for allergy testing) and said she would look into and call me back. That was three months ago and I have never heard from her. So my question for you is, how do you find a doctor that knows anything about this disease? Is there any place that you know of where it's someones SPECIALTY or area of study? You spoke highly of the doctor that treated you. Whether I have this condition or not GREATLY effects what treatments are available for my endometriosis as well but I imagine finding a doctor that is familiar with BOTH and how they interact with each other is way too much to ask for. Any suggestions or help would be greatly appreciated! Wendy D.