Blog

12
Jul 2021

Hear Us. Believe Us. Take Action with Us.

  • By: Priyanka Shinde

I am no Blogger. I am just here to share and hope to help more girls like me. A 30-year-old middle class girl from India. An Architect by profession. A basic girl who just wants to live her dreams. I am no writer. But ever since Endometriosis entered my ordinary life and made it extra-ordinary, I have a lot say. If I choose to share, I know that my vulnerability may help others finally receive their own diagnosis by learning about familiar symptoms. For those who have already been diagnosed, seeing me open up about my journey may help them feel less alone.

I was lost. I was clueless. And I thought I was alone. The disease that affects 1 in 10 women, had me on my knees, left to feel isolated. 16 years of painful periods, 14 doctors, innumerable appointments, periodic visits to the clinic, numerous blood tests and 100 sonograms & misdiagnosis later, I found a doctor who diagnosed my condition correctly – I have severe Endometriosis, Adenomyosis and multiple cysts (PCOS). A chronic illness that has No Cure! Medical Sciences have ways to temporarily tame it. But no cure!                                                  

Even after the diagnosis, I was scared to death as to how to address this issue and how to find my way around it. To be honest, I am still learning. It's been 1.5 months to my first excision surgery and I am still not sure if I am at least 50% healed or better. It was only post my diagnosis that I started my research & study.

Endometriosis is an illness that can cause infertility, glue your organs together in adhesions causing organ damage, internal bleeding, pelvic neuropathy, collapsed lungs, brain fog, pelvic floor dysfunction, GI dysfunction, sharp electric pain, ovarian cysts, debilitating nausea, excruciating back and pelvic pain, leg pain, excessive bleeding, etc - All because I have a UTERUS.
I have this disease for no fault of my own.

Period pain is still a taboo; gets so normalized that almost everyone ignores it. Even gynecologists somehow lack complete knowledge about it and prescribe pain killers.
No one tells you how bad a chronic illness (endometriosis) affects your life and no one tells you that it not only affects your physical health, but it destroys your mental health too. It's a battle you fight every day. No one tells you that it will destroy your body image and self-confidence because your body looks different every day, or that flare, bloating, swelling can come out of nowhere and ruin your plans. Learning to live with chronic illness in past 2 years has been incredibly difficult. It affected my relationships, career, physical and mental health and so much more.  

My message - Please stop normalizing period pain. Endo is a systematic full body condition. Please start taking people with endometriosis seriously. We are suffering. We need better treatment & more specialists!! We need more funding and research. But more of all, we need your empathy. Please hear us & start believing us. Don't ask us to get pregnant to get rid of endo. Pregnancy is not the cure for Endo. Stop moral policing & don't push us to get married early and bear children. Stop looking at us as child production machine and consider us human beings first!

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