HS Journey

Last updated: April 2022

I have gotten one lesion for years. Around 2012 I got several lesions in the groin area. No one knew what it was, and I was humiliated. I was married, so how could I have an STD? I went to my gynecologist. She did not know what it was, just that it wasn't an STD. Several years passed and those few lesions had formed sinuses and tunnels. This caused scar tissue. I finally wound up in the hospital, severely anemic from the constant blood loss from the draining lesions. The scar tissue had formed a heavy mass, which was making walking difficult. My husband found a professor willing to find a surgeon willing to remove the mass. By this time, it was 66 lbs. This was in 2016. Since then, lesions have spread, but no scar tissue has formed yet.

Caregivers are hidden heroes

I am in constant pain, and I stay home because I have been humiliated from the draining in public. I made it to retirement (I am a teacher) after 30 years this past December. HS made my last years extremely rough due to pain, worry, exhaustion from not enough rest, and humiliation. I have made it because of my support system of an awesome nurse practitioner, an angel of a husband, and wonderful friends. It has been a nightmare for me as well as my husband. Oh, the things he tolerates, from dealing with the drainage on clothes to making sure nothing happens to embarrass me in public. Our caregivers deserve awards! I recently started Cosyntx. It seems to slowly be helping. The only other help for pain is cold compresses. Antihistamines seem to help the itching.

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