BY KAREN ANGEL
After five years and eight doctors’ opinions, I finally found a surgeon who said she could remove my uterus laparoscopically.
At 1,300 grams, my fibroid-laden uterus had grown to 10 times the size of a normal uterus, which typically resembles an upside-down pear. I looked about seven months’ pregnant.
The fibroids didn’t cause painful symptoms, so my longtime Manhattan gynecologist had advocated a wait-and-see approach. Unfortunately, over the years of waiting and seeing, my uterus grew too large for all but the most specialized and skilled surgeons to remove.
My fibroids and uterus were also too large for less-invasive procedures such as radiofrequency laser ablation (use of radiofrequency energy to destroy fibroid tissue and the blood vessels that feed it), and uterine artery embolization (injection of particles into the arteries that supply the fibroids).
Although the Hudson Valley, where I moved nine years ago, is only 90 minutes from Manhattan, the gynecologists I saw there seemed stunningly ignorant about minimally invasive treatment for enlarged uteruses. One, then the head of his department at a large regional practice, said my only option was an abdominal hysterectomy with a vertical scar, the most invasive and disfiguring version of the operation.
Another said I could try a myomectomy (surgery to remove the fibroids, leaving the uterus intact), although this method leaves women with many large fibroids vulnerable to bleeding and infection, carries similar risks to an abdominal hysterectomy, and has no known advantages for those past child-bearing age, like me. The same doctor told me the only way to know whether any of my fibroids could be removed laparoscopically was to open me up – although the standard diagnostic test for fibroids, a pelvic MRI, can pinpoint their size and location.
A third said gynecologists no longer perform morcellation, which allows enlarged uteruses to be removed through small incisions by dissecting the tissue, because of concerns about spreading potentially cancerous tissue. But a technique called in-bag morcellation that addresses those concerns by collecting tissue in a bag before removal has been used successfully for years.
“Patients are often not given all of their options, and many OB-GYNs are not even familiar with all the options available,” says Dr. Erica Stockwell, a gynecological surgeon in Las Vegas. “I could go on and on and on about this.”
So could I.
There were also two disappointing doctor visits in the city. Based on a pelvic ultrasound, a robotic-surgery specialist I saw at NYU Langone told me that my uterus was one of the very rare ones that is so wide there’s no room in the abdominal cavity for the instruments (I subsequently learned that because the laparoscopic-surgery instruments fit, the robotic-surgery instruments would have fit, too). Neither he nor the doctor I saw after him offered a referral or any suggestions on how I could proceed.
I had tracked the robotic specialist down after a surgeon at Montefiore Medical Center told me she could remove my uterus via a small bikini incision. It was still open-abdominal surgery with all the attendant risks and longer recovery time, so I had kept looking. But after being turned down for robotic surgery, I found myself back in her exam room. When I asked her whether laparoscopy was an option, she said, “Why would you want to take the risk?” – although the only comparatively higher risk is injury to the lower urinary tract, and that occurs in only about 1 percent to 2 percent of laparoscopic hysterectomies, according to research. Nor did she mention that she has a colleague who routinely performs laparoscopic hysterectomies on grossly enlarged uteruses with great success.
“We teach that referral should always be offered if an M.D. is not capable of performing a needed or desired medical procedure,” says Dr. Louise King, an assistant professor of obstetrics, gynecology, and reproductive biology at Harvard Medical School in Boston who teaches a course on informed decision-making. “I can’t imagine another ethical option. We need to make clear to patients what we are and are not capable of doing, and for elective procedures, referral should be offered if we’re not able to do something.”
Montefiore Medical Center declined to explain why one of its surgeons didn’t refer me to a colleague who performs the type of surgery I wanted. Apparently, it’s a common lapse.
Dr. King often sees patients with severe disease or botched surgeries that would have been much easier to treat or correct if they had been referred to her earlier. She believes that many gynecologists operate infrequently because reimbursement rates for gynecological surgery are low — nearly 30 percent lower than for male-specific surgeries – and advises women to seek out gynecological surgeons who have done a two-year minimally invasive surgery fellowship or have a high volume of surgery.
Of course, the surgeon must also accept your health insurance, which adds yet another wrinkle to the search. But there are a few online tools that can help. The largest professional association for minimally invasive gynecological surgeons, AAGL (formerly known as the American Association of Gynecologic Laparoscopists), maintains a searchable database of more than 7,000 surgeons around the world. The American Institute of Minimally Invasive Surgery keeps a limited database of surgeons and hospitals qualified to perform difficult laparoscopic procedures. C-SATS (Crowd-Sourced Assessment of Technical Skills), a surgery performance-management system bought by Johnson & Johnson in 2018, has a searchable database of about 800 surgeons who have met its criteria.
“We need reform both in how we train our residents and how we manage our practices so we ensure the best outcome,” Dr. King says. “Some of the people who come to me for surgery are sent by their OB-GYNs, but a lot are self-referred or referred by their primary-care doctors. Because general OB-GYNs operate infrequently, they aren’t well-versed in all the advanced techniques. They don’t know that you can bag and morcellate or remove a large uterus laparoscopically. We need to demand that our gynecologic surgeons are trained the same way as urologic surgeons and are all high-volume surgeons like urologic surgeons.”
One potential solution: splitting the OB from the GYN. After Kaiser Pemanente in Oakland, Calif., created separate obstetrics and gynecology teams focused on different practice areas, laparoscopic hysterectomies increased from 41 percent to 93 percent of its uterus removals between 2008 and 2015. Patient outcomes also improved. And while nationwide African-American women are about twice as likely as white women to receive an abdominal hysterectomy, Kaiser was able to eliminate racial disparities among recipients of its hysterectomies.
Hysterectomy is the second most common surgery for women after Cesarean section. As many as 70 to 80 percent of women develop fibroids by age 50, and each year about 600,000 women undergo a hysterectomy, with up to half due to a fibroid diagnosis. Sixty percent of these hysterectomies are performed through a large abdominal incision, although the operation carries a higher risk of complications, more post-operative pain, and a longer hospital stay and recovery period than less-invasive procedures.
“Minimally invasive approaches to hysterectomy (vaginal or laparoscopic, including robot-assisted laparoscopy) should be performed, whenever feasible, based on their well-documented advantages over abdominal hysterectomy,” the American College of Obstetricians and Gynecologists writes in its clinical guidance.
Laparoscopic hysterectomy has a lower risk of infection and blood loss, minimal scarring, less post-operative pain (reducing the need for strong painkillers), and a recovery period of two to three weeks compared to four to six for an abdominal hysterectomy. The patient is usually released the same day or the day after, compared to a hospital stay of several days. Research has found that laparoscopic hysterectomy also results in a higher quality of life after surgery.
“When a woman needs surgery, most see the OB-GYN who has been taking care of her for years,” says Dr. Allan Adajar, a gynecological surgeon who recently moved his practice from Chicago to Orlando, Fla. “They trust their OB-GYN. The problem is that most OB-GYNs are able to perform the surgery, just not by a minimally invasive approach. To refer a patient out is to lose $1,000-plus to another OB-GYN who does exactly the same surgery but with better outcomes. That’s the dilemma.
“When patients see their doctors, they don’t know that there are better options out there, so they don’t know they need to shop around.”
One of Dr. Adajar’s patients, Roxanne Gracyalny, was referred to him by her primary-care physician, not her gynecologist, and only after her fibroids had become so large that a technician was unable to do a transvaginal ultrasound because a fibroid was blocking the vaginal canal.
Minimally invasive hysterectomy requires a higher level of skill to perform and can take much longer, especially if the tissue is removed vaginally to eliminate an incision. My surgery lasted about five hours, compared to one to two hours for the typical abdominal hysterectomy. Could it be that some gynecologists just don’t want to be on their feet that long?
When I voiced dissatisfaction with the first Montefiore surgeon, whom I felt didn’t give me complete answers to my questions, the vice chair of the hospital’s gynecology department recommended Dr. Holly Yettaw Luts. I had resigned myself to having abdominal surgery when Dr. Luts was examining me and casually announced, “I think I can do this laparoscopically. I’ve done bigger uteruses than yours that way.”
In other words, I found her completely by accident. The surgery went off without a hitch, and a year later, on the anniversary I now refer to as Bye-Bye Monstrous Uterus Day, I am reveling in my smaller size and ability to avoid the frequent bathroom visits caused by my outsized uterus squeezing my bladder. Far from a disfiguring scar, I have a few small, fading marks on my abdomen where the camera and instruments were inserted and the tissue removed.
When uterine tissue is removed vaginally, there are even fewer marks. The only visible signs of Gracyalny’s laparoscopic hysterectomy are two small marks on either side of her belly button. “I remove all my specimens through the vagina,” says her surgeon, Dr. Adajar, including the Goliath of uteruses, a 2,000-gram specimen weighing four and a half pounds. “It’s more time-consuming than to extend one of the abdominal incisions and remove the specimen from an abdominal approach, but I don’t see the point in making an abdominal incision larger when you already have a large opening in the vagina. I think the extra time and effort are worthwhile, not just because of cosmetics but because abdominal incisions hurt and have complication risks.”
Yes, they do. A year after my surgery, the small bikini-line incision used to remove the morcellated tissue still aches when a waistband puts pressure on it. I imagine how much more it would ache if I’d had the much longer incision that goes with an abdominal hysterectomy.
Gracyalny was reluctant to have surgery because she had seen her mother suffer from pain and scarring after an abdominal hysterectomy. Instead, she endured heavy periods and horrible cramping for decades. Her fibroids became so large and her symptoms so severe that in 2017, her primary-care doctor referred her to Dr. Adajar. “My mom was cut open and had a six- to eight-week recovery, but I felt great and was back to work less than three weeks afterward,” says Gracyalny, 45, a human resources director who lives in Albion, Ill. “I was feeling well enough that I could go to work and get through the day, and I didn’t even take pain medication.”
The change in her life is astounding. “After four or five months of not having periods and everything being normal, I was just amazed at my life,” Gracyalny says. “I would have one week a month where I was miserable, and now I wasn’t having any weeks like that. It’s such a freeing feeling.”
She urges women to seek treatment if their uteruses are making them miserable: “I think sometimes women feel tied down to this, and they don’t have to be.”
Amen, sister. Just kiss that monstrous uterus good-bye.