Diagnosing: Do You Have a Pilonidal?
Obviously, the real answer here is to SEE A DOCTOR. We generally recommend that a Colon & Rectal Surgeon should be the treating physician if at all possible. Pilonidal abscesses are classified by the medical community as a disease of the colon and rectum even though they affect neither. Apparently, just being in the neighborhood of the butt made Pilonidal a butt-doctor specialty even though they probably should be a dermatology specialty.
Colon & Rectal Surgeons have had more training in diagnosing and treating Pilonidal abscesses than other doctors and are far less likely to misdiagnose a Pilonidal. We’ve heard stories on the forums of doctors misdiagnosing Pilonidals as Anal Fistulas, Anal Abscesses, Boils, Sebaceous Cysts, Hemorrhoids, bruised tailbones or even Sciatica.
Self Diagnosing a Pilonidal
Pilonidal Abscesses usually form just to the side of the top crease in the buttocks. If there are sinus openings, they are typically along the center (midline) of the crease. The lump can be as small as a pea or larger than a golf ball. Usually the lump will hurt when you press on it – if it’s infected it will hurt A LOT. If you have a sinus, it will typically drain a nasty smelling discharge that can be brownish, whitish, clear, or streaked with blood. Some people don’t get a lump if they have a draining sinus – the lump forms as infected fluid builds up inside the abscess. Some abscesses can be very deep in the tissue and there will be no visible sign at all on the skin surface, just very deep pain with no obvious cause.
Many people have lower back pain when their abscess is infected. There is no known tie, but theories from the forums have suggested that the pressure from the inflamed abscess is crowding nerve endings heading to the spinal cord, most likely the sciatic nerve. It also has been suggested that most Pilonidal sufferers tend to “sit funny” to try and get comfortable, which throws the back out of normal alignment. Most people experiencing Pilonidal related lower back pain have generally found that it disappears after the abscess is treated.
- Acute: excruciating pain in the tailbone area, with an obvious inflamed lump at the top of the buttock cleft. This one is a pretty easy call and any doctor who misdiagnoses should go back to medical school. When a Pilonidal Cyst is infected (inflamed, acute, abscessing, 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. A lot of people first hear the word Pilonidal when they are carried into an ER screaming in pain.
- Messy but painless: for those who have sinus holes, their experience with the disease may never reach the acute stage since the holes allow the abscess to drain instead of swell. Some people have minimal drainage with no odor, other people have rivers of drainage with an unmistakable stench that can clear a room. Frequently the drainage will cause itching, which is your skin responding to the fluid being excreted from the infection.
- Stealth mode: some people have lumps that they can feel, but cause very little pain or sinus holes that only drain a few times a year. If this is you, consider yourself VERY LUCKY. Be aware that a sleeping giant can awaken and turn into either of the above unpleasant scenarios at any time.
Tests for Pilonidal
There is not a lot of testing that is applicable to Pilonidal Disease, most of the time the inflamed lump and/or sinus openings is the tell-tale sign.
- X-Rays will not see Pilonidal Cysts. What they may be useful for is detecting Spina Bifida Occulta, which may be the cause of congenital Sacral Dimples.
- MRI uses radio frequency radiation in the presence of a controlled magnetic field to produce high quality images. MRI scans will not usually see a Pilonidal unless the scan is set at a very high resolution. The scans can detect soft tissue swelling that indicates probable Pilonidal activity. There are two types of MRI – with contrast or without. With contrast involves using a dye and provides a much better view of masses such as abscesses. MRI assisted surgery is being used in some Colo-Rectal applications.
- Ultrasound is rumored to show Pilonidals and tracts.
What Else It Could Be
- Coccydynia – rare condition of pain in the Coccyx. http://www.coccyx.org/
- Anal Fistula or Peri-Anal Abscess – if the infected area is closer to the anus. American Society of Colon & Rectal Surgeons
- Hidradenitis suppurativa – a condition in the same family as Pilonidal which sometimes forms several “boil” like pustules in areas of the buttocks. Hidradenitis Suppurativa Foundation
- Chordoma – a rare, slow-growing, but locally aggressive malignant tumor that was discovered during treatment for a presumed Pilonidal Cyst.
What is a Pilonidal Cyst / Pilonidal Abscess? Here is where you will find the basic facts of what a Pilonidal is and how they generally tend to form.
In Fact Sheet format, the questions most often asked on our forums about diagnosing Pilonidal Disease so you can skim quickly to what you need.
Our gallery of photos ranges from pictures of flare-ups to healed scars post surgery. **There are graphic surgical pictures.
This page last updated: Jan 2, 2019