March is #EndometriosisAwarenessMonth .
Endometriosis is a chronic, systemic inflammatory disease that does not have a cure. 1 in 10 women have endometriosis, yet it is one of the least researched conditions. It is not just a reproductive organ disease. It is when tissue similar (not identical) to the lining of the uterus, is found throughout the pelvic cavity and on organs. It can cause chronic symptoms throughout the entire body, including debilitating pain, immune and endocrinological dysfunction, chronic fatigue, infertility, as well as damage to organs such as uterus, bladder, bowels, diaphragm, pelvic floor, nerves, ligaments, lungs and liver.
Laparoscopic EXCISION (Not ablation!) surgery by an Endometriosis specialist is currently the gold standard treatment but it is not a cure since there is a high chance of it growing back. Surgery for Endometriosis is 7x-8x more riskier because it involves multiple organs. It should NOT be done by the average Gynaecologist as a routine surgery. (Tamer Secin, Endometriosis Excision Surgeon, New York). Many patients who seek help from an average OBGYN, not a specialist, go through with multiple Laparoscopic Ablation surgeries rather than excision, which creates more pain due to scar tissue and not removing the deposits completely.
I was officially diagnosed by Laparoscopic excision surgery in 2018, however it took me over 15 years to get that diagnosis. After years of pain during my periods and not, My previous gynaecologist said she, “knew I didn’t have Endometriosis”, but if I didn’t believe her “I could always put my body into menopause with a medication (Now I know it as Lupron!) and if my symptoms decrease, Ill know I have it. Then we can talk.”
Yes. That was her ‘expert’ medical advice. I never left a doctors office so confused and upset that my pain was not taken seriously. Thankfully I did not take her ridiculous advice and did not do any Lupron. Fast forward to last year, when my bladder pain became painfully life altering, I began to research pelvic pain obsessively until I pieced my medical history together and knew I was probably suffering from IC + Endometriosis. After learning about excision surgery being the gold standard, I knew I had to be my own advocate and find a reputable OBGYN/Endometriosis Specialist closest to me to try to help me. And I’m so glad that did! Walking out of my first appointment with the Endometriosis specialist, with a surgery date in my hand, started to make me feel like I finally was getting control of my health and well-being.
There needs to be more Endometriosis excision specialists, and much more research done to find better ways to treat and find a cure. I see a revolution starting lately in women’s health and love being apart of the advocacy. hopefully as Women speak up and word gets out, more funding is given for Endometriosis research.
My advice to all the pelvic pain warriors out there:
Don’t ever stop advocating + fighting for yourself and your body! Your pain is real and should not be brushed off as, “just a part of being a woman”.
