Hello, I’m Cathy and I’m a 50 year old woman with HS disease. It’s difficult to go to the beach or pool as I need to get out right away, dry off and change immediately. Since I cover my wounds with gauze and tape, it’s not an easy task.
This is my story…
I was 10 when my symptoms started, and it took till I was 30 to get a proper diagnosis from a Gynecologist. Currently I’m not employed, but I had extreme difficulty with office jobs in the past. Sitting and walking were difficult for 8 hour long work days. I used to get up and try to walk around, or do some filing so that I wouldn’t have to sit any longer. The problem was I always looked funny when I walked (Like a duck) and people would look at me funny, like I was weird.
Being in stage 3 I would describe the pain from HS as downright annoying and painful. Some of the challenges of living with this condition come from traveling. Trips need to be short, no more than 30 to 45 minutes, or an hour at best. Then I need to stop and walk around.
My HS is managed by keeping the area clean and dry and washing it carefully with a soft wash cloth. Also, I’ve found that showering, instead of sitting in a tub, is helpful. For the pain I had been prescribed Hydrocodone and Oxycodone in the past, but now I just take Tylenol and Motrin. Doctors do not like to give out pain meds, and I haven’t found one who will.
If I could grant a person newly diagnosed with HS a wish for their future, it would be that somehow or someway, someone would find a cure [or even a way just to make it more comfortable]. I know my life would be very different without HS. I’d have freedom from the pain and draining and bending, sitting, walking would all be much easier.
Also, I would travel the world without worry about distance, supplies or meds. I would take cruises, long car rides, train rides, and probably fly to Ireland, Austria, Germany, Australia, and Italy.
Not having to live with the pain, smell or mess would be a small miracle right now.