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.
For some, particularly those with mutations in KRT17, painful cysts are the hardest symptom to deal with, due to pain and emotional effects. “The cyst is extremely painful as well. It makes the depression come in very heavily because I feel like I’m not worthy enough to be a wife or a mother. It’s hard to have intimacy when you’re ashamed of the way you look. You feel sick because you hurt so bad.” Another PC-K17 patient said “It’s been in my family for about a billion years, since the dawn of time, so we’ve been dealing with this for a long time. One of our symptoms—our bigger issues are the cysts. So, I just want to explain a little bit about those. They’re everywhere. I have them in the skin on my toes and my scalp. What happens is they can just be dormant, or they become inflamed and erupt into boils, and can cause extensive scarring. It can be completely debilitating. It depends on the location. I’ve missed a lot of work, usually without explanation. It limits mobility. It just depends on the location, but it is extremely painful and it’s rarely just one. It’s usually a couple at a time.”
CARING FOR CYSTS
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.
PATIENT TIPS & COMMENTS FOR CYSTS
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.” http://health.yahoo.net/galecontent/antibiotics-topical-1/3
Tetracycline is a prescription oral antibiotic.
??? patient: “Antibiotics. Tetracycline takes care of most cysts. For the exceptions, they get lacerated.”
Cyst Comments from Social Media
K16 patient “I went through a rough patch beginning about a year and a half ago of getting loads of abscesses and cysts, and taking tonnes of antibiotics for months, being unable to go out or do much, it was so isolating. I was recommended by a dermatologist to take a bath with Milton about twice a week. It’s a brand of baby sterilising fluid that’s used for sterilising bottles and things, though I’m sure any brand works fine. With adding about 3 capfuls to a bath and sitting in it for 10-15 minutes, it apparently kills a specific type of bacteria that’s very common in pc to cause cysts. It smells like a swimming pool, but it seemed to help! As well as that, I always keep a tube of fucidin antibiotic cream, it’s 20mg/g of fusidic acid. As soon as I see a cyst or blocked pore start to appear, I apply the cream to it 2/3 times a day, and if you catch it early enough, it seems to go away entirely. I haven’t had to go to the doctor with one for nearly a year now, whereas I had been going nearly every few weeks up to that.”
Unknown “Hi everyone, I hope you are all well. I am new to the group. I do not suffer half as much as I have noticed some of you guys do. I suffer more with the cysts and if in hot weather (living in Glagow in Scotland isn’t that often 🙄😂) my feet tend to get bad with blisters. The cysts really affect me more than anything, I have been on roaccutaine in the past to help with bad acne and I found I didn’t get an abscess for a long time after however recently I have been suffering a lot. I do not attend dermatology atm however awaiting a referral but with lockdown, I’d assume I’ll wait some time to see a dermatologist. What other medication have you guys taken to help deal with cysts becoming inflamed?”
K17 patient “I am just like you, suffering more with the cysts than the feet (even if it’s really hard to walk when it’s hot or when I’m tired). I have been going to the dermatologist to remove some cysts I have, so they get less inflammed. It was really hard to find a dermatologist that was willing to do this as I have too many and they say that they will come back anyway as the skin produces them..but after several years I was lucky to find one willing to do it 🙂 I took roaccutane like you (3 times) for the acne on my face but couldn’t see any improvement with the cysts and all the acne came back after a while. I usually put green clay or an antiobiotic cream (called “fucidine”) on the cyst when it gets inflammed and try not to cover the area too much as the skin needs to breathe. I try to eat very healty (bio food) and not to drink too much alcohol (I have the feeling that it gets more inflammed after a big party 😅) and most of all to sleep enough. Everytime I am stressed or anxious or tired, it gets inflammed, so mostly that is what I pay attention to. Right now I am pregnant (in my 8 month) and I have not felt so good in my entire life. I only had 1 big inflammed cyst in october, and I think it was because of the stress not knowing if the baby was going to have PC or not (after I got the results of the biopsy, everything was fine!). I take antibiotics (in France it is called “pyostacine”) when it gets too painful. It works very well but I have the feeling that I got addicted to it.. Each time it gets inflammed I want to take them so the cyst can dissapear quickly. Sometimes it hurts so much that I can’t even get dressed or walk 😬 I don’t know for you but I also pay attention to the kind of clothes I wear. I try to buy “material” that does not make me sweat a lot (that is what get them inflammed) and I never ride a bicycle as it touches too much my skin and I can be sure that after 5mns of biking I will start to feel pain. That is mostly what I do.. more preventing as healing 😅 as there is no magic medication that really helps completely. If you have any additionnal question, feel free to ask 😉 😘”
K17 patient “Is anyone with cysts in their groin and under their arms have any fears about dating? I’m embarrassed by my skin and newly single, I’m so scared to be rejected or questioned whether I have an STD or something. I don’t even know how to bring it up before first getting intimate. And I don’t want to be in the moment when it comes up. I don’t like wearing underwear because it hurts too badly. I feel so weird and awkward about it. But I haven’t been single in a decade… how do I manage the anxiety? What do you say?’
Unknown “I have the same issues. I think it’s best to be up front about it. It’s not a first date topic but it’s something to discuss and get out of the way early on. And if the person can’t get pass it then they aren’t worth your time.”
Unknown “I find being friends with someone first , they end up knowing you have the condition. I’ll be honest no one has ever asked me about it in regards to that area. I have steatocystoma multiplex so you can see bumps on my arm if you look and my legs . I’ve had people ask me about that and I said it goes hand in hand my other condition.. and they say oh okay cool. And that’s it. Trust me I’ve worried about the same concerns as you all my teenage and young adult life, not one man has ever pointed out that area . Now I’ve had long term boyfriends who help me when I have a painful cyst. Like getting a heat bag to lay on it, bringing me tea and food so I can lay down and relax, running an Epsom salt bath for me etc. They see it and say omg you must be in so much pain, it’s empathy for me rather then disgust. It’s not my fault right 🤷♀️ Best of luck to you in the new dating world. Make sure to get to know someone first, make sure they are a good person and not trash lol”
K17 patient “It’s a hard conversation for sure, and I have felt all of those feelings of anxiety many times. I have just kept it clinical and have usually been met with surprising understanding. From my own family and meeting others PCers at meetings, I swear we seem to end up with the best, kindest partners! They are out there. 😊”
K6a patient “When I was young I lied and did everything possible to hide my condition. In 4th grade one of my classmates got a wart. It was quickly the talk that I was contagious. The wart came from me. This set the tone for many years. I lived by hiding my condition from others, but also myself. I call it denial, my counselor calls it refusal. My marriage ended because I chose someone who also denied my condition. I am now with someone who truly tries to understand. The kind and compassionate person is out there. Be honest about your condition and look for signs that they truly care.”
K6a patient “So, first of all, you are deserving of love, acceptance, and a healthy intimate relationship. I absolutely understand the feelings you have. As I’ve gotten older and wiser (and more experienced 😉) I’ve discovered that most people don’t really care.”
K17 patient “Anyone get painful boils or cysts? I was wondering if this is a symptom of PC. Myself, my mother & sister get them and we are only ones in family affected by PC. I’m currently dealing with a boil on my face 🤦🏻♀️ Any tips to treat are appreciated”
K6a patient “My family has had issues with them off and on. We put Drawing salve not sure how easy it is to find anymore but it is thick black salve you put it on and cover and it really helps pull it out so that you can open it. But you have to be careful when you Lance it because could make it worse. Especially one on your face . I would definitely want a Dr to check that one out.”
K17 patient “Yes. But I also have Steatocystoma Multiplex and I know some other PC’ers do too. It’s at least worth looking up. But from what I understand cysts in general are part of PC depending on your mutation.”
Unknown “Yep we get them too. Growing up we always used boilease just because it was pretty easy to find”
K6a patient “Different mutations have shown to be more likely to show cysts. If I recall correctly, the K17 of us generally deal with more of them. I personally am K6a and have not had cysts”
K16 patient “I am K16 and have issues with cysts. My doctor diagnosed it as hidradenitis supportuva.”
K6a patient “Yeah I sure do. All the time. Face, armpits and groin”
K6a patient “As a child growing up I had boils all the time .arms stomach , face ,under arms etc “
K17 patient “Yes, I have K17 as well and at time, the cysts are the worst part. 😕 I wish I could tell you something that worked, but I usually just use heat and then try to lance. I have scarring from handling those myself, so I have actually had a doctor handle them when close to my eye. I’ve also had them removed by a physician from my genital area because they were so uncomfortable. Totally mortifying to discuss, but worth the relief.”
K6a patient “I never use to but lately yes 😓 antibiotics have helped I even have had them lances/ drained heat applied helps it depends honestly how it is and where it is, not one thing or another seems to help me but I try a variety depending, I’m sorry your dealing with one on your face those are the worst virtual hugs 🤗 “
K17 patient “I do all the time. I have K17 mutation ams this is common for us. I will lance myself sometimes using a size 11 scalpel. Depending on the size, severity of infection and location I will have it removed in a doctors office or even in the emergency room. Feel free to PM me.”
K17 patient “Yes, I have all my adult life. Not as a child started with puberty. I’m sorry. I know how painful.”
K17 patient “I know this is tough to see but do you think this is PC related? When it does resolve it seems to come back in the same spot. (She gets them under her arms as well) It is hard, painful and warm. All that will come out is all that is coming out in the picture. She’s using hot compresses. Any other suggestions? She currently doesn’t have a PCP and I’m trying to avoid the ER if possible.”
Unknown “Yeah it’s a cyst or a boil , I get them quiet often. This one though looks like it can drain on its own, Epsom salt bath and ( I personally put pressure on either side to help drain it, I also have a decent pain tolerance and I understand some cannot do this) polysporn and a gauze pad over top after draining .”
K16 patient “I use an Epsom salt pack , just make a paste by moisten some of the salts with hot water, then cover the sore. It will dry out and wipe away but the sore or wound will be drained of what’s in there. It may take several times but it heal me with blood poisoning once, I know it worked for me.”
K6a patient “Yes I had one 2 once from my darn shirt that was rubbing right around that spot an I think I had been also wearing a necklace I can’t remember I was like 12 – 13 , I use to get them under my arm pit, an sometimes where the inside of upper thigh would rub against my other leg as you walk or if the pants rubbed when I had bad acne it was worse an also shaving I realized I have to be careful ingrown hairs an irritation seems to make them appear for me worse, they hurt I know I have not had any in a long time thank goodness I use different methods an so far so good. Hot washcloths , an if you can see the dermatologist they maybe able to numb it an try to drain it if you can’t bare the pain of trying yourself I’ve had some happen that had a lot of clear fluid an once I was able to have it drained I’d put ointment on an it would heal finally if it’s the same but if it’s a cyst I guess it will depend on a few factors so it varies every darn thing we get is always unique sometimes fluid sometimes worse by trying to drain it .. I hope you heal quick I’m so sorry you have to deal with this 💔 I know it can hurt 😢 I’m going to call my aunt an ask her what the heck did we use because we never had insurance when i was young so a lot of things we did at home we all had pc”
K17 patient “Yes, this is what happens with my daughter with K17. Painful – and “trauma induced spots” friction, they pop up. If small she uses those draw out acne overnight spots. That seems to help a hot long shower/baths.”
K17 patient “I use to get these constantly as a child and teenager Under my arms, legs and stomach , but never as an adult . Best thing ever is “magnesium sulphate paste “ it stopped me ever visiting a doctor . You put a thick amount on and cover . By morning it would have drawn all the puss to the surface and popped or ready to push slightly and it will all come out . Honestly best paste ever. It’s a “drawing” cream specifically for boils.”
K6b patient “I’m familiar with those too.”
Unknown “This is an abscess. I get them ALL THE TIME 😭. Mostly down below however have had them in other places like arm pits, groin area, inner thigh. Usually caused by friction/sweat. I go in baths, as hot as i can handle to try draw it out and i get antibiotics called flucoxacillin from doctor. Sometimes they need drained from doctor. Paracetmol will also ease the pain in order to try burst however careful, i have been known to go very sicky and close to fainting when squeezing due to the pain. I hope she gets some relief soon xx”
K17 patient “My son (K17) started getting these more often since he turned 13.”
Does anyone suffer from more than one abscess/cyst on different parts of the body at the same time?
K17 patient “Yep. In the summer I’m in a lot of pain”
K17 patient “I currently have at least 10 cyst.”
K17 patient “Yup. I have 4 right now alone.”
Unknown “Sometimes . I am currently scheduled for surgery to remove a now abscess (two years it’s been around and went to 5 different doctors to finally get help) from my groin area right where my underwear sits 😭 so painful but I am glad it almost gone”
Unknown “I had to have quite a few removed from my legs, one being my upper left thigh right under my underwear area… had to have a wound vac to heal it and that was definitely the worst thing I think I’ve ever been through with this disorder 😣”K16 patient “Yes, I have them also along where my underwear sits along my legs. I have several that have never completely healed that flare up regularly and about 3 or 4 new cysts right now. My dermatologist indicated that the surgery needed would be extensive, hard to heal, and would most likely result in more scar tissue. The best treatment I have had is steroid injections in the area but have not been able to get in for them during covid restrictions.”
