Diagnosing/Why Me?

"Do I really have this? How can I tell?" - Only a doctor can tell you for sure since Pilonidals take different courses in different people.  Some people may just experience a bit of a pain when sitting, others may only have some drainage and no pain, still others will be making a trip to the ER or surgeon because they are in excruciating pain.  The usual signs of an acute infection are swelling and pain in the tailbone region.  Most people end up at this site by Googling "tailbone pain".  

"Why did I get this?" - Even the doctors don't agree on this issue but we can give you the two prevailing opinions:

• The "congenital" camp suspects that all Pilonidals are the result of poor formation of the lower spine during gestation.  There are babies born with what is medically called "Pilonidal Dimple", "Sacral Dimple" or "Pilonidal Sinus".  While there is not much solid information, the primary suspect is thought to be Spina Bifida Occulta, which is a much milder form of Spina Bifida.  

• The larger portion of doctors (about 99%) believe that most Pilonidal Disease is acquired -- but there are two differing theories on cause here as well!  Without getting too technical (if you want technical, see the Knowledge Base.)  the primary theory on Pilonidal Disease involves "follicular occlusion" which is the blocking and inflammation of pores in the midline of the buttocks. This tends to occur in the tailbone area because of the friction and pressure on the area that stretches the pores when the person is sitting. We caution people everywhere in this site to make sure your doctor has the latest info on Pilonidal Disease.  There are an appalling number of "old school" doctors out there who still think that Pilonidal is completely congenital and there is no way to get rid of it. 

"Is this hereditary?" - It frequently is, there are plenty of instances where multiple family members have Pilonidal Disease. Doctors speculate that this is due to an inherited weakness in the skin over the gluteal fold and in the shape of the natal cleft. 

"Does weight have anything to do with it?" - It is generally suggested  that being overweight does encourage Pilonidal Disease but is not a sole cause.  Pilonidal Disease occurs most frequently in those with deep natal cleft (aka: your crack), as most of us gain weight, out butts get bigger and the cleft gets deeper. The deeper the cleft, the more moisture and debris that gets trapped in it.  

"Can it be cancerous?" - Very rarely. As of 1999, fewer than 50 cases have been reported and those were mostly in people who had refused treatment for many, many years.  When you undergo surgery, your doctor will probably send the tissue to the lab for testing just to be sure. 

"Can you get Pilonidal Cysts in other places?" - You may run across references to Pilonidals in other body regions, but technically a Pilonidal occurs in the natal cleft area only.  There are similar type cysts that have been reported in the Umbilicus (Navel), on the breast, in the pubic region and in the armpit...these locations suggest Hidradenitis Supperativa, rather than Pilonidal Disease. There is a similar disease called Barbers Pilonidal Sinus that is caused by hair digging into the soft tissues between the fingers.  It tends to occur on animal groomers and barbers. 

"Any other theories?" - There has been a published study that suggests congenital Pilonidal Sinuses are caused by the prenatal formation of a "human tail" which showed up on ultrasound findings in 6 fetuses at 14-16 weeks.  The abnormality disappeared at 22-23 weeks gestation and the newborns were all noted to have skin abnormalities such as Pilonidal Sinuses, dimples and scar tissue. It has been noted that very rarely do these deformities lead to Pilonidal Disease later in life. 

"What does the cyst feel like?" - Usually, you can feel a lump in your tailbone area. The lump can be as small as a pea or as large as a golf ball.  The lump moves when you press on it - bone feels like bone and doesn't move. Usually, the lump will hurt when you press on it. Not every case of Pilonidal Disease involves an obvious lump (abscess), some people just have draining sinuses and cyst is buried too deep to be felt. 

"What is this little hole in my backside?" - That is a sinus opening. A sinus is a tract that links your cyst to the top of the skin. Not everyone who has a Pilonidal Abscess has a sinus. If you have a sinus, you can be assured there is an abscess to go with it somewhere or one will likely form in the future. It is possible to have multiple sinuses. Some doctors speculate that sinus openings only form in response to flare-ups, but I can tell you that I noticed my sinus hole a good 12 years before my first real flare-up, so the jury is out on this one. 

"How do I know it's infected?" - It hurts. It really, really hurts. If there is a sinus, there may also be a foul smelling drainage that can be a variety of colors from clear, brownish, white pus or mixed with blood. For a lot of people, the first time they hear the word Pilonidal is in the emergency room where they had to be carried, screaming in pain the whole way. When a Pilonidal Abscess is infected (inflamed, acute, "flaring up") it will swell and make it almost impossible to sit, stand or lie down, since any movement seems to make the pain worse. Several women have posted that the pain of an acutely infected Pilonidal Abscess is worse than childbirth. So, guys, now you know!

"Why am I itching like crazy back there?" - Itching is your skin's response to the infected fluid draining from the cyst.  If you are itching, you have an infection.

"My lower back has been hurting like crazy, it is related?" - Possibly. A significant number of people report this symptom and the pain usually goes away after healing from surgery. There are no notes in the medical literature on the relationship of lower back pain and Pilonidals but the theories of those of us who suffer are as follows:

• It might be that the abscess is pressing on some of the Sciatic nerves 
• It might be because we tend to sit in funky positions due to pain, which throws the back out of alignment
• It might be from the stress that medical problems bring on
   

"What else could this pain in my tailbone be?"  - 

1) It could be another condition called Coccydynia.  http://www.coccyx.org/.  

2) If the infected area is closer to the anus, it could also be an Anal Fistula (a tunnel that goes between the colon and the outer portion of the anus.)
www.fascrs.org

3) It might be a condition in the same family as Pilonidal called Hidradenitis Suppurativa, which sometimes forms several "boil" like pustules in areas of the buttocks. www.hs-usa.org

4) There is also another very rare condition called Chordoma (a rare, slow-growing, but locally aggressive malignant tumor) that was discovered during treatment for a presumed Pilonidal Cyst. 

"Are there any tests to diagnose it?" - Not really. Usually, one isn't needed since the person is in pain and has an obvious lump/draining sinus. In some cases, it is visible on a very high resolution MRI with contrast.  Pilonidals are also reportedly visible through Ultrasound.

More info: The Knowledge Base