A woman in glasses with a forced, distressed smile. Blue lights, lasers, and music notes surround her.

The Blue Light Treatment

It took me nine years to get my diagnosis of HS. By the time I did, I was wavering between stage I and II, and the majority of my activity was in my groin/labia/bottom cleft area, which really motivated me to seek out effective treatments. This area can’t be taken for granted. Whether I’m sitting on it, going to the bathroom, or just existing, it will let me know that it’s in crisis mode. The one biologic that I had taken for eighteen months up to that point had actually accelerated the disease for me, not at all the direction I wanted to go.

My dermatologist, located 1,600 miles away, had given me my first laser treatment, and it had gone well. However, I’m on disability and I didn’t necessarily have the budget to travel back and forth. I decided to try to find a doctor who would be willing to do the same treatment in my city of five million. This turned out to be easier said than done, much to my surprise.

Finding a doctor familiar with hidradenitis suppurativa

I called approximately twelve different dermatology practices that appeared to have the correct laser equipment, but all led to a dead-end when I explained exactly what needed to be done. They all referred me to this specific office, however, known to everyone because the doctor had built up his equipment to include 19 different lasers, more than anyone else in the area. He is the go-to guy. Do you have a giraffe growing out of your ear? This guy has the laser to take it off. No one else does.

I explained what I was looking for to the front desk person and she assured me they had that laser, so I made the appointment. During my first appointment, the medical assistant said that his sister suffered from HS, and so it seemed that at least there was some sort of understanding with HS. For those of us who have it, this isn’t always the case, so finding an office that has familiarity is reassuring.

I was willing to try anything

When I met with the doctor, I wasn’t reassured. He insisted that the laser wouldn’t be appropriate. I explained that I had already received one treatment and wanted more. He said he “didn’t do that” but he did do another type of therapy: first they applied a type of acid to the area, and then they “baked” it with a light. It was that or nothing. It was the first time I had heard of that type of treatment and at that point in time I was willing to try anything – after all, I didn’t have plants, animals, or children – so my philosophy has always been if anyone should be a guinea pig, it should be me.

I found out that my insurance won’t pay for the acid, so they had to get a sample of the acid procured. When that happened, I returned to the office and they applied it. The acid was in an applicator that reminded me of a lip balm, but it didn’t really do anything to my skin on its own, thank goodness. I was told not to bathe until my appointment the next day, 24 hours later.

Adjusting my expectations around HS

So I arrived for the appointment. I got stripped down from the waist down. I was propped up in stirrups. There was this light machine that reminded me of some hair salon contraptions that was placed in front of me, and the medical assistant told me that I would feel intense heat. He handed me a little battery-operated hand fan and told me that I would want to use it. He also said that he would start a timer on me and told me that, “Some patients make it all the way through twenty minutes, and some don’t. I am going to check on you halfway through. If you really want me to stop, you can tell me, but try your best to get to the end.”

Um, what? No one talked to me about intense heat, or wanting to bail, or whatever was going to happen that might be incredibly unpleasant. I just had a few seconds to adjust my expectations.

“Okay,” I said, “I’m going to sing. I can’t take any pain medications or whatever, so that’s how I deal with pain. I’ll try to be quiet, but that’s what I’m going to do.” Lucky for everyone in the office, I can actually carry a tune and I have a diverse song bank.

He said that was fine. He flipped on the light, made sure it was aimed at my most delicate and vulnerable parts, set the timer, and hurried out of the room.

Read Part 2 of this series!

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