Pilonidal Cyst Disease
Several weeks ago my 16-year old daughter mentioned that her tailbone was hurting. When I inquired as to what she might have done to injure it, she had no idea. She thought that maybe she sat down too hard on a chair at school. She let me look at her lower back but I did not see anything unusual. I told her that her tailbone was probably bruised and to try to rest it as much as possible. A couple of days later, she was at a Sea Scouts Regatta practice about an hour away. Late in the afternoon, I received a phone call from the ship’s Skipper saying he was worried about my daughter as she was in pain and just lying around (this is not typical of her during regatta practice!). He said they would be home soon and just wanted to let me know.
When she arrived home, she was in tears, almost hysterical. She told me she couldn’t stand it anymore and it hurt so bad. She asked to go to Urgent Care. Of course they were closed on a weekend evening, so we headed to the emergency room. Upon examination, the doctor informed us that she had a Pilonidal abscess (sometimes referred to as a cyst). He explained to us that there are several causes, but most likely in her case, that it was how she formed in the womb. He said the two sides of the buttocks are the last area to come together when a baby is forming and sometimes where they meet, it is kind of uneven, which can cause these cysts. He mentioned that he also had them when he was in college and he remembers how very painful they were.
What IS Pilonidal Disease?
The doctor continued to tell us that most of the time surgery is needed, as the cysts are very hard to get rid of. He hesitated to lance the cyst, as it would have to be healed before surgery could take place. After speaking with a couple of other doctors, they decided it was best to leave it alone and that she should see her doctor immediately on Monday (and she would probably be referred to a surgeon). He prescribed two different antibiotics as well as pain meds.
Neither myself or my daughter had ever heard of this disease before, but apparently is happens more than people realize. It is most common between the ages of 16-26, and happens mostly to males.
We saw her doctor on Monday and she mentioned that she has seen a few cases of this recently. The doctor was surprised that my daughter had been able to attend school the previous few days, and ordered her to stay home from school for the rest of the week. She made a few calls to the hospital, spoke with the pediatric surgeon, and they determined that my daughter would need to be admitted to the hospital the following day for IV antibiotics and possible surgery. I was scared beyond words. What was happening?
That night I spent hours online, researching this mysterious disease. I was actually horrified by most of what I read and saw. I found out that there are two different types of surgeries – traditional, where they remove the cyst as well as the “sinuses” that run from it (and can cause more cysts pop up in the same general area), which can be quite deforming and painful. It takes weeks to recover, and the wound has to be packed daily. I also read about another type of surgery called the “Cleft Lift” method for Pilonidal Cysts, which sounds much less severe, and reduces healing time. Some doctors are experienced in this type of surgery, and I knew that if she had to undergo surgery at all, I would want the best of the best.
While looking online, I found that a fellow mom blogger had also experienced Pilonidal Cyst Disease! She explains it quite well in her posts about her experience and surgery. I found it interesting that she too, first thought that she had a tailbone injury. She also said that it felt like she sat on a tack.
My daughter was admitted to the pediatric floor of the hospital the following morning and they immediately started her on IV antibiotics. We waited and waited for the surgeon to arrive, and he finally showed up about 6 p.m. After he examined her, he decided that he wanted to lance it and hold off on surgery. The sent my husband and I out of the room (gosh it was hard to leave her), they gave her a shot of morphine and began the procedure. When the doctor came to get us, he told us that she is a tough girl…that it is so painful, and she handled it like a champ. He believed that he got it all, and hopefully she won’t need surgery in the future. But this is something we will have to keep a very close eye on forever. She was discharged that evening with instructions to take 2 baths a day for awhile, and to keep it covered with gauze. I had to help her the first couple of days. She is recuperating well but this will always be in the back of our mind. Fully recovery should take 6-8 weeks.
Prevention and prognosis
Although this might be awkward to discuss with your teenager (or young adult child), it is SO important. There are several causes other than the formation of the baby in utero, including a deeper “valley” (pit) at the top of the heiney, which can get filled with debris, etc. I would explain the importance of hygiene and possibly suggest cleaning extra well there, just to be on the safe side. This wasn’t the case with my daughter, but every bit of prevention helps.
Pilonidal Disease can lie dormant for years, so once you have it, it won’t just magically disappear. If your teen complains of their tailbone hurting, please, please check for yourself to see if it might instead be a Pilonidal Abscess, and get to the doctor or ER immediately. This is definitely not something you want your child to have to deal with for the rest of their lives.
I encourage you to visit www.Pilonidal.org to learn more about the causes, symptoms and treatment. Please share this with others who have children or young adults in their lives. I’ll bet they haven’t heard of this either!
I’m still reeling from this event. Are you familiar with Pilonidal Disease?