Hidradenitis Suppurativas:

My Experience with Hidradenitis Suppurativa

by Leah Day

This is a skin condition I found I had in high school. One night in the shower I was soaping up my armpit and felt a lump. It felt like a small marble embedded under the surface of my skin. It didn't hurt a lot, but it was annoying and made me self-conscious. Worried it was cancer, I went to my family doctor and then to a surgeon to find out what it was.

The surgeon I went to told me a bit about Hidradenitis Suppurativa. Basically it is when your sweat glands do not release fluids as they should. Instead they fill with pus and form cysts. Sometimes these cysts surface and burst, but mine never did. The cysts will come and go, once or twice a month. He said there was no real cause of the condition, but no true cure either. Anitbiotics helped some people he said, but he believed more as a placebo than anything else. His advice was surgery, to cut out the damaged skin tissue.

Up until this point, only my right arm was experiencing these cysts. Being left-handed, this didn't impair me much. I was advised to try a deodorant with no antiperspirant and try to steam the cysts to the surface when they formed with hot washcloth compresses. I attempted both, but neither worked. Instead the cysts started getting bigger and coming more frequently. I finally made the decision to have surgery when I got the first cyst in my left armpit. It was the size of a large marble and so painful I had to stay out of school for two days.

The problem was I opted for surgery with no real idea of what was going on. I was told about the condition and I had done a little research, but I could not find much from people who actually had it. Instead I just found doctor's definitions of the condition with the same bleak conclusions. If left untreated, Hidradenitis Suppurativa can cause irreversible damage to your skin and underlying tissues. Every time a cyst forms, the pus scars the delicate tissue under the skin. This scar tissue makes it that much easier for more cysts to form, and the building scar tissue thickens. If the cysts can come to the surface to drain, this creates outer scar damage and is accompanied by bad smells (I never experienced this).

My surgeon told me the operation would take care of it, and that he had never had a recurrence of the condition after surgery. I am not sure I believe this now, but then I was reassured and trusted him. Unfortunately I had not the knowledge or the mindset to question what was set in front of me.

My operation was on Christmas Eve, and I woke up feeling like my arms had been cut off. I had no feeling in my arms from my shoulders to my wrists. Apparently, while cutting out the scar tissue, nerves were damaged in my arms. I cannot describe the feeling. It is like your whole arm has gone to sleep and the surface of the skin is dead to all sensation. Apart from the nerve damage, the surgery was painful and affected me mentally. After going home I stayed there for weeks, unable to go out due to discomfort in my arms. Depression and sadness engulfed my life.

I was forced back into the world when winter break ended. I had another semester to go of high school, and it was the worst three months of my life. I had never experienced claustrophobia before, but now I couldn't stand the idea of sitting in a car, standing in a crowd, or walking to class.

The nerve damage that had made my arms numb was starting to wear off. I know that severed nerves cannot be repaired, but damaged nerves sometimes do reconnect. This feels like small electric shocks and the surface of the skin changes so it feels as though millions of needles are bearing into your bones. I couldn't rest my arms on anything hard, and always wore long sweaters to cushion them.

Slowly, over three months, the nerve from my elbow to my wrist repaired and I regained almost normal feeling in both arms. My shoulders also returned to normal. The back of my arm from my shoulder to my elbow, though, remains strange feeling even after three years. It is not painful, but slightly numb and sensitive to touch.

As far as the Hidradenitis Suppurativa goes, I did not sweat for nearly four months after the surgery. During this time, I never shaved my armpit hair and wore no deodorant. Going into that summer though, I began to sweat minimally, and shaved my underarms once. Within a month of shaving I got another cyst. Two small cysts formed in my right arm. I felt I had been lied to by my surgeon. I went back and he confirmed that it was Hidradenitis Suppurativa.

So I had surgery to cure me of an annoying condition, only to find that the cure was far, far worse than the disease. Not only that, but it didn't even cure it. After going to college I began to explore natural medicine and realized the benefits of a healthy diet, a low stress lifestyle, and limiting the toxins that enter my body. I have not had another cyst after those two in June 2002, but largely because of the changes I have made in my life.

I only shave my armpits about once every two months in the summer, and not at all in the winter. I limit the amount of sugar, dairy, and fats in my diet. I have found a profession that I can work in with little to no stress. Hidradenitis Suppurativa may also be treatable through acupuncture. I had already learned to deal with it by the time I learned about acupuncture, but it is a path that should be investigated.

If you are reading this article and you have been told you have Hidradenitis Suppurativa, I hope you can find a cure for yourself. My experience with surgery may be very different from yours, but please remember that there is always another way to deal with your health. It may be a harder road to take initially, but it will serve you better in the long run.

Editor's Note: Leah is my daughter-in-law and an award-winning quilter. She shares insights almost daily about quilting and art and life on her very popular blog, The Free Motion Quilting Project. To see Leah's gallery of beautiful quilts that she's created, click here. If you're a quilter, both of these sites require a visit right now!

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