Sammi6’s Profile

Close Hidradenitis Suppurativa

I watched my dad suffer for years, and when i was in high school i started to get lumps, mainly under my arm and on my neck. Then they moved to my groin area, I had some surgery, then some more surgery, went to heaps of doctors, went to heaps of derms who put me on Rooaccutane and other antibiotics and told me to lose weight but no one ever diagnosed me with a particular condition. Then it moved under my breasts and i had more surgery. Eventually a little indian doctor opened a text book and pointed to a section and said ' you have this'. I spent years with my collar up cause of my sores and scars, never wore swimmers and was soooooo self conscious. At uni I would wear up to 10 bandaids a day to cover my sores. I saw another derm, then a plastic surgeon who referred me to an microbioligist who deals with infectious diseases. He told me to take long term antibiotics - clindamycin, another tablet and the yasmin pill. He told me to lose weight. I lost 16 kg, things were ok but definitely not over. I put most of the weight back on over 12 -15 months, It started up in my thighs again. I am covered in scars, but at the end of the day, scars dont hurt. I have had weeks at a time off work because i cant walk or cant move and the only way to let things calm down is to lay still for days on end. As a general rule the antibiotics are ok, and I need to lose weight and stop smoking again. I am also about to go off the pill to prepare to have a baby tho i want to be healthier before i fall pregnant so i can be in the best position to get through a pregnancy, jsut in case my skin gets worse. My parents and my husband are really supportive. They are the best. I cried when my doctor told me i have a chronic disease because it was the first time it was acknowledged for what it is. It is the absolute bane of my existence and I hope I can help others with the same condition.