Not all PC patients suffer from cysts. For those that do, cysts can be painful, irritating, or create a risk of infection. Cysts are closed pockets of tissue that can be filled with fluid, pus, or other material. Cysts can appear anywhere. They feel like large peas under the surface of the skin. Those that get PC cysts normally have a large number of cysts all over their body.



Cysts usually do not cause pain unless they rupture or become infected or inflamed, which happens a lot in PC Cysts. Most cysts do not disappear on their own without treatment. Some cysts may need to be drained to relieve symptoms — that involves piercing the cyst with a scalpel and draining it. That doesn’t cure the cyst, however. Some inflamed cysts can be treated with an injection of cortisone medication to cause it to shrink. Cysts that do not respond to other treatments or reoccur can be removed surgically if they cause troublesome symptoms.



K17 patient: “I don’t remember cysts as a child. I do remember the small “pimples” around my waist and under my armpits. Cysts are now my biggest PC problem. I go to a surgeon 2 or 3 times a year. Most of them, I lance myself after hours of soaking and using topical lotions to soften it up. I’m not saying to do your own surgery, but I do what I need to do.”

K17 patient: “Puberty is when most flare-ups with cysts start or get worse; they also worsen with menstrual cycles. DO NOT TRY TO POP A CYST LIKE A PIMPLE! My parents used to hold me down and try to open it with a needle, then proceed to squeeze. This doesn’t work and causes more aggravation to the area. Hot compresses or baths and time for it to head is all you can do, unless the doctor lances or injects it.”

Removal by physician

K6a patient: “Cysts are excised, either in doctor’s office or a same-day surgery center. I have surgery at least once a year to have cysts removed from my body. I’ve read some instances where the doctor will give you a steroid shot if they are inflamed or swollen, but that is only a temporary fix as the steroid shot will not make them go away, it will just reduced the inflammation.”

K17 from patient web meeting: “In adulthood, I would operate away about a hundred non-inflamed cysts, over a period of about 5 years. This worked well, but it was a long and rather cumbersome process. A more convenient way to drain the cyst would be desired…”

K6a patient: “I’ve had surgery to remove cysts.”

Removal by patient

K16 patient: “I use a blade and bring out the liquid. I then use a needle to pop up the cysts.”

K17 patient: “I use diabetes lancets for opening small cysts on the face.”

Antibiotics for Cysts 

K17 from patient web meeting: “Oral antibiotics make me sick; I use topical antibiotic powder for the best results on cysts.”

Tetracycline is a prescription oral antibiotic.

??? patient: “Antibiotics. Tetracycline takes care of most cysts. For the exceptions, they get lacerated.”


Category: Pachyonychia Congenita