The Watch and Wait Method for Large Fibroids Doesn’t Work
Rashetta F., CIGC Patient
“I first found out I had fibroids in college,” said Rashetta F., Washington, DC. “I had a cyst on my ovary that ruptured while I was in my senior year and had to go to the hospital. I went for a follow-up ultrasound, and found out then I also had fibroids.”
About 30 percent of women will get fibroids by age 35, and between 70 percent and 80 percent will do so by age 50. They can trigger miscarriages, and also be a cause of infertility. Fibroids affect African American women two to three times more frequently than white and Hispanic women. Also, African American women are more likely to develop problems with fibroids at an earlier age, with the fibroids growing faster, becoming larger, and causing more bleeding and anemia than in women of other races.
“After I graduated, I went to Philly and grad school, and my health was put on the back burner. I went through grad school without insurance and ignored my fibroids which I wouldn’t recommend to anyone. When I came to DC, and started working with the government, and once I got situated and had insurance, I started looking around for doctors. A couple people recommended an OBGYN to me, and I went to see him.
The Watch And Wait Method for Large Fibroids Is Out Of Step With Modern Minimally Invasive GYN Surgery Techniques
“For years I saw the same doctor, waiting and watching my fibroids grow, and for a while, the pain wasn’t altering my daily activities. But then, the pain got progressively worse. I found myself in bed, crying in pain.”
Many doctors tell patients that if fibroids aren’t bothering you, you can wait for surgery. The problem with fibroids, especially large fibroids is that they will continue to grow. Medications that can slow the growth of fibroids can only be taken for a year, and the reduction in size is often not significant enough to put patients through the side effects of temporary menopause, including hot flashes. Once a fibroid is large, recommendations like changes to diet, or hormone therapy don’t have a significant effect on size. Large fibroids frequently cause serious damage to the uterus, and for women wishing to maintain fertility, avoiding removing the fibroid when it is first discovered can lead to worse symptoms down the line.
“My doctor had discussed surgery with me, but I was shutting it down. I wanted to have kids someday.”
Depending on the type of surgery performed, the results can be unpredictable, leaving patients with concern over their ability to have children. Robotic or standard laparoscopic myomectomies are limited in the number and size of fibroid that can be removed. If the doctor runs into a problem, patients who think they are going in for a few small incisions can wake up with a large open incision, and no uterus. Even with an open procedure, depending on the number and size of fibroids, if the doctor cannot control the bleeding, the surgery can convert to a hysterectomy. It is important to discuss your options and your future plans with your doctor so that you know what to expect.
“He said he was going to do a large cut, and that I was going to be out for 2-3 months. But I was in so much pain, at that point, I made the appointment to have the surgery done.”
Always Get A Second, or Third Opinion For GYN Surgery
Another of Rashetta’s friends had a procedure with minimally invasive GYN specialist Dr. Paul J. MacKoul, MD, and she said that a minimally invasive myomectomy for a large fibroid was possible with this specialist. And this friend had heard about about Dr. MacKoul from her neighbor who was raving about him. Word was spreading quickly among their friends.
“I was hesitant to change, because my doctor knew my history, but I figured it couldn’t have hurt to have a conversation with him,” said Rashetta. “Even from my first consultation, the feeling that you get when you first meet someone and feel comfortable, that’s how I felt. When I first met him and he walked me through the procedure, he was so thorough. He drew out what was going on with my fibroids, and I realized in talking to him that I shouldn’t have done the watch and wait approach.”
The LAAM minimally invasive fibroid removal technique developed by the minimally invasive GYN surgeons at The Center for Innovative GYN Care uses 2 small incisions, one 5 MM incision at the belly button, and another 1.5 inch incision at the bikini line. Using advanced minimally invasive surgical techniques, LAAM allows the surgeons to thoroughly remove all fibroids, no matter the size, location or number, and the uterus is repaired by hand. LAAM is an important development, as it allows the surgeons to feel all of the fibroids. This cannot be accomplished by a robot or with standard laparoscopy. CIGC patients return to themselves in about 2 weeks.
Rashetta cancelled her other surgery and scheduled with Dr. MacKoul.
“The night before surgery, I was so nervous. I was having a freak out moment. I called the emergency line and Dr. MacKoul happened to be the one who answered. He told me to relax, go to bed, and he would see me at the hospital in the morning. He was very reassuring.”
“I planned to be off for 2 weeks, and I can work from home, so while I stayed home for 3 weeks, I was back working after 2. That was a far cry from the 2-3 months the other doctor told me. The first couple of days after a myomectomy are painful. And I needed someone to be at home with me for that.”
Rashetta jokes that her mom tattled on her to Dr. MacKoul. “A few days in, I was having shortness of breath. Mom called Dr. MacKoul and he told me to get up and walk around. I was 4 days in and I should have been up and moving. He was right.”
Bringing The White Dress Project to D.C.
The White Dress Project was started in Atlanta by founder Tanika Gray while she was recovering from a myomectomy that removed 27 fibroids. Rashetta now heads the D.C. chapter.
“When I was doing research, The White Dress Project came up. There wasn’t much out there at the time, but I reached out to the Tanika and asked how I could get involved. They were running a campaign called “Loving myself” and the winner would be invited to Atlanta to be celebrated at a white dress event and get a make-over. I hesitated, but couldn’t get it out of my head. I submitted my story at midnight the day it was due, and found out a couple of weeks later that I won. It was over Memorial Day weekend. We did a mixer event and invited doctors, and I shared my story.”
Since that event, Rashetta’s journey has brought The White Dress Project to Washington, D.C., and a new group of women who know the frustrations of dealing with fibroids to Dr. MacKoul. On September 17th, Dr. MacKoul joined a panel of medical experts on fibroids as The White Dress Project launched their D.C. chapter. Nearly half of the women in the room were his patients.
“I was invited to a vision board party,” said Rashetta. “I wasn’t really into the idea of doing one before. It turned out I was the first person to arrive and the last one to leave. What came out of that exercise was ‘Your story will heal you, and your story will heal someone else.'”
That was tied to everything Rashetta did for the next 6 months.
“I really feel like I was meant to work with this organization. It’s an issue that not a lot of people want to talk about and there isn’t a lot of awareness. We are focusing on legislation, pulling together other health organizations, and getting on other groups agendas. We even did an open mike event and gave a 5-10 minute overview and then we talked to people who either had fibroids or had family members who had fibroids for over an hour and a half after. I have a friend that is just now scheduling the surgery. She knows that I’m involved with The White Dress project, and I’m going to sit down with her and give her as much support as I can. But, if any woman has questions (about fibroids or minimally invasive surgery) don’t be afraid to ask Dr. MacKoul.”