Where do you go when you feel scared, confused, and lonely after a life-altering diagnosis? For many people, the answer is…online. In WH’s 2021 Owning It series, you’ll meet nine self-starters who used social media and digital tools to seek solutions and community they couldn’t find elsewhere. Barriers, broken.
I always had really awful, painful periods. I would be bedridden from the pain, in the bathroom throwing up. I remember as a young girl telling my primary care doctor, penicillin methotrexate “I have these really bad periods,” and the doctor saying, “Plenty of women have bad periods.”
But in my early 20s, instead of one horrible week of periods each month, the pelvic pain started becoming more and more frequent. I must have seen 10 doctors over two years that all pretty much told me the same thing: that I was too much of a go-getter, and my stress was causing this pain.
I started doing my own research on my symptoms, and I came across the term endometriosis for the first time. Endometriosis is a condition in which endometrial-like tissue grows outside of the uterus. The symptoms sounded like mine. I thought, I’m going to talk directly to other people who have this disease and see what their symptoms are like.
So in June 2014, I made an Instagram page to document the good, the bad, the ugly, the embarrassing stuff. By then, I was fairly positive that I had endometriosis, but at the same time, I had this fear that I was going to wake up from a laparoscopy and be told they couldn’t find it. So I was a little bit concerned about starting the account without a diagnosis, but I made it to connect with other people like myself who were struggling to find answers in the medical community.
I had also started my search for a surgeon who specialized in endometriosis. In August 2014, I finally found one who believed me, and I had laparoscopic excision surgery, during which they found endometriosis and removed it.
I’m not sure that I would have had the strength to go through the surgery if I hadn’t had this Instagram community of people who supported me, if I hadn’t been able to talk to other people who had had the surgery. It was the only surgery I had ever had. Nobody in my family had heard of it, and it seemed pretty invasive. I was young, and I was scared. But I finally found my people on Instagram who could give me recovery tips and hope for the future, and I didn’t feel so alone.
In the time when I was searching for a diagnosis and I was in so much pain all the time, I felt like the biggest burden to my family and my now-husband. I suffered with a lot of really low, sad thoughts, and I didn’t realize that it’s very normal when you have chronic pain to experience depression.
Making the @endostrong page, reading other people’s stories, and direct messaging with other people—having somebody say, “I see you. I believe you. I’m with you.”—really saved my life.
This article appears in the March 2021 issue of Women’s Health. Become a WH Stronger member for a print subscription and more great perks now.
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