Woman Had No Diagnosis for 10 Years, Has Hidradenitis Suppurativa



  • For over 10 years, I lived with painful nodules around my inner thighs, groin, and buttocks.
  • After finally seeing a dermatologist, I was diagnosed with hidradenitis suppurativa.
  • This chronic inflammatory skin condition has no cure, but treatments can reduce symptoms and pain.

I had always called them “my bumpies.” At 13, these painful nodules began to speckle the skin around my inner thighs, groin, and buttocks. Trust me when I say there’s little more humiliating than needing your mom’s help to apply acne cream to those areas.

A few years later, “my bumpies” disappeared. I was 19 and naively thought that graduating from adolescence into adulthood had freed me. When they came back with a vengeance at 22, I felt utterly defeated.

Your 20s are supposed to be care-free, but these icky bumps made me feel dirty and disgusting. My self-esteem took a nosedive. The simple act of walking could be painful if my thighs rubbed together the wrong way or, worse, cause an abscess to burst in public. Physical intimacy was terrifying for me. I never wanted anyone to see the bumps.

When I finally mustered up the courage to overcome my deep-seated embarrassment and talk to a close friend about it, she suggested I see a dermatologist. That visit led to a life-changing diagnosis and treatment plan that helped me gain my confidence back.

The diagnosis and treatments gave me my confidence back

The dermatologist examined me briefly before concluding, “Your symptoms are suggestive of hidradenitis suppurativa.” She said it matter-of-factly, the jumble of syllables rolling off her tongue so easily, adding “or HS, for short.”

That abbreviation sounded like an STD to me, but I was quickly reassured that, no, it’s a chronic inflammatory skin condition. While the exact cause is unknown, it affects an estimated 1 to 4% of the US population, with women being three times as likely as men to have it. It’s not a marker of poor hygiene, nor is it contagious, and it can disappear and reappear throughout your life. It’s a commonly misdiagnosed condition, and because of the embarrassing areas where it can pop up, HS often goes undiagnosed.

I was stunned. What I’d been struggling with for over 10 years had been identified in 10 seconds.

“There’s no cure,” she said, leaving me disheartened until she added, “but there’s a lot we can do to help manage the pain.”

I was given a corticosteroid injection on the spot — pun intended — a treatment I now seek for debilitating flare-ups. I was told to start using Hibiclens, an antiseptic skin cleanser, two to three times a week on the affected areas, along with a daily topical antibiotic, Clindamycin.

Beyond medicinal treatments, I’ve made lifestyle changes. When I work out, I wear sweat-wicking materials that minimize skin friction. Low-impact exercises tend to be friendlier to my HS. If I do cardio, I’m quick to hit the shower, or if I can’t, I bring a change of clean, dry clothes to reduce the amount of time sweat sits on my flare-up areas. 

The American Academy of Dermatology says research suggests weight loss and dietary changes help lessen HS symptoms, but I’ve lost and gained weight and played with my diet without seeing major differences in the way my HS presents itself. But everybody and every body is different. For now, I’ve learned what works for me, and if anything changes, I know my dermatology team can help. I’m not alone anymore.

A happier, healthier me

Until there’s a cure, I know I’ll have to live with my HS. But now knowing what this condition is and how to treat it, I can finally live my life without shame. Since seeking treatment, I’ve managed to stave off the more painful stages of HS, which makes the occasional bad flare-ups feel less tragic.

Now I talk about my HS more freely with friends and family because I don’t want anyone else to feel the way I felt for so many years. Getting diagnosed and having a treatment plan made a world of difference in my life, as did a supportive partner who loves me and “my bumpies.”



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