Stephanie’s Choice – Focused Ultrasound

Stephanie shares her story at Fibroid Relief At Last Charlottesville in February 2011.

Stephanie shares her story at Fibroid Relief At Last Charlottesville in February.

A little more than eight months ago, I was directed down the frightening path to the operating room after a diagnostic ultrasound revealed a rapidly growing 435cc fibroid that was causing me severe pain and other problems. At age 27, I had never even heard of uterine fibroids and was tearfully shocked at the news that a bowling ball-sized tumor existed inside of me that would continue to grow and cause more damage if not removed.

My doctor insisted that a myomectomy was my only treatment option. There was a likely risk that a hysterectomy would be performed instead if things didn’t go as planned during the surgery, but I wouldn’t know until I woke up! Uterine artery embolization was not an option for me because the fibroid could potentially detach from the artery which supplies it with blood and it would then be floating around inside of me, requiring emergency surgery. So I would end up with painful incisions, noticeable scars, having to take pain medication, spending days in the hospital and months recovering, etc. All I could think to myself was, “I can’t do this!” The life I loved and worked so hard to have was already significantly compromised and it would never be the same again if I had this surgery. So I decided to turn back and run before I reached the end of the path to the operating room and take a chance to find an alternative on my own.

Meanwhile my symptoms continued to get worse. I began to lose feelings in my thighs from the fibroid pressing on my nerves, the pain and pressure were almost unbearable, my energy seemed to disappear more everyday and my abdomen continued to enlarge and feel heavy. It looked like I could have been pregnant and just starting to show. I was forced to take a medical leave of absence from my job with no pay and no sick time left to use for compensation. With a mortgage, bills, and living expenses to pay, I was even more desperate to find relief fast. Thankfully, the wealth of knowledge I gained from researching the internet on sites such as this one eventually led me to information on MR-guided focused ultrasound surgery (MRgFUS) and onto the right path.

After my insurance refused to pay for FUS at a treatment center in New Jersey, I was inspired to enroll in a clinical trial for a newer version of the same treatment using an enhanced sonication technique, and the ability to treat up to 100% of the individual fibroid volume. UVA’s Focused Ultrasound Center in Charlottesville, VA is one of the treatment centers participating in this trial, and I learned that it was only a 6-hour drive from my house. I contacted them by phone and was able to get an appointment.

After a long drive to meet with Dr. Matsumoto and his team, I finally got the answer I had been searching for: they would accept my enrollment in the clinical trial! I had to have two treatments in a row, following three months of Lupron therapy to shrink the fibroid as much as possible prior to FUS. The next three months on Lupron was hard, but I will admit that some of my symptoms did slightly improve. The fibroid reduced in size about 30% from the Lupron therapy. 

The first day of FUS treatment was one of the the craziest days of my life. It was hard to know what to expect even though I spent months reading everything I could find about how FUS works. I was told that I would feel some pain, cramping, and a lot of heat in my pelvic area that would only last a matter of seconds during the sonication. If it became unbearable or I felt pain in my back that radiated down to one of my legs, I had a “stop” switch button to push right away to shut down the machine. I was also aware that every time the “stop” switch is pressed, the doctors would come in and check on me, then the machine would take a few minutes to reset and it would knock some time off of the allowed treatment time. I was approved to receive the maximum of two treatments on separate days due to the large volume of the fibroid, but time on the table is not to exceed 4 hours per treatment. Therefore, I did what I could to prepare myself to get the most out of what I came for.

At the end of the first treatment I knew all of it was worth it. I only pressed the kill switch button twice, each time because I felt it hit a nerve in one of my legs. Any pain I experienced immediately stopped and went away as soon as the sonication finished or if I hit the “stop” switch. I received a mild conscious sedation to help keep me comfortable, but I will honestly say there were times where the sonications became quite hot and I felt an intense burning sensation for a few seconds.

At the end of the first treatment, I was sore and stiff from lying on that table motionless for so long, but I was able to get up and do some things by myself.  The MRI films they showed me immediately after the end of my final treatment were unbelievable. Approximately 75% of the fibroid tissue was safely and successfully destroyed. The untreated tissue was left only in the outer-most regions of the fibroid. My body should absorb the rest of it over time, but there is no chance that the tissue from the same fibroid would regrow.

The day after my FUS procedures I could actually push in on my abdomen again, it was still enlarged but instantly felt soft and spongy. I could literally feel that the fibroid was hollow from all the tissue that was destroyed! My abdomen started to shrink back down approximately 6 weeks later. It has continued to reduce in size each month. I felt some symptom relief as soon as a couple days after the procedure, and there has also been a significant improvement in my quality of life, both of which still continue to improve every day.

At this moment, it’s been a little over three months since I had MRgFUS and what a dramatic difference it has made in my life. I returned back to work full-time two months ago after feeling enough relief to do so. So far almost every fibroid-related symptom I had has either gone away completely or improved a great deal.  I think FUS is amazing, and I believe that fears of incisions, scaring, complications and long painful recovery times are now concerns of the past with this new technology.

My personal message to others:
“Knowledge is power. Educate yourself so you can play a more active role in your own healthcare.”

Find out about other uterine fibroid clinical trials.