Its very painful both ways.. physically but also mentally. You get constant angry boils and flares and they pop unexpectly and my clothes has ruined many times. There are times that you dont want to be expose to others from staining your clothes in public. When one place heals, another part of body spreads. I have met some doctors that have said it can come from family generic but i have no family members that has hidradenitis suppurativa (HS). I wake up from 3-5times a night and i got diagnosed with insomnia because of the pain waking you up. Currently i am on remicade infusions.

Painful the worst pain you can imagine sometime it feel like knifes or a sharp pain and Debilitating pain. Alone that is the itchiness as will an itchy you can’t Scratch. Hope that help you.

Every time I get a flare, and then have surgical treatment, I go through horrendous anxiety in addition to the physical discomfort of the flare...And even waiting for a surgical incision biopsy to heal, especially if the area isn't small involves tremendous anxiety for me...and I have to see the dermatologist periodically for debriding, to make sure the healing occurs properly...ive had a lot of psychotherapy, in addition to buddhist meditation training.....so I have to monitor my self talk.....ill find myself saying this is horrible and terrible...etc...and I just mentally note anxiety and return to focus on my breathing...im starting with a new DBT based therapist on Thursday(Aug26) and look forward to learning more about those techniques for dealing with the emotional fallout of a flare. The incisional biopsy I just had in my groin is 1/2 inch in diameter, which for me is the largest one I have dealt with in 15 years of HS illness...Most of my other lesions where in areas not so visible....and so im starting to feel that sense of shame associated with a disfigured body..but given everything I have heard from others here...I have to be grateful that my case isn't worse...my Dermatologist says my case is mild...Hurly stage-I...but from my writing you can see that all levels of this disease cause terrible mental anguish..and we have to work at staying resilient, and positive, and not giving in to negativity.

Thanks for your response Michelle....I'm finding great emotional relief from using this group as an opportunity for journaling..I have been in other support groups....Chronic pain and Recovery related. I went through a spiritual crisis in my early 30s....I was born jewish, but became buddhist during that crisis...One buddhist point of view I find helpful is the following: Absolutely nothing is mine, neither my body, nor my mind....I belong to nature or the cosmos..When I experience some loss, I try to realize that whatever is lost was never mine to hold on to. I look back at my pictures when I was 24, and realize I can never look like that again. I try to be grateful for all the blessings I have enjoyed in my life...I've been married twice to special women, I had wonderful educational opportunities, I did interesting work, although many of my jobs were not a success....but all of my jobs were meaningful. Im close to 69....and looking back, I see that nothing in life is wasted...we can learn from everything....even HS. In the case of HS, the lesson for me is again that nothing is mine....for the sake of my wife and friends, I can't afford to drown in negativity....I need to transcend it through spiritual practice, psychotherapy, and through mediums like this support group.

I’ve had a million surgeries on the worst parts of your body imaginable. You name it, I’ve had it. Two skin graphs, vagina lips, buttocks, under arms, thighs, both breast, shall I go on. They still return, and let’s not mention the foul smell or it rupturing and sticking on your clothes, ugh. This shit literally has me addicted to pain meds cause that’s all the doctors prescribe cause of the pain. I have no suggestions only because I’ve tried it all and nothing works but currently I bath with hibiclens and take percs for pain. My skin always feels dirty so I have to shower several times a day, nothing works in my opinion it just soothes the pain for a hour or so. I’ve had HS since 11yrs old I’m now 32 and mine comes from my deadbeat sperm donor who has 7 kids that he does not take care of but we all got lucky with HS from his ass. Sorry to sound vague but I’m over it. I read you alls comments or post and it’s literally as if I was telling my own story. I never new so many ppl had this condition it’s crazy!