OP- wow, if I had your Kaiser, I would be much happier. When I was on Kaiser, they refused to diagnosis me with anything. I went to a non-Kaiser derm, who then sent me to be a case study with a Dermatological Group, where I finally got diagnosed. And then, Kaiser refused to accept the diagnosis for over a year! Once they finally accepted it, they refused to do any experimental treatment, said anti-biotics and surgery were the only thing they would approve. I said no to anti-biotics. My abscesses have been cultured over and over and the cultures always come back negative for everything! I only said okay when surgery was needed.
I’ve wanted to do the laser therapy for a while, and now that I’m a new insurance I think it is finally going to happen. I just switched this March. Like I’ve said, I’ve read almost every research article out there about HS. I can’t wait to try the laser. Also, I would like to try some sort of anti-TNF drug, which will hopefully help all my other immune problems.
HS is part of the acne triad. But sometimes I feel like that labeling does a disservice to the patients. I’ve had doctors look at me like “It’s JUST acne.” It’s not just acne, it’s a serious disease that if it doesn’t go in check can severely worsen quality of life.
My flares are mostly in the groin. I’ve had only one in the armpit, but that one has been the worst so far. It was so debilitating that my right (dominant) arm was useless for almost a year before the surgery, and now it’s almost been a year after. I now have full function of my hand, the abcess was putting pressure on some nerves so my hand would go numb when I drove. Not a safe thing when your driving a hot, green driving horse! But this summer, my goal is to get back into the horses. My mare has had two years off, I’m feeling pretty good, time the mare goes to work.
I’m overweight as well and trying hard as hell to lose it. I don’t lose with just diet, my body just goes into starvation mode. So I have to exercise. My heaviest was 230 lbs, size 20. I’m now 199 lbs, size 16. My first goal was to get under 200, next goes is to get out of the “Obese” BMI range. So about 180. Dream range would be 155lbs. I’ve learned now to just push through the pain and exercise if I have an active flare. I just make sure I put plenty of gauze to pad the area and I always wear compression shorts and shirts so I have no skin rubbing on skin.
My saving grace, I kid you not, when I have an active flare is medical honey. I use the brand MediHoney. It’s expensive but it’s helped the abscesses rupture more quickly, helps with the pain, heal more quickly and with less scarring. I started using it on my surgical incision this summer because the incision kept ripping open, it’s the only thing that helped it close. My surgeon was amazed, and said to keep using it. I tried it on an abscess that just would not rupture or heal. Next morning, it popped with NO pain! And soon healed with less of a scar than normal. (This was a recurrant abscess) If you are going to try it however, make sure you use medicial honey made for wound care.
I don’t think sidesaddle would work for me, my goal is to keep pressure off that tailbone so that Pilonidal abscess doesn’t come back. I think huntseat/forward riding is going to be it for me.
It’s just an embarassing disease! I hate being 22 years old and unable to shave. Plus, I hate how it has taken my passion away from me. I’m hoping I can go back to riding, but I also have to realize that may not happen.
