- CASE FILE
Living with a debilitating, painful, depressing, disease. No pill, shot, or surgery helps me to see the light at the end of the tunnel.
ABOUT THIS CASE FILE
I had my first HS flair at the age of 12. Thinking it was just a normal boil, on the side of my left knee, in the crease of my leg. I never got another one until age 15, and that’s when my life was turned upside down. That one appeared on my buttock, at the very bottom, of course where a good ole crease is. A trip to the ER, and about an hour later, out with a diagnoses of Hidradenitis. I never heard of it, at all in my life. Me, nor my mother really even gave it second thought thinking, “oh its just a fancy term for a random boil”. That’s until a few months later came another one in my groin, and another trip to the ER. Still, no doctor had even attempted to describe what I was up against, or if I even knew what it really was. I met with a surgeon around age 17, when I mentioned it to a new family doctor I was meeting with, of course there also to get another boil lanced. He referred me to a surgeon, whom put me to sleep and went in to open, and dig out my seemingly out of control spots. Only affecting my butt, and the bottom of my vaginal lips. Everything seemed great after the surgery. But while things seemed to be calm, I would notice about a week before my monthly cycle, I would have a bit of swelling under my arms and in the crease of my thighs. Never anything too painful that would require lancing. The swollen lumps would go down in size, and go away around day 4 of my cycle being on. I then turned 20, and that’s when all hell broke loose. Suddenly every month now, the painful is increasing, swelling making it uncomfortable to walk. Next thing I knew I’m at the ER often, either every month or every other month getting lanced. Screaming at the top of my lungs while the lidocaine was being injection. Crying hysterically, because I just don’t understand “why me”. The ER doctors not really being sympathetic. Making me feeling disgusting. Embarrassed. Wondering, so we just lance them every time, and keep it moving until the next one. Does anyone care? Does anyone understand? Is it just me? I then began researching. Googling everything to try and figure this out. But I come up with nothing. There is no cure. It progressively gets worse. To lose weight. That’s all I remember reading. So, I dealt with it. Dragging my mom to the ER with me every time. Squeezing her hand, while I yell out and ask why me? Screaming out how tired I am of this. How I cannot live like this. Seeing the look on her face while trying not to cry to be strong for me. The final straw was after I had my son 6 months ago, and a week postpartum I ended up with the most horrible flair I’ve ever had. I couldn’t sit. I couldn’t lay down. I couldn’t walk without basically squatting, legs gapped opened, crying because I had a flair the size of a golf ball at the bottom of my vaginal lip, connecting to the crease of my thigh. I couldn’t go to ER with a newborn. I had no one to watch him while I went. My mom was my only help and she was working. I couldn’t drive myself due to recovering from a cesarean section, and not being cleared by my OB. I instead called around to 6 or 7 different dermatologists, desperately trying to get in to a same day appointment. The last place I called I was able to get in the next day at, The Dermatology Group in Cincinnati. I had to catch a Uber there, with my week old baby, barely unable to walk, not only recovering from a cesarean section, while smiling at the Uber driver as if nothing was wrong. Fighting my tears because the pain I was feeling was unreal. I get to the dermatologist office having to lean on the counter, gripping the handle of my son stroller trying to not pass out from the pain of being unable to stand up straight. I couldn’t sit in the chairs while waiting to be called back without feeling as if I was sitting on bricks with embedded needles, and torches striking my bottom. Still smiling at everyone, praying no one is paying attention to my tears falling. After being taken back to a room, Dr. Jessica Perkins walks in. She looks at my abscess and says “I’m so sorry, but this is one of the worst ones I’ve seen in my career”. She lanced it, gave me hug and let me just cry on her shoulder. She sent me home with antibiotics pills, and a handful of clindamycin gel. Told me to apply it after every shower where my most affected areas were, and to use Hibacleanse every other day in the shower. I followed her rules. I went home still in major pain, thinking it may have been poorly done, and not right. She then called me a couple of nights later from her personal cell phone, on the weekend to check on me, saying how worried about me she was. Told me to save her number, and call if needed. No doctor has EVER done that. I ended up having to call her back, letting her know the pain wasn’t letting up, and that something wasn’t right, and I was going to head to the ER. I told her where I was going and she said she would call and give them a heads up that she thinks it would be in my best interest at the moment I should be put to sleep to go and surgically drained. I agreed. I wasn’t going to be able to handle another lidocaine injection. I get to UC hospital, and met with a ER doctor who was very rude to me. He refused to open it again, and instead wanted to shove more antibiotics at me, and told me to go back and see Dr. Perkins and she could do the surgery herself. Me, and my mom both left very shocked and angry. I didn’t say anything to anyone, but at the moment I contemplated suicide. But I knew that wasn’t my way out, now that I have a son to live for. Who needed me the most. I have been seeing Dr. Perkins now every since. When I get flairs, I go into the office for Kenolog injections. Although not comfortable, it beats lidocaine injections to prepare to be lanced. I’ve also been prescribed Spirolactone. I’ve been on it for about 4 months. It has not made any improvements, actually I think my flairs have gotten a bit worse. But I’m desperate so I’m hoping, maybe one day it’ll kick in and finally work. Humira has been offered, but I also suffer from IIH, and Dr. Perkins doesn’t think it’s a good idea for me. We’ve discussed a few other pill options but again, also having IIH has me unable to explore and try them. So yet I’m left feeling defeated. Lost. Scared for my future now that I’m a mom. Worried every day if I’m going to wake up with an abscess. What if I lose my job? I can’t call off every time I get one? I don’t want to explain it, to a supervisor, a random person, my personal embarrassing disease. I have surgery scheduled for 8/30/2019. The surgeon I met with took a look at my groin area, and said “my goodness you are full of lumps down there. We are going to get you some relief.” I want to believe him, I do. I heard he’s great. But I can’t bring myself to have hope. I can’t bring myself to say “this may be the magical doctor, with the magical scalpel that’s going to make this all better.” This can’t be life. This isn’t fair. I want to be able to go to the pool or be able to get in ocean, without worrying about the risk of further infections. I can’t with constantly draining wounds either way. I want to be able to go hangout with my friends, and family whenever, and not have to say “sorry, I don’t feel good and can’t walk”. I’m tired of making plans, just to wake up, and have to cancel because a golf ball size lump has appeared, and I can’t let my arms down. I can’t continue to ask my mom to care for my son, when I can’t even hold his bottle due to the knots under my arms. Or I can’t sit up to change his diaper because I have rock hard abscesses on my vaginal lip, causing it to swell over the other lip. The thought of my son even ever have to deal with this disease, makes me sick to my stomach. I pray everyday he doesn’t have to deal with anything like this, ever in his life. Someone has to help us HS sufferers with this disease. Please help us.