Steatocystoma Multiplex - Cause, Treatment and Diet for Prevention

Hi everyone,

I am so glad that i found this thread. I am a 23 year old girl living in Singapore and I started developing SM since 14 and i am the only one in my entire line of family having this skin problem.

I have tiny GREEN coloured cysts on the back of my thighs ONLY. Yes, they only grow on the back of my thighs. I use to try to squeeze them out myself and there are scars left behind. I am very self concious about it so i dare not to wear shorts and mini skirts. I really do admire girls who can wear shorts and i really hope i can wear shorts one day. ):

I visited the National Skin Center before and one of the doctors did excision to remove some of the cysts on my right thigh. However, i was left with scars and small ugly dark/brown pigmentations afterwards. I was devasted because i have tried all sorts of creams to lighten the dark/brown spots but none of them helped.

On one of my visits to Bangkok last year, I did laser at one of the clinics in hope to lighten the pigmentation and to my surprise, the dark/brown spots did lighten up alot. i have since done the laser two more times in Bangkok. However, it is pretty iinconvenient for me to fly to Bangkok everytime just to do the laser.

So I am hoping if any kind souls out there can suggest a good dermatologist in Singapore for me. I have read through every post in this thread and i am willing to give CO2 laser a try, i hope that it can help to remove the cysts and the dark pigmentation caused by scaring. 

Thank you for taking the time to read this(:

was there any re-occurence?

Hi my daughter also have SM, may I know what clinic are you talking with in South Korea. I hope the moderator dont mind if I get the name and address, phone number of this clinic.

who is your surgeon? I've seen a few dermatologists and they've all refused to operate on me

I've had since age 19, I'm now 33 and took Accutane which cleared cystic acne from my face, and controlled the others from rupturing as often, but now since off Accutane, I get cysts rupturing, have to have them cut removed and stitched. On forearms, inner thighs bad scarring, neck has lots, etc on other areas. It's a pain literally and visually and I wish they could find something less invasive than surgery to cut them all. I also sorry as I'm looking towards marriage, family soon, of passing on to my children.

Reading your story is inspiring. I have over 200 of those on my body and every doctor I've seen in the NYC area pretty much told me, too bad, tll sad, live with it. Can you please give me the name of your doctor who is willing to remove them? Thank you so much!

I am 22 years old chinese-asian male and have recently started a freezing treatment recommended by my dermatologist (yes like how warts are removed). I mainly have it on my chest and 3 noticeable ones on my neck. To my surprise the cysts has gone down in size and flattened out. 4 of them almost feel completely flat and 2 of them are completely gone. I have seen him 5 times now (I see him every other week) and each session of freezing takes about 2 minutes. The pain is quite minimal during freezing. Every time I see him the cysts are noticeably smaller bit by bit. My skin does scar quite easily being asian leaving dark spots of the frozen area so I was prescribed Tri-luma whichs helps with the scars a lot. I see a noticeable difference after 2 weeks. I am posting this here because I have read through the majority of this long thread and most saying there are no cures. This freezing treatment is NOT a cure but for me it has reduced the size of the cysts by a significant amount. I hope this posts helps others who suffer from SM. Hopefully after I have finished my freezing treatment I can finally go out topless to the beach :P

I haven't heard of the method of freezing. How long have you been doing it? Do they come back?

Hi, i'm a 20 years old medical student with Steatocystoma multiplex, my parents dont have it, so maybe i inherit it from my ancestors. I'm considering to do some research on this, if you guys have any suggestion i'd love to hear it. Thanks 

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Hello, can you tell me who your general surgeon is? Where do you live? I would appreciate it.

i have a Pearly Penile Papules How much ?

I am also in NYC. I've only seen a few doctors YEARS ago, who couldn't even diagnose me, so I gave up.

I've been following the SM threads on this board for years and it's so sad that there hasn't been any improvement in communities for rare genetic skin disorders. I'd saying I've been suffering from SM for close to 10 years now. I am in my mid 20's. I just took one of those at home genetic testing kits to see if indeed, I do suffer from SM and it's genetic abnormalities.

I have so many different kinds of scars from self removal over the years, I'm embarrassed by my past choices. However, right now I think i've honed down on a removal method that is pretty simple with a surgical blade. I'm very good with my hands so please if you are desperate and reading this don't just slash yourself with an xacto blade. I just want to share. I make a very small incision, (barely 1 mm even for the larger cysts) then proceed to dig and remove the cyst sac. I then let it clot up and scar, but since the incision was so small to be with, it's like the tiniest paper cut. There isn't much pain involved except with the sac removal sometimes. It's probably similar to what they call "vein hook removal" but I just use a regular sewing needle. So far, it hasn't left me with any infections post removal, some inflammation for a few days and probably won't leave visible scars. It's more complicated and time consuming than needle pricking but the results and possibility of non-recurrence is much better. Needle pricking is a easy removal technique, but I don't find it effective as over time, some may fill up again (with a clear pus instead of the usual yellow thick pus), sometimes randomly get infected and also there's a 50/50 chance that it can get infected post needle prick. (These really hurt.)
I don't trust dermatologists anymore and their handiwork or surgical techniques. I've seen quite many of those removal videos on youtube uploaded by dermatologists and the incisions are made way too large. I feel that these doctors don't take into thought that scarring is just as traumatizing as the actual cyst. I had an large recurring infected cyst with scar tissue removed on my chest a few years back. Now that I look at the scar, it really makes me question every individual dermatologist's proficiency at surgical technique. The doctor wasn't bad, but her patience and delicate manner with stitches could be questioned. It's a shame that there aren't portfolios of surgical work like how tattoo artists have portfolios. Be careful out there! I wouldn't choose any doctor that simply says he or she can remove them. Ask them what their methods are, what will the scarring be like. I wish I had the patience and health to go through medical school to help us all.

Hi, how can I find your aesthetician?

Hello Priscilla
I have been following this topic for some time now, but I have never posted anything here until now. I`ve had SM for over 15 years now (I am 32). My father has it and his mother also had it. I`ve been to so many different dermatologists, but the same as everyone here: they were not able/willing to help me in a efficient manner. Right now I am not doing much about it anymore, just hoping and waiting for some new treatment.
I also live in Brazil, so maybe we can try to get in touch with each other so we can talk more about it.
I would like to thank everyone here who`s been posting their experience with SM, it`s really helpful and comforting to know I am not alone. THANK YOU SO MUCH, realy (;
My best regards to everyone!

Things that I`ve noticed so far: - Sunbath seems to help it: they don`t inflame so often (I know, it`s difficult to go to beach, wear sunbathing clothes, etc., but I always try to find a place a bit quieter and reserved! Also, I think the skin with SM gets a better appearance). Not sure if it helps their size or their quantity, though. - Omega 3 oil also seems to help them not to get inflamed, at least when you first start to take them. I took about 3 grams a day for over a year, now I eventually take 1 gram per day, I stop at times for a few months, then I continue again. It also helps the acne problem. - Foods like fat sausages, salames, etc. (especially from pork meat) and fresh fat cream, they don`t help at all. Besides helping the inflammation problem, I am pretty sure they also help them to increase in size and quantity. I try to avoid them, but I haven`t stopped eating them....I love these kind of food and there are so many things already that I have to stop myself of doing because of this genetic problem, so sometimes I just go like "whatever, you know!" - Practicing sports and sweating: my father has noticed it too, it does help a bit. Even if it doesn`t help you much regarding this problem, it`s good for our bodies/health and we need try to continue our lives in the best possible way! If I remember anything else, I will post here some other time (: