Marcia
BEFORE UFE:
I had never heard of uterine fibroids until I was diagnosed with them in 1991 following several months of experiencing heavier and longer periods. I was in my late thirties and remember being relieved with the diagnosis, thinking "no big deal," at least it wasn't something more serious. Little did I know the problems these non-cancerous tumors would cause – affecting my health and lifestyle for the next nine years!
Not wanting a hysterectomy, in 1992 I opted for a myomectomy – surgical removal of the fibroids. My gynecologist warned me they might grow back. He was right. About five years after the myomectomy, my periods got heavy again, and more than one doctor advised me that there was nothing left to do but get a hysterectomy. I still wasn't ready for that, and decided to "just put up with it."
I had heard about UFE - uterine fibroid embolization - on a national news program. They interviewed women just like me, who were suffering from fibroids but who wanted to avoid a hysterectomy at all costs. UFE was touted as an alternative -- an operation where plastic particles were inserted into the arteries that "feed" the fibroids. By blocking the blood supply, the fibroids would starve and eventually shrink. Most important to me was that the uterus would remain intact, and that UFE was a much less invasive operation than a hysterectomy.
By 1999, my situation was becoming intolerable. One fibroid was so big it started pressing against my bladder - causing pain and frequent trips to the bathroom. My periods could only be described as horrible -- very bloody and clotty -- lasting ten days and longer. I hadn't been to a gynecologist in more than a year because I didn't want to be told again that I should have a hysterectomy. I made an appointment with my primary doctor who checked me for anemia after I told her about my heavy periods. The test results were so alarming -- she wanted to hospitalize me immediately and give me a blood transfusion! I didn't realize how serious the situation had become.
My hemoglobin was 5.7 when it should have been between 12.0 and 15.6. My hematocrit level was 18.9. Both levels were less than half what they should have been. I avoided hospitalization by taking iron supplements, but because I was still bleeding so heavily, improvement was slow in coming. I was tired all the time and I could no longer take my daily walks. No longer were the fibroids effecting my periods -- now they were effecting my overall health.
After nine years, I could not put up with this any longer.
I found out that UFE was being performed at Methodist hospital in San Antonio. I contacted Methodist and was put in touch with Dr. John Thomas.
UFE and AFTER:
Dr. Thomas and Dr. William Shea were very patient in explaining UFE to me through e-mails, phone calls and a visit to the Methodist radiology department. They studied my pelvic ultrasound and MRI told me I was a good candidate for the procedure. They explained to me again how it worked: small particles would be inserted by catheter into the arteries that feed the fibroids. The particles would cause a blockage, meaning blood could not get to the fibroids. Once the blood flow was cut off, the fibroids would begin "dying."
I learned that the procedure would take less than an hour, which was good news. I was also very happy to learn I could remain awake during the operation. I could choose between conscious sedation and epidural anesthesia, which is what some women get during labor and delivery.
Dr. Thomas said I would probably feel pain from the procedure – although the amount of pain varied widely from woman to woman. Of course, I had numerous questions: Would the particles stay where they were supposed to? Would the fibroids eventually disappear? Would I still have periods? Could I still become pregnant? What was the long-term prognosis?
All the questions were answered to my satisfaction and I decided to go ahead with UFE. Once I made the decision, I called Dr. Thomas was able to schedule the procedure that same week.
Everything went very much how it was described to me. Before the operation, a blood test was done, an IV was inserted, a urinary catheter inserted, and Dr. Thomas came into the prep room and talked to me to make sure all my questions were answered. I was put on a stretcher and wheeled to the large room where the procedure would be performed.
By the time things got underway I was sufficiently sedated, so my recollection of the event is rather fuzzy. I had been placed on a table next to some type of monitor or screen, I could hear people talking, someone began inserting a catheter (NOTE: that was me) into my upper right leg, someone asked how I was doing. I was very relaxed and felt no pain during the procedure.
I had been told that toward the end of the procedure I might begin feeling discomfort, which I did. I was told not to move my right leg as the catheter was taken out, and to keep the leg still afterwards. The pain increased, I remember telling someone that if they didn't want me to move my leg they better give me more drugs!
Thinking back, the pain was no worse that bad menstrual cramps -- still I was rather uncomfortable as they slid me to another stretcher and wheeled me up to my room.
I'm not one to tolerate any amount of discomfort if I don't have to, so that first day I used my pain pump liberally (I was assured there was no way to accidentally overdose myself. NOTE: this is true, the pump is set so that you cannot overdose yourself no matter how many times you hit the button) My temperature and blood pressure were taken periodically; I slept the rest of the day and didn't feel like eating.
By the next morning the pain was under control with medication. I guess I experienced a reaction to the medicine because I threw up three times. Because of that -- and because I still had a fever -- it was decided that I would stay in the hospital another night.
The following morning I was feeling much better. I was anxious to go home and was discharged that afternoon. I was given a prescription for pain medicine and told the slight fever I still had was to be expected.
Dr. Thomas had said some women are ready to return to work by the fourth day -- but that wasn't the case with me, mainly because my fever lingered for another four or five days, and I was weak from being so anemic. I had slight abdominal pain, but nothing that couldn't be controlled by medication. I was able to drive, but most of the time I stayed home and read or watched television. A week after the procedure, I went to the mall -- a good sign that I was getting back to normal!
After returning to work, I experienced a general weakness in my right leg, and numbness in the toes. Dr. Thomas thought a nerve may have been bruised during the procedure and that the weakness would be temporary. It lasted about ten days and then went away completely.
In the two months since the UFE was performed, my bleeding has stopped. My iron level is rising steadily. Hemoglobin is up to 7. Hematocrit is at 24. I have so much more energy. I haven't had a period, but I'm not worried because physically I feel so much better. I can already feel that the fibroids have gotten smaller. Dr. Thomas says they'll keep shrinking and will eventually become scar tissue.
All in all, I am very happy with the outcome of UFE. Life is better now that I'm not incapacitated every month by horrible bleeding episodes. My iron levels continue to improve, my strength is coming back -- all this and I didn't have to undergo a hysterectomy! I feel lucky that UFE was available to me. I'm sure I made the right choice.
-Marcia
3 months after UFE
Good news! Just received fax with the results of my blood work:
hemoglobin 12.2
hematocrit 37.6
(NOTE from Dr. Thomas: These values are normal)
