My Life with Endometriosis

This post will contain some graphic information and maybe even TMI, but this is a real and raw recollection of how endometriosis has affected my life over the past 8 years. I am in no way suggesting that I am an expert on this subject or know the best way to handle such a difficult disease. However, I have felt compelled to share my story because of the recent news regarding insurance companies and birth control. This is a problem that many women face and maybe you or a woman you know could benefit from this.

"The Supreme Court on Wednesday upheld a Trump administration regulation that lets employers with religious or moral objections limit women’s access to birth control coverage under the Affordable Care Act and could result in as many as 126,000 women losing contraceptive coverage from their employers." (New York Times, July 8th, 2020)

When I was 17 years old I had my first severe symptoms and indicators that something was wrong with my body. Before this, I would have extremely painful and irregular periods, but this was considered "normal" because my body was young and still adjusting. However, I knew that something was not right and my mom and I visited my first OBGYN. The doctor diagnosed me with PCOS and put me on birth control when I was 17 for pain management and hormone regulation. The doctor said to come back in three months and if I was still in pain they would do laparoscopic surgery.

Three months later I was back and had my first surgery scheduled right after my 18th birthday. This was my senior year of high school and I missed a week of school, the end of my cheerleading season, and softball season because the recovery time is 4-6 weeks. After the exploratory surgery, I was diagnosed with stage 3 endometriosis.

1 in 10 women worldwide is affected by endometriosis. The disease most commonly affects women during their "reproductive years." Endometriosis is a condition where tissue similar to the lining of the uterus -which should only be located inside the uterus- is found elsewhere in the body (endometriosis.org).

My story does not stop there. After the surgery, I was also put into a chemically induced menopause because it was meant to reverse endometriosis and stop the side effects. I was given shots for six months that made me lose sleep, have hot flashes, and just overall make me no longer feel like myself. Shortly after this, I would find myself in pain again and back on birth control an back in another doctor's office.

To make a long story short, while I was in college I found a new OBGYN who suggested chemically induced menopause again and I refused. I went through several different treatments while in college including different birth control methods and physical therapy. When I was 20 years old I found myself in the ER with my roommates at 2 am because of a ruptured cyst on my ovary. When I was 21 my boyfriend found me laying on my bathroom floor in pain and a month later I had my second surgery. Which made me miss another week of classes and more events during my senior year of college. Throughout year 22 and year 23 I was still in pain (with some good days) and continued to have irregular bleeding and discharge.

Now, I am 24 years old. I have spent 8 years trying to find a solution to my pain. I have another doctor and I take Orlissa for my endometriosis. I am still on birth control for hormone and pain management.

My story still does not and will not end here. This prescription is only a short term solution because you can only take Orlissa for one year. I don't know what my next step will be and I don't know what will happen if Noah and I decide to have children.

Photo of/by Ruth-Anne Cunningham.

This is my reality and birth control was not the ultimate solution, but insurance paying for my birth control and this long list of treatments helped me experience less pain, less bleeding, and let me live my life more.

If you are experiencing any of the symptoms of endometriosis or you are concerned, talk to your doctor, and if that is not a satisfying experience, talk to another doctor! If you would like to talk to me more about my experience please don't hesitate to reach out!

Be well,

Meghan