Reflections on Another Endometriosis Awareness Month Passed
[Guest blogger] Anusha is an endometriosis warrior, and runs her own blog, https://crampmystyleblog.com/, which chronicles her journey with endometriosis and inflammatory bowel disease (Ulcerative Colitis).
The month of March is such a busy time for us Endometriosis warriors. We prime our friends and family for a whirlwind of posts curated to educate the general population about basic facts on endometriosis. We trickle information out to the masses, and as the month crawls on, our posts slowly morph into political cries for better standards of care: more clinical trials, better treatment options, and easier access to excision surgery (the gold standard) by an expert in the field.
This year with the pandemic shutting its doors on the traditional march for awareness and social gatherings that typically raise awareness and potentially some funding, we have been largely devoting our efforts to social media. That means collaborations across platforms, across cities and across countries. Physicians who have also wanted to speak so frankly to their patients have also jumped on board with conferences, webinars, Q&As and the like. For a moment in time, both patient and medical advocates are working closely together to get the message across that we need to do better.
My name is Anusha Gandhi and I am an endometriosis patient. I suffered for nearly 15 years before I was officially diagnosed - through an ablation surgery - and have since had two additional excision surgeries to remove endometriosis from numerous areas of my body. My endo was also superficial, which meant it was never seen on imaging, and was always treated with a variety of medications.
As an endometriosis warrior, my story is not unlike others; perhaps that’s the point. We all have unique, yet shared experiences. As we all begin to shout a little louder, all of the little specs that each represent a patient’s story come together to show a pixelated image of a person who has been gaslighted for over a decade: doctor after doctor, climbing the rungs of the treatment ladder just to finally obtain a much needed, much anticipated excision surgery. We are all fighting the same injustice.
March is almost over and as we store our instagram posts in a safe folder, and life focuses back on warmer weather and hopes of a normal mask free life, those of us with endometriosis continue to fight the good fight. If I could gather all of my endometriosis warriors in one room and suggest one thing, it would be to keep having those conversations. Keep talking about your journey and you will come to learn that someone - though they may be silent - is listening intently with wide eyes. Someone’s life is being impacted by your strength. Please continue to use your platforms to empower others and to call out the false information that is out there. Continue to amplify the need for such things as centers of excellence, and for Minimally Invasive Gynaecological Surgery as its own sub-speciality. More than ever, we need for patients who have suffered and continue to suffer, to have access to the treatment and care that they deserve. We need it now.