engage

Engage

Welcome to the Change the Cycle blog! We’ll be here every week, talking all things below-the-belt health – from heavy periods, to fibroids to pelvic health conditions, and more. We hope you’ll follow along to engage, learn and share with your friends and family.

#MyFibroidStory – Embracing My New Normal and Finding Stars in My Scars

by Change the Cycle
September 23, 2019

I was 19 years old when I had my left ovary removed. Just a year prior, my OBGYN at the time had found a small egg-sized cyst on my ovary and decided that birth control pills would be the best treatment for me. A year later, I had a dermoid cyst the size of a large grapefruit. Because the cyst was crushing my ovary, I had to have it removed laparoscopically. He insisted my reproductive system would still be in tact with one healthy ovary, and encouraged me that the rate of return cysts is only 25 percent.

 

At age 32, during my annual OBGYN appointment, my doctor asked me three times, “Are you sure you’re not pregnant?” We looked into it, and a sonogram determined I had 2 fibroids. With no symptoms at the time, we decided to embark on a “watch and wait” journey, meaning we would just keep an eye out for painful symptoms and see how they evolved. By age 38, the irregular periods, heavy bleeding, constant urination and weight fluctuation had started to become a challenge.

Within a few years, the symptoms had become nearly unbearable. Every month my cycle was different – bleeding, no bleeding, unbearable pain, no pain. Some months I found myself changing pads every couple of hours. Throughout all of this, it never occurred to me that what I thought were two small fibroids could be causing all of this pain and uncertainty.

Eventually, my symptoms became so bad that I underwent my very first MRI, which revealed ten fibroids, an enlarged uterus, and adenomyosis. My doctor wanted to administer an injectable treatment for 3-4 months in an attempt to shrink the fibroids, then perform a partial hysterectomy. The diagnosis and invasive treatment plan scared me into seeking a second opinion.

In my search, I reached out to the Johns Hopkins University Department of Gynecology, looking for a fibroid specialist. The scheduling operator said the OBGYN I was requesting was the second most sought after in the field, but I was able to get in the next day due to what turned out to be a very lucky cancellation.

I walked into Johns Hopkins Hospital for my appointment with my MRI results in hand. As we reviewed the details of my MRI, I was physically present but my heart had completely checked out. I was desperate to be free of these tumors that had invaded my personal space. I wanted my life back. And I wanted my entire reproductive system to remain in place. This doctor was thorough, honest and patient in helping me understand my options. But ultimately, I had to decide. I was 43, unmarried with no children. And had one ovary. I considered the great things that had defined my life to this point – my church, my business, my amazing nieces and nephews. I had a choice to make for my life and my health, but it wasn’t easy to consider this when so few options had been presented to me in the years prior to this moment.

On June 10, 2016, I had a robot-assisted hysterectomy. It was the toughest decision I had to make – and it was difficult to grapple with the possibilities I was officially giving up, to have children naturally. Fortunately, I had the support of an excellent doctor and of my family.

I have five scars from the minimally invasive procedure, and one from the exploratory laparoscopy.  At 46, I’ve learned to embrace my new normal – I didn’t know my own strength. I made a decision to take my pain and use it to encourage and support other women challenged with uterine fibroids – and I’m so grateful to have found communities like The White Dress Project and Change the Cycle that allow me to do so.

My scars are now stars. Courage, purpose, survivor, faith, renewed – I am empowered to move forward. I can wear white.

-Tywana

 

Tags:
fibroids
health
uterine
women's health
change