Steatocystoma Multiplex - Cause, Treatment and Diet for Prevention

Hi Priscilla, After watching my doctor removed a bunch of the cysts from my skin, I figured out how to just do it on my own. If you don't get the cyst wall out they just refill. But fortunately, I know that milk and ice cream are the triggers for the cysts popping up on my skin so I just avoid those foods. The cysts that I have left are the ones on my butt that I can't reach ;) I'm going to direct my estetichian on how to remove them with the lancet and comedone extractor. It helps to put retin A on the cysts to dry them out first...then they get closer to the surface and they're easier to pop out with the lancet. I also do low level TCA peels on myself after the subsequent scab falls off. It helps to prevent dark spots from lingering too long. I hope this helps you guys. I wish I could set up a shop and remove them for everyone since I know how to do it now, but I don't have a medical license :) Charisma

Ryt now nasa pasig po ako nag tatrabaho. Hm po for d treatment?

Where u from? I hav ds condition since i was 18 and now im 24. From philippinea

Hi. I am 29 years old, female from the Philippines. I have only recently found out what my conditions is called and that I have Steatocystoma.

I noticed little lumps on my neck upon pressing my neck's skin when I was 14 but dismissed it as something that will probably go away. Fast forward to 4 years later, I was 18 and suddenly the lumps on my neck surfaced. There were about 30 of varying sizes, very small to really big ones. I often got conscious as I am fair-skinned and have flawless skin everywhere else there are no lumps ( I also have on my back, armpits, stomach, chest and groin area). Also, the lumps show under direct sunlight and especially when I am under a lot of stress. I went to several dermatologists who either diagnosed me incorrectly or said there was nothing I can do about my cysts. Naturally, I felt alone...noone else in my family has this and having SM really blew my self-esteem. I would often wear turtlenecks because I felt so self-conscious about my condition and often did not want to have to explain to every single person who asked what happened to my neck.

I am speaking in past tense because about a month ago, I found a wonderful dermatologist who specialises in skin diseases here in Manila. He not only gave me hope but assured me that my cysts on my neck (most visible and my biggest concern) can be easily removed by him. I had a procedure done by him just last week, he used laser to drain the lumps. It took about an hour or two. The procedure was uncomfortable but bearable nonetheless. I am currently recovering from the treatment. My doc told me it will take a while to heal, probably a month since some of the lesions were very deep - like on the 4th layer of the skin. Though, those lumps that were smaller and were at the skin's surface are healing quite nicely. He assures me that there will not be any scarring and I trust him. I will update you what happens, for the meantime, I pray that all of you will not lose hope. I have prayed fervently that God will perform miracles and stumbled upon one, not by accident, I believe, who will do it on His behalf.

I will have the treatments done on my other body parts within the next 6 months. He tells me that there might be recurrence of the lumps but he will give me medicine to control the oil production of our VERY ACTIVE oil glands.

The best part of all this is the cost of the treatment which I thought would also drain me financially. USD$100/area no matter how many lumps.

I will be leaving my email address, for those of you who wants to get more information about this doctor. I will be happy to assist.

(I'm opting not to reveal who this doctor is because I haven't told him my plan on replying on this thread and telling the whole world about what he has done for me. I will have to ask his permission first for privacy concerns)

Hello guys,
I have SM since I was 15 yrs old. I'm now 22. At first I thought the little white bumps were white heads. I had lots of acne on my face back then. I was diagnosed with SM when I was 19 when I finally decided to go to a dermatologist because there were red bumps suddenly emerging rapidly. It was a quadruple whammy, turns out the small red bumps were measles, the white bumps were steatocystoma, the red bumps were acne vulgaris, and there were lot of scars in my body left by years of eruption. It was in my chest, back, arms and forearms, back of my scalp, face and neck . She even thought there were keloid scars. She did not mention the icepick scars and strecth marks I have.

So now you know my story, let's fast forward to the present. My face has cleared of acne one to two pimple here and there a month. I have my SM less visible and eruptions less frequent. Scars and dark spots are improving. I am using Freeman's Clay Mask ($4 for 6oz bottle that lasts for 3 months) once a week all over my body. It really helps control SM and its eruptions. For the scars I use a more expensive product, BioOil ($11 for 4.2oz bottle that last for only a month and a half) applying it twice a day all over my body. I know I can't have a dream body, but those imperfection are hardly noticeable now from 4ft away. If you look closer, well it is much better looking than a plucked chicken skin. You can hardly notice the bumps, they're more like white spots now.

I would say the description of my body is like an intricate pattern of white spots. It actually looks good. The differing color of the skin had sprouted an unexpected riveting effect. It is comparable to those with henna tattoos, with those white pattern. Someday I would like to get a tattoo in white ink to enhance the beautiful outcome of this unique deviation, which in my perspective is not a disease.

Hope y story helps you fellow SMers

Did you end up getting the tattoos? I want to do the same. I get really bummed out seeing my SM too.

Hi I am also a Canadian-born Asian suffering from SM and I was just wondering if you've found any solutions or anything that has helped you? If you are willing too I'm hoping we could get in touch and see if we can help each other!

Hi I would very much like to connect with you and ask questions about your treatment however, I do not see your e-mail. Please let me know if you are willing to connect with me!

Hi I also suffer from SM and was hoping I could get in contact with you or anyone really who understand and maybe have some solutions so we can learn more and hear about each other's experiences. I'm 21 living in Canada and I'm super self-conscious about my body. It would be nice to be able to connect with people who understand and could support each other! Please let me know if anyone would like to stay connected. I have also recently found a private Facebook group with other members suffering from SM.

Hello all! I posted on this topic years ago. It sucks that there is no definite cure yet, but I wanted to reiterate what has worked for my skin and dealing with the condition. I have had both steatocystoma and vellus hair cysts since I was twelve. I am now almost 35. I have a diverse ethnic background...I am about 6 different races. I believe that this condition is closely related to the Asian part of my background. I've noticed over the 10 years that I've read about and researched this condition that the majority of people that this condition affects seem to have some Asian descent. I also noticed that any new breakouts I would have in the past (I don't get them anymore) would happen within 12 to 24 hours of consuming milk, ice cream, or chocolate. My conclusion was that my body could not break down whatever the ingredients were within those foods and it would try to push them out through my skin. My solution to making my skin normal looking has been costly and has taken a while, but it's possible to eventually get normal looking skin. I highly recommend getting laser hair removal on your entire body. I started the process back in 2007. I would get the cysts on my forearms, buttocks, stomach, and thighs. If you get rid of the hair you are reducing the risk of the hair follicles getting clogged with debris and not being able to push out whatever your body can't process. For the steatocystoma cysts I would normally just drain them on my own with a lancet, but you have to create a sterile environment so you don't infect the cyst and make it worse. So cleaning the area with alcohol and using a sterile lancet is the best technique. For the vellus hair cysts, if you have them, they are trickier. A lot of doctors, if you actually find one that wants to help and not blow you off, will try and use a punch excision tool on the cysts. I don't recommend this because this leads to a lot of stitches and possibly thick dark scars. BUT there is something called microneedling now that will erase those scars. I had a doctor do punch excisions on some of my cysts years ago and they left raised hyperpigmented scars. But last year I tried microneedling on them and it smoothed them out and lightened them up. I just need to do a chemical peel to get everything to the same color which is a breeze. Sorry this is so wordy, but this condition sucks and I want to give everyone as much info as possible for treating the symptoms of this condition. So instead of doing punch excisions I recommend finding a dermatologist or esthetician that is willing to remove the vellus hair cysts with a 20 gauge or smaller lancet for you. Once you've seen it done a few dozen times you'll be able to remove them on your own at home. But before removing the vellus hair cysts I recommend that you kind of dry them out a bit first to make them easier for the doctor or you to remove. To do this, you'll need to apply retin-A to skin for a couple weeks. You'll notice as they dry out that the cysts will shrink a little bit and get closer to the surface. Then it's all about getting the lancet under cyst sac and popping those suckers out. Once you've gotten the cysts out, both the steatocystoma and vellus hair ones, I recommend getting peels your affected areas to even out your skin tone. And don't be embarrassed about going to an esthetichian and getting peels in weird places....they've seen everything and it's their business to make you look and feel better. I hope this helps.

Hi - I'm not sure if this is of any help to anybody, as it all seems your experiences are so varied. I'm 36 now, but started getting cysts when I was about 19. At first it was just one, then a few more, then everywhere. I had an operation where a few of the biggest ones were removed (cut out, as I understand it), then a further operation where lots and lots of them were lasered. This was in the UK (Oxford, England). Anyway, I assumed I'd just have to be managing them forever with further treatments/surgeries etc as there was no sign of the cysts stopping appearing. But then all in one go when I was about 25 I stopped drinking caffeine, stopped smoking cigarettes (I was smoking a lot until this point) and stopped eating dairy. From this moment on all the cysts seemed to soften and eventually stop appearing at all. The ones that were still present I excised myself as they had become soft and flatter. In the following 10 years I've had nothing more severe than the odd soft cyst here and there (we're talking perhaps noticing a tiny one every 6 months etc), and in fact for the last 5 years I've returned to drinking small amounts of caffeine and eating lots of dairy. Anyway, I'm not sure what happened and this account might not help anybody but thought I'd throw my experience into the mix and by all means anybody give me a shout if there's anything I've said you think might be helpful and want to talk more about. Thanks and good luck everybody

hi
Iam a 45 years old(F) I live in canada ive had SM my whole life. i noticed once i hit my 30's the condition worsened. My arm pits and my back are the worst. thankfully i dont have big ones on my face i have had them on my scalp which left lovely bald spots I now have to wear wigs I am very subconscious as well Iam a dancer and its hard to find suitable shirts to cover both armpits and back plus be cool enough. The part that is the worst tho is that my youngest daughter has it as well. My eldest daughter missed out on this one . My youngest is 15 and she is also a dancer. Her SM got worse once she hit puberty. Iam taking her to see a specialist this weekend coming iam not sure if he can do anything for it. Hopefully there will be a positive outcome

Please reach me, I have some questions.

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Hi! I'm from the Philippines too. I'm really interested

Hello my name's Amir and I was just diagnosed with steatocystoma multiplex 2 weeks ago.

I have had it for about 5 years unknowingly, thinking it was a rash or something else but it turns out as many of you know already to be a benign genetic disorder.

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I'm making this post to try to learn, share knowledge, ask questions to others regarding this condition and managing it. Upon learning that I have it, I've decided to actively start treatment through laser surgery soon.

What I've noticed a lot across the internet and even with some of the doctors I've met with (currently a total of 2) is that very little involving *scientific-method* has been documented or recorded in treating the condition. I thought this was very strange and needs to be resolved. To start however, I've learned that smooth lasers, and fraxel lasers can destroy the cysts with a high rate of preventing recurrence...however I'm not sure if "recurrence" pertains to just the individual cysts or that generalized region of the body.

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I'll begin with these:

1.) About my biologic & career background

2.) *Past and Current observations with my S.M. (steatocystoma multiplex)

3.) *Patterns noticed in spread

4.) *(Most importantly) Treatment being sought out

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1.)

My Biology:

I'm currently 23 years old, born and raised in America, mostly African American genetically but mixed with other European genes. Because of this my skin complexion is a light to mid-tone brown in color.

No one else in my family has this condition so it was a sporadic mutation for me.

I look like a normal healthy person, you can not tell I have it unless you see my arms or look very closely at the center of my chest.

My Career:

I've received my education at an engineering school and studied within the arts and sciences since I was a little boy. I am a designer working with a well-known company but just getting into my career.

2.)

My experience with S.M. started when I was around the age of 18 and were only a few small cysts around my left wrist (not irritating me, I thought they were a possible rash, not very noticeable unless felt or examined within a 3ft radius). Over about 2 years (age 20) it spread slowly to both my fore arms, this was predominantly on the under-side of them. I'm 23 turning 24 this year (so 3.5 years later) its spread from under my forearms to both my lower deltoids, central sternum, a few on my inner thigh and abdomen. It is to be noted that the quantity is much smaller in the newer areas, close to 10-15 small ones approximately. I'll provide thorough details in a following post. It is also to be noted that this is without any treatment.

3.)

The patterns I've personally noticed in my own case is that mine had seemed to originate from my arms...but from what I've read elsewhere for other cases, it's normally been observed around the chest, back, or groin first... Thankfully it looks like laser-surgery is a viable option for removing those cysts in those areas, however at varying costs.

4.) I've been referred to seek laser surgery treatment at a location in my city. I saw images of one patient who was treated with this option who had it pretty concentrated all over her abdomen (lower chest to lower abs, a few hundred or so). While it was noticeable before the treatment, after her skin (which was white) seemed significantly better...as in normal looking to about 75% if not more. I'd imagine this is not a permanent solution, but I'm seeking more data on her status post the procedure. I'm currently deciding on which area of my body to treat first with this option. I'll be recording and collecting more data to try to learn more about combating this condition in the means of maintaining "normal" looking skin, even if it's just a little patchy in color some areas or if bump appearance can be better controlled.

I think examining the rate of occurrence, quantity, and locations of occurrence under the skin via some type of x-ray or body scan is important for thoroughly monitoring the condition...predicting trends, patterns, etc. How to do so is a different question, one that I'm seeking an answer to without hurting monetary spending too much.

All ideas, stories, and thoughts are welcome. I will be posting again soon.