Endometriosis and the gift of motherhood

Allie and her toddler son in their apartment

When my first period came at age 13, it involved blood clots and extreme pain. I didn’t know what to expect or what was considered “normal,” but, thankfully, my mother did. She recognized that my symptoms were unusual and immediately took me to see my pediatrician. I was first prescribed birth control pills, which seemed to help initially, but when my period remained heavy and painful, I was put on a different birth control pill that enabled me to have my period only four times a year.

I thought my situation was normal — albeit uncomfortable and inconvenient. No one ever suggested painful periods could be anything more than bad luck. I would hear women talk about menstrual cramping and see advertisements for medications to relieve menstrual symptoms … I just figured I had bad periods like so many other adolescent and adult women.

I believed that for years.

Finding answers to years of pain

Then, when I was 22, my cousin Emily was diagnosed with endometriosis. I had never heard of it. I figured it was something extreme because Emily’s symptoms were much more severe than mine. Emily’s mother, my aunt Mary Alice, knew enough about my symptoms that she thought I might have endometriosis as well, even though my symptoms were different than Emily’s.

Endometriosis is a chronic condition affecting an estimated 5.5 million women in North America — 30-40 percent of whom become infertile. It occurs when tissue similar to that which normally lines the inside of the uterus (endometrium) grows outside of the uterus. This misplaced endometrium-like tissue continues its normal monthly duties of thickening, breaking down and bleeding away, but since there’s nowhere for this blood to go, it stays trapped in the body, causing pain, cysts and possible adhesions (scar tissue).

My aunt urged me to meet with Emily’s specialist, Dr. Marc Laufer, chief of Gynecology at Boston Children’s Hospital as well as founder and director of the newly formed Boston Center for Endometriosis. I was hesitant to go because my symptoms seemed so different than my cousin’s, but I decided to at least make an initial appointment.

The first time I met with Dr. Laufer, I immediately felt comfortable with him. Even though my outward symptoms were not as debilitating as Emily’s, he took them seriously and listened to everything I had to say. He was confident I had endometriosis and explained that getting a definite diagnosis was urgent because, without treatment, endometriosis can possibly cause infertility.

I underwent an exploratory laparoscopy the following week, which revealed that I had Stage II endometriosis. Dr. Laufer removed the abnormal tissue, excess blood, scar tissue and adhesions he found on my bladder and on my left ovary. After surgery, Dr. Laufer treated me with continuous birth control pills to “turn off” my periods so that the endometriosis would not grow back. At first, that course of treatment seemed unnatural, however, once I understood that endometriosis might not get worse with this treatment, I followed the plan wholeheartedly.

If I had not been diagnosed and treated when I was, there is a very real possibility I would not have been able to become pregnant. Although I was not trying to have a family at that stage in my life, having children was always something I wanted.

Motherhood, the greatest gift

Three years went by with no periods, and no pain or discomfort. At that point, my husband and I decided we wanted to start trying to start our family. Dr. Laufer took me off birth control pills. I began my period immediately and was on a regular cycle again despite not having had a period in years. After a few menstrual cycles, I became pregnant and our son, John Richard Hales, was born on Dec. 1, 2015. Our son Johnny is now 21 months old, and his little sister is due this month. Now that I am having a daughter, I am even more grateful for the knowledge I have gained about endometriosis.

Allie holds her toddler son

I credit being able to experience motherhood to my mother and my aunt Mary Alice who recognized that painful periods were not a normal lot in life, and to Dr. Laufer, who has been there for me throughout my whole journey with endometriosis — from diagnosis to multiple conceptions. Due to Dr. Laufer’s research and knowledge of endometriosis, he has also diagnosed all three of my younger sisters with Stage I endometriosis — as well as several other cousins.

Let’s talk about endometriosis

Many people don’t talk about endometriosis — either because they don’t know it exists or because if they have it, they don’t want anyone to think something is wrong with them. Having been through this experience, I feel it’s important to be open about my diagnosis to help educate other girls and women.

One of my greatest joys in life is being a mother. I am grateful every day to have been given this gift.

Learn more about The Boston Center for Endometriosis.

About the blogger: Alice “Allie” Hales studies law in Boston, where she lives with her husband, Riley, and their toddler, Johnny. The Boston Center for Endometriosis was founded in 2012 through a gift from Allie’s family foundation, The J. Willard and Alice S. Marriott Foundation. In addition to diagnosing and managing endometriosis, the Center is a hub for unprecedented research advancement. The Foundation recently announced an additional gift to be used to support the Center’s major research project: building a one-of-a kind biorepository and database to fuel discovery in endometriosis.