Many Black women are told a hysterectomy is the answer for fibroids – but health professionals are now working to change that.
If you visit the Atlanta Fibroid Center website, you will see pages of testimonials from mostly Black women who no longer live a miserable existence of heavy bleeding, unbearable cramps and planning their lives around their periods.
Dr. John Lipman, the center’s founder and medical director, has made it his life’s work to eliminate this suffering
“Looking at fibroids today, one of the biggest medical breakthroughs today for women is uterine fibroid embolization, or UFE. I put it right up there with the PAP smear and mammogram. It is that significant and transformational,” said Lipman.
UFE is a minimally invasive procedure used to block blood flow to fibroids, causing them to shrink. Lipman has been doing UFE for the last 25 years.
“Hysterectomy is the second most common surgery done in the United States— which is staggering because half the population doesn’t even have a uterus. The most common reason for hysterectomies is not cancer of the uterus which would obviously be appropriate, but for these benign fibroids,” said Lipman.
Lipman recalled speaking at Tuskegee University, and afterwards three young women came and tearfully spoke with him because they all had hysterectomies before the age of 30. “If you look at it racially, White women get hysterectomies for cancer, Black women get them for benign fibroids and the average age for hysterectomies is less than 40,” said Lipman.
“Looking at fibroids today, one of the biggest medical breakthroughs today for women is uterine fibroid embolization, or UFE. I put it right up there with the PAP smear and mammogram. It is that significant and transformational.”
Lipman questions why young Black women are essentially being amputated for a benign disease. He is unable to make sense of it, because UFE has a proven history of safety and efficacy. He has been performing the procedure for 25 years yet sees women every day in his office that have never been told about UFE. “We have studies that in general prove most gynecologists do not mention it as an option, even though it could end the suffering, which is why I say it is the Tuskegee experiment of our lifetime. Instead of poor Alabama sharecropping men, we have women of all different socioeconomic strata not being informed of the viable option that can help them end their suffering,” said Lipman.
The website of the Atlanta Fibroid Center has page after page of testimonials from women who are elated and grateful for their UFE results. They speak of freedom from painful and heavy periods, no longer suffering from anemia and in more than once case how they had never been told about UFE. A great number of his patients learned of the procedure through friends or because they researched on their own, not referrals from their gynecologists. There are over one million women in the United States today that suffer from symptoms as a result of fibroids.
“We call them the silent sufferers. They sit on the sidelines with these horrible symptoms, most notably heavy menstrual bleeding that is like a horrific crime scene, blood running down their legs, and they do not want hysterectomies!” said Lipman.
Depending on where fibroids are located in the uterus, they will cause different symptoms. If they are at the front of the uterus they sit on the bladder and cause urinary frequency. If they are beneath the lining of the uterus, they cause heavy menstrual bleeding. If they are on the lateral they cause pelvic, abdominal, back and sciatica pain and discomfort during sex.
“It can be a miserable existence when everything a woman does has to revolve around these tumors – going swimming, carrying extra clothes, being scared to sit on their girlfriend’s couch because they might bleed through the upholstery,” Lipman lamented. “Not to mention the anemia and fatigue and feeling physically drained from losing so much blood.”
Lipman referred to a study in the Journal of Women’s Health in 2013, looking at why women are not coming forward to get treatment for fibroids. It revealed that most women did not want to get hysterectomies, but were not being told about UFE. Lipman is passionate about spreading the word that hysterectomies should be the treatment of last resort as treatment for fibroids.
“A hysterectomy is entirely appropriate as a treatment for cancer, but no matter what your gynecologist tells you, suffering from symptomatic fibroids does not mean you have to have a hysterectomy,” said Lipman.
In the early 1990s, a group of physicians in France came up with the idea to embolize fibroids ahead of performing hysterectomies, to make the surgery easier. Health care is socialized in France, which means elective health care may take longer to receive. Lipman described how women would have their tumors embolized, and while they were waiting the six to eight weeks for their elective surgery their symptoms disappeared. This meant a hysterectomy was no longer necessary.
The French physician shared these results with his American counterpart, who shared them with the interventional radiologist. Dr. Scott Goodwin, who was the chief of Interventional Radiology at UCLA at that time, performed the first 11 UFEs for fibroids in the United States. Goodwin presented his medical data on the first UFEs at a national meeting in Chicago where Lipman was invited to talk about his experience with embolization of liver cancer.
He says it was divine intervention.
“I would not even normally go to this meeting, in fact I haven’t been back since, but God put me there to listen to that presentation. I thought to myself ‘Now I know what I’m meant to do,” Lipman recalled.
Lipman has made it his life’s work to end hysterectomies as treatment for benign disease. His mission is to educate women about all of their options. It is available throughout the country and is covered by insurance, but he continues to meet with women who have never been told anything about it. He believes that one reason many women are not being told by other physicians is economic; surgeons will want to perform surgeries. Surgery is more lucrative. There are physicians who, when asked about UFE will tell their patient that they do not perform the procedure and they’ll have to go elsewhere.
“Absolutely that is what a woman should do if she is told a hysterectomy is her only option. I would encourage her to seek a second opinion from an interventional radiologist, to learn about all her options,” said Lipman.
Lipman’s mission is not only to educate women about the option of a UFE, but the possible physical and mental ramifications of undergoing a hysterectomy.
“There are a lot of changes that happen with hysterectomy that many women do not want to talk about. There are psychological changes and sexual dysfunction and it’s embarrassing to talk about – whether it’s loss of the ability to orgasms or loss of libido altogether,” he told the AFRO.
“There’s bone loss, weakening of the pelvic floor muscles, which leads to urinary leaking and having to wear adult diapers at age 35 or 40. I just want women to know there is a non-surgical option. UFE is a half hour procedure where you come home with a band-aid and recover in about five days,” said Lipman.
Sarah Crest, 68 of Baltimore had UFE when she was 44 years old. She was experiencing excessive menstrual bleeding.
“I would go through a tampon and a big pad every 90 minutes or so,” said Crest. She finally went to her doctor to discuss some options for relief. Her doctor suggested hysterectomy as a first option because she was not planning to have children. “I did not want to do that because a hysterectomy is major surgery and I felt I should not have to do it if there were other options. I learned about UFE from someone on my job, and I had to present the option to my doctor,” continued Crest. She would go on to have the procedure, which relieved her symptoms.
Lipman wants to dispel myths associated with UFE. Myths like you should not have the procedure of you plan to have children. Or if you do not plan to have children you may as well get a hysterectomy because you don’t need your uterus anymore. Or that fibroids are too large or too numerous to have UFE. “All these are myths and do not prevent you from having UFE,” said Lipman.
Lipman recognizes the South and the health care system in general has not historically treated Black people well. His mission at the Atlanta Fibroid Center is to do his part to make sure that does not happen any longer. The prevalence of fibroids is one of the many disparities in health care particularly in regard to Black women.
“We need to do more research. In 2020 there was 18 million dollars spent on fibroid research, which may sound like a lot, but it ranks in the bottom 50 out of 300 common medical conditions in terms of funding,” said Lipman. “I just want to help women get their lives back.”