You Ask, Beverly Johnson Tells

Read the personal testimony of supermodel Beverly Johnson's struggle with fibroids and how she helps other women fight – and win – their battles as the new voice of ask4tell4.

by Nicole D. Smith

January 12, 2009

I n 1974 Beverly Johnson grabbed the spotlight as the first black cover woman for Vogue magazine. Today, the 56-year-old is back in the spotlight but it's in an effort to help the lives of millions of women. Johnson is sharing her personal struggle with uterine fibroids as the voice of ask4tell4, which she says is her new passion. ask4tell4 is an educational awareness campaign about uterine fibroids and the treatment options. Johnson knows all too well about uterine fibroids. Here's her personal testimony, along with Dr. John Lipman, who is founder of the Atlanta Interventional Institute and Medical Director for the center. At the end of Johnson's dialouge, Dr. Lipman joins the conversation to dispel the myths and let the spotlight shine on uterine fibroids.

Atlanta Woman: How old are you?

Beverly Johnson: My life is an open book. If I tried to tell a lie, I couldn't. (laughs) I'm 56 years old.

AW: Why is being the spokesperson for ask4tell4 a priority to you specifically?

Johnson: I had a hysterectomy 10 years ago. I was diagnosed with uterine fibroids at the age of 35. It's very common, but it's also very scary when you're gynecologist says you have tumors. He tries to explain to you that it's benign and that's it's very common in African-American women. 

[But] for me, it was very scary. So, every year during those examinations, there's always this big suspense as to what's it going to look like? [I thought,] "Is it growing?" or "Are there more?"

Then I got to the point where I was in my 40s. I was very symptomatic, with the symptoms being the heavy bleeding ... to the point where I couldn't really leave the home for roughly a year because of the bleeding.

And afterwards I had the hysterectomy, which we'll never know whether I needed it or didn't need it. But, let's just say there were complications from the hysterectomy because it is a major operation.

[I just want women to know] there are a lot of treatments. There are other treatments that can void going through the hysterectomy.

AW: Why is the topic of uterine fibroids not an open-ended conversation?

Johnson: The symptoms are really personal and really uncomfortable, and they are in the uterine and reproductive organs.  ... I'm POSITIVE that my mother had them, and that's why she had a hysterectomy. ... But even to this day, she knows I'm doing this, but she's not going to mention that she had fibroids! (laughs)  And it's just one of those kind of things where we [women] just have to get over that.

AW:   How can we make women aware?

Johnson: For me, I had to start telling a story.

Once I came out of this, which was around a four or five year ordeal because I had a hysterectomy, my ovaries moved, and I had blown menopause. And, I just started telling people where I'd been for the last four or five years. So [my testimony] started to get in print [publications] and then I started doing speaking engagements. And once or twice a year I would go out and speak about my story! And finally I met with a group of people that wanted to take the conversation on a national basis [ ask4tell4]. And I said, "I'm your woman."

AW: You are very health conscientious, and you listen to your body. You've even written the book Beverly Johnson’s Guide to Life with Health and Beauty. So, were you surprised that you were diagnosed with this condition?

Johnson: Yes. I knew about fibroids, you know, out there somewhere. But what I didn't know - and what scared me - was I didn't know why you had them; I didn't know why African-Americans had them disproportionately, that there's nothing that black women can do. I didn't know what happens most of the time is that you get a hysterectomy.

And for me, at the time even if my doctor said some options, I wasn't hearing them because I was so enthralled into where I was at that time, being involved in the symptoms.

AW: How do you stay vibrant so as you get older?

Johnson: Of course I practice eating healthy and exercises. We all know that. I think it's really important for women after a certain age group, to go to a gynecologist once a year for the Pap smear and the mammograms.

I'm just a big advocate of going to the doctor and doing those yearly exams. I think in a way, it not only helps me understand my body, but also have a sense of, "Okay, I'm taking care of myself. I'm loving myself. I'm taking care of myself. I'm being responsible for my own health." And I think that has a lot to do with looking good and feeling good.

AW:   Did you wait to seek help and go to the doctor even though you had symptoms from the fibroids?

Johnson: I did not wait. I always go every year from my exams, Pap smear and everything.

I was diagnosed with fibroids in my mid-30s. I was about 35. And I went [to the gynecologist] every year after that. And there were no symptoms. It wasn't until I was in my 40s [did I have symptoms,] and of course I had my myomectomy. ( A myomectomy is the removal of fibroids. Read below as Dr. John Lipman gives an in-depth definition of a myomectomy below.] That didn't do any good. And then I was so uncomfortable that eventually I had the hysterectomy.  So, I was going to the doctor a lot. And I thought, "This is not normal." ... I didn't really have enough communication with my doctor in the sense of exchanging information.

I didn't even tell my mother or my daughter that I was getting a hysterectomy because I thought, "I'll be in, and then I'll be out." I took my business manager and my boyfriend, who was this holistic guy at the time. ... So, it was after all of the complications, I had the hysterectomy.

AW: What would be your overall message for women - younger, older and middle aged?

Johnson: I want to empower women. I want to empower them with knowledge.

I don't want my daughter - or the one out of three African-American women who will have fibroids - to have that same fear that I had about fibroids. They need to know what they are. And if they do at a later age become symptomatic, then they know all of their options. That's my message.

Go to your doctor as an informed patient, and speak to him because doctors are busy. They don't have the time to teach you everything about the body. Go into the doctor and say, "Have you heard of this?" Or, "Is this right for me?"

And just be really knowledgeable about fibroids.

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Dr. John Lipman Discusses Fibroids

Atlanta Woman: What are uterine fibroids?

Dr. John Lipman:  Fibroids are benign (non-cancerous) tumors that are found in the uterus. They affect one in every three women in the United States and are particularly prevalent in African-American women. Therefore, all women need to know about fibroids, but the knowledge of non-surgical treatment options for fibroids is of particular importance for African-American women. There are two reasons to explain the prevalence of fibroids in black women. The first is genetic; it is more likely to run in African-American families, and obviously there is little one can do about that. The second has to do with body fat. In general, African-American women have more body fat than Caucasian women, who have more than Asian women. This is also the distribution of fibroids by race. Estrogen, which stimulates fibroid growth, is stored in fat. The more body fat, the more estrogen stores which can stimulate fibroid growth. Therefore, eating well and being as trim as possible is not only good for your heart, and for the prevention of Type II diabetes; it is also good for fibroid health.

AW: At what age do fibroids appear and who commonly develops them?

Dr. Lipman: Fibroids take years to develop and grow in to a size that causes symptoms. They are generally diagnosed in women in their 20s and 30s, but are often not a problem clinically until late 30s and 40s. Here again, there is some difference by race. African-American women tend to present earlier in life and have bigger and more numerous fibroids. If a woman has fibroids and no symptoms (such as heavy periods, pelvic pain, increased urinary frequency,) no treatment is warranted, and there is no danger of leaving fibroids in the body untreated. The one exception where fibroids are treated without symptoms is a woman who has had a miscarriage due to a fibroid. This is typically treated before attempting another pregnancy.

AW: What are the symtpoms of fibroids?

Dr. Lipman: Fibroids are very hard and firm tumors. They cause symptoms based on where they are located in the uterus. Fibroids that are located near the lining of the uterus cause very heavy bleeding by stretching the lining and not allowing the lining to heal. The woman can report blood gushing or flooding out, and passage of large blood clots which is often quite painful. This heavy bleeding will often lead to anemia. Anemia causes significant lethargy. A common result is that the woman will chew or crave ice. Rarely, she will crave or chew dirt/Georgia white clay, or even laundry starch (this condition is called pica). Other signs of anemia include migraine-like headaches during her menses, lightheadedness, changes in texture or loss of hair, and heart palpitations. If her fibroids are located toward the front of the uterus they can press on the bladder and cause increased urinary frequency with routine waking (often multiple times) at night to urinate. If the fibroids are located on the sides of the uterus, they will often cause pelvic pain by pressing on the nerves in the pelvis which run along the sidewalls of the uterus. If a fibroid is in the back of the uterus it can press on the colon to cause constipation. Lastly, if the fibroids are low in the pelvis or near the cervix, they can cause painful intercourse.

AW:  Why don't women tend to talk about uterine fibroids?

Dr. Lipman: Primarily, the subject is often embarrassing for women. Their whole life can be tied to their menstrual period. They pad themselves up as best they can to try to work, but they never know when the “big gusher” is going to hit. They often soil clothes and linens. They may be afraid they will lose their job because they keep having to get up at work, or they may not work at all for a day or two each month when the bleeding is at its worst. It obviously interefers at work, but it also interferes at home as well. She is tired and rundown. She can’t exercise, and often gains weight. She doesn’t feel sexual with all the flooding and the pads, and therefore, her relations with boyfriend, spouse, etc. are affected as well. Therefore, we need to encourage women to talk to each other. They are not alone. There are over one million women in the United States that are the “silent sufferers”. They suffer unnecessarily because they do not want a hysterectomy, and are not aware of (or have not been told of) any other treatment option. There are excellent non-surgical treatment options for women, but we need to encourage the dialogue.

AW: Is there any action women can take to prevent uterine fibroids from developing?

Dr. Lipman: No. However, there are certain things one can do to help try to lessen their impact. The most important way we mentioned earlier, and that is, eating well, exercise, and keep as low a body fat as possible.

AW: What options do women have to remove them?

Dr. Lipman: If a woman has fibroids, and has symptoms from these fibroids, such as heavy menses, pelvic pain, increased urinary frequency, she has three main types of treatment available. For mild-moderate symptoms, she can try holistic or natural remedies along with a healthier diet, exercise, and lifestyle modifications. Alternatively, she could be placed on medicines to try to help, such as birth control pills or non-steroidal anti-inflammatories like ibuprofen. For moderate-severe symptoms, she could try uterine fibroid emblization (UFE) which is performed by an interventional radiologist. UFE is performed as an outpatient. This procedure treats all of the woman’s fibroids in about an hour. She leaves the hospital later that day with only a Band-Aid®, and has a four to five day recovery at home. The last option is surgery performed by a gynecologist. One surgical option for women that desire future fertility is myomectomy which tries to remove a number of fibroids surgically and then sews the uterus back together. In a small percentage of women however, due to bleeding or difficulty getting the uterus back together, this can result in hysterectomy which is complete removal of the uterus. Supracervical hysterectomy is another surgical option which is surgical removal of the uterus with the exception of the cervix. The typical recovery for the open surgical options is several days in the hospital and six to eight week recovery at home.

With myomectomy the symptoms will often return because only a subset of fibroids can be removed without jeopardizing the uterus. Therefore, the fibroids that are left behind will often grow, and a woman’s symptoms return. With UFE, all of the fibroids are treated and therefore, they will not return. However, if a woman has a number of years until menopause, she might have enough time to grow new fibroids, but this would take years, if ever. With hysterectomy, since the uterus is removed there will be no return of the fibroid symptoms, but there may be other consequences, for example adhesions from surgery, urine leakage due to weakness of the pelvic floor, and loss of libido.

AW: What causes fibroids?

Dr. Lipman: No one knows what causes fibroids. Fibroids are not indicative of a bigger problem, and they do not turn in to cancer.

AW: Where can women go to learn more?

Dr. Lipman: Women with fibroids can find more information at the US Department of Health & Human Services website at www.4woman.gov/faq/fibroids.htm or to learn more about UFE, www.atlii.com.