Fleurish – Empowering a cure: March is Endometriosis Awareness Month: Local woman shares her fight with her ‘invisible tiger’
by EDITORIAL on MARCH 21, 2012
By Bethany Cagle
Bethany Cagle is a 28-year-old dance artist in Denver, who is engaged to be married. Instead of planning a wedding, Cagle is planning her oophorectomy.
March is Endometriosis Awareness Month and Cagle tells her story of being diagnosed with endo, so other women may be educated on this painful, non-curable disease.
As a teenager, I often experienced extremely painful periods. No one around me was ever alarmed. I was offered Aleve for my symptoms, and when I was old enough to see a gynecologist, she gave me birth control pills.
In the meantime, my partner and I were no longer able to do our favorite things together. I had to sit on the sidelines while he went running, snowboarding and to yoga without me. Traveling was also a major challenge. The very first time he took me to Paris, all I can remember of the city was wandering around the Louvre in excruciating pain with my Mona Lisa smile.
Feeling defeated, I turned to a Western medicine practitioner, feeling certain this would be the end. It was only the beginning, and I actually had no idea what truly being defeated felt like. It was not until a male OB/GYN performed an ultrasound and condescendingly stated that he was sorry, periods hurt, but there was nothing wrong with me, that I realized what an uphill battle I was about to fight.
15 doctors later…
I found someone that “suspected” I might have endometriosis. I went on birth control with no relief. I took injections that simulated menopause and pregnancy with no relief. I endured months of unbearable hormonal mood swings, hot flashes, insomnia and night sweats. In my 28th year of life, I got my master’s degree and spent the year in menopause. Concurrently, my symptoms were getting worse, which included increased pelvic pain, painful bowel movements and unbearable intercourse. In December 2011, my doctor agreed to do a diagnostic laparoscopy to see what was happening on my insides. I remember praying she would find something so I would feel vindicated in my assertion that something was very wrong with me. Three belly scars later, I had my diagnosis. Endometriosis.
It is finally over. Wrong again.
The diagnosis was only a new beginning. I did have endometriosis and it was worse than anyone had imagined. To quote my surgical report: “As traction was applied to the right ovary, copious amounts of chocolate colored drainage were noted to be coming from the right ovary. Attention was then turned to the left ovary that appeared to also be severely cystic.”
Endometriosis has no cure, and I had actually already tried all of the hormone cocktails that had any hope of relieving my pain. At my post op appointment, my doctor referred me to a specialist, citing her inability to help me further.
My best chance of getting my life back is to remove my ovaries and excise the remaining endometriosis inside my abdominal cavity. It’s called an oophorectomy. But what about children? My partner and I are considering in vitro fertilization to freeze eggs for a potential pregnancy in the future. I sometimes still can’t believe that there is not a better way.
What is endometriosis? It is a reproductive and immunological disease in which the tissue from the lining of the uterus (endometrium) migrates outside of the womb and attaches in other areas inside the pelvic cavity. Some very common symptoms are killer periods, infertility, painful sex, gastrointestinal and urinary act difficulties, and so much more.
The facts from Endometriosis Research Center
• 176 million women worldwide have suffered from endometriosis.
• There is no cure for endometriosis.
• Endometriosis can be genetic.
• Period pain that leaves you unable to perform normal activities is not normal.
• Abdominal bloating, swelling or tenderness during or near a period is not normal.
• Endometriosis can only be diagnosed via surgery.
• Endometriosis is a subjective disease
• Some women with extreme cases of endo experience no pain and some women with relatively minor cases experience excruciating pain symptoms.
• Endometriosis can occur in girls as young as 10 and in women as old as 85.
Women have a high pain tolerance for a reason. We always thought we had to suck it up. If you think you experience pain that is not normal, ask your doctor. When they blow you off, ask again. And again. And again. My story does not have a happy ending…yet.
For more information, follow Cagle’s story at www.bethanybecame.blogspot.com and visit www.endocenter.org for more information.