I noticed extreme pain at my c-section. It was red and inflamed. My husband requested I make an appointment with a surgeon to get it looked at. He lanced one boil and I screamed in pain! I didn’t get a diagnosis but a few months later it came back with a vengeance. Now my entire c-section was infected. In one day I saw an ob/gyn, a plastic surgeon, and a general surgeon. He finally diagnosed me with a ingrown hair follicle with same day surgery to come in a week. Basically I had a complete new c-section with removal of dead tissue. Not fun at all and recovery was about two weeks.
Then I got a boil between my breast. It popped and I thought “ok, here we go again”. It wasn’t as painful as the first so no doctor visit. Then came the underarm. Again, not as much pain. One small one on my stomach. I was used to having drainage constantly at that point.
Finally, the inevitable happened. I got a boil on my buttock region. It started to grow and spread. I worked retail so walking was painful. I couldn’t sit anymore without a pillow under me. Getting in and out of the car was extremely difficult. I couldn’t lay on my back at all. My husband finally talked me into going to have it looked at. I finally agreed after waiting as long as possible.
February 2019 I went to an urgent care. The doctor came in and told me I had hidradenitis suppurativa, that I needed surgery, and walked out the door. Wait, what? When I got into the car, I started doing research and found out this was an auto inflammatory disease and there was no cure. I decided to try AIP and not go the surgery route. Was it easy? Nope. The pain was so excruciating that I ended up resigning from my job.
May and June were my two worse months. It all started with a burst flare which I ended up loosing a lot of blood then passing out in the shower. I had an allergic reaction to med honey which meant I couldn’t move my right leg. Finally, I was so anemic I was admitted to the hospital for two units of blood.
I finally got into wound care in July. They were an absolute godsend. Plus I was able to see Dr Jaleel at Duke in December. She wanted to put me on humira. My husband and I decided not to make any decision until after Christmas.
Fast forward to 2020. I am not taking humira because right now I’m in remission! I’m able to walk, stand, sit, and lay on my back. My eight Tylenol per day has decreased to only two. Things have been so much better. Granted, I’m still draining and have tunneling but so far it’s not as bad and no new flares since last year. I think back to what I’ve been through and can’t believe where I am. I’m no longer depressed and my anxiety has been nonexistent for the past nine months. I’m just enjoying each day as it comes. I have HS but it doesn’t have me.