I Have Hidradenitis Suppurativa! My story and How to Manage Symptoms 2023

Living with a skin condition can be a real challenge. It's not just about the physical discomfort, but also the emotional toll it can take on you. I know this firsthand, as I have been dealing with Hidradenitis Suppurativa since I was 21.

This is my story:

My journey with skin issues started when I was just 12 years old, around puberty. I had cystic acne and boils/cysts on my skin's surface could be lanced. Things really took a turn for the worse when I woke up one day after my 21st birthday and found that I couldn't lower my left underarm. It was like a baseball had been placed under my skin. This was different from the usual boils I had become accustomed to. There was no head, just a huge hard lump deep under the skin. I sought immediate medical care and had under anesthesia surgery the next day. and doctors removed what they called a cluster of dead skin tissue. They left the site open to heal, and that's when the nightmare began. The surgery site poured out pus and blood in large amounts for over a year. It would begin to heal and look better, then days later start again. Around a year later, my right underarm decided to join the party.

I will be 35 this year, and now I suffer from the disease all over my body. Around 2020 it aggressively started moving to other areas, first the chest, back of the neck, stomach, groin, and inner thighs. I have also had random deep cysts on the back of my ribcage, knee, poloidal (thought this was the end, ouch!), and jaw, just to name a few! Dealt with numerous staph and strep infections.

Living with Hidradenitis Suppurativa is not easy, but it's important to remember that you're not alone. There are millions of people out there dealing with the same condition. It's important to stay positive, stay informed, and stay connected with others who are going through the same thing.

One thing that has helped me is finding a supportive community online. There are many forums and groups where people share their experiences and offer advice and support. It's a great way to connect with others who understand what you're going through and can offer encouragement when you need it most.

Another thing that has helped me is finding a different skincare routine that works for me. I've tried many different products over the years, but I've found that keeping it simple is best. I use gentle cleansers, moisturizers, and sunscreen to protect my skin from further damage.

Living with Hidradenitis Suppurativa is a challenge, but it's also an opportunity to learn more about yourself and what you're capable of. I've learned to be resilient, to stay positive, and to never give up hope. If you're living with this condition, know that you're not alone. There is support out there, and with the right mindset and the right tools, you can overcome any obstacle.

After dealing with this disease silently for 13+ years, I decided it would be good to share some things I have learned. I have tried so many different approaches, prescriptions, herbal remedies, procedures, therapies, products, diets, the list could go on and on. I am not a medical professional by any means, so please only read my information for educational purposes, as a review.

Now, I am going to dive into how I personally deal with this disease, what products I currently use, and the ones I have tried. We will talk about different prescriptions medications and surgeries/procedures.  Let's dive into different herbal and holistic approaches. First off let's talk products!

MedicaI Supplies (Gauze, Tape, Antiseptic Washes)

Wound Cleaning

Bandages & Tape

Band Aid Tru-Absorb Sterile Gauze Sponges I have bounced around to different brands for gauze sponges for general cleaning, but these are really the best!

Medpride Sterile Non-Adherent Pads These are great bargain! They do not stick to wounds!

Dimora Super Absorbent Dressings I just started using these types of dressings. I like that they are super cushioning. I feel like they really help with the pain as well in some areas.

Transparent Dressing Adhesive Bandage Waterproof Bandage I still wonder how long this was for sale on Amazon before I knew it! This stuff is a game-changer for me. You can cut to whatever size you need. Make sure you read the directions and know which way to cut it and how to remove the different layers. I have lost a lot of skin from different tapes over the years, this one does not bother my sensitive skin.

MedVance TM Silicone - Bordered Silicone Adhesive Foam Dressing Sacral Size 7"x 7"  I once had a pilonidal cyst, these were such a life saver! Made life so much easier! I was cutting other gauze and tape to fit and was soo much work.

This blog is still a work in progress, please stay tuned for more information. This blog includes affiliate links, which support my website. Thank you.

Written by Elizabeth R.