Experience with Hidradenitis Suppurativa
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.
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.
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.
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).
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.
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
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.
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.
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 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.
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.
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.
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.
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
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