The Blue Light Treatment (Part 2)

In case you missed it, check out Part 1 of this series!

The first minute was okay. 'Okay' translates to heat as if you are sitting on a leather seat that has been baking in the sun on the hottest day. After that... well, that little hand fan was laughable. I mean, how can I describe this? The heat of a thousand suns. A blow torch. Soldering guns. You know that horrible product that was like fake bacon, called Sizzlean? I felt like my girl parts were like that.

So by minute three, I was singing. I was singing jazz, I was singing bluegrass, I was singing punk. True to his word, the medical assistant came in at 10 minutes and asked me how I was doing, because I was halfway done. By that time I had sweated through my clothing that was still on my torso and said in my deepest tortured voice, "Only halfway???" He left quickly again, not even asking if I wanted to quit. I’m assuming I just had to wail loudly that I wanted off the ride and someone would hear me.

Back to singing. I had to tell myself not to rush the songs just because I was on fire.

I made it and I didn't tap out

And then finally, the torture was done. I made it and I didn’t tap out. The medical assistant came in and disassembled the setup and I slowly lowered my legs, as now my girl parts were scorched and red. I somehow got my clothing back on and returned to the front waiting area. But my torture wasn’t done yet, because I ran into another problem.

I am unable to drive because of another health issue, and so I have to use the paratransit system. I called them and they said they wouldn’t pick me up for another hour and a half. I was on fire. I tried to sit for a while but I was incredibly uncomfortable, so I tried to wait outside so I could stand and walk around. Then someone from the office came outside and told me that I wasn’t allowed to be outdoors because I had a treatment and the sun would affect me. I think they were thinking the treatment was on my face because where I was treated, there wasn’t any sun reaching it. I didn’t want to say that in front of the entire waiting room.

It felt like a severe sunburn

I went back inside and tried to sit again but really started sweating. So I asked the desk if I could get a key to the bathroom (the state where I live often has bathrooms outside, not inside at a lot of facilities), and they offered to let me use the employee bathroom inside. Yes! Once in the bathroom, I just started splashing water on my girl parts. I figured that whatever was supposed to work between the acid and the light should have been done. I really did have what amounted to a severe sunburn. It was horrible. I’m also very self-conscious like a lot of HS patients about odor, and I felt like I did not smell pleasant. I had been sweating through my clothes and my flesh was burned, and I was painted with weird acid. All I could think about was getting home, taking a shower, and laying down under about 20 ice packs.

My ride finally arrived and I felt every bump and bounce. I apologized to my driver for being a little out of it - usually, I am chatty and friendly, but I think I earned a pass that day.

I should have done more research

This experience reminded me that I needed to be more diligent about researching the treatments being offered. A doctor can have all of the equipment, all of the resources, all of the ideas, but must execute them properly and appropriately in order for them to work. And a patient must be able to agree or disagree that a treatment matches their issue. I didn’t look this one up. That isn’t my usual practice. I look everything up.

So I’m going to attach a few publications for you to read, and you can draw your own conclusions, but according to these, the acid/blue light combo doesn’t necessarily give me confidence in its effectiveness in treating HS. Most importantly, neither does my experience. It didn’t change anything for me. Ultimately I still continued with my laser treatments, which have been so much more effective with keeping the lesions away.

• ALA-PDT and blue light therapy for hidradenitis suppurativa
• The use of photodynamic therapy to treat hidradenitis suppurativa a review and criticalanalysis