Living with Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) is a chronic skin condition. It is characterized by abscesses, blackheads, inflammation, lesions and scarring.

HS forms painful clusters around the arm pits, the anal area, and the groin.
It occurs in places where sweat glands are present, or other skin-to-skin contact areas such as under the breast or even the folds of eyelids.

Numerous pus-filled lumps form, creating pockets as large as baseballs making it difficult to walk or raise one’s arm. These abscesses may persist for years, flaring up, draining, spreading and creating wounds that do not heal.

What often isn’t addressed is how devastatingly debilitating it is for those who live with this condition.

Not only do those with HS suffer from chronic pain from abscesses in various private parts of their bodies. They also must be constantly vigilant of odors caused from drainage, or be concerned that an abscess will open without warning in a public place.

Overall, people with HS are made to feel by many doctors that they are unhygienic, unclean, and somehow at fault for the fact that they are suffering from this uncommon skin ailment.

I (author of this article) was invited by the HS community to join their closed Facebook group to learn more about the struggles those with HS live with. The following are excerpts of their stories.

Many HS patients recall periods in their youth when things began. Kim remembers, “as a young child I had a ‘boil’ on the back of my leg that was treated by a doctor. Still wonder if this was not my first lesion.”

Angela wrote, “When I was in my late teens and early 20’s I would occasionally get one or two small boils in a year. I never saw a Dr. about it as they always appeared in my lower region of the pubic areas. They were sore and painful and I usually had to wait until they burst on their own or if they didn’t and the pain was bad enough I would find a sterile needle and lance these sores myself …”

Rick recalls his last day in Gym in High School. “A cyst in my upper inner thigh ruptured and drained down the inside of my leg while in the showers. Others who were present laughed and questioned my gender.”

At first, boils or abscesses may occur infrequently but then they develop more often, warranting more frequent trips to the ER or doctor to have them incised, drained and packed.

Many go from doctor to doctor trying to find answers, or even a correct diagnosis, as they search for treatments that will keep the “monster” at bay.

HS is often misdiagnosed as a variety of other conditions, often as a form of acne. But HS is not acne. It invades deeper in the follicle layer of the skin.
Some HS sufferers report numerous abscesses, all crowding for space in a groin or armpit.

Rick remembers a flare he had about six years ago. “Groin, Scrotum, Perineum, inner thighs all flared at one time … I could not move in any way with out pain …”

The pain from HS impairs people’s ability to perform basic tasks like reaching for things, or it impairs walking due to widespread groin swelling. Surgery also causes impairment of movement, especially in the armpits and in the groin.

Teri wrote, “The pain stops you from doing the simplest of things. Even brushing your own hair becomes impossible to do. When you finally decide you are going to work through the pain no matter how much it hurts you very often rip your wounds open wide. This makes things even worse.”

The traditional treatments of antibiotics, anti-hormone drugs and surgeries become endless for those with HS, and doesn’t seem to control the illness enough for people to regain control of their lives.

As years go by, those with the most severe cases of HS endure numerous procedures that have left them both emotionally and physically scarred.

Naomi reported, “I’ve had HS for 13 years. It started in my groin when I was pregnant with my daughter.”

“I had my first one on my 21st birthday and since then it has been hell. I’ve had so many operations on my groin, legs, anus, womb, cervix, stomach, and buttocks including three sets of skin graphs. I am on fentanyl patches and oral morphine for the pain and haven’t been dressing free for 5 years– twice a day.”
And aside from the physical pain, there is the pain of social isolation that comes from having an illness you cannot talk to others about. Some are unable to maintain jobs due to the condition so end up on disability, which affects their self worth.

Kim wrote, “I live in fear of someone smelling me or a lesion leaking on my clothes in public. Which if you deal with HS, you know it is bound to happen sooner or later. I had this happen to me several times when I was working. I learned to bring extra clothes, just in case.”
She went on to say, “Socially, it has ruined my life. I have pulled away from my friends. I have sat a many hours in my home alone. Refused invites to social gatherings so much that my friends stop asking if I want to do anything.”

Teri added another important concern.

“Sex, one of the most joyous forms of physical intimacy between two people. But what if your groin area is permanently scarred? What if you constantly have oozing painful lumps throughout your external sex organs? What if the very act of intercourse causes severe pain? How long will your partner stay with you when they cannot share the intimacy that a life long couple should enjoy?”

Some HS members not only struggle with the illness themselves but also stand by helpless, watching their children suffer.

Louise expressed in frustration, “I still haven’t forgiven myself for giving this sh**ty bastard disease to my daughter. I hope I am doing my all for her but HS will soon let me know.”

“I’ve been told it’s all genetics and that’s one thing we can’t change. My oldest daughter has not got it and my youngest has said why me? I don’t have the answers.“

One of the great frustrations HS patients encounter is that research and advancement for treatment of HS here in the United States seem to lag behind other countries, and doctors persist in giving treatments that don’t work. HS patients want to know why the U.S. medical community does not take more of an interest in their disease.

There is an old movie called, “Network” where the main character Howard Beale announces on the air “I am a human being.
I’m mad as hell and I’m not going to take it anymore!”

The HS community wants others to know that they are human beings too and they are mad as hell that more isn’t being done to help them.

This was originally posted by EmpowHER