A Relief To Finally Have A Diagnosis
Last updated: February 2022
Formerly known as acne inverse, Hidradenitis Suppurativa (HS) is a chronic skin condition that affects the hair follicles and sweat glands of the body. It manifests as painful puss-filled swellings in areas like the underarms, groin, inner thighs, and buttocks. If left unattended, they can grow deep into the skin making it hard to handle the physical symptoms.
Managing HS has never been easy
From the very beginning, managing HS had never been easy for either me or my daughter. Over a period of a few years, my daughter had noticed minor inflammations germinate in other areas of her body and had found it hard to deal with the complexity of the situation. We had realized that a visit to a specialist was necessary, but we didn’t know whom to consult.
We had assumed that the lesions might have worsened due to impurities in the blood or perhaps a bad allergic reaction to a plant in the environment. The city we reside in is known for its allergies. The content of pollen is very high in the atmosphere. We had consulted a hematologist first followed by an allergist a month later but found no diagnosis or respite from prolonged suffering.
Sadly, the agonizing pain persisted, and it led to many sleepless nights. The tender puss filled lesions desperately needed an outlet to burst. We consulted a general surgeon who put her on a long course of anti-biotics for several weeks.
The bumps would return again and again
Initially, the medicines did help to ease the pain and the inflammations reduced in size. But soon, the pimple-like bumps were back in form. Before undergoing any surgical procedure, the doctor had suggested that a biopsy was necessary to eliminate cancer. Unfortunately, anesthesias could not be administered during biopsy as the results would vary, we were told.
A kind-hearted nurse warned us about the procedure being painful, but my daughter had no other option but to withstand it. I still remember the blood-curdling scream she had let out when the needle was inserted deep into the puss filled boil in the underarm. I held her legs as she was told not to move.
Thankfully, the results were benign, and the surgeon drained the boil. A few weeks later she was able to move her arm with ease but to our disappointment, there was a relapse. This compelled us to go back to the surgeon for another drain out.
An unresolved puzzle
After three consecutive visits to the hospital the surgeon declared that it was necessary to remove the sweat glands to avoid recurrent flares. But with no concrete diagnosis on paper or an understanding of this condition, we weren’t fully convinced about going ahead with the surgery. Many of our queries were left unanswered and hence we decided to consult another doctor.
Year after year, we visited various hospitals and clinics hoping to get an answer for this unresolved puzzle. Acute folliculitis had also been one of the diagnoses that made it to the long list of possible names give to this ambiguous phenomenon. We experimented with homeopathy, Reki, detox procedures and various other "promising" remedies. But, to no avail.
If I’m able to recall correctly, it was in the month of October when we consulted a dermatologist for the first time. I had prayed for a ray of hope and an end to my daughter’s suffering. “It could be Tuberculosis of the skin or Hidradenitis Suppurativa”, the dermatologist had said examining the open wounds and thick scars in her underarm.
When you need to vent about HS, who do you turn to first?