Pilonidal Cyst Disease and Our Journey to Healing
After three failed surgeries, a doctor change, and then another surgery, my son is finally healed.
Almost exactly a year after his first surgery on his pilonidal cysts, he is finally healed.
After a year of doctor appointments, wound care appointments, and many tears and prayers, he is finally healed.
What started as a simple diagnosis, turned into a lot of anxiety, frustration, and tears for my son. In April of 2025, my son noticed he had blood in the toilet, so we went to the pediatrician thinking he had hemorrhoids, only to find out that he had several open and infected wounds from several pilonidal cysts.
Pilonidal Cyst Disease is a chronic skin condition where a cyst, abscess, or tunnel (sinus) forms near the tailbone at the top of the intergluteal cleft (butt crack). It is primarily caused by loose hairs or debris puncturing the skin, leading to a foreign-body immune response and subsequent infection, according to the Mayo Clinic. In his case, the cysts had grown, developed and made tunnels down his entire intergluteal cleft (butt crack) making this a much more severe case than the doctors thought. 
Once we were referred to a surgeon, we were told that the surgery should be easy and that she would core out the cyst much like a skin biopsy. After the surgery was completed, though, we learned it was much more severe than she thought. My son had about 14 cysts total and the doctor told us that she had to cut out his entire intergluteal cleft leaving him with 14 stitches. He was cut from the top of his butt crack to the very bottom, which was much more severe than we thought.
After two weeks, the stitches were removed and we went on our way back to our normal life. I remember we were at a baseball game and while he was walking ahead of me, I noticed that he had blood on his pants. His wound had opened up and had become infected. We now know that due to the location of the wound, 30%-40% of patients have complications after surgery like he did. The constant sweating, sitting, and standing up and down all cause trauma to the wound.
Wound treatment for his open wounds, antibiotics, and emergency room trips all became a part of our everyday life. My child was so stressed out. He was constantly checking his pants; he was so scared he would bleed at school or he would have an infection. He became completely obsessed with checking his wound out of fear. Honestly, I can not blame him.
The doctor wanted to schedule another surgery to clean his wound, debris the wounds, and close it back up. Once again after a few weeks, the 12 stitches were removed and we fell back into the same pattern. We would end up back in the emergency room because it would open up and get infected. It was the same cycle all over again, and this time his anxiety was even worse. The fear of bleeding and infection had completely taken over his life.
A third surgery was scheduled for the doctor to place a tube in his wound in order for it to drain. Hopefully this time, the wound would close and heal once the tube was removed. At this point, we were extremely discouraged. It had been about nine months of this and we were all ready to move on and get my boy healed physically, emotionally, and mentally. My already anxious child was in the throes of a mental breakdown daily.
At this point, we decided to get a second opinion, and the new doctor gave us some realistic hopes. She was very up front about this type of diagnosis. Most doctors hate to do this type of surgery because it is such a difficult surgery to perform and heal from. However, she would be able to use new techniques she learned because she had experience performing surgery on patients who had two to three failed surgeries like my son had.
My son had a fourth surgery and the doctor removed a lot more hair and more cysts. She was able to use a dye to track the tunnels in his intergluteal cleft (butt crack) in order to guarantee that everything was removed. A tube was placed in his wound for 2 weeks to help the wound drain properly and we attended wound care appointments every week for the nurses to measure and check his wounds.
I am so thankful for all of the doctors and nurses, friends and family, his therapist, and his wonderful school who have been there for him, praying for him, and giving him encouragement daily.
I can finally say that after almost exactly a year, my boy is completely healed. This journey we have been through has been emotionally, mentally, and physically exhausting. To see your child in pain, not only physically but emotionally, is so extremely difficult. I wanted to take this away from him so badly, but in the end, it is a part of his journey and his story. I pray daily that this journey will strengthen him and make him a stronger person.
