My Journey with Hidradenitis – Janet’s Hidradenitis Suppurativa Patient Story

I had my first outbreak at twelve years old. It was a very painful bump under my left breast. My Mom took me to the doctor and they removed it surgically.

Then I began getting them under both arms. It got so bad that I was given a doctors’ note excusing me from gym class since I was always in pain and had restricted movement due to HS. I didn’t know what I had or how much this disease had already affected my family.

When I was thirty, I finally got a name for my ailment: HS.

My father passed away and I realized that his lengthy past hospitalizations and major surgeries were due to HS. His first surgery was on one of his thighs and he had complications and was in the hospital three months. He was in there a month when the other thigh was done. I truly don’t know the extent of his surgery since I was only ten at the time.

Fast forward.

I had a wonderful Dermatologist, Dr. Janet Sullivan. She tried every combination of antibiotics, steroid shots, you name it. I had another issue that I had to take Prednisone for. I suddenly realized my bumps were healing and my discomfort was gone. I had stumbled on a miracle cure.

I told Dr. Sullivan on my next visit. She informed me that prednisone had too many side-effects and long-term problems, so I couldn’t take it on a regular basis. The only way she would prescribe it was for a special occasion such as a wedding or if I was going on a cruise or something.

I cried, she cried.

This wonderful doctor was offered a position in NY so she took it. I was devastated. She was the first doctor to understand my condition and to actually care. Up until then all I got was “you need to lose weight and the condition will improve or go away.”

One doctor even told me I would probably “outgrow” the condition by the time I was 35. I turned 61 on my last birthday–still got it.

I was in remission for years. My underarms didn’t have outbreaks and they had been my worst problem. Then I started getting them in the groin, buttocks and under my breasts.

This caused lots of problems for me at work. I got called to the boss’s office because of complaints about the odor. I had to get a letter from my doctor about my condition that was kept on file in HR. I was at that job seven years.

My last job lasted fourteen years and I got humiliated by this chick that used me as the butt of her jokes. Again I had a letter on file. I even sent this bully HS info and online pics of the condition so she would know that it wasn’t caused by me not washing. She never apologized or anything.

My supervisor ordered a new chair since my drainage ruined the original one.  I bought hand towels and wash cloths to sit on so the brand new chair wasn’t ruined.  My confidence and self esteem was non-existent.

On April 28, 2007, I had been dealing with pain and lots of drainage from my thigh. Suddenly the other thigh began to hurt. It got worse over the next few days and I got very sick and feverish. Finally I was taken by ambulance to the ER.

My blood pressure was extremely low (64 over something) and my white blood cell count was way off. At the hospital I was rushed to surgery. Turns out I had necrotizing fasciitis (flesh eating disease). Don’t know how I got it but it normally occurs when bacteria come in contact with an open wound.

I had around six surgeries, two for the NF, three for my HS and a couple others. I went from the hospital to a nursing home and was bedridden. I had to learn to walk again.

I didn’t get back home until February 12, 2008: almost a year later. I never got back to work.

I have been dealing with HS quite a bit the past ten years.  I currently have a bad outbreak on my left buttock. I have had excruciating pain for a year. I finally got a doctor to open the spot. I still have pain and constant drainage. I’m told there is a tunnel between two spots. I have a home care nurse that comes to change my bandage and packing.

The best news is I started Humira in December. It’s working for me. My underarms have healed and my other areas are much less painful.

I neglected to mention that although I was deathly ill in 2007, it was one of the best years of my life. My one and only grandson was born.

Of course I was in the hospital when I met and held him for the first time.  That little boy is nine years old now, my pride and joy. He knows his Nana is sick a lot, often in pain and has to lay down quite a bit, but I spend as much time as I can with him and love playing with him when I am able.

I pray that there is a cure for us. God Bless and keep your heads up. As they say “What doesn’t kill you, makes you stronger.” We are STRONG!!!

  1. Dae NicholasThornton 2 years ago

    I was touched by your story and I will add your name to my prayer list
    I don’t know why this happens to women but I hope today is a good day for u

  2. Michaela 2 years ago

    Thank you for sharing your story Janet. I am so sorry that you have been through so much due to your HS. I am delighted to that humira is working for you, that you have a good doctor that tries her best to help you and that you have your grandson. That he is your ray of sunshine on a HS cloudy days. Much love 💜

  3. Hisportion 2 years ago

    Thank you for sharing sister. You will be in my prayers.

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