Male with HS for past 8 years

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I've had HS for the past 8 years however, it was just recently diagnosed going into surgery for what the doctor and numerous dermatologist have called sebaceous cysts. Well its been two weeks after the surgery in which the doctor gaurentees me I would not have them return, and I have one right on top of the incision (1 of 4) incisions. I've been given countless antibiotics doxycyline, bactrim, and another that slips my mind they never work or work for a week or two and return with a vengeance. My question is have any of you had any success with any treatment or self treat options? And when I feel one starting to develop it takes less than 24 hours for it to go from the size of a pea to the size of a pecan! Has this happened to anyone else? Lastly the location of the lumps are always only on the back of my neck in 5 locations one on each side about 3" down from my ear and 2 square in the middle that are the worse of the five and one on the hairline on the back of neck. Please help as any suggestions or stories are welcomed.

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  • Posted

    I have similar issue. Mine has been going on for only 4 months or so though and I am undiagnosed. My doctor refuses to refer me to see dermatologist. I started as you say with a tiny pea size lump in my left armpit. This grew large within 24 hours and was extremEly painful..it seemed to clear up with antibiotics but 2 weeks later was.back..I have an incise and and drain. After 2 weeks another one appeared...and cleared and a few more.similar. Then another that needed the surgery

     That was 3 weeks ago. I'm about to going local hospital this morning to have 4 incision and drainage. I also have a new one this morninh on the first scar. The antibiotics do not work and I find the painkillers rarely take the edge off. I.can't believe you have had this for 8 years. You poor man sad as I say mine has been around for months and I.really feel like it's affecting my life massivery. My absesses always on same sithe except one that cleared on its own in.right armpit. When I.say cleared I.mean it went hard.and was.not painful. It's still fair size and is still visible. I'm feeling down and worried all of the time. The ones I have now are agonisingly painful and I can't tell you how many panic attacks ive had worrying about them pushing the needles on.for anesthetic. I'm not sure this helped you the rant I.think might help me lol. 

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  • Posted

    Hi guys. I'm newly diagnosed. On anti b. However, I have started taking turmeric and although I get a new one a week they are not growing and sometimes not even that sore! 
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    • Posted

      I have just been looking this up. I will definitely been purchasing some of this. Can you tell me, do you take it in capsules? If so could you recommend a brand?
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    • Posted

      Hi, you have to make sure you buy it concentrated because a lot of them are rip offs and they are jsut the spice stuffed into a capsule. You should go to a vitamin store.
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    • Posted

      Did this. Thanks. Doctor has given me a one a day sort of anti b called doxycycline. Has done the trick for now. First thing that has made a difference. Once affected areas are hard lumps have they dried up?
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    • Posted

      I am also taking Doxitab, whihc is almost the same thing as doxycyline (they are from the tetra-antibioticfamil) and myface looks like it is startin to clear up a bit,but, since I started it about 2 weks ago my HS has blown up quite a bit. I have read andbeen told a few times though that it might make the existing ons come out before it gets better.
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  • Posted

    I am not a doctor but I know that they should not have told you that they will not come back. There is always a chance for it to come back and no doctor has ever told me otherwise. My dermatologist who I have right now is the most recommended here in Montreal and she has told me that no respectable surgeon will operate on my arm (whihc has 4 active systs right now) because it is not bad enough yet. Whether I agree with her or not is another story and it all does matter on the particular patient but it sounds to me like your doctor might not be the best person for you to see. You should ALWAYS get a second opinion or even a third before you do any kind of surgery.

    My background; I am 29, female, and have had HS since I was 14. First it was on my inner thighs, then it spread to my groin, arm pits, under my breasts and now I have one on my neck. I have had one surgery where I had several in one area removed under my armpit and the surgeon told me that this is only temporary and more are going to pop up. Sure enough, my scar is now inflammed and I have more all around and one in particular that has been open like an ulcer for months now, it jsut will not heal and constantly leaking. 

    You can remove a cyst, but more will come, and this is what a lot of people don't understand. Surgery is not a cure for the disease, it is only to help when you have one that is so bad you can not even function. MAybe I am depressing to some people, but I have just learned to live with HS. I still try new things and I have real hope that it will be gone one day and I am only now really taking action and trying a course of many things to get rid of this. I am in stage 3 of the disease and I can't lie, I am petrified, PETRIFIED of the thought that one day I will have to have my entire armpit removed and drafted because it is so infected that nothing else can be done. I never thought this could happen to me but it is and all I can do is learn to cope with thigns like hot compresses (whihc do often help) and I have to cover them all the time to keep leakage in check and things like that. I have to learn to cope and find a way to live my life despite this and keep on trying things that people say might help.

    One thing I have definitely learnt, especially in the last couple of years, is that you have to be active and not just trust your doctor or listen to what they say. You have to research it and read everythign you can because this is different for everybody. I had a doctor tell me that I have this because I used to smoke. He was POSITIVE that is the reason, then I told him I don't smoke anymore and he looked stunned. I also know of a little girl who started getting this at 8 years old! and obviously, she was not a smoker. Another person thinks it must be food allergies. So who knows. Everyone thinks they have the answer but ultimately, you have to figure out what it is for you because maybe your trigger was not the same as mine and maybe your cure is not the same as mine.

    If you read about HS you will find that it really seems to be caused by a few things together and not jsut one thing you can treat alone First, something happens in a hair follicle or gland (no one to thsi day is sure why or even what that is), THEN it has to get blocked or filled with something (no one is sure what) maybe sweat, maybe oil, maybe dead skin. Then it gets inflammed (by your immune response). Then it will get infected, or not, it depends (on what, no one knows, maybe hygiene, maybe a bacteria not yet identified, or maybe something else). Finally, for some reason, cysts errupt backwards, essentially pushing the infection or blockage deeper into the skin instead of out, like a normal pimple for example, and it becomes more and more inflammed, infected, painful, until at last it may pop up to the surface form all the pressure, or infection goes into the bloodstream and you get antibiotics, which only slow it down and maybe shrink it for however long.

    So, from jsut that small tiny explanation you can see that there are many things working to make HS possible. 1) is on a cellular level (i.e. why my cells and not a 'regular' persons cells). 2) is your body's immune response and how badly your body is going to inflame the problem under your skin (i.e. the blocked pore, gland), 3) is the bacteria causing the infection (what is it and where does it come from, why doesn't everybody have the same problem when a hair follicle gets blocked?) Another is that hormones paly a role. I notice, without a doubt that cysts often blow up right around my period. Its probably not my perios that is causing them, but it certainly makes them worse.

    Anyways all this was to just sort of get your mind working and I hope you do lots of research and help yourself understand what is going on. It will also help you talk to your doctor better and help you understand what they are saying or suggesting. I hope it will help you understand that you have to try as many things as you can and maybe more than one thing at a time. Find what works best for you. And I wish you so much luck in doing that and if you find anything working for you, please post post post lol and tell everybody.

     

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  • Posted

    I've had it for ten years. Just recently, I decided to cut gluten out of my diet after I read some success stories. Within a week, the two active abscesses I had were nearly completely gone. None appeared after that until I accidentally ate marinade that had wheat in it. After that flare up, I had a few more weeks of non-gluten and no flare ups. Accidentally ate wheat again, another flare up. Another few weeks without a flare up. Then I reintroduced gluten to my diet for two days so that I could know for sure. And sure enough, huge flare up. Much bigger than when I accidentally ate gluten.

    I know that everyone is different, but I'm pretty sure this would help anyone with HS.

    Another self treatment that I've found that helps tremendously is a hot bath with Epsom salt and apple cider vinegar. It helps so much with the pain and also helps them drain naturally. Hope this helps.

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