Like countless other women, Therese Jones didn’t initially know what to make of the symptoms she was experiencing.
When she was on her period, she’d experience very heavy bleeding. There was a pain in her abdomen. She was anemic.
“I didn’t really know what it was,” Jones, of Milwaukee, said. “I didn’t think about it too much.”
Now 44, she was 37 at the time.
At her annual appointment with her OB/GYN, she found out right away. Her uterine fibroids were growing.
There was one in particular that her doctor had noticed the year before. But at this visit, the non-cancerous tumor was 10 centimeters larger. Too large to keep being ignored.
The doctor prescribed medication aimed at shrinking the fibroids. The medication stopped her body from producing the hormones that are thought to feed the growths, essentially putting her body into temporary, early menopause.
“It was horrible, I had the sweats, I gained probably 50 pounds,” she said. “And this was right around the time I wanted to have a baby.”
She decided to take the medication and see if there would be any improvement over the subsequent three months. But the time passed with no shrinkage of the fibroid. Another three months, still no change.
At that point, her doctor had to stop giving her the medication. Her only options left were surgical. She could have a myomectomy, in which doctors would cut out the fibroids and leave the rest of the uterus intact. Other options would have made her unable to have children, like a hysterectomy, in which the patient’s entire uterus is removed.
Jones opted for the myomectomy.
Her recovery from the surgery was lengthy: She needed assistance walking and dressing herself for about three weeks. For about four months, she was in pain.
She spent at least a month out of work, unable to run her prominent Milwaukee-based fashion collection. Jones has shown her designs at Fashion Weeks in New York, Los Angeles, Paris and Milan, and has even dressed celebrity clients for the Oscar and Emmy red carpets.
But the surgery worked, and for a while, Jones was in the clear.
Until, about two years later, when she felt the pressure building in her abdomen again.
Her old doctor had moved, so Jones set up an appointment with Dr. Marie Forgie, an OB/GYN at Aurora Sinai Medical Center. Forgie confirmed Jones’ suspicions: Her fibroids were growing back.
“Little monsters in there,” Jones thought.
A less invasive, less painful option
Jones was not only more aware of her fibroids the second time they started growing; she had also learned of a different, potentially less painful way to treat them.
She first heard about new efforts to treat fibroids while watching the Real Housewives of Atlanta.
Many of the shows cast members have talked openly about their experiences dealing with uterine fibroids, including Kandi Burrus and Cynthia Bailey. Bailey had her fibroids removed through a less-invasive procedure called uterine fibroid embolization. The procedure blocks the blood flow to the fibroid, cutting off its supply of nutrients and causing it to shrink.
Jones mentioned the housewives to Forgie. Was there something less invasive that she could try this time around?
It turned out the doctors at Aurora Sinai had a different, but equally appealing treatment available. The hospital had actually become quite well-known for performing it.
The minimally invasive surgery, called radiofrequency ablation or (its trade name) Acessa, uses radiofrequency energy and heat to shrink fibroids to the point where they are much smaller, and can even be reabsorbed into the healthy uterine tissue that surrounds them.
“Even if the fibroid is still there, it changes the consistency of the fibroid from something like a baseball to something like a marshmallow. It’s a lot softer,” Forgie said. “Then it’s less likely to cause pressure on things like your bladder or other structures within your pelvis which then, of course, is less likely to cause you pain and discomfort.”
Instead of a large abdominal cut, staples and a long recovery time, doctors would only have to make a few small laparoscopic incisions to perform the surgery. In the year following the surgery, the fibroids can continue to shrink even more, Forgie said. Most patients go home the same day as the surgery and are back at work in three to five days.
In January of this year, Jones told Forgie she was going to opt for the Acessa procedure. The fibroids were continuing to grow, and the symptoms were getting worse.
In early April, she got the surgery.
“I came out of surgery feeling the pressure gone,” she said. “As soon as I woke up, I was like ‘Oh! They’re gone!'”
She was sore for a couple days. After a week and a half, the cuts were healed, and Jones was back to her life.
Fibroids have a disproportionate impact on Black women
Fibroids are very common, with some experts estimating 50% of people with uteruses will develop them at some point in their lives. Others estimate up to 70% or 80% of women will develop them at some point.
It’s not known what causes fibroids. Doctors also don’t know of concrete measures that can help prevent them.
The benign tumors appear during a person’s childbearing years. For many people they shrink after the person enters into menopause, according to the Cleveland Clinic. Fibroids are rarely cancerous. But they can cause many other problems for people who have them.
“Sometimes they’re small and they don’t really impact a person at all. But sometimes they can grow to be quite large and someone may not even know that they have them,” Forgie said. “They may just be living with these really heavy or really painful periods. And so what I’ve seen often is that women will have these horrible periods and think that it’s just normal.”
While people of all races and backgrounds develop fibroids, the tumors are disproportionality common among Black women. A March 2014 research review in the American Journal of Obstetrics and Gynecology estimated more than 80% of African American women will have fibroids by the age of 50. The tumors are also known to be larger than average in Black women — more likely to cause symptoms like abdominal pain, heavy menstrual bleeding and bloating — and they seem to appear at younger ages, according to the Mayo Clinic.
More:Medical bias: From pain pills to COVID-19, racial discrimination in health care festers
Black women are also more likely than women of other racial backgrounds to be hospitalized because of their fibroids, and more likely to have to get myomectomies, the surgery Jones first had, and hysterectomies because of them.
Recurring fibroids are the no. 1 reason for hysterectomies in the US, according to Johns Hopkins Medicine. According to data from Hologic, the women’s health-focused medical device company that owns Acessa, of the 2.1 million women annually seeking treatment for fibroids, roughly 240,000 women every year choose to have a hysterectomy.
Increasingly, however, women are calling for more conservative treatments for these painful growths.
“I think that people deserve options,” Forgie said. “And people are coming in expecting options, as they should. So it’s really nice to have another tool that can help treat their symptoms but also not take them out of their lives for quite as long.”
Aurora Sinai docs fight for change, and fewer hysterectomies
As with any new medical treatment or technology, there are some concerns with the Acessa procedure that still have to be worked out.
It is possible that the fibroids can come back. The only treatment where fibroids cannot grow back is the hysterectomy.
Forgie also noted that while women can become pregnant after getting the Acessa procedure, and experts have seen that the surgery doesn’t appear to impact pregnancies, there is still not enough clinical data to support recommending the option to women who are considering future fertility.
The procedure is approved by the US Food and Drug Administration and is recognized by the American College of Obstetricians and Gynecologists as an evidence-based treatment for fibroids.
One of the biggest barriers to making the procedure more available to interested patients has been making sure that the procedure is covered by insurance, said Tyler Roosa, a territory manager for Hologic who focuses on southeast Wisconsin.
When Hologic acquired Acessa in 2020, some 20% of procedures were being approved for insurance coverage. Now that percentage is up to 65%, Roosa said.
In particular, Forgie and her colleagues at Aurora Sinai have worked to establish the hospital as a destination for the procedure. Aurora Sinai was the first hospital in the state to buy the technology so doctors can perform the procedure routinely.
OB/GYN’s there have also fought to convince more insurers — public and private — to cover the treatment for their patients. In January, the state Department of Health Services added coverage for the procedure to Medicaid and BadgerCare Plus members following the doctors’ advocacy. Forgie said the hospital continues to work with insurers to help get the procedure covered, even if it’s not listed as covered to begin with.
Forgie said that she wants women to know that they don’t have to just suffer through dealing with their fibroids.
“Women are notorious for just putting their health care aside and being caretakers for other people,” she said. “I want people to know right away that they don’t have to suffer and that their health is important.”
Today, Jones is back to traveling the world, running her fashion design business. Though dealing with her fibroids has delayed plans to grow her family, she still hopes to do so.
She said she feels “amazing,” and wants more women to advocate for the health care they need.
“Listen to your body,” she said. “If you feel something that’s wrong, go get it checked.”
Symptoms and resources
For many people, uterine fibroids do not cause symptoms. But in the cases where they do cause symptoms, these are among the most common, according to the Mayo Clinic:
- Heavy menstrual bleeding
- Menstrual periods lasting more than a week
- Pelvic pressure or pain
- Frequent urination
- Difficulty emptying the bladder
- Backache or leg pains
You should see your doctor if you have:
- Pelvic pain that doesn’t go away
- Overly heavy, prolonged or painful periods
- Spotting or bleeding between periods
- Difficulty emptying your bladder
- Unexplained low red blood cell count (anemia)
More information about the Acessa procedure is available here: https://gynsurgicalsolutions.com/patients/treatment-options/acessa/
A guide on fibroids and various ways to treat them is available here: https://www.hopkinsmedicine.org/health/conditions-and-diseases/uterine-fibroids
Q and A on fibroids and menopause from the Cleveland Clinic: https://health.clevelandclinic.org/uterine-fibroids-after-menopause/
Contact Devi Shastri at 414-224-2193 or [email protected] Follow her on Twitter at @DeviShastri.