My name is Pooja Parikh, and I’m a 32-year-old living with my parents in Edmond, Oklahoma. I’m a recipe developer, and I use my Instagram page to share my health challenges and dishes with anyone who wants to eat healthfully.
Twelve years ago, during my sophomore year of college, I woke up in intense pain and noticed a red, swollen area on my sternum that looked like a bump. I went to my campus health center and was told it was a bacterial infection. I was given antibiotics and, for a short time, the redness went away. But before long, it came back and I had to start taking antibiotics again. This happened multiple times, so eventually, my doctor sent me to a surgeon to drain the bumps. But this was only a temporary fix. The bumps kept returning, and I wound up needing to get them drained multiple times, which was both mentally exhausting and physically painful—especially when the procedure didn’t go well.
The entire situation was overwhelming and I knew deep in my gut something else was going on. I couldn’t stop wondering what it might be.
Two years later, I was still dealing with the same issues when family members who live in India suggested my parents and I go there to seek treatment. They had connections with a few doctors who they thought might be able to help. So, in November of 2010, I booked a flight to Mumbai, and over the course of eight days, I met with nine doctors. While I can’t remember the details of all the appointments anymore, I do recall each physician offered me a wildly different diagnosis and treatment plan.
“It took two years to get a diagnosis, but I finally had one.”
Finally, I met with a plastic surgeon.I’ll never forget that day because he told me he was 100 percent sure I had hidradenitis suppurativa (HS), an auto-inflammatory disease that causes painful lumps to form under the skin. At first, I was skeptical, but I did some online research and it was like I was reading my own health history. I felt seen. It took two years to get a diagnosis, but I finally had one.
Looking For A Treatment
There was no treatment plan in place when we got back home. At the time, no one seemed to know much about HS and things were getting worse: The bumps had spread along my underarms and my breasts and had begun showing up in my groin.
When left untreated, HS lesions can lead to secondary infections. And by the end of 2011, my HS had progressed so much that I was at risk of sepsis, a potentially life-threatening condition that occurs when the body has an overwhelming immune response to an infection, triggering widespread inflammation which can lead to blood clots and leaky blood vessels. Over time, if untreated, it can cause tissue and organ damage.
“Most doctors don’t understand how incredibly painful HS is. If you don’t advocate for yourself, no one else will.”
At this point, I had a doctor helping me manage my HS near my home in Oklahoma, but I didn’t have health insurance. Given the experimental nature of the surgeries I needed, along with the hospital stays and rehabilitation, my doctor thought going to India would be better for me both financially and medically. So, I went back to see my plastic surgeon in Mumbai for multiple surgeries to excise the large amounts of tissue across my breasts, underarms, legs, and groin that had been damaged by the disease.
Something interesting happened while I was abroad for these surgeries. My surgeon suggested that diet might play a role in how I was feeling. So, I started doing research and did an elimination diet to find out if I had any food triggers. Through trial and error, I discovered that nightshade vegetables, including tomatoes, potatoes, eggplant, and peppers, caused my HS to worsen. So, I totally stopped eating them, which has drastically reduced the number of lesions I get. But being extra-careful is key! Even a sprinkle of paprika (which is made from peppers) is enough to bring about another lesion.
The silver lining was that this experience helped me find my passion. I realized how much I love cooking. So much so that I worked as a chef at a local health food restaurant for a time, but am now working from home as a writer and recipe developer because my flares haven’t totally gone away.
In recent years, I’ve experienced a greater number of flares and find myself needing surgery at least once a year, if not more. Thankfully, I’m able to have these less complex procedures near my home in Oklahoma.I wish I could say I feel like my HS is fully under control and I have faith that I’ll be able to find a more manageable rhythm with the disease, but lately it feels like HS has been in the driver’s seat.
It’s important for me to speak up about this because there’s a lot of misunderstanding about HS. People think it’s acne on your body or the same as an abscess. It’s not. It’s an abscess times 50. When an HS lesion gets particularly inflamed, the pocket opens up and forms an open sore. It can be as small as the tip of a needle, or much larger. It’s a thousand times more painful than a cut or scrape because the wound goes so much deeper.
I want women with HS to know that their bodies are beautiful.
I want women with HS to know that their bodies are beautiful and they shouldn’t avoid treatment because they’re ashamed. At the same time, I’ve learned that most doctors don’t understand how incredibly painful HS is. It took a while for me to assemble a team that I feel comfortable with. I have one doctor in Oklahoma and see another doctor in Boston who is a leading expert on HS. Don’t be afraid to advocate for yourself to get the care you need. If you don’t do it, no one else will.
My biggest message: Find people in your circle who believe you, who believe you when you tell them how much pain you’re in, and hold them close.
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