What Did I Have To Lose – Craig’s Hidradenitis Suppurativa Patient Story

I grew up in a family where I believed seeking medical attention was something you did if you were just short of death.

When I was seventeen, I had something on my tail bone where it really started. At the point I could no longer walk, I finally had a friend try to cut it open for me to avoid going to the ER. Needless to say, it didn’t work.

When I did go to the ER, I was told it was a standard abscess, and they stuck a long needle into it and drained it. It was the worst pain I had ever known, but it brought some relief.

Within a week it was returning, but I put off going to the ER again for another three  weeks. This time they drained it, and the doctor said it was a pilonidal cyst which required surgery to have it removed.

Because of funds and timing, I scheduled it in four months – a painful four months – and by the end of that time, I couldn’t walk three or four steps without pain.

The surgery went well, and it seemed to be gone. But a month later I had a lump in my groin area. I went back to the doctor and he lanced it and packed it with gauze. I got one of these every two weeks to every two months for the next five years.

Around the time I was twenty-three, the one on my tail bone came back, and the smell started. I’d shower three times a day and put bandages on it, but it didn’t matter. The one on my tail bone would leak so I didn’t get it checked out right away.

After I finally got the one checked out on my tail bone, they wanted to try a newer surgery where they remove all the surrounding tissue along with the affected area. What the heck! I just went another two years in horrifying pain. What did I have to lose?

At this point depression had set in because it’s painful to walk, sit, and lie down. Doctors are telling me “The pain is in your head; it doesn’t hurt that bad.” That surgery worked to this day. I, however, stopped going in for the other lumps.

It’s just too hard to hurt all the time and have doctors tell you you are making it up.

At about age thirty-four, eight more years had passed and I was draining these lumps myself at home with a razor and some needles I purchased.

When the skin in my groin area was sloughing off, I had to go in. The doctor looked at it and suggested putting vaseline on it and insisted on giving me a test for AIDS because of the open lesions. He was amazed that it wasn’t AIDS.

I then started ninety days of antibiotics, but thirty-five days into them, I got my first lump under my arm, and I couldn’t move it. The doctor sent me to a specialist who took one look, asked some history, asked to see the other spots, and instantly told me it was moderate stage three HS.

I’ve been going to doctors now for a year and a half, but at least now I know I’m not crazy: I have a name for what this is.

There are options for treatment I have been following with no luck yet, but trying to do something after suffering for nineteen years is something.

 

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