About this story
- Years since diagnosis
- 9
- Stage (self-reported)
- Hurley III in one area (self-reported)
- Treatments discussed
- Surgery
- Body locations
- Groin
- Topics
- Wound care, Scarring, Drainage, Relationships
Personal experience
My diagnosis
I had lived with HS for nearly a decade before surgery came up. One area in the groin had scarred and kept reopening no matter what else we tried. My surgeon explained that removing the affected tissue would not cure HS elsewhere, but it could deal with that one persistent area. I decided to go ahead.
Living with HS
The chronic, recurring nature is what made me consider surgery in the first place. That one spot dictated what I could wear, how I moved, and how I felt about closeness in my relationship. Being open with my partner about what was happening — before and after the operation — mattered more than I expected.
What helped me cope
Personal experience. Recovery was slower and more ordinary than I had imagined. The wound was left to heal gradually, which meant weeks of dressing changes rather than a neat stitched line. What helped me: setting up a calm routine for wound care, asking the nurse to show me exactly how to do it, and not comparing my timeline to anyone else’s. Some days felt like no progress at all, and then a week later things had clearly moved. What worked for my recovery is specific to my situation and my care team’s guidance, not a general recommendation.
What I wish I had known
I wish I had known how normal the slow, unglamorous parts of recovery are. Knowing in advance that healing would take patience — and that “slow” did not mean “wrong” — would have saved me some worry in the first couple of weeks.