8 painful years of Hidradenitis suppurativa (HS)

It’s really been that long. The first symptoms. Fighting to hide it, feeling embarrassed. Not knowing what was wrong with me. Why me? What did I do? Did I pick this up somewhere? Am I not clean enough? All thoughts I’m sure any young person experiencing HS for the first time would think.

3 years into a relationship and I still can’t take my shirt off around my boyfriend. I’m afraid to be intimate in direct light. He knows now. Only took me 2 1/2 years to talk to him about it. I was just learning what it was at that time myself.  Page after page I scrolled online to try and self-diagnose because I was too nervous to see a doctor about it.

8 years it’s been, with these painful bumps and holes.

Every day is more suffering. No money and no health insurance to try and get even some relief. I had my first pain free 2 weeks in 8 years. And I was on top of the world. I didn’t know it would flare up again so quickly. It broke me. I am so tired of living in pain.

Tired of ruining clothes that I can’t afford to replace. Tired of the depression and insecurities it brings. Does it ever stop? It just feels like it will stretch on forever. I try to push through it and do what I can. The fake smile and enthusiasm to try and act as if I’m normal. As if I’m okay. But I’m not. Most days the pain is unreal. You get used to it after a while. It just becomes a way of life, being in constant pain. Getting a brief break, that’s when it gets hard again because the pain comes back feeling so much more intense than it did before.

8 years of pain, and still counting.

  1. Jojo 2 years ago

    I can relate to you . Its 17 years for me and started after i had my first and only child at 35 yrs old . Because of my placenta being over matured Before it should be which effects food and oxygen of getting to him i had to go 2x a week to hospital to monitor my sons heart beat for an hour at the least and one day the nurse let me go and i was called by the dr to come back that the read converned the dr they admitted me and needed to induce labor with that they totally lost his hesrt beat and flew me to or for emergency c-section. I wound up getting mrsa after my incision was infected and never healed . I had 2 exploratory surgeries and 4 different doctors before finally was sent yo infectious disease dr . Then i started getting the cyst like lumps in groin area and under breast and was diagnosed with HS . He explained what it was and that it is a reoccurring chronic condition and no forseable cure at present . Even though its a dermatology disease the lessions are the infection/infectious part of the disease and for 17 years we kept it at stage 1 although to me as female the scars and lumps have ruined my life as far as an intimate relationship. I was single mom . It was not serious relationship when i got pregnant and single since then . I was 35 when i had my son and 53 yrs old now and dont want to be alone anymore but am so embarrassed and self conscious about it. I have a male best friend that i know for 15 years and we have been in a sexual relationship for 14 years . We have true love for each other as best friends and i make sure its very dark and i have robe or long shirt on when we are together . He says he dont care about scars and i believe that but i do. He doesn’t know to what extent the scars are or my HS . I also tell him i dont feel sexy since i gained weight . Its gross to me and if i think its gross imagine what others Would feel seeing it . I didnt know what it was and When i see pictures of stage 2 and 3 i grt sick to my stomache. This dr taught me how to care for it and we kept it at stage 1 for 17 yrs. so here are a few things i can tell u that might help . Wash with hibaclens over the counter but expensive $10 a small bottle but only use it like twice a week . Also keep sweat glands dry by putting corn starch in a stocking and pat those areas. Also a nurse told me a patient that had it put pads under breast stuck them to her bra or underwear for groin area . Clever since pads and diapers ate made to abdorb wetness. Wear cotten underwear and i wear hi cut panties so its off the direct groin area clothes rubbing sweat glands will aggravate it. Tight clothes all around and wire bras are not helping it too. I always wore wire bra until my dr said not to. It would be great if even one tip i said would make even 5% better for u

  2. thomas savidge 2 years ago

    I was first diagnosed, well mis-diagnosed, in 1988. Back then, they had no clue with what they were dealing. I was 19, and in the US Army. I had just returned from bivouac to find these odd bumps on my scalp. My first thought was that I had been bitten by some creature out in the woods on Fort Hood, TX. From 1989 until 2004, I went through about a dozen different doctors. Each who had there own unique take on whatever it was. In 2004, after it had spread from my scalp, to behind my ears a Dermatologist at the VA Hospital in Boise, Idaho finally nailed it. Of course, when he first said I had Hidradenitis Suppurativa I had no clue as to what he was referring. He explained to me for what seem like forever about this incurable disease that was cause by nothing I had done. As I am sure you’ve experienced, this didn’t make me feel any better. I just wanted it gone. And gone, NOW!!! Over the next four years I fell into severe depression and thoughts of suicide. By 2010, the disease had made its way into my armpits, groin, legs, face, stomach, and buttocks.

    I was awarded 40% disability rating by the VA in 2004. I have lived, as you have for a long time with this disorder. I am now in my late 40’s, and have moved onto acceptance. Mine is now at a stage where the sores, sort of heal. But not completely. They continue to drain, even while at work. I wear LOTS of deodorant, and TONS of body spray to mask the odor while at work. But even that sometimes isn’t enough. Occasionally, a co-worker will confront me and ask if I showered, because they smell something odd. Then I have to go through the entire story again and again.

    The way I live with my disease is this; It’s part of who and what I am now. I have resolved myself to living with it the rest of my life. I can either give in to the depression (no freaking way) or I can enjoy my life to the best of my ability.

    I choose the latter. I choose to be happy in the sight of disparity. I am not going to tell you it is easy, far from it. It’s taken me years to get to this point. Call it the Andy Dufresne school of life; Get busy living, or get busy dying.

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