I am currently working to update this page, so right now my story goes until Spring 2012. I plan to have it updated this week. Please comment below or e-mail with any questions you have, and I will do my best to answer them! Thank you.
On this page, I want to share with you a bit of my history with Hidradenitis Suppurativa. It’s quite a long and gruesome story, so bear with me.
The first symptoms of the disease developed around when I was 16 years old with lesions on my inner thighs. Within a few years, there were lesions on my groin as well. At the time, I did not know that these were indicative of disease and didn’t tell anyone about them—I found them to be embarrassing because I just thought they were acne. The real progression of the disease began years later.
In August 2008, I woke up one morning and could not sit up due to intense pressure and pain on my sternum. I saw a family doctor who suggested that it was a pocket of bacterial infection. After two unsuccessful rounds of antibiotics, a minor (extremely painful) procedure was done in the clinic in October 2018 to drain and scrape the infection out of my sternum (without any numbing whatsoever). After healing from this procedure, there was minimal pain and no real issue again until the following summer.
In July 2009, swelling and pain reappeared over my sternum (where was I? Interning in California, of course! I had to quit my internship halfway through and head back to OK). The next four months involved (in this order): one round of antibiotics, one minor procedure, surgery, two more rounds of stronger antibiotics, two more minor procedures, a bigger surgery, more antibiotics, my doctor giving up on me and transferring me to a wound care clinic (where I got to watch them cut me open with scissors! More on that another time), being transferred to an infectious disease specialist, and being put on a PICC line (basically a semi-permanent IV through which I inserted antibiotics 3 times per day). Still, the mysterious infection persisted.
We had been in contact with family in India, and we decided to try our luck with some answers there. My mom and I flew to India in December 2009, where I underwent dozens of tests, had another surgery, was put on even more medication, and given a serious diagnosis that required me to take many strong medications throughout the next year. We thought our questions were answered and were gratefully on our way.
After almost a year on that medication, everything came crashing down once again. The infection was back. In October 2010, I had to pack up and go back to India (with less than 24 hours’ notice). Desperate for answers, I saw 9 doctors in 8 days. I was at a hospital, meeting with one doctor, when he called up to one of his colleagues for a consult. I went up to see that doctor, and I still remember the experience clearly. He was calmly sitting at his desk, slightly leaned back, completely confident, and he told me that I had Hidradenitis Suppurativa. I never had that other thing, I didn’t have those other things, I had Hidradenitis. He was 100% sure of the diagnosis. I remember the first time I googled the disease and every. single. symptom. checked out. It was such a relief to no longer be a mystery!
During Summer 2011, more lesions began to develop beneath and on the underside of my breasts. I started seeing a dermatologist, who recommended a lifelong course of Accutane. I declined and decided to terminate my services with that doctor. By September of that year, my underarms were involved as well. I caught a minor virus, and after that I maintained a constant low-grade fever. The fever was a new development, and, coupled with debilitating headaches, became a major concern. I was put on various rounds of antibiotics yet again, given steroid shots (which increased my white blood cell count and ultimately made the infection worse), and had more procedures done in clinic to drain the golfball-sized infected lesions in my underarm. Due to the headaches and fever, the doctors thought I may have viral meningitis. I went to an infectious disease specialist who performed a spinal tap on me to confirm the diagnosis…and the results were negative. I was put on more medicines to manage the symptoms while I continued to become more and more ill. Finally, in December, another infectious disease specialist who knew enough about hidradenitis suppurativa was able to explain that the fever was yet another symptom of the massive amount of inflammation that had spread throughout my body (and the headaches were caused by the constant fevers).
I had another surgery done for a pilonidal cyst in January 2012. After that, my condition began to rapidly decline. In fact, the infectious disease specialist I had seen in December had originally said that he would hate to see how bad my condition may become in 5-10 years if I do not have extensive surgery to remove the damaged tissue. I had gotten so worse that a month later I saw the same doctor again and he said that I was in danger of sepsis if I did not receive serious surgical intervention within the next 6 months.
At that time, I spent most of my time in bed (I was unable to walk without support) and I was on strong pain medication to tame the excruciating amount of pain caused by my body literally creating craters in itself. I needed surgery, and I needed it quickly. In March 2012, we left for India, yet again, in search of the perfect surgeon. After meeting with several doctors, we found the one we knew would perform my surgeries. In fact, it ended up being the doctor who had originally correctly diagnosed me with hidradenitis a year and a half before!
I had two major surgeries in India that time. The first was on my breasts, the pilonidal cyst (the infection had returned), and underarms—a 7 ½ hour procedure after which I spent 10 days recovering in the hospital (and much more time healing my surgical wounds after). The second surgery was on my upper thighs (3 ½ or 4 hours long, I believe), followed by 22 days in the hospital due to complications and infection. My fever did not go away until after the second surgery was performed, which means I had a low-grade fever for over 6 months straight.
To be continued…