Needing some support

Posted , 8 users are following.

So Ive had HS for nearly 5 years now and its just getting worse, my flare ups are always in my groin, on my bum and in my armpits. I was starting to come to terms with it and was feeling more comfortable even though I hate the scarring I was beginning to accept that this is something Ive got to deal with no point getting upset over it. However Ive just noticed a new one under my boob which ive never had before and its just tipped me over the edge. Im so sick of this ive tried all the antibiotics, weird home remedies, diets, lost 2 stone and its just spreading. Does anyone have any success stories they could share with me because i could really do with some inspiration/hope x

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11 Replies

  • Posted

    Hi Elliss, i get them in the same spots minus the boobs, but after like 10 years i started getting a few on my face, the money maker. the good news is you can get rid of them and never get another one, the bad news is you can never eat another drop of sugar for the rest of your life. There was one person on here who said one day her hs just disappeared completely but didn't know why, so there is that bit of hope

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  • Posted

    Kudos on the strength to accept HS as just part of your life! That is really really hard getting to a place of peace when HS is such a horrible frustrating disease. I’ve personally had HS since I was 12. I’m 32 now....yeah a flipping long time 😦 I tried to ignore it as a kid, tried to look past it, and at times I felt ok, but I know exactly what you mean when you lose it over a new growth. It’s so defeating! This disease has been the biggest struggle of my life! And such a constant factor of stress, sadness and despair. You do just have to make a decision that it won’t control you and to find happiness despite it. So for me, it wasn’t until 2 years ago that I finally found relief! I began thinking probably 7 years ago that diet played a huge part. I did my own research and read a lot about what other HS sufferers figured out so I tried elimination diets. It was 2 years ago when I figured out my trigger. It was sugar. I get absolutely no bumps or flairs or any of it when I don’t consume sugar! It feels like I don’t even have HS any more! Doctors really don’t have all the answers. They just prescribed me with antibiotics or would upfront tell me they didn’t know much about it. So it really takes research on our parts. It’s a disease that won’t just go away, but we can help it. It’s hard doing elimination diets, I know, I tried everything, but it’s the greatest gift of all when you discover you can control the outbreaks! I know HS sufferers are all different. A large part of the community avoids night shades and they see relief. But I and others are discovering sugar is the culprit. There really isn’t exceptions for me. I’ve had to cut it all out period. HS is so finicky that if I make one slip I’m back to a new outbreak. It takes a lot of careful planning on my meals. I don’t know if you’ve tried eliminating certain foods, but I truly believe HS is tied into what we eat. So I guess my advice is to research ways of starting an elimination diet if you’re interested or talk to a doctor on how to begin one where it is healthy and wise. I truly believe after having HS for this long is that food is the key but still hoping one day there will be a true cure!

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    • Posted

      Thankyou so much for this it really did give me hope! Ive started with the elimination diets tried nightshade vegetables and dairy so will have to give sugar a go now. Everything you said i can relate to so much! I began accepting the flare ups and not really caring unless i was in really bad pain, but just seeing it spread to a new area was a kick in the stomach. Glad youve got yours under control!:)

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    • Posted

      Can u have fruit? And what about sugar substitutes? My son has had this since puberty, along with IBS, and nothing has helped. Doctors are CLUELESS.

      Thanks ,

      Sad Mom of a 16 year old boy with severe HS

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    • Posted

      So everyone is different, I have read someone not even able to have fruit. But me, yes I can! It’s only refined sugar. Pretty much my diet has to be pretty clean, organic and natural. I feel your pain, that’s one of my fears, passing HS down to my kids. I pray they will never have to go through it! Oh also I have the occasional sugar free item. I try not to regularly as I don’t think that stuff is that great for anybody. But stevia is a good choice! I am thankful I can have that in my coffee 😃

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  • Posted

    hi, i read here before a lady who she was also diabetic , she said she drink "pau de acre" tea( it is american latin tea)

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  • Posted

    Hey, in my case, I have stage 3 HS. Its not visible because most of it has been on my armpits, my groin and under my breast. I have had it for the past 16 years. I was suffering from reoccurring flare ups almost every other week. I hated it, but for the past two years, my flare ups diminished and my groin area seemed to have cleared, except for the scarring but that is ok I have learned to just give a damn and deal with it. There is times before my menstruation in which I get small bumps that become tender, but eventually they go away specially under my breast. My armpits still have some activity of infection , but they don't get swollen like they used to and there is times that seem to clear and are painless but it doesn't go away completely. I know the scarring will never go away but whatever, to this day, i haven't had any major flare ups and am pain free most of the time. Following are the changes that I went through that might be the reason why my flare ups decreased, it did not cure me but at least it helped to make it better. I started with taking Accutane in 2017, its a strong medication that if you suffer from liver problems, its risky. I did a treatment of almost a year, usually its only 6 months but my dosage had to be smaller than normal due to the way it reacted on my liver, therefore it prolongs the entire treatment, but I completed the treatment successfully. This helped the acne on my back and face clear up! that I really liked. To this day still is clear, one zit here in there once in while but compare to before there was a huge improvement. 5 months after Accutane, I did the laser hair removal treatments on my groin and armpits. It was painful because they tend to go over your tender areas, but it was worth it. I think i did about 7 or 8 sessions. It all depends on how strong the frequency of the laser is, the higher the quicker and better. I believe this was the main reason my flare ups diminished on my groin and armpits, but since I did Accutane around the same time, am not sure. I am not saying you should do this, but at least you can consider it and talk with your dermatologist. As for having them under your breast, in my case, Accutane helped best.

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    • Posted

      Thankyou for this reply! Never had Accutane but its something ill deffo be bringing up in my next appointment, ive just had a liver function test for a different type of medication that must have some of the same affects. I 100% am worse when im coming on my period but regardless of them i still flare up at the very least once a week in multiple areas. I have been getting used to the scarring and not caring too much but just seeing it spreading really got to me.

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  • Posted

    have you tried autoimmune paleo diet. it helps find food triggers while giving your body time to heal from processed foods and junk and giving it nutrients it needs to reverse disease

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  • Posted

    Hi Ellis. Nothing much to offer you, other than sympathy. Have you tried magnesium sulphate paste? It seems to help a little in drawing out the infection.

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