A Journey to Diagnosis
Sharing one’s chronic illness story is an act of both bravery and compassion, and doing so can inspire and empower others on their journey. In this blog we hear from a member of our international QENDO community, Rachel, USA. Rachel shares her journey from adolescence to a diagnosis with endometriosis in her twenties and finding an endometriosis surgeon who was able to give her the care she needed. She hopes sharing her story will help others and is thankful for the online community of other endometriosis sufferers she has found.
My pain began at age 13 when I experienced my first period. I immediately knew something was wrong. One moment I was dancing around my living room with my friend and the next I was crouched over on the sofa in agony. I had heard of cramps before through friends and media, but the word ‘cramps’ didn’t come close to describing the pain I was feeling. Panic took over as I imagined having to endure this pain for the rest of my menstruating years.
I voiced my concern to medical practitioners and was told that what I was experiencing was a “bad period” and normal for a girl my age. Ultrasounds didn’t show anything out of the ordinary and I was prescribed a hormonal contraceptive. I watched as my first ever gynecologist added “PMS” to my medical records. When you’re 13 and doctors are consistently telling you that your experience is normal, an experience you have never dealt with before, you begin to believe them.
The debilitating pain continued on for 14 years and significantly shaped my life. I tried various hormonal birth control pills over the years to try to diminish the symptoms, none of which agreed with my body. Marks on my belly are a reminder of the countless times I’ve had heating pads plastered to my skin, trying to get the pain to subside. Even when I did not have my period, I exhibited an array of other symptoms that were omnipresent throughout my body, such as food sensitivities, fatigue, and digestive pain. I’ve missed out on travel, school, work, life experiences, and quality time with friends and loved ones.
When I first heard the word “Endometriosis” in my early twenties via social media, I couldn’t fathom the pain people with Endometriosis feel. Because my pain was considered to be normal by doctors, the possibility that I could have Endometriosis didn’t occur to me. In 2018, feeling completely exhausted and defeated by the constant battle waged in my body, I once again presented my symptoms to a gynecologist. She mentioned the word “Endometriosis” and that its only treatment is hormonal birth control.
Immediately, I took it upon myself to research Endo and found a multitude of support groups on social media with thousands of people echoing back similar stories. I scheduled to meet with a trusted Endometriosis specialist and in June of 2020, nearing my 27th birthday, I underwent laparoscopic excision surgery. Upon awakening, I cried when the surgeon told me, “We found Endo, lots of it.” Endo was removed from my bladder, ribcage, rectum, pelvic walls, and my ovary was adhered to my back pelvic wall.
Although I’ve endured Endometriosis symptoms for nearly a decade and a half, my Endo journey feels like it’s only just beginning. I finally have a name for my experience and it is anything but “normal.” I’ve gained an amazing community to share stories, support, and resources with. For years I felt as though I was in the dark as to the root cause of my pain. I could have greatly benefitted from someone sharing their Endometriosis story with me, and I thank Qendo for providing me with the opportunity to share my story with others.
(NAME HAS BEEN CHANGED FOR PRIVACY REASONS)
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