Living with Hidradenitis Suppurativa: Amalie's Story

It should be noted that all though Amalie wishes to share her story, she has requested that her last name not be disclosed at this time. The following is Amalie's story in her own words:

I was fourteen when I really started to understand how different my skin was from other girls. It was in the gym locker room that I saw how everyone else had smooth, pretty skin all over their bodies and mine wasn't like that. I always had what I thought was a heat rash on my bottom. Through out my teen years I tried everything from corn starch powder to acne washes and creams to get rid of it. It would go away for a few days or weeks but always come back again.

I really didn't pay a whole lot of attention to it until I was twenty-three and pregnant with my first child. It seemed like the moment I hit the third month, the rash came back with a vengeance, only this time it spread to my groin area and I had what I thought were boils. As my pregnancy went on, I kept getting more and bigger boils. My doctor at the time, said that they were hormone related and would go away after my baby was born.

I felt so disgusting! Pregnancy was supposed to be a beautiful experience and here I was covered in boils that made it hurt to walk or sit. They got bad enough that I would lock myself in the bathroom and lance them myself with an x-acto knife. The smell of the drainage would make me vomit everytime. It's such an overpowering smell.

After my son was born the boils didn't go away. Instead, they got worse. By the time my son was five months old, I had boils under my breasts, in my arm pits, on my bottom and all over my groin. I accused my husband of giving me an STD. I thought that it had to have been something that he brought to the marriage since this had not happened before I became pregnant. Our marriage was so strained because of these things that were growing on me.

It hurt to pick up my baby or to snuggle him on my chest. It hurt to sit or stand or walk. I was always in so much pain and I was so humiliated because of these big, ugly boils and the way they smelled. I became depressed. I didn't want to leave the house. Most of the time I didn't even want to get out of bed.

I got an infection from self lancing and my doctor put me on erythromycin. The antibiotics not only cleared up the infection but the boils started to go away too! I still had a few, but after two weeks, most of them had gone away so I asked my doctor for a refill. He gave it to me but when the second prescription was gone and I asked for a third, he told me "No". He said that taking antibiotics long term could put me at risk for more serious infections. I was so disappointed. A few months later the boils were back so he sent me to a dermatologist.

I really hoped that this dermatologist could help me. What ever this was, was really putting a strain on my marriage. My husband would no longer touch me and I didn't blame him. My body grossed me out. I couldn't expect him to look at me the way a husband should look at a wife. We barely even spoke anymore.

The dermatologist gave me clindamycin and my regular doctor put me on anti-depressants and pain medication. Within a few weeks, my body had cleared up again! I was so happy! I thought this dermatologist was a miracle worker! My marriage was back on track and life was good for all most a year. Then my dermatologist took me off of the clindamycin, thinking that we had conquered this. Within two months I was covered in boils again.

My husband called my dermatologist and demanded that he put me back on antibiotics. He wasn't exactly civil and as a result my dermatologist dropped me as a patient. I was devastated. I really didn't think that anyone else could help me.

I went back to my regular doctor who referred me to another dermatologist whom he had heard good things about. I was hopeful but also skeptical since these things kept coming back. I went to see this new dermatologist, not really expecting much but I was surprised. He told me the name of my disease. Hidradenitis Suppurativa. He said it was a great big title that basically meant recurring boils in the skin and there were no good treatments and no cure. He walked me through the stages of the disease and told me that I was stage three. He said that if the antibiotics helped me, then that is what we would do. He also told me that if a "leison", as he called them, needed lanced and drained, then he would be the one to do it so I wouldn't get another infection.

I can't describe how happy my husband and I were to finally know what this was. We had a name for it, we had antibiotics and most of all, we now knew that it wasn't an STD. Everything was going to be just fine now!

And it was. The majority of my lesions cleared. I was left with only a few small boils that weren't terribly painful. My husband and I forgave each other for how awfully we had treated each other during the past months and we became the happy family that we were supposed to be. Our baby was growing and learning to walk. It seemed like perfection. Now I know it was the calm before the storm.

During that period, I had been on several different antibiotics. My dermatologist changed them every few months to keep my body from building a resistance to them. My lesions were small and infrequent. There were only a few that I had to have lanced and drained. Then during one of my dermatology appointments, my doctor told me about a drug called Accutane. He said that it held some promise in possibly curing my HS but that I needed to be aware of the side effects to make an informed decision. He said it could cause damage to my liver, pancreas and esophogus. It could cause birth defects and premature births and suicidal thoughts along with brain, muscle and possibly bone damage and the list went on and on, but during that visit, the only thing that I really heard was "cure".

I took the literature home and went over it with my husband, who immediately told me that it was too risky but I argued with him that it could cure me. It was the cure that I had wanted for so long! To finally have that miracle of being normal within reach! Cure. It's such a powerful word to those that are chronically ill.
It was all I could focus on. That one word held such a bright future. I went back to my dermatologist and said yes to Accutane.

The first month on Accutane I felt nauseous and irritable. I thought it was just my body adjusting to the medication. By the second month, I was completely covered in boils again. The literature said that some people get worse before they get better, so I just thought that is what was happening to me. The third month I was sick. I was covered in boils and vomiting. I was weak and hateful to everyone around me but still, I believed that this part of the treatment would subside and the boils would go away. I now had more boils than I had ever had. I was miserable but I convinced myself that this was just the disease telling me good-bye.

My fourth month on Accutane, we found out that I was two months pregnant and my doctor immediately took me off of the drug.

That is when the miracle I had been waiting for finally came. The boils started to go away. I decided that Accutane was a mistake afterall and chalked it up to false hope. I still had boils but not as many as with the Accutane. These were more manageable than during my first pregnancy. It seemed like everything would be all right until after the baby was born and I could get back on antibiotics.

I was sicker during this pregnancy. The morning sickness thought it may as well hang around all day. I felt so weak and tired. My Mother had told me that each pregnancy would be different. I thought I was having a really tough pregnancy until, in my twenty-second week, my water broke while I vacuumed our living room.

I gave birth two hours later. Our new son was stillborn. His head was severely deformed. We were later told that it was most likely the result of my having used Accutane during the early part of my pregnancy.

My world fell apart. My quest for a cure had killed my child and ultimately, ended my marriage. The strain of having HS and losing our child because of a drug that I had taken was too much for our relationship.

The stress and depression caused my HS to flare out of control. I lost custody of my son because I could not take proper care of him with my disease as it was. I moved home with my parents and stayed there for five long, depressing years.

I eventually pulled myself up with a lot of counseling and encouragement from friends and family. I see my son every weekend and I now have a husband who understands what I go through with HS. He isn't repulsed by me and he has helped me to not be repulsed by me. I still have HS. There really are no long term treatments. The lesions come and go. There is still no cure. But at least now, I have learned to live with it.

I no longer look for that "miracle cure". I simply take it one day at a time and know that even if there is never a cure, my husband loves me and I like me now. That is what is most important.