It Took My Doctors 6 Years To Diagnose My Debilitating, Embarrassing Skin Condition

From Women's Health

My name is Alekxia Alanis, and I am 26 years old. I live in Roma, Texas, and I am a recent electrical engineering graduate.

During the summer of 2012, I noticed my hip and right butt cheek had four giant pimples with dark dots that resembled blackheads. They were extremely painful, tender, and warm to the touch. When I spoke to my parents about it, they brushed it off, saying it was only a “tacote,” a term used in my Hispanic culture to describe a giant boil. (A boil is a painful hair follicle infection.) But I asked them to take me to the doctor because I couldn't handle the excruciating pain.

The first doctor I went to diagnosed me with shingles, a viral infection that causes a painful rash. But my parents insisted on a second opinion. The second doctor who saw me said it was just four giant boils and that I had to basically wait it out for them to pop on their own.

A year later, in November 2013, my husband and I were both attending Texas State University when I noticed these “boils” between my legs. I had never gotten any in the groin area. At first, I thought it was an STD, but I had recently gotten tested and knew I was negative. They kept getting worse and worse, and as a student, I couldn’t afford to go to the doctor. (I wasn’t aware at the time that I could seek treatment at the student health center on campus.)

Struggling to find a diagnosis

I dropped out of college because my legs were in such constant agony that I couldn’t attend class. The years of pain, physically and emotionally, started to take its toll. I slowly became depressed and came down with extreme social anxiety. When the lumps finally popped, a foul-smelling puss would drip out, and all I could think about was if I could smell it, surely everyone around me could, too. So, I became a hermit. I stayed in and stopped socializing. I wasn’t ‘me’ any longer.

After another painful outbreak on the top of my butt crack in February 2017, I approached my parents. They traveled with me to Miguel Aleman, a Mexican city close to the Texas border, to get the help I needed but couldn’t afford in the States. This third doctor gave me quite a different diagnosis: pilonidal cysts, which he explained were sacs filled with bits of hair and skin that form at the top of the butt crack. He prescribed me antibiotics and topical creams. With a diagnosis and medication in hand, I thought I would finally put an end to the pain.

Finally getting properly diagnosed

The meds helped a bit, but in May 2018, I got another “pilonidal cyst.” This time, however, it was on my right armpit. This time, I was able to go see a doctor at my student healthcare clinic, who said I had a severe case of hidradenitis suppurativa (HS), an autoimmune disease that causes chronic skin lesions due to inflammation. Finally, this disease had a name. I thought for sure I was going to get help. But unfortunately, the doctor had never seen a case in real life.

The clinic gave me a sheet of paper that explained what HS was, and proceeded to say, “You’re obese! You need to lose weight so it can go away!” They never mentioned that it was an autoimmune disease or how I could manage it. So on September 14, 2018, I decided to get adjustable gastric band surgery. It’s been two years since the operation, and I’m about 100 pounds lighter, but I still suffer from HS. (I was 224 pounds when I had the surgery and weigh 114 now.) I’m here to tell you that it was never about just losing weight to get better.

Treating my HS

The doctors neglected to tell me that HS is an incurable disease and that I needed to change my lifestyle if I wanted to keep it under control. I even sought out a dermatologist for help who was equally unhelpful. On my own, I researched on the internet day and night. Through trial and error, I identified the foods that triggered my flare-ups the most, including dairy, soy, alcohol, carbs, sugar, and certain nightshades like tomatoes and bell peppers. By tracking my flare-ups, I realized that stress was a trigger for my HS, so I also started managing my stress by doing yoga in the mornings.

I still suffer from HS flare-ups and have a lot of discomfort on my armpits where they generally happen, but luckily my inner thighs aren’t suffering as much. The next step I have to take to continue my “healing” journey is to get surgery on my HS lesions to remove all the growths and extra skin in order to avoid any others from coming back. While there is no guarantee that HS won’t come back post-surgery, it offers me a bit of hope.

My biggest advice to anyone suffering from HS is to not be afraid to speak up. I know it’s scary. I know how embarrassing it can be. But you didn’t choose this, and it’s not your fault. This is your body going haywire and attacking itself. When you open up about it, it will help set you free. You can stop living in silence and get the help you deserve. If you believe you have HS, set up an appointment with a dermatologist as soon as you can. There is help, and there is hope. I aspire to do all that I can to spread awareness about this autoimmune disease and to help others embrace their scars.

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