Endometriosis – Suffering in Silence

I’ve secretly suffered with the pain of Endometriosis since I was a 10-year-old girl. Imagine a young girl walking the halls of elementary school with jackets and sweaters tied around her waist in the summertime scared that I might have an embarrassing “accident” due to heavy bleeding. Not understanding why for days at a time I had to lay in bed with disabling pain, vomiting and unable to keep food and pain medication down. Ginger-ale, crackers and heating pads became my sanctuary for days at a time each month.

At 12-years-old I remember vividly getting diagnosed with Endometriosis. My gynecologist prescribed to me birth control pills. My primary care doctor said to me (a child) “now this doesn’t mean you can go out and have sex without condoms.” Then she preceded to give me the abstinence talk and essentially chastised me for needing to take the birth control pills. I was so ashamed I actually signed up to visit Planned Parenthood a “safe” place where I could get my birth control pills at no cost and without judgement. No child should be shamed by a doctor for seeking medication that was prescribed to help a serious medical condition like Endometriosis (but I was.)

The birth control pills helped for several years but not without multiple side effects. I experienced hormonal changes. Constantly cried. Had periods of depression. I gained weight. My hair fell out multiple times. My skin would sometimes experience acne. I had spotting. Each time I would tell my gynecologists and primary care providers they would dismiss my concerns.

During the ages of 18-years-old to 32-years-old I was able to successfully serve in the United States Air Force. I struggled with Endometriosis, Fibroids, and Ovarian Cysts. I was constantly at sick call due to heavy bleeding, vomiting, severe pain and anemia. I had multiple surgeries to diagnose and to alleviate the pain. Nothing worked. Many times I was accused of malingering meaning “faking my sickness.” Men and women supervisors did not understand “why I wasn’t getting better.” There was very little compassion. I learned to deal with my suffering in silence. There were moments when I went to work and quietly vomited in the stalls during my shift-work. I would bring heating pads, crackers and ginger-ale in my bag. Mission came first!

At 30-years-old I decided to stop taking the birth control pills and to undergo the fertility workups to see if I could have children. Infertility is common with those who suffer from Endometriosis. I endured painful months suffering quietly with my periods. The doctors performed exploratory surgery to remove the Endometriosis. At this time my military chain of command threatened to punish me for undergoing an “unnecessary” surgery. It was difficult to explain to the woman that was my military leader how severe the pain was during my menstrual periods. She didn’t empathize because she had never experienced such pain. In her mind it was completely made up. I ultimately decided to end my Air Force career and focus on my health. I wanted to beat Endometriosis and needed peace of mind and freedom to seek the necessary healthcare treatment.

At 35-years-old, my periods became heavier. I once bled for 45 days straight. My anemia had reached severe levels. I remember going to the emergency room. It was a Catholic hospital. They refused to give me the birth control needed to stop the bleeding citing religious reasons. My gynecologist previously inserted an IUD to “help with the bleeding” but it made matters worse. The emergency room doctors immediately removed the IUD. I was suffering in my own hell.

As a civilian I thought the workplace support would get better. It didn’t. My civilian manager actually called me into her office and said: “Your sick leave balance is low. My leave balance has never gotten this low. It looks bad.” She never once thought to ask me what was going on or what I needed. I voluntarily showed my management all of my medical paperwork. I was able to go to my medical appointments, take the necessary time off when I was in chronic pain or vomiting and get surgery without going into the negative on leave. I ultimately was forced to file an EEO complaint for discrimination due to a documented medical disability.

Fast forward to the present. At 38-years old, after multiple surgeries, prescriptions and diagnosis of Endometriosis, Fibroids and Ovarian Cysts I still suffer with the chronic pain. I’ve tried Chinese Medicine, herbs, accupuncture, herbal teas, exercise, vegan eating, just about every treatment recommended. Nothing has worked. There’s been countless times where I’ve missed work, social events, and other commitments due to being in the emergency room or being in bed unable to move. My quality of life has suffered severely due to Endometriosis. Unfortunately a hysterectomy may be my only relief. I hope a cure is found soon to help those of us suffering in silence with Endometriosis.

~Love,

Simply Ebony a Chronic Endometriosis Sufferer