Apr 1, 2021
Don’t Mind Me, Just Over Here Casually Chatting About My Ovaries
I’m pretty sure I’ve talked more about my ovaries in the last year than the previous three decades of my life combined. And unfortunately, no, it has not sprung from some newfound desire to truly be in touch with my inner femininity (oh how I wish it were the case!), but rather, after years of being misdiagnosed, mistreated, and gaslit, I was finally found to have stage 4 endometriosis. According to Endometriosis UK, the average length of time it takes someone to be diagnosed is 7.5 years. Seven and a half years — can you imagine if other major chronic illnesses had that kind of average diagnosis time? Here’s the kicker: it is estimated that 10% of all people with female reproductive organs have endometriosis.
Endometriosis is a disease where a tissue that is similar to, albeit holistically different from, the endometrium that lines your uterus grows outside the uterus, resulting in lesions, blood filled cysts known as endometriomas, and adhesions. If left untreated long enough, these growths can literally fuse your internal organs together. According to the Mayo Clinic, in addition to debilitating pelvic pain that is often even worse during periods, bowel movements, urination, and sex, it also causes bloating, nausea, fatigue, diarrhea, constipation, excessive bleeding, and infertility. It has also been linked to sciatica — if found on or near the sciatic nerve, and more rarely, breathing or shoulder pain in the case of diaphragmatic endometriosis. And sometimes treating it results in organ loss such as an oophorectomy, hysterectomy, appendectomy, or even partial bowel removal. In my particular case, it was finally discovered that I had what was described as multiple tangerine-sized endometriomas that were growing on my ovaries and needed to be removed as soon as possible to help alleviate my chronic debilitating pain and give me a chance at preserving my fertility.
So why bring this up now? Well, March is Endometriosis Awareness month and, in keeping with my exuberance over the last year to chat with anyone who will listen about my ovaries, I am here to shout the following from the rooftops: DEBILITATING PELVIC PAIN IS NOT NORMAL. Very often it is the result of an underlying medical condition such as endometriosis, PCOS (polycystic ovarian syndrome), fibroids, etc. But like the vast majority of people with endometriosis, I was continually fed lines like, “It’s just a painful period, there’s nothing you can do”, “It’s just a normal monthly ovarian cyst, there’s nothing you can do,” or perhaps my personal favorite, “Even if it were endometriosis, there’s no point in finding out because there’s nothing you can do”.
Meanwhile, there were times where I literally could not walk. I’d collapse in pain on the sidewalk, suddenly fall to the floor in the kitchen, and sometimes be bed-bound for days writhing and screaming in pain, at which point even walking to the bathroom or kitchen posed a Herculean feat. The NHS even named endometriosis as one of the twenty conditions where pain is so debilitating it can prevent you from performing basic daily tasks. If you have chronic pelvic pain, it is absolutely vital you continue to seek answers until you find a physician you can trust who can get you the resources you need. It doesn’t matter if it’s the third, or the fifth, or the tenth doctor you go to. Your. Pain. Is. Real. And while endometriosis is a chronic illness, there is a diagnosis for your symptoms, pain management options available, and the possibility of expert excision surgery that gives you the best chance at long-term remission from the disease.
You want to know the absolute best resource I’ve found for getting help and answers? Other people with endometriosis. Fellow “Endo Warriors”. Weeks after my large endometriomas were discovered and I learned I needed surgery, I was put in touch with a friend of a friend over text message whom I literally had never met or chatted with before. She coached me on the best online resources, how to prepare for my upcoming surgery, and what to expect afterwards. And then, just like that, two weeks after my own surgery I was put in touch with a different friend of a friend who had her own endometriosis surgery coming up, so I quite literally passed along the information from the woman who helped me, combined with some more information from my experience, in order to help prepare her for her own journey. And such is the beautiful chain that is people with female reproductive organs, helping other people with female reproductive organs.
So, are you looking for a great starting place for peer-reviewed medical journals and a highly vetted list of expert excision specialists? Be sure to check out Nancy’s Nook Endometriosis Education, an endometriosis learning library. Originally a Facebook group and that is now a website as well, it was started by Nancy Petersen, RN, one of the foremost endometriosis advocates of our time who has spent a lifetime dealing with endometriosis on both a professional and personal level. It compiles individual experiences, research articles, and expert opinions, together with information from other endometriosis advocacy groups to amplify patients resulting in a significant body of knowledge accessed by people with female reproductive organs worldwide. If you are looking for answers, please start there.
Unfortunately, only two months after my laparoscopic surgery my endometriosis had already recurred. (Normal recurrence rates after expert excision surgery are usually in the three-to-five-year range.) Like any chronic illness, it’s going to be a long road ahead. But I am finally confident I have doctors who believe my pain, are experts on the disease, and will help me on the journey I have ahead. This all goes to say, normalize chronic illness, normalize talking about your reproductive organs, and normalize getting help. In the meantime, you can find me over in London casually chatting away about my ovaries.
Sources
“Endometriosis”. Mayo Clinic. 27 Feb 2021. <https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656>.
“Endometriosis Facts and Figures”. Endometriosis UK. 27 Feb 2021. <https://endometriosis-uk.org/endometriosis-facts-and-figures>.
“Our Story”. Nancy’s Nook Endometriosis Education. 27 Feb 2021. <https://nancysnookendo.com/about-us/>.
Ritschel, Chelsea. “These Are The Worst Pains Human Can Experience: From Kidney Stones to Cracked Ribs”. Independent. 27 Feb 2021. <https://www.independent.co.uk/life-style/pain-sciatica-appendix-pancreatitis-kidney-b1806782.html>.
