Chronic and debilitating pain, prolonged and heavy bleeding, chronic fatigue, painful bowel movements, diarrhea and constipation, bloody stools as well as anxiety and depression, are just some of the symptoms a woman with Endometriosis experiences.
What exactly is Endometriosis? According to Endometriosis UK, endometriosis is an inflammatory condition whereby cells similar to the ones in the lining of the womb or uterus, are found elsewhere in the body. Each month these cells react in the same way to those in the womb; building up and then breaking down, forming scar tissues and adhesions that can affect organs or even the nervous system. However, unlike the cells in the womb that leave the body as blood through a period, this blood has no way to escape causing internal bleeding.
I am a surviving Endo Warrior. I am 1 in 10. I have been living in silence with endometriosis and adenomyosis for most of my life but I never felt comfortable sharing my experiences due to the stigma attached to anything “period related”, the fear of being dismissed, misjudged and misunderstood. I knew I had to gain the courage to use my voice, because I know what it feels like to not feel healthy, to feel like you’re fighting a daily battle against your own body, and still have to use what little strength you have to get through the day with a smile on your face. I always knew to myself I wanted to help others because I never wanted other women to suffer the same endometriosis journey like I did. Today I am proud to openly discuss, share and shout aloud my lived experience.
It has taken me almost two decades to receive an official diagnosis with endometriosis and I know I am not alone in experiencing this. Currently, the average time for diagnosis is 7 to 10 years! That is 7 to 10 years living with a plethora of symptoms and no idea why. How is this acceptable? This needs to change because this disease takes so much from us. As someone with multiple conditions, I can say endometriosis is the one that has impacted me in every way imaginable. My childhood, my family life, my mental health, my social life, my financial status, my work life and my career aspirations have all been impacted by a delayed diagnosis and living with such a debilitating disease for years. Not only has it affected me, but also my loved ones who had to constantly take care of me. I felt that I was responsible for putting them through so much worry and emotional turmoil, yet they showed me unconditional love and support during all my struggles and they still do.
I strongly believe no woman should have to wait this long for diagnosis or the appropriate treatment. As a child I thought all women suffered with horrible pain during their periods as close relatives had similar experiences but now I know this simply isn’t true. We need to stop normalizing the idea that women have to suffer when they experience a period and accept that this disease is more than just a ‘bad period’. I believe the more we know about this disease, and work to raise awareness, we can help young girls see that this in fact isn’t normal and that they need to be investigated by a doctor. It is the hope that awareness can lead to the significant reduction of the diagnosis time for endometriosis. Soroptimist International Anaparima has provided such an incredible platform, in this regard. The month of March is internationally identified as Endometriosis Awareness Month and in 2022 and 2023, we at SI Anaparima, were able to help bring more awareness to this disease and raise our voices for our Endo sisters to be heard.
The month of March and all the initiatives that are brilliantly executed is just as important for those diagnosed with endometriosis as it is for those who are not because this information can be lifesaving for someone’s mother, aunt, sister or daughter. The intention of these initiatives is by no means to highlight Endometriosis as the only woman’s health issue or disregard other female reproductive diseases that are just as debilitating, life altering and are equally important. But endometriosis is still “that one” that society still seems to be unaware of and that seems to still be shrouded in mystery and myths, so much so that many people almost always respond with “what’s that” or I’ve never heard that word before”. I believe that those of us who have the knowledge can no longer risk being complicit in keeping this a secret. I have always believed “knowledge is power” and we need to do all we can to keep the conversation going about this chronic disease or get it started in new spaces. This year it has warmed my heart to see some of our sister Soroptimist clubs also launching initiatives to do just this and bring attention to Endometriosis; showing what Soroptimist truly represents, women empowering women.
While this disease has impacted my life significantly in some negative ways, I choose to also see the many lessons it has taught me. It has taught me from a young age that I always wanted to help others, it has taught me to be empathetic and compassionate towards others, it has shown me strength I never thought I had and has shaped me to be the person I am today. The person I hope my son, my husband, my parents and brother can say they are proud of. In the words of Paulo Coelho, we can’t choose our lives, but we can decide what to do with the joys or griefs we’re given.
To my fellow Endo Warriors, please know that you are not alone. I, together with all the beautiful, strong women at Soroptimist International Anaparima, March with you today! We see you and we hear you! Always remember that your strength is your power.
Written by: Leann Nanan-Habib