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PLS HELP! How did your HS started the first time? Was it very bad from start or it worsen over time?

Posted , 6 users are following.

kiki14318
kiki14318

HI guys! (sorry for my English, it's not my native language). I really need your help! Just yesterday I found out that I have HS. I didn't even know that disease exists. But I read all of your posts and there is something I dont understand. I've  had those boils on my groin for a few years now(one in a few weeks and sometimes even one in a few months) and a lot of those were just red and inflamed so i would put some creme, sometimes take antibiotics for a week, and it wold dissapear in few days. It was painful, but no blood or smth like that. Now I have it every wee/month in groin area, they open and bleed, my doctor gives me antibiotics and i put bandaging and rivanol to clean the area. It is painful just until they pop, after that is just uuugly, bloody and leaves the scar and then in a week or two here we go again in the same place. I AM SOOOO ANGRY!!!!! 2 years ago i had 2 small under my boobs, it wasnt very bad, my doctor put some rivanol and gaze and it was ok. Never had that again thank God. 2 years ago I also had inflamed area (armpit) it was REALLY bad, red and inflamed, i couldn move my arms but again no blood, scar or returning in these 2 years. Those in groin area are killing me. The questiosn is-DID YOUR HS START AS "SMALL PROBLEM" AND DURING THE TIME IT GOT WORSE, OR IT WAS REALLY BAD FROM THE BEGINNING? I am holding on hope that maaaaybe it won't get worse cuz it's here for a few years now and it's always pretty much the same the same. I am really scared of celulitis or septic and things like that sad

0 likes, 11 replies

11 Replies

  • gregory4312
    gregory4312 kiki14318

    Posted

    Mine was pretty bad in the beginning and it gradually became less painful. It started in 2013 and I underwent a surgery back then for coccyx cysts (which I now believe were symptoms of HS) and a couple more surgeries on my groin area due to abscesses. For about 6 months now I've been spraying that area with Octenisan and I can say that it has helped me a bit. A very important part in the appearance of the inflammations is stress. I've been doing my best to avoid it and I advise you to do the same. Let me know if you have any other specific questions and I'll do my best to answer them.

    • kiki14318
      kiki14318 gregory4312

      Posted

      Thank you, Gregory smile Means a lot to hear someones experience. I didn't think about stress as a possible reason, but now that you've mentioned that...I am extremely anxious last 2 years, I even had a panic attack because my body was so tired of stress. Were your abscesses big? I mean, I'm not sure if I should do some surgerie maybe, doctors here are not very interested to give me some helpful advice. Mine are like 2centimeteres each aprox. Once again, thanks for sharing your experience smile

  • rachel14667
    rachel14667 kiki14318

    Posted

    Hi Kiki, 

    Don't panic, we are all different. There's no saying how it will be for you. For me, the very first attack was by far the worst - in my left armpit 14 came up at once. I didn't even know then that HS existed let alone that I had it myself. I cried all day and all night for 2 weeks before I went to the dr. Luckily, I was diagnosed straight away but the pain was tremendous. Since then, I have had several attacks so it has 'spread' to several other areas, both armpits, right boob once, down below once, shoulder twice. None of these have been as painful as the first attack. I have been symptom free for about 2 months since I went on the Atkins diet, so it has to be an intolerance to either nightshades or wheat for me. I have had HS for just over a year. Reading other streams on here, and doing a bit of research myself it is obvious it is progressive, but some people don't seem to get to stage 3. 

    Regardless of all that, keep getting medical help and find out what works for you. Different things seem to work for different people. 

    Best of luck!

    • kiki14318
      kiki14318 rachel14667

      Posted

      Hey Rachel smile Thanks for sharing your experience, means a lot to me because I'm still "new" when it comes to this. I am definately going to try the diet, I hope it will work for me too. For now, it wasn't soooo bad as I've seen on pics when I googled it :O That stage III looks like hell and I'll do ANYTHING just to avoid that. I've just came home from my gynecologist and she told me that "moder medicine" won't help me a lot and that I should try to find a "natural cure" for my immune system and to try to avoid those bad stages by eating the right food smile

  • Debbon
    Debbon kiki14318

    Posted

    I would say try not to panick some people only ever get mild stages of this and for others it's worse. If possible get food and alergie testing done as this helps a lot. And for some people if they change their diet it goes into remmision. Good luck .

    • kiki14318
      kiki14318 Debbon

      Posted

      Thanks Debbon, I'll try not to panic, but I find that very difficult trust me :D I'll do those tests tomorrow, hopefully that will help. Did that help you?

    • Debbon
      Debbon kiki14318

      Posted

      It's my daughter who has hs after she got tests done it showed that she was dairy intolerance also her magnesium levels were very low so since cutting out dairy it has got a lot better also she's following a paelo diet .it a lot better within a few weeks she noticed a huge improvement. I hope this helps .

  • roberto_98022
    roberto_98022 kiki14318

    Posted

    Started small. Grew worse over time for me.
    • kiki14318
      kiki14318 roberto_98022

      Posted

      Hey Roberto, thank you for responding, I'm still new in this so don't mind if I ask 1. Did you know from the beginning that that was HS and you found medical help and regardless HS progressed? 2. After how long the condition got worse? THANK YOU so much and I hope you'll get rid of that monster in the near future smile

  • Smiley38
    Smiley38 kiki14318

    Posted

    For me, it started out small at the age of 12 and when I allowed it to go unnoticed and uncared for it gradually spread in numerous areas. I have undergone several surgeries from age 12 to 38. I do have a small active are now but I have come a long way from where I started with this. I'm currently taking humira and sulfur along with a dose of zinc and things are sooo much better. Please dont get discouraged it will get better but talk with a dermatologist that is very knowledgeable about this illness.

    • kiki14318
      kiki14318 Smiley38

      Posted

      Thank you so much...I also had it as a teenager but just once, and it wasn't bad so I didn't pay attention. In the last couple of years it's worse but still stage 1 and I am a little bit discouraged because I take antibiotics while I have a boil, and then the next month again I have the same problem and again antbiotics and it's like closed circle. And I'm 26 and planing to have kids one day, I'm pretty sure antibiotics aren't the healtiest thing in the world so I'm going crazy and it really makes me derpressed to know there is no cure for such painful disese in 21st centry but I hope fot the best. I didn't know that zinc has imapct on this??? Thank you so much once again smile

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