Hi everyone, has anyone ever heard of Steatocystoma multiplex?

I thought i'd give this forum a go, i've had this condition since i was a teenager i'm now 33 and was only diagnosed last year. I have loads of cysts across my chest and armpits which have a habit of getting infected and turn into angry painful boils. I was just wondering if anyone here had a similar condition. My doctor said 'its as rare as rocking horse s***' and is genetic and has no cure apart from cutting the cysts out.

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  • Dear Scribbler

    Sounds like the condition a man on the Embarrassing Bodies TV show suffered from. Go onto the Ch 4 website and find Embarrassing Bodies prog and their website. I think its Channel 4 anyway. His condition was improved by strong drugs etc not cured.

    catwhisperer

  • Thanks Catwhisperer, i had a look at their website, i found a lot of info about cysts and people who have similar conditions to me. Thanks for the tip.

  • Hi.

    Im 20 & have this condition, only in the recent years have they diagnosed it as Steatocystoma multiplex. I get the small cysts removed from my face & armpits once or twice a year in surgery with a small needle.

    I was getting fed up of dead end dermo appts until recently, the condition itself doesnt bother me apart from the painful huge absceses i get very frequently; under my arms, groin, and scalp (which leads to heair loss). These are so painful & antiobiotics do not work. I am now on a 6 month course of antiobiotics which i reluctantly took, use hibiscrub and dermol.

    However this week the dermatologists have told me the abscesses have nothing to do with the condition and are in fact a extreme case of acne, they are now putting on me a long course of Roaccutane! I really dont want any more tablets!

  • Google "The Vein Hook Successfully Used for Eradication of Steatocystoma Multiplex" I think so far this is the best method. I have tried just about everything.They have a PDF on the whole procedure download it. I have hundreds of it and luckily I had a patience doctor that took the time to do this method. He did close to a hundred in a few years. He would only do a few at a time. You now doctors in US only give you about 15-20 minutes max. He is retiring now. I would like to find someone that can do this method and can do about 100 in one visit. It's very possible to do this in 3 or 4hours. And the best of all is that there is no scarring and no reoccurrence. I am a live witness. I would also like to find a doctor that can do it affordable. I might have to go to a Central America country to find a doctor but I will. I would like to start a list of people with contact information so I can keep them updated on my progress. The more people get this procedure done the cheaper it would be. There is a place in Korea that specializes on this but they charge thousands of dollars.

    Steatocystomamultiplexcure gmail

    Reply

  • Hi Scribller, Catwhisperer, and Livehealthy. I'm 25 this year and also has steatocystoma multiplex. I have seen a 6 dermatologist so far. Since I'm also a medical student currently in the 5th year, I knew quite sufficiently to understand about the disease. In fact, 3 of the dermatologist I met were my dermatology lecturer. One thing for sure, since SM is quite rare so the knowledge about this disease varied from one dermatologist to another. Every time I went to see a dermatologist, new information comes even a contradicting one too especially for the treatment.

    For the treatment, I have tried roaccutane (2mg/day) for 2 months fortunately with only one side effect, super dry skin. Actually even before i tried roaccutane, I knew from my reading that it wont last long since it will only shrink the cyst but not eliminate them. And that was what happened. My cysts did shrink and look better but I stopped after 2 months because I'm quite convinced that it will grow back to normal size once I stopped it. So I dont want to spend much money on it and I cant stand the dry skin any longer and one of my lecturer recommend me to try laser treatment. (FYI, roaccutane for acne is usually given for a period around 4-5 months)

    Last week I went to try laser with my 6th dermatologist, and surprisingly it is quite painful and it left me with a scar. Now I'm totally clueless because I was told that laser are supposedly used also to remove scar tissue. But since there are many type of laser, I bet the one that I had was quite invasive one.

    Anyway just keep this thread updated and give moral support to each other. Just pray that a cure for this SM will be discovered soon or else, I'll be a dermatologist and kick this SM asses by finding a cure my self!

    Legom.

  • Google "The Vein Hook Successfully Used for Eradication of Steatocystoma Multiplex" I think so far this is the best method. I have tried just about everything.They have a PDF on the whole procedure download it. I have hundreds of it and luckily I had a patience doctor that took the time to do this method. He did close to a hundred in a few years. He would only do a few at a time. You now doctors in US only give you about 15-20 minutes max. He is retiring now. I would like to find someone that can do this method and can do about 100 in one visit. It's very possible to do this in 3 or 4hours. And the best of all is that there is no scarring and no reoccurrence. I am a live witness. I would also like to find a doctor that can do it affordable. I might have to go to a Central America country to find a doctor but I will. I would like to start a list of people with contact information so I can keep them updated on my progress. The more people get this procedure done the cheaper it would be. There is a place in Korea that specializes on this but they charge thousands of dollars.

    Steatocystomamultiplexcure gmail

    Reply

  • I hope you do find a cure Legom! Thanks for the latest information, i'll ask my doctor about roaccutane.

  • sure no problem! ;) but remember to ask for a generic one. Roaccutane is a brand name and since it is the first one produced, it is more expensive. Try asking cheaper one like Curacne.

  • This is Kob's experience.

    (His Steatocystoma multiplex experience)

    He lives in Europe.

    steatocystoma-multiplex.web...

  • Hi Scribbler, I think the majority of people with this condition, including me, know how you feel. I'm in my 20's and I am very self-conscious when I am meeting people for the first time because when I make eye contact with them , their eyes always go down to my neck and stay there for a while. I've come to accept this in terms of how they make me look and the inflammations that comes with the condition.

    I have never tried any medical treatments so I can't recommend any. There are a few things I do which helps: 1) when inflamed, drain the contents with a syringe needle when the skin feels very thin. The skins usually thins during the most painful stage allowing easy access to drain the contents. A quick poke with drain things out. Depending on the size of the cyst, it may take several drain sessions, if you will, to empty out the entire thing. 2) If you notice any "new" ones that grow, they are usually in liquid form (just oil not solid) so it's very easy to drain them using syringe needles. It also leaves minimal scarring when removed during this stage. I can share more tips about draining if anyone is interested. It may sound daunting but it's actually easy and straightforward once you have the right equipment and technique. 3) Kind of an obvious one but don't touch or put pressure on them, bacteria and germs from fingers can cause inflammation!

    Personally, I hate it when the ones under an arm or in the private regions get inflamed. Those are the ones that hurts the most....

    I also notice that stress and some foods can lead to inflammation. I used to love mushrooms but I found out it actually causes inflammation. My brother has this condition too and for him he stays away from seafood. Be vigilant in what you consume and try to see if there are patterns.

    Gaining weight helps to disguise the condition. I am fairly thin and I noticed that when I gain some weight, the cysts on my neck and chest are less visible. I also tell friends and colleagues about this condition so they know what it is. I don't mind sharing it because it don't think it's anything to be ashamed of. It also helps them understand the pain involved with inflamed cysts in case I need to take sick time from work etc. 

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