The battle for my skin – Coleen’s Hidradenitis Suppurativa Patient Story

When I was about fifteen. I noticed I had a tiny open spot in my right armpit. I was so scared that I showed my mom. A few days later she took me to the doctor. They said it was acne inversa and that it would go away. It went away as they said and I didn’t think of it again.

Then, in September 2012 I had a pea sized lump in my right armpit and smaller ones in the left. It was at a birthday party that the pea sized one exploded. I was so scared. I asked my sister to help me bandage it. At the end of the month it didn’t get better so I went to the hospital. They said I was eating too much greasy food and that I had poor hygiene. Took their diagnosis and thought it over.

I did a web search of my symptoms and came across Hidradenitis Suppurativa (HS). It fit!

I also saw that it was called acne inversa and thought back to all those years ago. I was twenty-five and scared. When I went to my doctor he confirmed HS and then told me I needed surgery! He referred me to a general surgery. At my first appointment with the general surgeon.

On July 19, 2013 I had my first surgery to remove HS from in my armpits. The surgery went well and I seemed to be on the road to recovery. Only, I wasn’t. While my left armpit healed, my right had yet to.

I went to to the dermatologist in 2014 who gave me Kenalog injections into my armpit as while as the other HS spots I had. These shots, along with other medicine, worked for about seven months. Then, after receiving one of these Kenalog injections into an HS bump on my side, I devolved a dent in my side. This turned out to be atrophy caused by the Kenalog injection I had received.

This meant I was back to square one will my HS treatment. I have creams I received from the dermatologist to help with HS. These are also used to treat acne, which is what HS looks like.

But do not, please do not, think that HS is acne. While it may look like acne, HS is far worse. There is no treatment for HS. There is no cure for HS. Most doctors don’t know what HS is. Patients are ashamed to tell their doctor about their HS spots.

For me, I didn’t tell my doctor about HS spots I got because I was ashamed.

What makes having HS worst for me is I also have Psoriasis and Psoriatic Arthritis. With these two added to HS, everyday is hard. I never know when I will have an HS flare. And then when I get a flare, its the worry about how big the flare will get and then when will it pop. After the flare pops, its the worry about the smell, making sure the bandage is in place. Making sure my psoriasis is covered so it doesn’t bleed or flake.

By this time, I don’t want to leave the house. I began to worry about what other people will think, that they will see the flare, smell me.

One thing I hope for everyday is awareness for Hidradenitis Suppurativa. With awareness will come treatment. With awareness there may even come a cure for Hidradenitis Suppurativa.

  1. Shavaughn Ulven 2 years ago

    Wow, thank you so much for sharing your story with us. when you said “This meant I was back to square one” I could totally relate. HS has such a way of making you feel defeated. We are here for you, if you need anything, don’t hesitate.

    • Michaela 2 years ago

      Thank you for sharing your story. Can totally relate about the HS. It’s like HS snakes and ladders but not fun. We always here for you.

      Hate that others have HS too, what the HS puts them and their loved ones through. But at the same time it helps us all so much to not know that there are others with HS that we can talk too and not to be alone. Us here on the online HS community, thankfully, have each other. Our HS community is a precious life line to each and every one of us.

      I worry for those that are not here with us and are still alone.

      Those diagnoised with HS, that do not know they have HS or even worse know they have HS but can’t get diagnosis.

      I also worry for the families that keep getting these nasty boils, have no clue it is HS and have yet to be diagnosied. Then there are the ones who have a diagnosis of HS but know no one else with HS.

      I hope that we help raise awareness of HS with the general public because this way those HSer’s out there alone will learn that there are others with HS and they are most certainly not alone. That we are here waiting to welcome them and help them in any way we can.

      There are many people that we meet here on our online HS community that know they have HS but cannot get a diagnosis and it helps them so much that there are many of us with HS that they can come talk too. We are their lifeline, somewhere they can come to when in need of a friend.

      We can’t diagnose them with HS, but we can help support them and be a friend when they are in need. We can help provide factual information about HS (misinformation about HS is rife), try to help answer any questions that they may have.

      Each story that we read that someone had shared about HS, we each read and it helps us and it also gives people a idea of what living with HS is really like. Together we are helping raise awareness of HS.

      Thank you to each and every one of you that decided to be a face and voice about HS and shared about your HS. You helped be part of the change that we each hope to see happen.

      Much love my HSer’s 💜

  2. Sandi Wyman 2 years ago

    ♥ ♥

  3. Beth Kindred 2 years ago

    I’m 55 years old and have been dealing with this horrible disease since my late teens. It seemed to go into remission during my child bearing years(thank goodness), but it never has completely stopped. I’m so thankful that I found this site, so, we can share our stories and hopefully bring awareness to this little known condition. Love to all. Stay strong!!

  4. MARY L GROSSMAN 2 years ago

    Hi Beth, I am new here and it started for me around 14. I am now 58. I have had it on my ear lobes face groin inside of legs buttocks now breasts. My boyfriend has it bad under his armpits total tunneling. My Dr. who specializing in this told me it will burn it self out by 60. He does not have a active patient who is over 60 it has stopped for all them. Two years to go and I should be done it sure has slowed down.

  5. Marna Parker 10 months ago

    Hi Colleen. I have PA and PsA too. So miserable! Both of them, then having to deal with all is just too much some days! Tired of being my own nurse. The PsA pain is unbearable, and I also have RA! Can you believe it!?! Wondering what I did in a past life to deserve all this! Lol! Have you tried a biologic yet? Zeljanz wax a miracle for me for my HS, and helped a little with RA pain. Unfortunately I just had to stop taking because I have to have a hip replacement asap. Avascular necrosis from prednisone use! No ball of femur left. Waiting to have aspiration by CT scan to see if infection. Ugn!

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