My HS Story (Part 2)
In case you missed it, read Part 1 of Jasmine's HS Story. I am a privileged patient. I've had access to great healthcare all of my life. This access was especially a blessing once I found out I had Hidradenitis Suppurativa (HS). It renewed my hope in beating HS because I initially thought I would suffer my whole life. The one thing I think all of us can agree on is that we need hope in this journey.
Exploring different treatment options
After becoming a patient at the HS Clinic at Henry Ford Hospital, I got the opportunity to be a part of several clinical trials. A clinical trial is basically a market test to see the efficacy of a drug or procedure. In my first clinical trial, I took Rifampin and Clindamycin twice a day for a few months on and off. At the time I believe HS was thought to be a bacterial infection. The antibiotics were to prevent infection and lower inflammation to allow my body to heal. Unfortunately, the antibiotics did not work for me. But they were good for turning my urine orange and making my mouth taste like I've been sucking on nickles all day.
When this didn't work, we decided to try another approach. Essentially, vaseline was applied to my skin, and then they used a YAG laser to zap the open wounds and scar tissue to help them heal and lower inflammation. This felt like literal torture to me because some of the places targeted were very sensitive areas on my body. I'm not sure if this actually helped in the long run. It was honestly just painful. The procedure was done at least once a month. I was blessed to work with a caring and attentive team which made the process easier. However, like any medical experience, you do meet people who make your already difficult diagnosis, that much harder.
People who make a hard situation, even harder
I remember specifically in 2018, I got a debilitating boil and eventually had to go to a doctor outside of the HS clinic to get it lanced. After the excruciating lancing, the nurse provided me with instructions on how to take care of the wound. Because of where the wound was, she recommended I take a cap full of bleach and dump it in a sitz bath full of water. I didn't feel comfortable with submerging my intimate parts in bleach-filled water especially when there are studies that show bleach can cause cancer. I then asked for an alternative because I was uncomfortable with that option.
Instead of working with me to find a better solution, she proceeded to tell me there was no other way and if I didn't do what I was told then I would go through this again. First, what a horrible thing to say to someone who just literally bled out in front of you. Two, why wouldn't a medical professional do everything they can to make a patient feel comfortable with the treatment they have to do on their own? I've never been the type of person to engage in something that makes me uncomfortable. So, why start here?
The doctor who performed the lancing came out and asked me what my concerns were. She was everything the nurse was not - attentive, willing to work with me, and caring. She told me to clean the area with Hibiclens instead. Hibiclens is a soap that helps to fight infection. The boil did come back much smaller, but that wasn't because I didn't submerge my body in bleach water. It is due to a chronic illness I cannot control.
Check back for Part 3, where I'm going to spotlight my CO2 laser surgery experience and how it's changed my experience with HS.
Have you shared your HS story?