Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal.

0 Online
  • LelaWms

    HS.... Finally, I found what is working for me!

    2
    I am typically not the person that joins support groups but I feel that I must share this with the HS community. I have been living with HS for 6 years and went through surgery in 2016 to find that it really wasn't worth it. In April of this year I had a break out again and refuse to have the surgery again. I stumbled upon the receipe for the Master Tonic. After reading that it cures infections...
  • Mel88

    14 years with HS

    2
    Hi all im new to this group, I've been dealing with HS for now 14years i am now 29 years old and only just found a Doctor who knows what HS is everyone else had told me they where cysts and that they have to be cut out all the time, I have had so many cut out, Im also the only one in my family that have it so there is no one to really talk to about HS or even understand what its like and how hard...
  • Karaokequeen84

    Surgery...

    8
    I am new to this group and would like some info from some of your experiences. I have been suffering from hs for years and keep getting passed off by Drs that never help. Finally I was referred to a surgeon and I am so excited but also very scared. I just don't know what to expect. I have a spot on the lip of my vagina that is hard but has several small holes that are draining and the holes go...
  • SASS-A-FRASS

    Fatigue And General Malaise

    2
    Hello All, I have been dealing with hidradenitis for many, many years and I have noticed prior to a flare up/outbreak I start experiencing extreme fatigue and malaise where I just generally don't feel well...I just feel ill and then within a few hours to a few days boils/cysts develop. Does anyone else experience these symptoms prior to a flare up, and if so have you found anything to lessen...
  • RachaelLouise

    Doctors Appointment

    3
    I've been to the doctors twice for HS and I'm going again in a few weeks. The first time the doctor didn't mention HS but said she didn't think it could be cured ( I think she knew it was HS but just didn't mention the name). She gave me some antibiotics and a wash.Second doctor completely ignored me. She just looked at my groin, wasn't interested when I said they start off under my skin or that...
  • ZotzALotz

    ZOTZ! What are your HS nicknames??

    0
    What is your code name for HS??Hey everyone, my name is Alex and I'm new here and over the last almost 20 years with HS I've cried, gotten really mad, and plenty of feelings in between related to dealing with the helplessness of living with HS on my lady-junk. So I want to bring some irreverence to this forum. We need to be able to laugh about this, right? So therefore I ask you: what was your...
  • piscesgal

    staying fresh

    2
    my one and only question is how my HS sufferers manage to smell good after a long day.. i cannot find anything thatll make me smell good longer than 3 hours.. ive tried so many deoderants, but i need something that wont clog my pores too much. this is interfering with having a job and basically anything that involves being around others for a long period of time. pls reply guys, feeling hopeless.
  • Roxyt

    Starting point.

    0
    Hi I'm new to this and I'm not sure wer to start. Last week I seen the dermatologist and she confirmed I have H.S. I have suffered for a long time with this and have a lot of scaring in the groin area. Could anyone point me in the right direction of how to manage them. I only get them right before a period and they also stopped right through my 2 pregnancies which makes me think it'ssomething to...
  • Robphil2

    New here

    0
    I feel bad for everyone dealing with HS. It's an awful condition. I'm going on 4 years of severe boils, underarm groin and buttocks.  The first year I couldn't get of bed. It took months to get a diagnosis. I finally saw Dr. Schienfield in NYC. He helped alot his bed side manners are questionable but he got me in the right direction.  I've tried everything, diet, herbs, antibiotics. The only...
  • TinaMarie84

    Turmeric Curcumin stopped working for me...

    2
    Hello to All,My name is Tina and I’ve been with this group for a couple months now. I wanted to talk about Turmeric Curcumin “Spring Valley” 500 mg. I came across a post on here and EVERYONE mentioned that Turmeric helped soooo much with the inflammation so I acted fast and went and bought me a bottle. I started taking it on 6/19/2017 one in the morning and one at night for a total of 1000...
  • Kayla432

    I want this to stop

    4
    I wake up every morning  and I'm a in pain I have them all under my breast between  my legs under my arm and they hurt so much I'm only 18 years old and it's hard for me  I'm scared that I will never be able to be  intimate with someone   do these ever go away ? What's the best way of making  them go away or hurt less? I just want to be normal
  • yellowstripe

    Has anyone had laser treatments?

    6
    I read some medical studies done around 2009 that looked promising for treatment of HS. They were successfully treating HS with long pulse 1064 mm Nd:YAG laser and possibly a CO2 laser for deroofing in follow up. Has anyone here ever heard of this? Does anyone's dermatologist even offer such a thing? What about health insurance?
  • BDW

    I need Advice and tips thank you

    2
    Hi I'm new to this website and I have HS for about 4 years or so and ever since I have had HS I have been wearing long sleeved tops as well as short sleeved tops to cover my HSthis year I'm am determined to just wear tank tops or tops that will show the scarring and lumps underneath my arms, and was wondering if anyone has any tips and advice on how to make sure I don't get anymore flair...
  • dgkallday0537

    Help with pain killers with HS

    2
    Hi I'm new to this group, I have gotten a years supply of antibiotics for HS forgot the name I have to pick them up at the pharmacy in a bit here. I only get 10-22 50 mg tramadol every time I go to the surgical clinic here they barely kill the pain , and they expect those tramadol to last until I get to go back to the surgical clinic the next month I want to ask for something stronger and at...
  • menaa

    I m using Humera nowadays for my HS

    2
    hey peeps, i m always absolutely grateful to find any support groups for HS, as we are not alot in the world and it sucks as you all know, i ve had my HS under my armpits for 4 years now. I used every every antibiotic possible and topical creams but it worked for a while then stopped and an outbreak occurs. My last time was so hurtful and i was totally under stress like hell, so my doctor...