My Story

Welcome to this site!

Either you are here because you have been googling Hidradenitis (HS) because you want to put a name to your suffering, you are a member of one of my HS groups, or you (hopefully!! maybe!!) are a doctor researching HS.

It doesn't matter why you are here. I am just happy to have you.

When I was 13 I was very active, playing softball on multiple competitive teams throughout the summer. Suddenly, under my arms I started to have these red bumps that were tender to any pressure or touch. Eventually, these bumps grew into massive, golf-ball sized monstrosities and, finally, they would leak pus.

Initially, I thought these were a result of the friction from playing softball. After all, I was a fast-pitch softball pitcher. However, once winter came and my games were fewer and fewer, these bumps were coming just as ferociously as before. Concerned, my mother took me to a doctor who put me on antibiotics.

This didn't help.

Accepting this pain as a part of life, my life, I continued on until I started to get them in my groin area. I continued searching for a doctor who could assist me beyond a script for antibiotics, but nobody was familiar with this condition. In fact, it wasn't until I was 16 that a name was put to it by an elderly doctor who matter-of-factly told me the only cure was antibiotics. A little shy, I always took the prescription, but never filled it. Instead, I just looked for another doctor.

This pattern followed me through college, moving to Paris, France, moving back to the U.S., through graduate school, getting married, and the birth of my first child. None of the doctors I have met know anything, but were always happy to provide me with a prescription. One of my doctors, the same wonderful woman who delivered my son, was very sympathetic, but again, she did not know anything.

Because my "aliens" were now popping up on my breasts and bottom as well, I finally decided to take my health into my own hands and did a lot of online research. I found HS-USA as well as the HS Natural Healing yahoo group. These two groups have given me more comfort than I can express. I am now semi-controlling my HS by lowering my stress levels, exercising, eating whole grains instead of white sugar and flour, using tea tree oil products directly on the lesions, natural progesterone, and relying on my other sufferers for advice, and sometimes even a shoulder.

I still have days where I am in a lot of pain and feel limited. And I definitely, nearly every day, feel the pain of having a scarred body. I am getting closer to self-acceptance, but it is all a process, really. This is exactly why I have started this site.

Do you have your own site? If you share it in the comments section, I'll link to you. Feel free to link here or share this site as well.