Need Advice

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I was diagnosed 2 weeks ago with HS. Myself and my family doctor thought it was a virulent yeast infection because of a medicine I was on that causes yeast infections. But, after 2 rounds of diflucan and 3 rounds of broad-spectrum antibiotics it went from bad to worse. I am 56 years old and had never had anything like this before. By October 2017 it started forming scars and draining copious amounts of blood tinged pus. I bath 2-3 per day and try to keep everything dry (it is in my groin and butt area) and no relief. My blood count has steadily dropped because of the blood loss. Well I went to a dermatologist and the nurse practitioner saw me initially and her exact words were “OH MY LORD! OH MY, GO GET THE DOCTOR.” He came in and was very professional while she stood there with horror as an expression. He told me not to worry and we would start Humira. Unfortunately, I was not a candidate for Humira since my sister has Multiple Sclerosis. They said there was an alternative of Stelara and sent away multiple lab tests that all were normal except for blood count that showed blood loss. I have had an upper and lower GI procedure that ruled the bleeding was from there and have an appointment with a Hematologist so it can tell me which I already know that I have chronic blood loss over time from the HS. The Nurse Practitioner gave me a prescription that was alcohol-based that I used 1 time and burned for over 20 minutes and I began bleeding a great deal of blood requiring extra pad use. The most frustrating thing to both me and my family physician is that they are refusing to treat me or even offer any alternatives for relief. Have any of you ever experienced the total disregard for patient care related to this condition? I am tired, in Pain, uncomfortable, and extremely frustrated!

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  • Posted

    I am sorry you are going thru so a tuff time. You have to research and find a hospital that has a department that specializes in HS. including surgical removal. The one I went to was The Cleveland Clinic in Ohio. I’m sure there are others.
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  • Posted

    Hi Tammy, not sure but it may be worth researching Pilonidal Cysts and look for a surgical specialist along those lines also.  i ended up in a similar condition, and removal of the pilonidal cyst alleviated my other HS symptoms.  I think it gave the body a chance to get on top of the infections.  The procedure itself can mean not sitting properly for a few months, so not to be taken lightly.

    Also in my case, definitely diet... not a bad one necessarily but food intolerance.  For me nightshades, for others nuts, dairy or sugar.  A food diary helps identify.  i went to GP's and dermatologists for about 15 years trying different medications, none of them were confident it could help address anything but the symptoms if lucky.  I was frustrated no-one had ever focused on food intolerance's.

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