Amanda was diagnosed with Endometriosis at 22 and had a hysterectomy at 28. Now 36, she continues to suffer from chronic pain, despite the hysterectomy. Regardless, she fights through it and she and her husband have adopted two lovely children. She is blessed, even with all she has endured. May her story aid others in their journey.
Amanda’s Journey: My story started one summer afternoon when I was twelve. My family had gone on a day trip to a park. My period had started that day and the cramps started as usual. This day was going to be a turning point though as the pain reached a point to where I found myself curled up on the floor of our minivan drenched in a cold sweat, praying that I would not throw up as my family picnicked nearby.
At first, these episodes happened a few times a year. By the time I was seventeen, they became a monthly occurrence. I did not understand the significance of the degree of pain I was in. All of my friends complained about their periods so I figured I was just experiencing what everyone else did. My mom took me to my first gynecologist appointment that year, searching for relief. I was started on an anti-inflammatory and told that it was “normal” to have cramps like that at my age. Hopefully, they would improve with age.
With age things only progressed. Still very sure that my cramps were no different than normal I said nothing. By the time I returned to the gynecologist at age twenty-two not only were the cramps unbearable, I had begun running a fever prior to the start of every period. Surgery was recommended to rule out endometriosis. Heading into it, I was sure I was wasting everyone’s time. I fully expected to wake up from surgery and hear that everything was fine. The words I heard instead were an entirely different wake-up. The endometriosis was extensive.
If I wanted to have children, I would need to start as soon as possible and even then, I was told that most women with my degree of endometriosis had difficulty achieving pregnancy. I lived the next couple of years in denial. The doctor was just quoting statistics. Surely, I would be exempt from those numbers.
I married my best friend at twenty-four and nine months later we decided to embark on the journey to having children. A year passed by with no success and those words I heard after my surgery began to haunt me. We sought out the expertise of a Reproductive Endocrinologist and began the infertility roller coaster. I would take fertility medication until the symptoms of the endometriosis became too much to bear and then switch to Lupron and induce menopause. Over the three and a half years we spent trying to conceive I had gone from my years as an athlete to a prisoner to my pain. I could barely get off the couch. With every step I took pain resonated in my pelvis. We were struck with both a literal and figuratively painful truth.
Over the years I had had six surgeries in an attempt to keep the endometriosis at bay. The doctors advised that there was nothing more they could do except a hysterectomy. The reality was devastating. I was no longer living life, but merely existing all in the name of conceiving a child. In order to get my life back I was going to have to abandon my hopes and dreams. At age twenty-eight the decision was made to proceed with a hysterectomy and pursue growing our family through adoption. It was a controversial decision to go through with something so radical. Not everyone was supportive. Coming out of surgery and hearing the report, I was completely validated in our choice. In addition to the endometriosis, I had extensive adenomyosis leaving my uterus in such shape that the doctor was not sure that I would have ever been able to actually carry a child to term. The hysterectomy possibly saved me from further heartbreak.
I would love to give you a fantastic ending and say that I was cured with the hysterectomy, but I was not. Seven years later I still struggle with chronic pain. The endometriosis had essentially eaten its way through ligaments that supported my uterus leaving nerve damage behind. In storybook fashion though we did go on to adopt two amazing kiddos through infant domestic adoption. We enjoy an open relationship with both of the birth mothers.
I would not wish endometriosis on my worst enemy. No woman should ever lose the ability to carry their child. No woman should have to walk around in chronic pain. But, today, I see the beauty in my struggle. It has shaped me into the woman I am now. It has given me the family I get the privilege of enjoying.
As odd as it sounds, I am now grateful for the gifts I have gained through fighting this disease.
Words of Advice for Us: Learn to advocate for yourself. Trust your symptoms and don’t undermine your experience. Don’t let a doctor tell you that what you are experiencing is normal if you know in your heart that something is wrong. Lastly, do not have a hysterectomy in hopes of ending the pain. The endometriosis may have damaged nerves leaving lasting pain. I do not regret my decision, but that is something I wished I had known going into surgery. I spent several years post-hysterectomy depressed that pain continued to control my life.
I want to send a special Thank You out to Amanda for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Thank you!!! May 2015 be a little less painful for you. I am sorry to hear you still suffer, but am uplifted that you are continuing to feel blessed in the gifts and knowledge you’ve gained, and share! And wish you and your family all the best!
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.