My Hidradenitis Suppurativa (HS) Story, hmm.. where do I start? – Amber’s Hidradenitis Suppurativa Patient Story

 


My Hidradenitis Suppurativa (HS) story, hmm.. where do I start?

I’ll start by introducing myself. My name is Amber and I live in Summerville, South Carolina. I’m twenty-six years old and I’ve lived here my whole life. Before being diagnosed I had never heard of Hidradenitis Suppurativa (HS) nor had I ever seen it or had any clue what it was. I believe my HS started when I was around 16 or 17 years old. I don’t really recall when exactly it started as I didn’t seek treatment or get diagnosed until I was in my 20’s. I was embarrassed and thought I was doing something wrong, that it would go away eventually or somehow I could treat it myself. My HS started in my groin area on both sides. I was constantly itching and scratching until I bled, draining this awful smelling yellowish liquid that I had no clue how to stop, always washing and cleaning and stuffing toilet paper in these areas, doing the best I could to keep it under control. It was ruining my undergarments, but what could I do besides keep washing and re-wearing them?

I was working the night shift at my local Wal-Mart with my mom, it began to worsen and eventually spreading to both my armpits, this is when I sought treatment.

I remember one night I had a cyst burst under my arm, coating myself and my work shirt in what I can only describe as wet hot goo. It was early morning and I didn’t want to go home and lose pay, so I got with my mom who informed the manager, we decided to buy a new shirt and some supplies and I’d just clean up and bandage myself so I could work the rest of my shift. So I went with my Mom to the family bathroom that is normally locked at night, it was unlocked just for me to have privacy with my Mom who helped clean and bandage me up. I’m getting a little ahead of myself here so let me back up a bit. When it started getting worse I sought treatment from my primary care doctor, the doctor put me on antibiotics which obviously didn’t work in the long run. I had previously developed cysts on my back, chest and buttocks area and started having groin problems, but I didn’t connect them with H.S until after I was diagnosed.

When I couldn’t take the pain and nastiness anymore I shared with my mom what was going on and scheduled an immediate appointment with a gynecologist at her recommendation. The gynecologist decided it was not their specialty and they sent me to a general surgeon. The general surgeon couldn’t help me so I was sent to a plastic surgeon. I got no satisfaction from the first plastic surgeon so I sought out the second one. He took a look at me and immediately recognized what was going on and said he could most definitely help me and he gave me my H.S diagnosis. Now, I have been with him for the last three and a half years (Palmetto Plastic Surgery Dr. Rodney Young) and I have been through five to six surgeries, consisting of two under each armpit, one on my chest, one on my right side under a skin fold and one on my left groin area.

Since the armpit surgeries, I’ve had no recurring problems in my armpits, right side or left groin area. I was on two wound vacs during that time, three actually, because when I first saw my surgeon he recommended I have a breast reduction so that when I had my first armpit surgery for H.S the weight of my chest wouldn’t pull on my incisions after surgery. That surgery was going great until after removing a few stitches, then my breast split open wide enough to fit your fist in. (Cue first wound vac and first complication after surgery). The other two vac’s, one on my left armpit and one on my right were to aid in my healing, I do not heal quickly and tend to have complications after surgery while trying to heal, my incisions become infected and reopen all the way along the suture line, leaving a gaping draining mess.

I just recently got on disability and Medicare with the help of a lawyer due to this condition. I have been out of work for almost four years because of it (I was medically terminated due to all the time I was missing from work for surgery and recovery). I am continuing to see my surgeon as I need surgery on my right groin area currently.

I do not know where I would be today if I hadn’t confided in my mom and sought help and treatment.

A big lifesaver for me are the groups, I have found these through a Social Media network known as Facebook. When I received my diagnosis and started doing research my spirit was crushed. I felt like my life was over and I was so alone. I just wanted to give up on everything and everyone. I believe it was my mom who suggested I try and find a support group. So I found one on my Facebook and it changed my life. I no longer feel isolated and alone, like I can’t go on with my life. I feel like I am loved, supported and understood by so many who are going through or have been through the same things. I am now a member of a few of these groups through Facebook, and I guess I feel freer. I am learning so much, it makes me feel so good when I can share my experiences with others, I also learn from their experiences as well as offer help from my experience. So that’s my story. Thanks for taking the time to read. I hope I can be of some help or inspiration to others fighting this awful battle.

Here’s to hoping one day a cure is found so no more people have to suffer or think they have to suffer in silence.

1 Comment
  1. Lacie Waldron 4 weeks ago

    Hi Amber!
    Boy, do I feel your pain. Literally. I’ve suffered with this for years. I just turned 43. I was just diagnosed with this yesterday. And opted for the surgery. Right armpit. And I’m terrified. YouTube has scarred me for life lol. Mine started in my groin area. The last few years is when the armpit started its little war on my body. I’m curious about the recovery time, and scarring, how they wrap your wound after surgery. What can I expect as far as pain, as you know this is in a very odd place to have such an big surgery, with stitches and what not. Are there drain tubes? Do they give you any type of support to keep your arm lifted a bit. Gosh, so many questions. I currently have two packed holes in my underarm from yesterday. I’ve had my boobs reduced, years ago, that, pain wise was not bad at all. My kids helped a lot with reaching for things. But back to this little surgery… I too don’t heal well… So I’m concerned about that. They said advil/Tylenol would be be enough for the pain? I find that hard to believe. But I’m guessing the end result will be like heaven compared to the pain from the flare upside of the Cysts, or whatever these things are lol. Anyhoo, of ya get a chance I’d really like to hear back from you.
    Best wishes 💜
    Lacie.

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