Enter Hidradentis Supprativa

I always knew there was something different about the "boils" I was getting. In my teens I asked my mom, in my twenties I asked my OBGYN, in my thirty's I asked my doctor, in my 40's I asked more doctors. Even when I brought hidradentis to their attention they told me it was very rare and unlikely. One doctor even tested my "boil' for staph. Everything came back fine. Her exact words were no bugs, stop using deodorant, no shaving, and use Hibicleans. It wasn't until I was 41 that a doctor finally confirmed my diagnosis of hidradentis and so I have begun my research.
The research on this disease is pretty depressing! I try to avoid looking at the internet but I am desperate to find some information that will help. Things have progressed to where I will not wear tank tops and avoid intimacy. I have had a couple spots get so painful I have had a hard time moving. Funny that no one around me not even my husband has noticed it. I started sharing the details of the diagnosis with my husband and my sister. I am so worried they are going to shun or leave me. 
So far I have not had any medical treatments. I have been thinking about having all my body hair permanently removed. Maybe my breasts removed and I think I might stop eating all together. I wish I knew if any of that would actually work but I don't and I do not want to make it any worse so here I am. Hopefully I can find some peace, wisdom and support from other people who are in the same boat. Maybe I will even be able to help someone else.