Uterine Fibroid Disease:  My One-Year Journey From
 Discovery To Recovery (Part 1)

By: Hope Waltman

For over two years I felt the symptoms, but like a lot of women, the lack of medical knowledge and the denial that something was wrong kept me from seeking help.

The wave-like spasms became more intense and the pain medicine no longer worked. My abdomen continued to expand and the shape of my body became more deformed, but I didn’t know what the medical problem was.

At my annual examination in July 2001, the gynecologist discovered the uterine fibroids and that my uterus was enlarged to the size of a 14-week pregnancy. At the examination my doctor brought up the myomectomy treatment (surgical removal of the fibroids) and ordered an abdominal and pelvic ultrasound study.

The ultrasound study, which was performed the next week, confirmed my uterus was at the 14-weeks pregnancy stage. I had two fibroids - one the size of a clementine orange and the other the size of a regular orange.

At my doctor’s consultation, I was uncomfortable with the way the doctor presented only a few of the available uterine fibroid treatments. I wanted a second opinion, and a friend gave me a brochure describing Uterine Artery Embolization (UAE). From the brochure I found the name of another gynecologist and made an appointment to get his opinion about my medical condition.

The second gynecologist sat down and explained all the available uterine fibroid treatments – everything from watchful waiting to abdominal hysterectomy. I had done some research before meeting with him, so I already knew I wanted the UAE procedure. I had also researched Dr. Robert Worthington-Kirsch’s medical background on the UAE procedure and knew that he had the most experience with the procedure.

I made an appointment with Dr. Kirsch for three weeks later, and during that time had a hard time accepting the fact that I felt as if two alien life forms were growing inside of me, living off my blood and oxygen supply. My husband, my biggest supporter, was the only one I could relay my feelings to during this trying time.

At the consultation with Dr. Worthington-Kirsch, I immediately felt comfortable talking about my fears and concerns. I was thrilled and scared about the procedure, but I knew that UAE was the best procedure available if you wanted to avoid invasive surgery - and I did.

After the consultation, a huge mental burden was lifted. UAE was determined to be the right treatment, and I was finally able to accept that I was a fibroid disease sufferer. Much to my amazement, I discovered that there are many, many women suffering privately and holding back the pain that comes along with this disease.

Dr. Worthington-Kirsch, a subspecialty board-certified Interventional Radiologist, has worked out of Roxborough Memorial Hospital in Philadelphia since 1990.  In 1996, he started performing UAE, and has treated more women with this breakthrough procedure than any other physician in the world (as of September 1, 2002, he had treated more than 1,350). He is dedicated to uterine fibroid research and advancement of treatments for fibroid disease, is one of the designers of the CIRREF FIBROID Registry, and is working to get uterine fibroid legislation passed in Pennsylvania.

September 6, 2001 was the day of my UAE procedure. An ultrasound showed that my uterus had grown to about the size of a 16-18 week pregnancy in just two months.   

UAE is done in an angiography suite. The doctor makes a small incision (less than an inch) over the hip, and watching under X-ray, the radiologist maneuvers a catheter into the main arteries supplying the uterus, injecting particles of special plastic to plug up the blood vessels that supply blood and oxygen to the uterine fibroids.

Immediately after the procedure, the fibroids are starved for nutrition, which can cause some cramping, but medication is available to keep the pain under control. I stayed overnight at the hospital, and then returned home the next morning, where I received a call from Dr. Kirsch to see how I was feeling. Total recovery time for UAE is typically one to three weeks. 

At one month, Dr. Kirsch called again to see how I was doing and to inquire about my symptoms at this stage of recovery. I was happy to report significant improvements overall. A two-month ultrasound study showed that my uterus volume, which had been 479cc, was reduced to 331cc, the volume of the fibroid located at top of my uterus (fundal) that was 74cc had reduced to 24cc, and the volume of the fibroid at the neck of the uterus (lus) had reduced from 81cc to 44cc.

Since undergoing the UAE procedure, I have experienced amazing physical and mental relief from knowing my fibroids are continuing to shrink. In addition, my energy level is increasing, I’m able to do more physical exercise, I have a more cheerful attitude and I feel less stress.

Fortunately, throughout my recovery process, Dr. Kirsch was available to answer all of my questions. At three months, he released me back to my gynecologist, but remains totally accessible to answer any questions I or my gynecologist might have. In fact, never have I met a doctor like Dr. Kirsch who is so in tune with a woman’s needs and concerns.

To learn more about current uterine fibroid treatments, refer to my new website www.hopeforfibroids.org  (Dr. Kirsch is the Medical Advisor for the web site) or email me at hopewaltman@paonline.com. You can also contact Dr. Robert Worthington-Kirsch at www.fibroidcorner.com or at 5735 Ridge Avenue, Suite 106, Philadelphia, PA  19128, call him at (215) 508-5261 or e-mail him at kirsch@igsapc.com.

I know firsthand that it is a comfort and a relief to know someone cares and understands what you are experiencing….

(Editor’s Note:  Hope Waltman is a Harrisburg resident and just one of many women afflicted with uterine fibroids. We are honored that she is willing to share her experiences with us, and will be including more articles about her incredible journey and her related research in subsequent issues of Women’s Expressions.) Uterine Artery Embolization – A Local Woman’s Success Story

The Need For Uterine Fibroid Legislation Reform

     Consider This:

-         Thirty percent of women aged 25 to 45 are diagnosed with uterine fibroids.

-         African American women face an even higher incidence of uterine fibroids.

-         According to the Society of Interventional Radiology, approximately 177,000 to 366,000 hysterectomies and 35,000 myomectomies are performed annually for fibroids.

-         In 1997, annual charges for inpatient care for fibroids exceeded $2 billion.

-         Currently, Pennsylvania does not have legislation in place to add alternative fibroid treatments, such as UAE, to Surgical Consent Forms. This means many women are never told about the alternative fibroid treatments that could potentially save their uterus and prevent invasive surgery.

-         Federal Bill H.R. 1672 – Uterine Fibroids Research and Education Act of 2001 – has been introduced in the House, and needs women’s support. You can access the bill at http://thomas.loc.gov/ and show your support for it by calling your Federal Senators and House of Representatives.

-     Support at the state level is paramount.  To find your local legislators, including State Senators and House of Representatives, check under Government Services in the blue pages of your phone book or visit      http://www.legis.state.pa/ or http://clerk.house.gov/members/.

Reference:  Society of Interventional Radiology (SIR) www.sirweb.org

Copyright:  Reprinted by permission of Women's Expressions October 2002 Premiere Issue, Lancaster, Pennsylvania.

Uterine Fibroid Disease:  My One-Year Journey From  Discovery To Recovery  (Part 2)