Same lump for more than a year

Posted , 8 users are following.

Hi.

I've been suffering with HS since I was 15, I'm now 29. My lumps come and go but usually clear up within a week or 2, leaving scars behind.

But I've had this one lump for more than a year. I've been on antibiotics and steroids but nothing works. It's normally quite small and under the skin so not visible and not painful. But every month or so it swells up and bleeds and is painful, then goes back to the small lump under the skin.

Has anyone else had anything like this? I'm worried that its not HS at all and could be something worse. I've been to the Drs plenty of times but they won't refer me to a dermatologist unless I try another harsh course of antibiotics, which I don't really want.

1 like, 15 replies

15 Replies

  • Edited

    HELLO, YES, I HAVE EXPERIENCED THE SAME THING. I QUIT GOING TO THE DRS FOR ANTIBIOTICS 3 YEARS AGO AND INSTEAD STARTED A FOOD DIARY AND ELIMINATED STRESS, SUGAR, AS WELL

    AS FOODS THAT INFLAME THE BODY.

    I HAVE TRIED EVERY CREAM, HOME REMEDY, OILS, AND WESTERN MEDICINE.

    I BEGAN TAKING ANTI-inflammatory herbs and IMMUNE BOOSTING FOODS, SPICES, AND HERBS.

    HOT SHOWERS USUALLY BRING THEM TO A HEAD WITHIN A FEW DAYS.

    ITS THE HEALING PROCESS AND THE FATIGUE THATS HARD TO OVERCOME.

    I JUST STARTED CBD oil internally once per day and that has done more for me than anything purchased over 10 years.

    LYSINE HELPS SO THEY ARE NOT SO PAINFUL. START TO TRACK WHAT YOU ARE EATING AND SEE WHATS TRIGGERED THE ABCESS AND INFLAMMATION.

    EVERYONES BODY IS DIFFERENT, BUT WHAT HAPPENS WITH HS INVOLVES THE LYPHOTIC SYSTEM GETTING PLUGGED OR INFLAMED USUALLY WHERE THE SWEAT GLANDS ARE.

    HERBS: echinachea, burdock root, oregenol oil internally.

    • Edited

      Thank you so much for your reply! It's nice to know I'm not alone. I will try the food diary and see if I notice any particular foods that may be triggering the inflammation. I'm also going to look into the herbs and CBD oil.

      Thank you for the advice it's very helpful!!

  • Posted

    I'm so sorry to hear you are going through this. That sounds like HS, even though each one's experience is unique. I concur with what Rocky said, among other things. I'm not sure where you but sadly i've needed to go straight to a private doctor and pay the private fee. If one where to wait for a referral, they would give you every antibiotic imaginable. And we all know what the long term consequences of that is. Wishing you the best!

    • Posted

      Thank you for your reply.

      The doctors have been nice enough but a bit dismissive.. I can't believe I can't be referred to a dermatologist after suffering from the condition for 14 years. I feel like I'm just being fed different antibiotics and the next course they offered could course horrible side effects so I'm reluctant to try them if no others have helped.

      I am going to try the advice mentioned by rocky but as you said might have to consider seeing a private doctor in the future.

      Thanks so much for your reply, it's been very helpful!!

    • Posted

      Where are you located? I've consulted with dermatologists on 3 continents. Perhaps i might have experience with a local dermatologist!

    • Posted

      I'm in the south of England.

      I wish the doctors would jusy refer me to a dermatologist so I can get a second opinion, but they wont

    • Posted

      I consulted with a well respected private dermatologist Dr. Adam Friedman in London. He's well versed in HS. I didn't need a referral since i paid the fee myself. He also works at the hospital once weekly.

  • Edited

    Hi there, my HS is the same way. New ones come and go but there's a few that are always there. Usually they're not active but you can feel the slightest bump under the skin

    Please try dietary changes, this condition is definitely food related. I've found the trigger to be sugar for me, for the last year I've been testing different kinds of sugars and amounts to see what is acceptable. The bad news is HS has zero tolerance.

    For example if i drink a soft drink, by tomorrow I'll have a new lump or two, or one of the recurring ones will start growing. I thought at first i could get away with eating fruits but while not as extreme as the soda they still trigger the lumps. The amounts that will trigger me are in the sub 4 gram per day territory, i had a quarter of an onion sliced in a salad the other day and the sugars in it started the familiar tingling under my arms that ultimately leads to a flareup

    I'm confident that given enough time with 0 sugar consumption even the recurring ones will fully heal, but i haven't been able to manage it in the year I've been testing since it's so hard to not have sugar sneak into your food. Even a couple of grams in a slice of bread will be enough to wake them up. I think one thing that would work is one of those ridiculous carnivore diets, but that's too extreme an option just yet for me

    • Posted

      i see you mentioned the small amount of sugar in the bread. In my condition it's not the sugar who triggers it mostly but yeast. And apparently Yeast is known to triggers Hs in 100% of patients in all the studies/experiments done about HS. is sugar the only thing that triggers flare up for you?

    • Posted

      Indeed only sugar for me. I'm struggling to think of an item that has yeast but no sugar so i can say definitively. I can say I've extensively tested beer with no issues 😆

      Sourdough bread has been ok because there's 0 sugar according to the label on the one i buy, but i think some of them are made without yeast. Another factor that makes it hard to pinpoint is a person's sensitivity to the trigger food.

      I practically lived off soda in my 20s but i didn't always have flareups, so it wasn't always an immediate cause and effect like it is now at 33, where i'll start feeling the results of the sugar within hours of eating, sometimes minutes

  • Posted

    hi! I've had the same for a long time

    Doc said its folliculitis, but one turned into a nasty boil that gets worse, then not so bad then worse again. it never goes completely. I'm wondering if I have HS. I have lots of smaller ones that heal quicker.

    so the one I'm worried about is on my breast, which because I have severe health anxiety, it makes me worry it's something more sinister. the smaller ones are also on my breast, then i sometimes get them in pubic area (sorry tmi)

    I've had a weeks course of oral anti-biotics, and half way through a cream, neither have worked.

    I'm fed up and sick of worrying

    • Posted

      I don't know much about folliculitus, but the boil sounds a lot like HS. After extensively researching my symptoms many years ago I knew I had HS even when doctors told me I didn't, I was only formally diagnosed last year.

      I too have bad health anxiety as this particular lump is not like any others I've had before. But it's reassuring to know others are in similar situations and none of the doctors I've seen seem worried.

      I've been on 3 different types of antibiotics, steroids and creams, but nothing works!

    • Posted

      hi,

      I've joined a Facebook group HS uk and Ireland support group. (HS been spelled out in full) its helped me realise that I am not alone, and some people have it a hell of a lot worse. check it out, theres also lots of advice on there too

  • Posted

    If you havent done it yet do an elimination diet. You can do it yourself if the doctor

    wont. It is pretty specific and you can't rush through it. You basically start out with a bland diet no bread, milk or sugars. you keep a diary. You feel great in the beginning like your body is recovering. Then for me one day they had me drink milk and bam I was sick as a dog. When I get sick it goes on for a week.

    I believe allergic food reactions are causing H.S high sugar items, including milk products.

  • Posted

    Hello,

    Yes I have experience the same thing. I had HS since I was 14 years old, I am 27 now and HS FREE for 8 months now. This disease literally changed my life when I hit puberty and now I feel like I never felt before after 19 years of suffering. Going to the doctors won't help at all because some doctors don't even know what you have and they send you to the dermatologist and the dermatologist prescribes skin cream and then if it don't work they refer you to the surgeon to get it removed. The boils grow back even if you do the surgery sad but true. Don't get discouraged though because if I am HS free that means you can be HS free as well. After doing so much research with my sister because she has it too since she was 10 years old. We both came across this website called hidradenitissupparativa.store this guy tells his story on his HS journey and how he cured it. He has helped many people be HS free with the things he recommends. I hope your boils get better soon and you can be HS free as well because this disease is no joke and I hate the fact that we have to suffer because doctors don't have any answers for us. God bless you and your family.

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