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March is Endometriosis Awareness Month
(Image courtesy National Institutes of Health)
March was Endometriosis Awareness Month. One in 10 women suffers with endometriosis.
Writer Emily Pidgeon is sharing her story to explain what the month has meant to her, and also in hopes that her story “speaks to other women out there who may be suffering in silence.”
What does it mean when someone says “quality over quantity”?
Most people would agree their first thoughts are of products. You get what you pay for. When you buy cheap, you get cheap.
But what is the cost of quality of life? I don’t know if we will ever be able to put a price tag on it. It is of epic proportions. It requires making decisions that are so monumental, that faced with greater adversity, you make them anyway.
In April 2014, I sat in my OB/GYN’s office waiting to meet my doctor for the first time. The waiting room was packed with women and couples, some of them expecting or with little ones in tow.
I looked around at those women and smiled to myself. I dreamt that after this appointment, my husband and I would be sitting in the same place someday soon, expecting as well. We had been married for a year and were actively trying to conceive.
Each month was heartbreaking. Each time we were disappointed. Nonetheless, hope remained that next month would be our month. That was our mantra, our motto: Next month is our month.
As I sat on the exam table waiting for the doctor, I kept picturing our lives in my mind. A big house and a big family. I was deep in my daydreaming when the doctor finally entered.
He examined me and gave me some information about infertility. He wanted me to have an ultrasound right away and moved me into another area of his office for the procedure.
After the technician performed my ultrasound, the doctor came back in to discuss the results. I was shown a large cyst on my right ovary and two small cysts on my left. The doctor explained that cysts of any kind can cause infertility and suggested their immediate removal.
In addition to the cysts, he mentioned endometriosis and said it can also contribute to infertility. He recommended a laparoscopic procedure as soon as possible to remove the cysts, “clean me up,” and address the excruciating pain I was experiencing.
I scheduled my surgery for the following month. Little did I know that surgery would change the course of our lives forever.
Women who suffer from endometriosis have uterine tissue growing outside of their wombs, in their abdominal cavities. These small “splotches” of tissue, fed by estrogen, attach to other organs, such as the kidneys, bladder, bowel and intestines.
Similar to cancer, the higher the stage, the worse the disease. I was diagnosed with stage four endometriosis. While it’s not the death sentence most would attribute to stage four cancer, the pain was quite debilitating. And it has no cure.
Women who develop endometriosis will have it until they reach menopause and their estrogen levels drop. If they have a lot of scar tissue, the pain can continue well into their later years.
Very minimal treatment is available. Laproscopic surgery is the only way to diagnose the disease, and also the only effective way to remove the extra tissue.
But finding a surgeon skilled in thorough removal of endometriosis is not an easy task. Endometriosis grows rapidly, and feeds and multiplies until your entire abdominal cavity and organs are covered.
Endo can and does return rapidly to a healthy woman’s body if her surgeon was not able to get rid of the diseased tissue, and if her surgeon doesn’t provide complete post surgical care.
Birth control stops the body from ovulating and therefore stops the endometriosis from growing and spreading, because it stops endo’s food source in its tracks.
For a young, single woman who is not ready for a family, birth control makes the most sense and works very effectively. For a woman like me, who was actively trying to grow her family, it doesn’t.
Brian and I were left to hope and pray we could have a baby before the growths returned.
We were not.
I had two laparoscopies in 2014 and 2015. In January 2016, my symptoms returned, less than a year after my last procedure. After having additional testing and more blood work, I learned I had markers of cells that were pre-cancerous.
I was given the choice of another laparoscopy or a hysterectomy.
I was shocked. A hysterectomy? At 28 years old? How could I possibly make that choice? How could I give up my dream of a big family? How could I deny my 6-year-old son the chance for a sibling? How could I take away my husband’s dream of another child?
I wasn’t ready to accept those choices. I struggled with it daily. I refused to believe that I would have the courage needed to make that decision.
In the end, it was my husband who convinced me that I had so much more to live for than just the hope of another baby. I already had one, and he was my whole world. How could I not make the sacrifice to be in his life for years to come? I couldn’t be that selfish.
We were told our chances of having children naturally were less than 15 percent without any fertility treatments. I couldn’t justify the financial burden of IVF on my family with no guarantee of success.
So, with all the strength I could muster, I made the call to the surgeon’s office to schedule my hysterectomy.
Nothing can fully prepare you for what it feels like to wake up after that kind of surgery. I put on my brave face for my husband and smiled as they wheeled me away to the operating room. I withstood criticism and judgement by family and bouts of anxiety that plagued me in the weeks before my surgery.
I had agreed to have a total and radical hysterectomy. In addition to the hysterectomy, I agreed to participate in a research study conducted by the University of Pittsburgh regarding endometriosis and how to treat it. I had the hope that one day, my contributions could bring about a cure to this debilitating disease.
During the month following my surgery, I could not use any hormone replacement. Because I had surgery at such a young age — 28 — I had to select a route of hormone replacement to keep my estrogen levels up and prevent early menopause
Once a young woman has a hysterectomy, her body is immediately thrown into surgical menopause. I experienced severe symptoms including hot flashes, night sweats and incredible mood swings. I was not able to lift anything and was unable to get in and out of bed unassisted for weeks.
But over the next three months, I healed. My incisions closed and my menopause symptoms receded. Life returned to normal and for the first time in ten years, I was pain-free.
I cannot begin to express how amazing it felt. I no longer experienced the gut wrenching cramps that crippled me for days or the extreme fatigue that left me feeling exhausted constantly. Physically I was doing very well, however mentally, I was waging war with my emotions.
It took a whole year for me not to cry when friends and family announced their new bundles of joy. I second-guessed myself. I yelled at my husband for “talking me into the worst decision of my life.” I sobbed at gender-reveal videos online, knowing I would never get to experience that. My husband would never hold another baby in his arms, and the guilt ripped me apart.
Then, slowly, I realized how lucky I was. I realized how immensely strong I had become.
I had the guts to make an impossible choice. I stood up to the enemy in my body, and I had won. It was an incredibly freeing feeling.
I let the feelings of regret go and accepted that I was the woman I was born to be. I had faced an adversary head on, and did not let it beat me.
My son would have a mother to help him pick out flowers for his first dance, to cry with him when his heart was broken for the first time, to help him with his math homework and scold him to wash his hands before dinner. I already had the most amazing gift right in front of me. To long for another baby was selfish. I knew then I had made the best decision I could have ever made.
Life continues to surprise me. My son is 10 years old now. I have had four, happily pain-free years since my surgery.
People are shocked when I tell them my story and ask me how a 28-year-old woman could make the choice to end her fertility with such calm resolve.
How could I have possibly walked away from ever carrying a child in my womb?
The answer is simple: I chose quality over quantity.
One in 10 women are diagnosed with endometriosis. Maybe you are also among the one in 10. Maybe your sister struggles with the disease. Maybe you suspect you have endometriosis and need to be reminded to take action.
I can almost guarantee you know someone with “endo.” Let’s come together and #endendo.
Emily Pidgeon is a freelance writer from McKeesport. She may be reached at email@example.com.
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Originally published March 31, 2020.