By John Morgan, Spotlight Health
With medical adviser Stephen A. Shoop, M.D.

Former supermodel Beverly Johnson enjoyed fame and fortune because of her beauty. But Johnson is all brains when it comes to uterine health issues.

"Hysterectomy is particularly a subject that women need more information because the subject is still sort of taboo," says Johnson, who didn't even tell her mother about her surgery. "Women can really be in the dark about this compared to other health issues because hysterectomy just isn't something we talk about with our spouses or even our daughters."

Johnson knows firsthand about hysterectomy.

"In my 30's, I started getting fibroids, which are very common in African American women," says Johnson, 51. "In 1997 I had some of the fibroids removed surgically. But two years later, in 1999, I was experiencing a lot of pain and heavy bleeding. I was menstruating every day for about a year. The two doctors I consulted both recommended I get a hysterectomy."

Johnson says she bought into the myth that getting a hysterectomy is "normal" after a certain age.

"Some of the teaching that physicians have used for a number of years that hysterectomy solves everything and can treat every menstrual disorder is a fallacy," says Dr. Linda Bradley, an OB-GYN and director of Hysteroscopic Services at the Cleveland Clinic Foundation.

"It isn't that I objected to having the hysterectomy," Johnson explains. "My problem was I really didn't know what I was getting into. I didn't have enough information. I would have liked to know about all the alternatives and options - even though it might not have changed my decision."

To help insure that other women have access to more comprehensive uterine health information, Johnson has signed on as a paid spokesperson to the Healthy U awareness campaign. The program is underwritten by Johnson & Johnson, who provided an unrestricted educational grant to the National Women's Health Resource Center.

According to Dr. Donnica Moore, a women's health expert and President of the Sapphire Women's Health Group, fibroids are "extremely common," affecting one in five women ages 18 to 50. African American women, like Johnson, are three times more likely to get fibroids than Caucasian women.

"The good news is fibroids are generally totally benign tumors and many women don't even know they have them or they are discovered incidentally on exam," Dr. Moore notes.

Johnson, however, had fibroid symptoms, including pain and heavy bleeding.  Other symptoms can include:

• severe menstrual bleeding
• irregular bleeding
• pain, discomfort, including during intercourse
• constipation
• pelvic pressure
• incontinence
• interference with pregnancy or contributing to a miscarriage
• anemia

Option agreement

Treatment for fibroids can include expectant management (watching and waiting), hormonal medications that reduce the size of the fibroids, or surgical options.

Which surgical option is right for a woman depends on several factors, such as:

• What are the symptoms?
• What are her fertility plans?
• Age
• Value system
• Her personal medical history

Uterine artery embolization and endometrial ablation are two minimally invasive procedures for women who are not planning on having more children.

Myomectomy is a surgical removal of the fibroid itself. Traditionally it has been performed as an open abdominal surgery, but it can now be done laparascopically or using a hysteroscope which is inserted through the vagina and cervix.

A hysterectomy is the surgical removal of the uterus and usually the cervix that is attached to it. The surgery is performed over 600,000 times annually.

There are four different approaches to performing a hysterectomy: abdominal or traditional hysterectomy, vaginal hysterectomy, laparascopic-assisted vaginal hysterectomy (LAVH), and the newest procedure -- laparascopic supracervical hysterectomy (LSH) which removes just the uterus but leaves the cervix in place.

Both Drs. Moore and Bradley say inaccurate terminology used by both doctors and patients confuses women as to what a hysterectomy is and what the options are regarding treatment of their fibroids.

"If I remove a woman's uterus and cervix, then I would call that a total vaginal hysterectomy or total abdominal hysterectomy," Dr. Bradley says. "But when a patient hears the word 'total,' she assumes it means her ovaries are gone too."

Generally gynecologists recommend that a woman keep her ovaries if she has not undergone menopause or there are no cancer issues. But depending on several factors, sometimes a woman will have the ovaries and fallopian tubes removed as well.

"Technically this should not be called a 'total' hysterectomy," Dr. Moore says. "It should be called a total hysterectomy with a bilateral salpingo oophorectomy."

"This distinction is important for women to understand and get clear with their doctor," Dr. Moore adds. "Women need to know if her ovaries are going to be removed and if so, why."

That's because up to 60% of hysterectomies are associated with removal of the ovaries.

And not always with sufficient reason.

Life-changing decision

"One thing is for sure, because my ovaries were removed, I went into immediate menopause," Johnson explains. I was not prepared to go into full-blown menopause following the hysterectomy."

"From a doctor's perspective these women are the hardest patients to manage in terms of symptoms and making them happy with the way they feel," Bradley observes.

Menopause symptoms can include:

• Hot flashes
• Decreased libido
• Night sweats
• Skin changes, including acne
• Hair loss
• Thinning of the bones, stiff joints
• Weight gain
• Mood swings
• Vaginal dryness
• Sleep disturbances

"I was depressed. I looked a mess. And I gained weight," Johnson says. "I developed really bad acne after never having had a pimple in my life. I had no sex life. I was anemic and had lost a lot of blood so I was in really bad shape."

"It was very difficult for me emotionally," Johnson adds. "I was constantly seeing my gynecologist trying to figure out something that would work. I tried acupuncture, Chinese herbs, everything."

To help a woman regain her sense of well-being after menopause, medications, like hormone replacement therapy (HRT), can be prescribed. 

"It is important for women to understand that the media controversy was whether women should take long term hormone replacement therapy just for prevention," Dr. Moore points out. "No one is arguing that women who are having menopausal symptoms should not be given HRT."

"Other beneficial interventions can include diet and exercise, holistic therapies, and vitamin supplements," Dr. Bradley notes. "It's a whole multi-faceted approach to re-establish her equilibrium. There's not a magic pill."

Johnson says that her sheer will and diligence finally paid off.

"I just would not give up and I would not accept feeling less than normal," Johnson says. "Eventually, two years or so later in 2001, using doctors and holistic therapy I was finally able to get everything under control. The knowledge of knowing what was happening to my body and why is what empowered me. Understanding is everything to me."

But Drs. Moore and Bradley stress that feeling better begins with taking responsibility for your health.

"If you're not getting answers, don't be afraid to put on your walking shoes and find another doctor," Dr. Bradley urges. "Don't worry about the doctor's feeling. We're used to this - patients should be getting second opinions."

"Educate yourself," Johnson urges. "There is a very informative website - www.healthywomen.org - that has a lot of good information, including a 32-page booklet. My message to women is take responsibility for your own uterine health so you can ask your doctors the right questions."

For more information on hysterectomy, click here.

Spotlight Health is the leading creator of celebrity-featured health-issue awareness campaigns, connecting consumers with impassioned celebrities whose personal health battles can open eyes, dispel myths and change lives. Spotlight Health helps sufferers and caregivers meet the challenges of difficult health circumstances with understandable, in-depth medical information, compassionate support and the inspiration needed to make informed healthcare choices.

Created: 6/19/2003  -  John Morgan & Stephen A. Shoop, M.D.
Reviewed: 6/19/2003  -  Donnica Moore, M.D.