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Is this Hidradenitis Suppurativa?

Posted , 9 users are following.

lala1234
lala1234

Hi everyone,

Im looking for answers to a few questions I have. I've been getting boils/nodules in my buttock/groin area that would sometimes break open and sometimes just disappear since I was around 12. They left scares which are still there to this day.

Around 15-16, I started getting 1-2 boils/nodules in my armpits that would sometimes burst open and sometimes just go away.

2 1/2 years ago, during a very hot day in May (i mention hot because i SWEAT A LOT) after shaving, I got multiple boils/nodules under both armpits. They were very red, painful, tender to the touch. Some of them broke open and released some fluids, some of them went away on their own after a week or so after I got put on antibiotics. 

The doctor diagnosed it with HS. She said that she had the same thing when she was younger and what I was experiencing was a "flare". 

I have never met anyone who experienced something like this, or even heard of HS so I am looking for if someone has ever experienced this? 

0 likes, 24 replies

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  • samantha2202
    samantha2202 lala1234

    Posted

    I am exactly the same as you. I got my diagnosis in my teens. I have found that shaving makes my situation a million times worse even using a fresh razor everytime and boiled water. I think its to do with nicking the heads with the blade and spreading the bacteria. I got referred to my dermatologist after months of short course anti biotic. He put me on a long course which I take every day and a cream which goes on at night before bed. I also have a wash to use in the shower. The only advice I can give is it stop shaving, ask for a dermatology referral, and if you don't already stop using scented bath products as these can make it worse. But early diagnosis is key and its a condition which is better caught early as prevention works better with it. Good luck x

    • lala1234
      lala1234 samantha2202

      Posted

      Same situation for me. As a girl, I dont want to grow into a wooly mammoth but I also get folliculitis every time I shave in the armpit or the pubic hair area. 

      I agree. I think that when we shave we are nicking the heads with the blade and spreading the bacteria. 

      Thankfully, my armpit area hasn't be SO terrible since that horrible flare I had 2- 2 1/2 years ago. But like I mentioned earlier, I have heard its going to get worse as I get older (Im only 22 now).

      Groin/buttock area is the worst. I get at least 1-2 boils and nodules in that area every few weeks and it is painful. 

      I have a feeling that stress and hormones have something do with this also. 

       

    • aussie76
      aussie76 lala1234

      Posted

      Lala on one hand yes... if it continues forever it does get worse.  My armpits continued forever (40 now) but the groin was real bad and stopped mid-late 20's.  There was never an exact time, but while I'm still dealing with armpits and backside I realised groin was worst first, stopped first.
    • lala1234
      lala1234 aussie76

      Posted

      Like I said, I had that flare 2 1/2 years ago and boy was it painful. I could barely move my arms. I was so scared I had no idea what it was. I had these giant boil/nodules under my armpits and a few started to open and release fluids. It was horrible. 

      Thankfully, my doctor at the time said she experienced the same thing when she was young ( she said she had boils the size of golfballs under her armpits when she was my age) so she said it was HS right away. 

      Since then, like I said, I only get them 1-2 times a month on my bum. They are painful as hell, but managable (sometimes i cant sit on my butt but i figure it can be worse).

      Im just praying that the flares under the armpits dont return. I do have "tracts" under my armpits from the nodules/boils that didnt burst and i feel them under my skin as well as minor scarring from the ones that did. 

      Its just such an unknown condition. Wish there was more awareness of it.

       

  • miss_smith
    miss_smith lala1234

    Posted

    I was told by my doctor it could be hormone related as i got less proper abscess's while pregnant and breastfeeding, once i stopped breastfeeding they came back a week after i stopped producing milk. Stress is also a big factor i believe as when im stressed i have more nodules that turn into abscess's i tried the daily antibiotics but that didnt work on reducing them, i just use antibacterial soaps and just to clarify when i said manually trim i meant with a trimmer as suggested in an earlier reply.

    One dermatologist i saw said that when i reach menopause and my hormones settle down they will stop or subside alot but im sceptical.

    • crystal_08850
      crystal_08850 miss_smith

      Posted

      Your immune system fluctuates with your hormones. HS is autoimmune. That's why some think it's hormone related.
  • kim54404
    kim54404 lala1234

    Posted

    It is autoimmune and that's why humira works for the people that have tried it. I personally have no experience with humira but plenty with HS. Since about your age mine developed under my breasts first then armpits and now the groin and I'm almost 40. On a new round of antibiotics now for a softball sized one on my upper bikini line almost near my abdomen. So I am experimenting with a probiotic. First reason was to combat the diarreah associated with augmentin but then I got thinking and researching and from my research 90% of your immune system is located in your intestines, also your hormones and immune system are connected so I got thinking about a bacterial imbalance that might be happening in the intestines. My thought was what happens to the bad bacteria in your intestines if there is too much of it? Must seep into your blood stream and through your body and exit through glands in the sweetiest parts of the body hence the armpits and groin. Do you see where I'm going with this theory? Mind you its solely a theory and once I'm over the dreaded antibiotic treatment I am still going to continue my probiotic and try to be very cautious of my bad bacteria consumption. I have well water that I use to cook with and make coffee (heavy caffeine junkie) and I plan on switching everything to bottled water and decaying my beloved coffee maker once a week. I think sometimes we get too much bad bacteria from various places and not enough good bacteria to balance our systems hence my new personal experiment. I will let you all know if this probiotic stint helps, as I would get my friends around the same time as my other friend every month. Something has got to be out of balance is my theory. Note I have also tried the nightshade and paleo diets neither with total success. Only was more miserable I couldn't eat my favorite foods.
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