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…
Hey, I applaud your positivity. It must be tough but you seem to be handling things well. I have some issues of mine own (still can’t figure them)…mainly digestion problems bigtime and know I need to eliminate things definitely. Considering paleo or the “ultrasimple diet” approach….contact me if you want to chat more about paleo. I’m lost…I do think I need to eliminate dairy and eggs (I LOVE eggs) simply because I eat these things in excessive amounts and likely have developed sensitivity to them.
I understand how frustrating it must be to have health issues with no answer as to what is happening inside of your body. I do recommend the Paleo Diet, and I would love to do my best to answer any questions or concerns you may have–please e-mail me at email@example.com. Good luck with everything!
Pingback: A Stranger Can Change Your Life | Running the Body
Hi pooja, It truly is great to bump into your blog. I also have HS and it started when I was 12 I know you understand when I say it’s terrible as it doesn’t affect only your body but also your emotions. What makes it even worse is not being able to relate with others as its not a very known condition and those who do have it don’t come fwd or are not diagnosed.
With that said thank you for telling your story. Also do u think paleo has helped you with HS ?
Janine, thank you so much for stopping by and commenting on my blog. I absolutely know what you mean–the loneliest I’ve ever felt was when I was at my worst dealing with the disease. I was showered by love and support, but I couldn’t help but feel terrified and lonely because I felt like no one truly understood what I was going through–how could they? I hope my story has provided some help or insight for you. It has been a tough battle to fight, but every day of suffering is worth it if I can help someone regain strength in their battle against HS as well.
Paleo has DEFINITELY helped with HS. I was able to target the specific foods that were triggering my flare-ups (I’m going to post more about how to reintroduce foods post-paleo to find your trigger foods soon), and I have honestly never felt healthier than I did when I was on the diet. I am actually considering making a more permanent switch to the diet because it was just easier for me to manage that way. If you have any questions about the diet or need some guidance (or paleo blogs/recipes), I would be happy to help you out! Feel free to e-mail me as well!
Hi there thanks so much for all your post I have been dealing with HS since I was 12 too. I’m 23 now and it has just contined to get worse and worse this last year I have been to the ER 7 times due to golf ball sized cysts and the type of cysts that form on your tail bone. I am so tired of this disease!!! I would love some info on the diet and recipes. I also have a question for you, the surgeries did the remove all the skin that had problems? And also how does that area look now. I have been referred to a surgeon but don’t want to look worse than I already do. Also I’m in school and have two more year before I graduate, so what time frame does it take to totally heal and walk and sit properly?
Pingback: The Paleo Diet: An “Autoimmune” Approach | Running the Body
Hi Pooja – I’ve found you via the lovely Alison of Freethought Farm. She dropped me a line suggesting we connect (even though I am all the way down here in Sydney!)
Although I have suffered from HS for over 20 years, it sounds as though you have had a rougher road than me. So sorry to hear of all your troubles – HS is such a horrible, painful and isolating affliction.
I’m a fellow AIPer. I’ve all but put my more than two decades of stage II HS – and other issues – into remission following AIP (I was on the elimination stage for 9 months before starting to reintroduce some things. Coffee!!!)
Anyhoo – just wanted to check in. I’ll drop you a wee email, too…
Best from down under,
PS – are you familiar with the FaceBook Groups ‘HS Elimination Diet Support’ and ‘HS Diet Connection’? LOTS of supportive HS peeps from around the globe.