Any other Hidradenitis Suppurativa sufferers out there?

Options
1…456810

Replies

  • kathystrauss1
    kathystrauss1 Posts: 142 Member
    Options
    Well I don't have it but I'm a nurse that has taken care of a young man with it. What a horrible disease. You have my prayers. I really admire you for dealing with it and putting yourself out there.
  • denisejohnson754365
    denisejohnson754365 Posts: 294
    Options
    In my nonmedical opinion it is certainly possible that it is not HS, who knows? the Doctors I've been to have known very little about this condition and from what I have read the current consensus is that is a chronic infection of the apocrine glands. I think it is worth getting a second opinion if you can find a MD that is knowledgeable about it.
  • denisejohnson754365
    denisejohnson754365 Posts: 294
    Options
    Kathystrauss1- is nice to hear of a compassionate nurse, last time I went in the nurses were like "OMG what is it" and I felt dirty and like a freak. I spoke up and told them that we are not unclean etc. Also, they keep telling me to go to the doctor whenever it occurs, 9 times out of ten when I do go they say there is nothing they can do and I'm resistant against antibiotics which never helped anyway.
    I did have surgery under my right arm and there has been no recurrence there.
  • iameeviac
    iameeviac Posts: 6 Member
    Options
    In my nonmedical opinion it is certainly possible that it is not HS, who knows? the Doctors I've been to have known very little about this condition and from what I have read the current consensus is that is a chronic infection of the apocrine glands. I think it is worth getting a second opinion if you can find a MD that is knowledgeable about it.

    Thanks. It took my 19 years to see a dermatologist about this... this guy doesn't want to see me again for 3 months!!! Do you call clinics and leave a note asking how knowledgeable the doc is with HS before making an appt?

    (love your day of the dead ticker, btw)
  • iameeviac
    iameeviac Posts: 6 Member
    Options
    Here is a website of docs specializing in HS all over the nation. http://hs-usa.webs.com/doctorexchange.htm except for the Alabama listings, they all seem to be plastic surgeons. :(
  • denisejohnson754365
    denisejohnson754365 Posts: 294
    Options
    I probably would call the doctor's office and explain the situation, see what they can tell you, or a Nurse's line?
  • veronaker
    veronaker Posts: 1
    Options
    I have personally linked my HS to smoking. Initially got it in my teens in the groin region. I was operated on to have the areas removed which coincided with me stopping smoking and didn't have any sign of it for 7 years. I didn't link the recovery to stopping smoking but credited the surgery.

    Stupidly started smoking 3 years ago and it appeared in my armpits, thighs and breasts. I have stopped smoking on and off over the last 3 years and have found when I quit the HS goes berserk as if trying to clean out the toxins from my body. Was interested in the nightshade theory and after having lots of tomatoes in my salad at lunch time today the lump under my arm is throbbing after me thinking it was getting better. The lump also has hardened tracts leading from it which is creating a throbbing all down my arm. Just trying to wish it away at the moment to no avail. Tend not to go to the doctors as history tells me that riding it out is what has worked for me in the past.
  • denisejohnson754365
    denisejohnson754365 Posts: 294
    Options
    the tracts scare me, if not treated they start up in another area that the tract leads to. The under arms/axilla can be helped with surgery.
  • kbransky
    kbransky Posts: 2
    Options
    Did you ever look into Laser hair removal? With waxing, shaving etc, you can still be subjected to ingrown hairs b/c your hair may grow back thicker?
  • thathelenagirl
    thathelenagirl Posts: 24 Member
    Options
    I'd like to become friends with anyone suffering from the terrible disease. It'd be great to have people to talk to that understand it is real and isn't just an excuse.
  • thathelenagirl
    thathelenagirl Posts: 24 Member
    Options
    Is there a group you created? I have had it since I was 17. It's horrible.
  • flo_soup
    flo_soup Posts: 3
    Options
    I have this too a long with other auto immune disorders. I HATE it. It's disgusting and painful and destroys any self esteem :-(
  • rocketman440
    rocketman440 Posts: 1
    Options
    Thanks for starting this thread/topic. I'm a HS sufferer for the past 25 years. I've tried a lot of things with limited or no success. Antibiotics, soap, laser, surgery, micro dermabrasion, creams, gels, home remedies, sun. I have had doctors shrug their shoulders and say "I can't help you" or "I can't fix that".... denied insurance coverage because treatment is categorized as "cosmetic".

    I have found over the years that it's better for me not to talk about it to most people, because, while they have good intentions, their casual advice only reminds me of how clueless they are about the disease, and how difficult it is to treat. i.e. "Have you tried Proactive?, it really worked for my friend's pimples." "Have you tried ____ soap?" "drink more water!" "you're not washing correctly". ugh!!!! I know they're only trying to help, but this kind of talk only adds to the depression. I'm sure many of you can relate.

    It's a little comforting to finally find other people with the same problem that I have had my entire adult life. I will be trying some of the suggestions that I have read here. Thanks to everyone who is participating. I will check out the group.
  • ahoier
    ahoier Posts: 312 Member
    Options
    My gf is......the big thing that helped her (well....us....) was cutting out the sugar.....and then soaking a towel in apple cider vinegar compress, and laying it at/around the infected area.....
  • ChildrenCryinNCoffee
    ChildrenCryinNCoffee Posts: 477 Member
    Options
    I am a sufferer of HS and didn't know that I had it until I tried to "lance" one one the cysts/boils myself and ended up really sick with a staph infection.
  • indianagirl00
    indianagirl00 Posts: 1
    Options
    I too have this disease. I had surgery on my right underarm twice it seemed to help actually only issue now is my skin is so degraded from having the cysts there that the surgical scar and to be silver nitrated closed and it opens from Tim to time. The itching is killer!! My left is now flared up. I've done some research and found that antiseptic wash the kind that doctors use to scrub up with washing with that helps a lot! I have a couple down by my groin area that come and go. I'm tired of the itching and pain . I'm also taking turmeric again it's supposed to help as well.
  • denisejohnson754365
    denisejohnson754365 Posts: 294
    Options
    I know we all have this condition but I say, we rock! we have suffered and not given up. We won't let this stop us. We love ourselves and have high self esteem. There is no need for us to hang our heads in shame.
  • lcarter7797
    lcarter7797 Posts: 3
    Options
    Has anyone here had family that served in Vietnam and were possibly exposed to Agent Orange? I was researching causes and there are a few VA cases that have attributed Hidradenitis Suppurativa as an effect to being sprayed with Agent Orange and has been shown to pass to offspring.
  • javanut74
    javanut74 Posts: 2
    Options
    Hello All. I've had HS for 20 years. How horrible. It has brought me to the depths of depression many times. I accept it now, but at times it still does affect me. The ONLY thing that has ever worked to control it is laser. In 2004 I had 3 sessions of IPL to my groin area and was in near remission until about a year and a half ago. It even helped with the scarring. However, the past year it has been out of control, especially the last six months. I have had a huge boil under my left arm that has not subsided, tried epsom salt, minocin oral abt, lancing, it's just refusing to burst. 3 days ago I went to Whole foods and got Neem oil. It stinks like crazy but I put it on when i get home and this huge difficult boil has been draining nonstop for 2 days. Its about half the size. It just may be working. This boil has been there about 9 months. I also bought a handheld laser from sephora. Laser hair removal laser. I have been zapping my inner thighs and underarms for a few weeks. It didn't touch the huge boil, but it did make the smaller boils go away the next day or so and has lighten the scars significantly in just a few weeks. The blackheads are still there, dozens of them, but they are small and I can pretty much dig them out on my own. I will repost later on the neem oil. But Iknow that is what is finally allowing this 9 month boil to drain. As big as it is it has never burst on its own. I stink like neem, but excited that something may work.
  • javanut74
    javanut74 Posts: 2
    Options
    get laser hair removal if possible. I just bought the laser hair removal laser from sephora and if I zap the new boils they go away quickly. Also helps with the discoloration. Sephora has 90 day return policy if dissatified.

Categories