Living With Pilonidal Disease
Once you know you have a Pilonidal abscess you have two choices: surgery or try to live with it. The decision will be based on the frequency and severity of your flare ups and should be discussed with your doctor. Surgery is not right for everyone and it is up to you to read through the options and make the decision.
Each of us has our own level of tolerance for discomfort and our own feelings about the science of medicine. Surgery has its risks but so does choosing to live with the abscess. How severe the drawbacks are depends on how active your abscess is. At the worst case, an untreated Pilonidal cyst that flares up regularly probably keeps getting bigger over time and may even create additional sinuses. Additionally, it keeps your immune system constantly battling infections, which reduces its availability fight other opportunistic infections.
The odds of the abscess going away on its own are not generally very good. Our first suggestion is for every patient with early stage Pilonidal is to try a simple, in-office procedure called “Pit Picking” to remove the Pits that are causing the abscess.
For those who opt to forgo surgery, the cornerstones of self-care for Pilonidal abscesses are hygiene, posture and hair removal.
Clean is the word. Very, very clean. Don’t let a day go by without bathing if you can possibly avoid it. The way nature has designed the human body, the buttocks clamp shut normally and seal out oxygen, providing a breeding ground for anaerobic bacteria. Washing regularly helps reduce bacteria levels and lowers infection risks.
Regular soap should be fine, it has been confirmed that anti-bacterial soaps do very little to protect against germs and are mostly a waste of money, but you might consider washing the natal cleft with Hibiclense daily, just be sure to only use a little bit of the soap and limit the area you are washing with it to just the natal cleft as this is a seriously high-powered antiseptic soap.
One thing that may have to change in your life now that you have Pilonidal is your level of comfort with your body. If you are a person who thinks everything “down there” is dirty and shouldn’t be touched, you are going to have a hard time with this disease. You and many strangers are going to become intimately acquainted with places where the sun does not shine, so you are going to have to learn that your private parts are not bad or dirty; they are a part of your body. They need to be cleaned and cared for.
Aside from being clean and keeping anaerobic bacteria at bay, your number one goal is to keep stuff out of your cleft that might collect into open pits or sinuses. “Stuff” includes hair, dead skin cells, clothing lint, etc.. The best method to remove “stuff” from your midline is to exfoliate the area. Our recommendation is to use mesh gloves or bath “puffs” for the job. Loofah sponges should not be used unless you replace them every few months because they tend suffer from bacteria build up. You should be able to find gloves or bath puffs in the bath products section of just about any drug store. These should be replaced at least once a year.
In some cases, it is actually loose hair from your head that lodges in the buttock cleft from rinsing your hair after washing- it’s wise to always rinse out the cleft as the last thing you do before getting out of the shower. If you are prone to boils or acne on your backside, you might take a look at your shampoo and conditioner to make sure neither of them have any oils as ingredients – those oils might be clogging your pores and encouraging the problem. A great shampoo for those who are sensitive to pore blockages is Aveda Scalp Benefits which helps remove excess sebum (oils).
Ingrown Hair Prevention and Follicle Unblocking
After cleaning, gently swab the midline with a product that helps prevent ingrown hairs.
**both of these products can burn the skin so try using only every other day at first until you see how your skin reacts, use a q-tip to best control the area of application.**
Powder also helps to keep the area dry, especially if you’re active or sweat a lot. Some patients report that Gold Bond Medicated Power helps them with moisture, itching and odor.
So much fun, we have whole page about it
As with all medical treatment, you should discuss these with your doctor/health care provider. Make sure you fully understand your doctors’ instructions and remember your licensed pharmacist is an excellent resource concerning interactions between all forms of drugs whether prescription or over-the-counter. The only dumb question is the one you don’t ask…
- Antibiotics – are the usual route to knock back an infection. Be sure to take them for the full course and DO NOT STOP until you’ve completed the full prescription cycle. Don’t make the mistake of thinking that you can cure Pilonidal Disease with antibiotics. The antibiotics will kill the immediate infection but it will most likely be back since the pits that cause Pilonidal are still there and prone to infection.
- Iodex – Is a topical anti-infective ointment. It has helped some patients during very bad flare ups – unless the infection is beyond the drawing out stage and you need it lanced. To use during the day you should cover with a bandage since it is black in color and will stain your clothes. It works best overnight – apply liberally then cover and use a heating pad. This product is available at some drug stores (might need to be special ordered) or from a variety of online retailers like Amazon.
- Homeopathic Remedies – No one has yet “cured” Pilonidal Disease with homeopathy, herb compotes, Colloidal Silver concoctions, Tea Tree Oil or any other potion. Note that there are plenty of scammers out there who will be more than happy to take your money and sell you a “cure.” If you are rolling in cash and want to throw it away, please donate some to this website 🙂
Pilonidal abscesses do tend to drain during flare-ups if you have a sinus opening or any weakened section of skin such as a scar from lancing. The amount of drainage will determine what sort of dressing you use. Light drainage can be dressed with gauze and medical tape. Suggestions from the forums for dealing with heavy drainage include using feminine mini pads that will tape right onto your underwear.
Be careful how you sit. Pressure from poor sitting positions can aggravate the abscess by placing strain on it. This is especially true of driving since most auto seats put the body into a position where all the weight localizes onto the tailbone area. The name of the game is to keep the pressure OFF your tailbone. No slouching in your chairs, this is suspected to be one of the primary causes of the “stretched” follicles/pores that start Pilonidal Disease.
A must for anyone trying to live with this disease. It is imperative to keep the pressure off your tailbone. Don’t get a “donut” designed for hemorrhoid sufferers. What you need is a Coccyx Cushion that is designed to keep pressure off the coccyx.
Where to buy a Coccyx Cushion:
- Online or at any medical supply store. Prices start at about $20.
- There is also an excellent run-down of various cushions over at Coccyx.org
- Higher quality cushions can be found at TushCush.com
- The ROHO Group also makes a custom seating cushion product. Roho.com
- Gelco Ergonomic Seat Cushions offers a special 15% discount for Pilonidal patients who order with coupon code pilo15. There is a video of the Gelco Pressure Mapping for their GSeat Ultra. GelcoProducts.com.
Also, for those who cannot find relief with the cushions on the market, there is something called a “seat mapping system” that some rehabilitation centers are using to help determine the best type of cushion to use for pressure relief for people with various disabilities. The centers have various samples of cushion materials (air, gel, closed cell, open cell) that could be tried over your chair, car seat or other place and the computer reads out how much pressure is present and exactly where it is over the buttock region. From the readouts they make alterations in the cushion, try another material, or/and change your position to relieve the pressure over the painful or delicate area. These professionals suggest and can customize cushions if necessary to relieve pressure. A prescription is needed for the evaluation. One of our forum participants took her daughter in to determine which seat cushion was best to use on a saddle for horse back riding.
More info on pressure mapping at Vista Medical.
The main overview page for our Treatments section where you can review surgery options, plan for surgery day.
Are you in massive pain right this minute? Perhaps you now have a standing desk because you can’t sit down? Start here.
Look for a doctor near you from our worldwide list of Cleft Lift surgeons and recommendations on our forums.
This page last updated: January 3, 2019