On this page, I want to share with you a bit of my history with Hidradenitis Suppurativa. It’s quite a long story, so I’ll try to make it brief here and then elaborate on the subject throughout some of my blog posts. I had to create a summary to share with doctors during our search for The One, so this is pretty much an edited version of that:
The first symptoms of the disease developed approximately10-11 years ago. At this point, there were only lesions on my legs. Within a few years, there were lesions on my groin as well; however, the real progression of the disease began almost 8 years ago, in August 2008.
There was an extremely painful cyst over my sternum that limited movement–I woke up one morning and couldn’t sit up. After two unsuccessful rounds of antibiotics, a minor (extremely painful) procedure was done in the clinic in Oct 2008 to drain the infection from the cyst. There was minimal pain and no real issue again until Summer 2009.
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). This is when the real fun began. One round of antibiotics, one minor procedure, surgery, two more rounds of antibiotics, two more minor procedures, a bigger surgery, more antibiotics, transferred to a wound care clinic, another procedure (I got to watch them cut me open with scissors! More on that another time.), transferred to an infectious disease specialist, put on a PICC line (basically a semi-permanent IV through which I inserted antibiotics 3 times a day). Still, the mysterious infection persisted. This is when we gave up and went to India, where I had another surgery, was put on more medicine, and given a serious diagnosis that put me on strong medication for the next year. This all happened within 5 months.
After almost a year of that medication, everything came crashing down again. The infection insisted upon plaguing me. I had to pack up and go back to India (with less than 24 hours’ notice), where we saw 9 doctors in 8 days, desperate to find out what was going on. Finally, the very last doctor we saw, my Knight in Shining Armor, correctly diagnosed my condition as Hidradenitis Suppurativa. It was a relief to Google the disease and find that each and every symptom checked out; I was no longer 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 a ridiculously strong medicine (a generic form of Accutane…no thanks). By September, my underarms were involved as well, and I started getting 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, given steroid shots, and had more procedures done in clinic (to drain the golfball-sized infected cyst in my underarm), given another outrageous diagnosis, got a spinal tap, more medicines…when finally an infectious disease specialist who knew enough about Hidradenitis was able to explain that the fever was yet another symptom of the massive amounts of infection that had spread throughout my body (and the headaches were caused by the constant fevers).
I had another surgery done for a pilonidal cyst on my lower back (which commonly occurs alongside Hidradenitis) in January 2012. After that, my condition began to rapidly decline (not linked to the surgery). 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 pain of my body literally creating craters in itself. I needed surgery, and I needed it quickly. 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: lo and behold, it ended up being the Knight in Shining Armor, the doctor who first diagnosed me with Hidradenitis a year and a half before.
I had two major surgeries in India that time. The first one was on my breasts, the pilonidal cyst (the infection came back, surprise surprise), and underarms–a 7 1/2 hour procedure after which I spent 10 days in the hospital. The second one was on my upper thighs (3 1/2 or 4 hours long, I believe), followed by 22 days in the hospital. 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.
My quality of life has drastically improved since then, even though I still have a long road ahead of me. The surgeries were done to excise these areas, but that does not mean that I no longer have the disease. The disease will remain a part of my life for however long it decides to stay (could be 5-10 years, could be much longer).
I am currently back in the United States, living in Nebraska and going to graduate school. I was on the Paleo Diet for 60 days in 2012, which allowed me to gain a better grasp of how the disease has been affecting my body. Through my first experience with the Paleo Diet, found that nightshades were my main trigger food.
I’m still learning more and more about my body each day. I will update this section as my knowledge of my condition develops!