By: Clifton Young
*WARNING* WOUND/SURGICAL/GROIN IMAGES SHOWN AT THE BOTTOM*
Hello fellow hidradenitis suppurativa warriors! Hidradenitis Suppurativa might be a disease that is of the lesser known, but one thing is for sure, it makes a major impact on the person affected by it. When I would look at my HS lesions, I would cry. They lesions looked almost evil to me— with their irregular shape, continuous bleeding and drainage.
How It Began
I have been dealing with hidradenitis suppurativa for over 20 years now. In the very beginning , Humira (a biologic), incision and drainage, and antibiotics seemed to keep everything “at bay”. However, after roughly 14 years these treatments/ “Band-Aids” stopped working. I finally saw Dr. Muneeb Shah in August of 2022 at his practice and in Mooresville, NC. He started me on Avsola infusions every 8 weeks and did some steroid injections to help reduce the pain and inflammation. Since the disease was extensive, Dr. Shah recommended that I see Dr. Chris Sayed (who operates a Hidradenitis Suppurativa clinic) at UNC-Chapel Hill.
In December of 2023, I was evaluated by Dr. Sayed. After consulting with him, and looking at my options, I decided that surgery was going to be needed for long-term relief from pain and embarrassment caused by HS. I was referred to Reconstructive Urology at UNC-Chapel Hill to see Dr. Brad Figler. For you see, hidradenitis suppurativa had pretty much consumed my groin area— mons pubis, scrotum, and perineum. I felt as though hidradenitis suppurativa robbed me of my manhood- I could no longer use a urinal and when I sat on a toilet, my mons would get stuck around the seat of the toilet due to extreme swelling.
The First HS Surgery, on my Groin
March 1, 2024 I underwent major surgery- total excision of mons pubis, excision of lesions on my inner leg/outer leg/thigh region, partial removal of scrotum (repaired with a posterior perineal fasciocutaneous flap) and a left orchiopexy. Upon waking up in recovery, I was thinking “wow these surgical underwear are awfully tight” 😊 I also felt this weird tube down below—finally realizing I was catharized.
I laid there thinking oh my goodness what have I done? The wounds seemed massive and the gauze packed in the wounds seemed endless. As each day passed, I felt better and better and while I had some discomfort it was not like the daily gut wrenching pain caused by HS daily. The bandage changes seemed to be a burden initially, but after I got the hang of it and developed my packing system it became easier. As May of 2024, I had pretty much healed up. Dr. Figler and I planned to have him work on the perineum area later in the Fall. Early October 2024 rolled around, and it was time to go back under the knife again! Dr. Figler addressed the perineum area and took care of some additional scrotal lesions. It took a few weeks of daily bandage changes, but it healed up very nicely.
Upon a regular HS check-up in late October of 2024 with Dr. Sayed we identified an abdominal lesion that needed to be taken care of, as well an old lesion on the scrotum that became active after my surgery in October. I was dealing with drainage and discomfort from both. Dr. Sayed discussed deroofing and offered that as a treatment option instead of another major surgery. I decided to go with deroofing the abdominal area and the scrotal lesion. I’d read a lot online about deroofing and the information varied regarding pain, success, etcetera.
Then Deroofing
In November 2024, Dr. Sayed deroofed the abdominal area. It was not painful at all. Best of all- no major wound care just Vaseline and a bandage! I am pleased with the outcome. By December of 2024 I felt like a NEW MAN! Suddenly life was not so dark and gloomy, and my depression was much better. I was able to walk and sit without pain, and I didn’t have to stuff my underwear with rags and bandages. February 2025 Dr. Sayed deroofed the scrotal lesion. Again, no major pain or wound care. The area has healed up nicely without complication.
Your Scars Tell a Story
As with any surgery or deroofing there is a chance of scarring and HS lesions can leave nasty scars behind as well. I have scars from surgery, deroofing, and old HS lesions but I embrace those scars as they are a part of me physically and emotionally. More importantly, guess what my fellow HS warriors- my SCARS TELL A STORY— they tell the story of a man who did not give up on a dreaded disease or allow that disease to consume him entirely. Those scars show I fought my fight with HS, and while it might have won the battle, it did not win the war.
All in all, I had a great experience with both surgery and deroofing. Both helped change my life for the better. A knowledgeable HS medical team is crucial- Dr. Christopher Sayed is the most knowledgeable and compassionate HS specialist I have ever met. He takes the best care of his patients. Don’t settle for second best when it comes to your health. If you have to travel 4 hours for the best medical care do it—you owe that to yourself. If you are considering surgery or deroofing don’t let the fear of pain or scarring deter you. Show off those scars BE PROUD OF YOU AND WHO YOU ARE—A SURVIOR.
