Hidradenitis Suppurativa and Pain
The pain of HS was so bad. I knew there was no cure because of what I’d read online. I’m okay with bad odds. But I’m not okay with someone telling me I can’t, or laughing in my face when I tell them I will. That said, this is the story that details my experience with a dermatologist who did both of the above… told me I wouldn’t (heal on my own) and laughed at me when I told him I was going to research exactly how to do it. During this exchange, I didn’t really have a plan, but there’s just a fire in me that ignites when someone tells me I can’t. Lots of you with HS probably have the same sort of fire burning inside you too. Looking back now, I’m thankful for the exchange—because had it not been for that moment, I likely wouldn’t have put so much effort into learning about—and getting over—HS. Then again, years after that doctor’s visit, my HS spontaneously went into remission, all on its own. It’s only now, looking back, that all the different puzzle pieces line up just right—and paint a clear picture of why I suffered for so many years with HS, only to experience remission when I’d completely lost hope and given up.
My Dermatologist Laughed at Me
I don’t remember the exact words, but I remember a moment in a dermatologists office, that began with a discussion of treatment options, and ended with me getting laughed at. I had just come out of a procedure where a local anesthetic was used to numb the inside of my right thigh. I only had a single HS lesion at the time, but it was a big one. I could barely walk, and had a super-physical job that felt like it required near constant movement. While the resident and attending physician discussed the best way to dissect my lesion, the smell of burning flesh and the sight of smoke rising (from where I was being cauterized), was being etched into my long-term memory bank. I knew what was transpiring wasn’t in any way addressing the root cause of my lesion. The tunnel that ‘fed’ the lesion ran deep into my leg, and the procedure that day only focused on the surface of my skin. I knew that what was wrong was coming from deep inside me and was just manifesting on the surface, it wasn’t the other way around.
‘After the procedure was over, and in the physician’s office, I voiced my concern and asked what options existed if the lesion came back—like it had the many other times the same team of dermatologists performed similar procedures. The answer was two part; stay thin, don’t smoke, and avoid stress, or surgery that included grafting skin. I had a few extra pounds on my frame—but I wasn’t super-overweight, I’d never smoked anything, and I didn’t even know what stress was. I bypassed those three recommendations, and my mind instantly went in the direction of surgery—to recovery, and odds. Recovery would be long, especially given the location of the skin graft I’d need. And, yeah, a long recovery would have been a major issue—I had young kids, and not enough time saved up at work to take off for as long as it would have taken me to recover. Letting go of multiple pay checks wasn’t an option either! Then there were the odds. Would the recovery even matter if the surgery didn’t work? The dermatologist said the chance of success was only 50/50. Considering I didn’t think HS was going to kill me, I didn’t think those odds were that great. Like I mentioned, I knew the procedure performed that day didn’t address the root cause of my HS, or the lesion on my leg, and if we’re being real, I wasn’t super confident that surgery would address the root cause either, or that the physician in front of me would have been the right guy for the job. I declined the surgery and was honest about my plans; I was interested in doing more of my own research on how to improve my HS symptoms on my own—without surgery. That’s when he laughed. My dermatologist laughed at me for declining a surgery with bad odds because I wanted to do more research on my options. As I left the office, he chuckled as he said something along the lines of, “You’ll be back when you can’t stand the pain.”
Could Surgery Make My Hidradenitis Suppurativa Go Away?
I wasn’t sold on the idea, not by a long shot, so I took to scouring the internet. I read stories of some people who’d had success with surgery, and I read stories of people who ended up in nightmare scenarios. It didn’t take me long to decide for sure that I wasn’t interested in surgery at all. What I kept going back to was what the dermatologist told me to avoid before he even mentioned surgery; obesity, smoking, and stress. I knew I wasn’t obese, and I figured stress was why middle-aged men on Wall Street had heart attacks in their 40’s, but I couldn’t let go of how smoking impacted hidradenitis suppurativa. Somehow, I ended up on Tara Grant’s website. Here was a woman who lessened her HS symptoms through diet, mainly by avoiding the nightshade food group. She even wrote a book about it called The Hidden Plague.
Finding Tara Grant, and reading about her experience on her blog (I’ve never read her book) was a breath of fresh air. Knowing I could positively impact my HS symptoms with diet gave me hope. Unfortunately, it didn’t last long. The nightshade food group is like a virus that’s infiltrated just about every recipe in every recipe box in America. I tried many times to stick to a diet without nightshades, to no avail. To say it’s difficult is an understatement—especially when trying to avoid talking about HS with everyone that watches you eat. The conversation with my dad about not eating potatoes contorted his face more than I’d ever seen prior (insert eye-roll here). The info from Tara Grant was useful though, because even though the focus was on nightshades, the topic of inflammation came up. I heard a perfect description of inflammation last night while watching the documentary HEAL on Prime Video, “Inflammation is a fire that burns the house down.” EXACTLY! To slap new pieces of siding on the outside of a burning house doesn’t stop the fire raging inside that eventually consumes it!
Is there a Permanent Cure for Hidradenitis Suppurativa?
There may not be a cure, but, there is hope! And hope is greater than a hidradenitis suppurativa cure! After years of messing around with my diet, I raised my white flag, and completely gave up. At that time, I’d lived with HS—day in and day out—for a grand total of about four years straight. Constant pain, the cycle of having my lesion open and drain, then heal and get red-hot to the touch again. It was my norm. It felt like my lesion had a mind of it’s own… and that it lived only to destroy me! The pain was so bad I can’t even put it into words. I seriously considered surgery again. In fact, I actually told my boss at work that I would likely need some FMLA time to recover after skin-graft surgery. I don’t think I specified HS by name to him because I really didn’t want to have to explain what I was dealing with. Again though, I decided against it—because the thought of going through the surgery and not having the surgeon get everything terrified me. I’m an aircraft mechanic. I’ve built a career out of troubleshooting aircraft discrepancies by identifying the root cause. I knew something was causing the puss to form inside my body that drained out of the tunnel that fed my lesion. I didn’t know how deep the tunnel went, but I knew the lesion and tunnel weren’t the real issue, and that I needed to identify the real issue. Grafting healthy skin over the tunnel just meant the puss would need a new exit strategy—the tunnel would re-route to get to my skin’s surface some other way. That’s sort of what happened with the procedures my doctors had already performed, and it was such a nightmare on a small scale that I didn’t want to risk experiencing it on a bigger scale if the surgery didn’t remove the real source of the problem. So, I went back to what is familiar to me. Troubleshooting.
What was causing the puss? Inflammation. With my 20/20 hind sight, I can see now, that I’d have been better off listening to the dermatologist! My mistake was in focusing on the wrong piece of the dermatologist’s advice! I should have paid more attention to what he suggested I avoid; obesity, smoking, and stress! Inflammation is usually present in those who are obese. And, low and behold, during my years of online research, I also learned that tobacco is a nightshade. Nightshades are a pro-inflammatory group of plants—I guess it doesn’t matter whether you eat them, or smoke them—thus the link between HS and smoking. So, if nightshades are pro-inflammatory, and using tobacco contributes to HS symptoms, why didn’t my attempts at diet change positively impact my HS symptoms? It’s so clear now—because diet isn’t the only thing that impacts inflammation! Similarly, obesity isn’t the only thing that impacts inflammation either!
So, are you wondering, if diet didn’t work, what did put my HS into remission? I’ll give you a major hint, the dermatologist spelled it out for me in black and white. Unfortunately, I skimmed right over it because of my own ignorance. In my next post I’ll go into detail on the last piece of the puzzle and what finally put my HS into remission.
Does focusing on something, and not getting the expected result sound familiar? Have you worked like crazy at adjusting your diet, hoping to improve your HS symptoms—only to end up burnt out, and disappointed, because your efforts yielded a less-than-desirable result? That was totally me. I struggled for so long, and had nothing to show for it at the end of the day. But now my pain is gone—and I believe my experience is repeatable. That means there’s potential for your pain to end, just like mine did. The single factor that contributed most to my inflammation is what’s on tap in the next post, so use the sign-up form below to get on the mailing list to get a link to that post delivered right to your inbox as soon as it’s published.
For now, remember… Hope > Cure!
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