My HS Journey
I first started experiencing symptoms of hidradenitis suppurativa around the age of 12. I'm now 32. It was very painful and confusing, especially since I get it on my groin area. I saw several doctors, including a pediatrician, dermatologist, gynecologist, and then my adult primary care doctor. I didn't receive a proper diagnosis until my adult years.
During that time, I just lived with the shame, silence, pain, and unanswered questions. My mom used to constantly research my symptoms and buy different (and sometimes shady) products online to try to help me. Ultimately, I self-diagnosed myself after years of research, and then eventually had the diagnosis confirmed by dermatologists.
Doctors are becoming more familiar with HS
It seems that more and more of my doctors are becoming familiar with HS, which has felt validating. My symptoms have changed and evolved over the years, and I’ve tried topical and oral medications but have had little success and don’t use any of the prescriptions any longer. I've learned to cope with my flare ups with rest, loose clothing, and hot baths.
Currently, I’m blessed to share that my flare ups have decreased in frequency and intensity, which I attribute to significant weight loss. Additionally, I try to avoid wearing clothing that’s tight in the groin area and I try to avoid conditions that cause me to sweat in the groin area, and when I do sweat, I try to change my clothes as soon as possible.
Hopeful for a cure
I am now a licensed mental health therapist, and I have worked with a few clients who have HS, which has felt empowering to help people who have experienced the same despair and questions that I have. I am hopeful that more treatments and possibly even a cure may be discovered in my lifetime and I’m thankful that more people are learning about HS.
Where did you first hear about hidradenitis suppurativa?