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Posted , 6 users are following.

Hi! 

So I’m nearly 30 and have suffered with lumps in my groin and thigh area since I was 15.

In the last 12 months, after doing research myself and after numerous doctors appointments, I was finally diagnosed with HS. 

I have always self managed my lumps but recently I have a persistent one that flares up every couple of months. 

I’ve been told by the doctors and the dermatologist at the hospital that apart from a cream and tablets, there is nothing else they can do for me.

I feel a bit lost now, I knew this was something that I couldn’t permanently get rid of, but surely there is more than can be done about managing it. They wouldn’t even drain them. 

My persistent lump is currently inflamed,  blue and purple in colour and no sign of popping. I am in a lot of pain and discomfort, especially at work. 

Am I wrong in thinking, that there is more that can be done and can they drain them? 

Thanks in advance 

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13 Replies

  • Posted

    Hi Jacki

    I am surprised they will not drain them. I saw my Doctor today and said I could have surgery and I dont really have them very bad....thats all he said.  When they get so tight and large, I sit in the bath...as warm as I can take. I also but wet warm compress on them so they drain. I use tea tree oil every morning and night.I take alot of supplements that are anti-inflammatory. Tumeric is helpful. I will never stop trying. Antibiotics dont do anything. Just keep searching and trying

     

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  • Posted

    Hi Jackie. Unless there is enough collection of pus, medical professionals can't drain the HS flare.

    Wet hot water compresses using a wash cloth, with some calendula mother tincture, used to help me.

    I would do the compresses several times a day.

    For the purple/blue color, did any doc tell you why it lookslooked like that?

    Surgeries, antibiotics and steroid don't sort the underlying tendencies.

    I'm 35 now, in remission. Had HS since I was 15, just like you. Surgeries hadn't helped. Long course antibiotics (multiple rounds) hadn't helped except when I was on them. Steroid shots caused relief, until things got out of control around my 30th birthday.

    I switched to Holistic treatment. Homeopathy. 5 yrs of treatment, some lifestyle and diet tweaks and I'm in remission.

    Point is all hope is not lost. Try different approaches, preferably holistic ones, that work on the abnormal underlying tendencies.

    Any questions, feel free to ask. Take care!

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  • Posted

    Hi Jackie please look into your diet I went gluten and dairy free and I'm in remittion to don't give up do your own research because I found the dermatologist just wanted to medicate me all the time and it wasn't helping you have to heal inside out , I saw a kenlogist which was great x

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    • Posted

      It took me months off research to come across the info I needed, what we have is basically an autoimmune disease, gluten is really bad if you have one off these, people are to quick to take meds unless there's no option and 100% needed , I think

      If most people try cutting things from thier diet they woukd see some sort off difference but u have to stick to it and can be hard but 100% worth it x

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  • Posted

    Study up on biologics such as Humira. Also I sometimes get Kenalog injections in the worst bumps. It hurts like hell but then the bump goes away within 24 hours (not 100% of the time, but for me I'd guess 95%, and the stubborn 5% go down a good bit). You can also get them lanced & drained (and packed (if large or deep enough). It sucks.

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  • Posted

    Jackie, I found it very worth my while to find a dermatologist who had experience treating HS. I came at this a little backward - by subscribing to medical journals, and searching for authors of HS articles, then emailing them to ask if they knew of anyone in my area who had some knowledge of and expertise with HS. Unless you see somebody who has some knowledge and background with it, you will just be prescribed antibiotics and treatments for acne or staph infection.

    I nearly ruined my digestive system with years of antibiotics in my teens. In  my late 20's, I finally found a doctor who knew what HS was (a type of autoimmune inflammatory reaction) and what it was not (acne, staph infection). Sometimes the bumps DO develop infections, but in 20 years of having mine cultured regularly, I have never cultured any bacteria that required antibiotic treatment. 

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  • Posted

    No, I feel the same way you do. I've been having HS since i was 19 and im 32 now. I think it's other things that can be done but they have not reached out to the ppl that know what other things to use. Facebook has a page for a HS institution. I did some research and they say emuaid, is the only cream that can keep it away longer. It's high so that's why I haven't tired it out, they sell it in Walgreen and other stores.

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