Married couple Carolyn and Dione have a lot in common. But they never expected to share a common diagnosis of fibroids. After years of severe symptoms, they both decided to have their fibroids removed through hysterectomies — in surgeries two days apart.
In a live cocktail hour discussion on Facebook, Carolyn and Dione joined CIGC VP of Research Louise van der Does, Ph.D., to share the details of their journey through diagnosis, treatment and recovery.
Watch the recorded discussion here.
Carolyn was in her late 30s when she was first diagnosed with fibroids. After struggling with infertility for two years, she decided to visit a fertility specialist. The specialist found two small fibroids but told Carolyn they wouldn’t interfere with her chances of conceiving, so she went ahead with fertility treatments.
A little over a year later, she was able to get pregnant, but miscarried at 13 weeks. Her doctor told her the reason for the miscarriage was a fibroid that had grown to the size of a grapefruit. It needed to be removed. Carolyn had an open abdominal myomectomy — the only surgical option offered to her at the time.
“That surgery was horrible for me,” Carolyn said. “I’ve been very active my whole life and it was a brutal surgery. The recovery time was over two months just to get back to work and regular activity, but I couldn’t start working out again until six months later.”
When Carolyn reached her early 50s, several fibroids had grown back along with an ovarian cyst causing extremely heavy periods. Her doctor recommended an open abdominal hysterectomy to solve the problem once and for all, but Carolyn couldn’t imagine going through another brutal open surgery. She found The Center for Innovative GYN Care and, after meeting with Dr. Natalya Danilyants for a consultation, she decided on a full DualPortGYN hysterectomy.
Dione always had heavy periods, and she assumed they were normal. She also had a long history of regular medical screenings. In her early 20s, she left her hometown in Louisiana to join the military, which required annual medical evaluations to ensure she was deployable. After she left the military, she had an exit physical and joined the federal government. As a federal law enforcement officer, she was still required to have regular medical checkups. Nothing notable ever came up in her annual screenings.
Following a move to Maryland, Dione visited a new gynecologist who suspected there may be a problem, and an ultrasound confirmed the presence of a fibroid that was taking up her entire uterus.
“I later went back and reviewed some of my paperwork from the federal government and the military and, sure enough, there in my medical records was a note that I had a fibroid,” Dione said. “But it wasn’t brought to my attention until I went to the new gynecologist.”
Growing up, Dione’s family never discussed their medical history. She didn’t know if anyone else she was related to had experienced fibroids until she asked “Cousin Colette.” Colette not only had a history of fibroids herself, but also told Dione that several other members of the family had fibroids — they run in the family.
Now both Carolyn and Dione had fibroids that needed to be removed, so they decided to go to CIGC together for minimally invasive hysterectomies.
After looking at their schedules, Carolyn and Dione identified Thanksgiving week as the ideal time for both surgeries. They had some time off from their jobs and they had a “circle of women” in town to care for them.
With Carolyn in the middle of the school year as a teacher and Dione’s career in federal law enforcement, a long recovery would have severely impacted their ability to do their jobs. But CIGC’s DualPortGYN technique had them back on their feet in just a few weeks.
Both Dione and Carolyn felt a positive connection to their surgeon, Dr. Danilyants. She made sure she was available, patiently fielded every question and addressed every concern, Dione said.
“A lot of the time we feel like we’re women, so we should know all about our female organs. And that’s just not the case,” Dione said. “I was not bashful about asking my questions.”
For Carolyn, the experience was night and day compared to her interactions with doctors and nurses at the fertility practice she had gone to years before.
“At the fertility center I went to, I did not get a good vibe at all,” Carolyn said. “From the nurse to the doctor… I definitely did not feel welcome. There was nothing blatant, but I just didn’t have a good feeling. And I’m somebody who trusts that.”
According to a 2018 poll¹ by the Harvard Chan School, NPR and the Robert Wood Johnson Foundation, one-sixth of LGBTQ+ people have experienced discrimination at the doctor’s office or another health care setting and a fifth avoid health care appointments due to this worry.
“That was just two years ago,” CIGC VP of Research Louise van der Does, Ph.D., said. “I felt like we were making a lot of progress, but there’s still obviously some work that needs to be done.”
In many gynecological surgery cases, open surgery is not necessary, yet 40-50% of women are still undergoing open procedures, van der Does said. This might be related to how few women seek a second opinion². Many women trust their OBGYNs, who often do not present an alternative to open surgery. But OBGYNs are typically low-volume surgeons, meaning they perform a low number of surgeries per year.
According to a 2014 study³ that looked at the impact of surgeon volume on hysterectomy outcomes, high-volume surgeons were associated with significantly fewer complications and shorter operating times.
“Imagine if you had to get on a plane, do you go with the pilot who flies once every few years or do you go with the pilot who flies 1,500 to 2,000 times a year?” van der Does said. “They have your life in their hands.”
CIGC specialists are high-volume surgeons who perform as many as 2,000 GYN surgeries per year, so van der Does recommends going to an OBGYN for regular care, but then seeking a second opinion from a surgical specialist if any complex issues come up in an annual exam.
Now that both Dione and Carolyn are fully recovered, they can look back on their health history and recognize their regular heavy periods were abnormal. Because of this experience, they’re determined to maintain an open dialogue about gynecological health with the young women in their family.
“We are aunties to many young women,” Carolyn said. “We talk to all of them about what is going on. We’re very open. I feel like that’s helpful because it passes on family history and it gives them a sense of what might be normal.”
They encourage the young women in their family to always seek a second opinion, even if they love their doctor. With continued advancements in medicine, they believe it’s always worth it to see if there’s a better, more specialized and minimally invasive option out there.
Dione wishes her family had more open conversations about their health history and felt she would have been better prepared if her family’s history of fibroids had been discussed.
“With family, start the conversation,” Dione said. “Sometimes I think we want to protect them and not really talk about those things. But it’s not about protecting one another, it’s about preparing one another.”
Remember: Open surgery is not always necessary. CIGC specialists are ready to offer you a second opinion. Talk with a member of our patient care team today.
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