Q&A Treatment for Uterine Fibroids

Sept. 3, 2004 -- The following questions were submitted to ABCNEWS.com in response to 20/20's story on uterine fibroids and fibroid embolization broadcast Aug. 27.

For more information on embolization treatment for uterine fibroids, visit the NUFF Web site at http://www.nuff.org or call NUFF toll free at 1-800- 874-7247.

Kim from Ohio asks:My periods have become impossible to bear. I bleed through everything and the pain lasts two to three days. I don't know if I have fibroids or not so what procedure is used to detect them?

Carla Dionne:

Please see your gynecologist and share your bleeding concerns with him/her as soon as possible. After evaluating your bleeding situation and doing an in-office exam, your gynecologist may want you to have a variety of tests. An endometrial biopsy can help rule out uterine cancer. You may also undergo an ultrasound or magnetic resonance imaging (MRI), which can help determine the presence, size, and location of fibroids in the uterus.

Mary from California asks:Where can I find more information on uterine fibroids and treatment options? Are there any support groups for women with fibroids?

Carla Dionne:

More information on uterine fibroids and treatment options may be found on the Web site for the National Uterine Fibroids Foundation at http://www.nuff.org. In addition, you may want to call our toll free number and leave your name and mailing address to receive a packet of information in the mail. 1.800.874.7247.

There are a wide variety of support groups available online for women with fibroids. We sponsor one such group and you may join (it's free!) at: http://health.groups.yahoo.com/group/uterinefibroids. This support group also contains a large amount of up-to-date information on research, surgical photos, a physician database, and answers to wide range of frequently asked questions about fibroids and treatment options.

In person support groups are also available in many major cities across the U.S. Sign up to attend local Uterine Fibroids Meetups here: http://uterinefibroids.meetup.com

Gina from Missouri asks:

Does Kansas City, Mo., have this new procedure available? How do I know I'm a candidate for embolization and how do I find local doctors able to perform this procedure?

Carla Dionne:

Yes, this procedure is available in Kansas City — and almost every major city in the United States! Ideally, your gynecologist would currently be working with or know a local interventional radiologist skilled at performing fibroid embolization and refer you for a consultation to help determine whether or not you are a candidate for the procedure. However, as you learned from the 20/20 story on this procedure, many gynecologists are choosing NOT to refer patients. If this is your situation, the Society of Interventional Radiologists (SIR) has a Doctor Finder available to the public online which you may find helpful. Go to: http://www.sirweb.org to use the SIR Doctor Finder. Since Interventional Radiologists perform a wide variety of medical procedures, please be certain to check the Area of Expertise box for UFE/Uterine fibroid embolization on the search form prior to clicking the Search button. While a referral from your gynecologist is the ideal way to locate an interventional radiologist who performs fibroid embolization, if that is not possible (and depending on your insurance plan) you may contact an interventional radiologist directly on your own to schedule a consultation.

Lee from Tennessee asks:

I have extremely heavy bleeding due to fibroids. My gynecologist wants me to have a hysterectomy. When I asked about fibroid embolization, he said it leaves necrotic (?) tissue inside. Is this true?

Carla Dionne:

Necrotic tissue is simply dead tissue. With embolization, fibroids do die, or "necrose," and that dead tissue then shrinks in size as it loses its blood supply. Over a long period of time, the body converts those dead fibroids to a type of internal scar tissue. Necrosis actually occurs in the vast majority of women who have fibroids that are never treated. As a woman enters menopause, the decrease in hormones may influence the size of blood vessels in the uterus and the blood flow to fibroids. This typically results in the slow death of the fibroids. Since nearly 80 percent of all women have uterine fibroids (with only 25 percent to 30 percent of them symptomatic and requiring treatment), fibroid necrosis is considered part of the normal aging process by gynecologists and is not considered dangerous. Any gynecologist who indicates necrotic fibroid tissue left inside may be dangerous, especially while in the single-minded pursuit of convincing you to choose hysterectomy, may be a gynecologist worth reconsidering in your pursuit of informed consent regarding fibroids and treatment options! Always, always, seek out a second opinion and learn as much as you can about your medical situation and the options available to you before choosing a treatment.

Jody from California asks:

Is this procedure similar to an endometrial ablation? I am scheduled to have the ablation procedure soon, but have reservations.

Carla Dionne:

Endometrial ablation and fibroid embolization are similar in that both procedures are designed to stop abnormal bleeding. Endometrial ablation is a procedure performed by gynecologists using special tools that remove the endometrial lining — the inner lining of the uterus. Endometrial ablation can be an excellent treatment for abnormal bleeding — but not when fibroids are present. The fibroids must be treated separately first, using either embolization or surgical removal (myomectomy).

Cathy from Ohio asks:

What is the risk of the tiny plastic particles that are injected into the arteries traveling to other parts of your body — heart, lungs, or brain? I'm in my mid-forties and the risks that I've seen mentioned in brochures doesn't concern me (sterilization, hysterectomy, etc.) But nothing is mentioned about the risk of the foreign objects in your system.

Carla Dionne:

In fibroid embolization, a narrow, flexible tube called a catheter is passed through the femoral artery in the groin and guided to the uterine artery. Once there, tiny plastic particles (polyvinyl alcohol particles or PVA) the size of grains of sand are slowly released into the blood vessels feeding the fibroid. These embolic particles wedge in the blood vessels and do not travel to other parts of the body. The particles block the blood flow to the tumor, causing it to shrink and die. In extremely rare cases, misembolization — or embolization of a blood vessel other than those leading to fibroids — has occurred, causing injury to the buttocks, kidneys, or leg. None have resulted in particles traveling to the heart, lungs or brain OR resulted in death.

Polyvinyl alcohol (PVA) is a non-toxic, biodegradable material commonly used in food processing, cosmetics, and as a soluble carrier for pharmaceutical agents, such as eye drops and oral drugs. As a plastic, you may be more familiar with polyvinyl alcohol as the material substance used in contact lenses — a product that millions of people place in their eyes every day.

PVA is also a component in the manufacture of cold and hot water soluble laundry bags, detergent packets and for warp sizing in textiles. We pop it in our eyes, slather it on our faces, wear it in our clothes, and use it to process our food. In fact, the U.S. is one of the largest importers of PVA in the world...tons upon tons upon tons of it is used in a variety of ways, not simply for fibroid embolization.

No allergic or adverse reactions to polyvinyl alcohol (PVA) particles have been reported in over 30 years of embolic use in the human body. It is true that PVA particles are "foreign objects." However, many substances — not native to the body — are used in surgery every day. "Good materials" share one common property — the body has a minimal reaction to their presence. This is a characteristic of the metals used in hip replacement, the mesh for arterial grafts, PVA particles and others. Though the studies that are conducted over short periods of time give a clue as to how "non-reactive" these substances are — it is the long term experience that gives us more assurance they will not be harmful. The long term experience with polyvinyl alcohol particles has been positive with a reassuring safety record.

Lisa from Ohio asks:

Is there anyone who would NOT be a good candidate for UFE?

Carla Dionne:

Yes, there are a number of medical situations where UFE may not be appropriate or the best choice for treating fibroids. For instance, if your fibroids are not causing you any problems at all, treatment of ANY kind is generally unnecessary.

If you are experiencing symptoms caused by a submucosal fibroid, a fibroid growing on the endometrial lining on the inside of the uterus, a hysteroscopic resection (a type of outpatient vaginal myomectomy) may provide the relief you need AND remove the fibroid entirely.

Pedunculated fibroids are fibroids that grow from the uterus on a stem, resembling a mushroom. If the stem to the fibroid is narrow, then treatment with embolization is not recommended. Instead, these fibroids may be removed surgically through your belly button by a gynecologist skilled in laparoscopic myomectomies.

Laparoscopic and hysteroscopic myomectomies are performed by gynecologists who specialize in using tools that eliminate the need for a major incision and have very special (and very small!) cameras attached to view the fibroids during the procedure. To locate a gynecologist who specializes in these types of myomectomies, you may want to use the Find A Physician link on the American Association of Gynecologic Laparoscopists' Web site: http://www.aagl.com.

If a single fibroid is particularly large OR your fibroid laden uterus is larger than 24 weeks in pregnancy size, you may want to consider myomectomy to surgically remove the fibroids instead of embolization. With embolization, symptoms such as abnormal bleeding and urinary incontinence may be resolved — but particularly large fibroids may not shrink to a desirable size for some women. If a "flat tummy" is one of your goals in seeking medical treatment, myomectomy to remove the fibroids entirely may be a better treatment choice for you.

If future childbearing is important, then embolization should be chosen carefully and only after the risks and benefits of a myomectomy (surgical removal of the fibroids) versus embolization are considered. Based on your own individual case and the number and location of fibroids you have, embolization may offer lower risks towards future childbearing. However, research on fertility risks with either myomectomy or embolization is limited and both procedures may result in the inability to carry a child or the need to seek out expert obstetric care to oversee any risk issues that may arise during a pregnancy and delivery.

Sandra from Illinois asks:

I am a 61 yr old postmenopausal woman with bleeding caused by fibroids. I am currently taking hormone replacement therapy to control the bleeding. Which is the better, safer cure — HRT or fibroid embolization?

Carla Dionne:

First of all, as a postmenopausal woman, you should NOT be bleeding. Furthermore, HRT is not generally considered a treatment for uterine fibroids.

Women with fibroids who choose to take HRT after menopause may find continued fibroid growth and/or bleeding. Discontinuing HRT for a period of time MAY stop both the bleeding and the growth of the fibroids. However, as we age, our risks of other uterine diseases, including cancer, does increase and abnormal bleeding postmenopausally is a symptom deserving serious attention. Please speak to your gynecologist about an endometrial biopsy and diagnostic imaging of your uterus for further evaluation of your bleeding situation. Because of concern that something other than fibroids may be the main cause of postmenopausal abnormal bleeding, fibroid embolization is not generally performed on postmenopausal women.

Janet from Oregon asks:

Too late for me, I had a hysterectomy 2 years ago. I struggled with extreme pain, bleeding, missed work, misery, misery, misery for years. I don't regret my hysterectomy for one minute. I have never felt better!

Carla Dionne:

The hysterectomy has been performed for over a hundred years in the United States and has helped millions of women regain a productive life. Given the severity of symptoms many women experience, a hysterectomy may well be a huge improvement to their lives. However, as with all fibroid treatments, hysterectomy is not without risks. Many women suffer complications and long term health issues that result in an overall decline in their medical situation after hysterectomy and, well, simply aren't as lucky as you were Janet.

However, now that we've entered into the 21st century, isn't it amazing that so many variations on fibroid treatment have been devised for treating so many individual medical situations! And, isn't the advent of fibroid embolization to avoid surgery altogether absolutely mind boggling!

Weighing the risks and benefits of each treatment may be a daunting task to many women — but, one thing we DO know is this: hysterectomy is non-reversible and results in the removal of the uterus and all of it's potential health benefits forever. As a treatment option for fibroids, the hysterectomy bears the greatest number of risks, short and long term, to any given woman. Because of this, it is my perspective that hysterectomy should be the treatment of first resort for cancer — but LAST resort for all other benign uterine conditions.

That said, every woman must evaluate the risks and benefits of each fibroid treatment option against her own individual fibroid circumstances. One size does NOT fit all — not in T-shirts and certainly not with medical procedures currently available for the wide variety of fibroid situations uniquely present in each individual woman.