Shilpa H. Amin, MD, FAAFP, MBSc, clinician and patient advocate at Inova Health System in Virginia, has a unique perspective on women with uterine fibroids – as a patient, a primary care (family – geriatrics) physician, and as former Agency for Healthcare Research and Quality (AHRQ) Effective Healthcare Program Medical Officer.
“Uterine fibroids impact the mind, body, and spirit of a woman. This condition permeates a woman’s life – how she functions. Most women have multiple roles that involve personal, professional, social, and family caregiving duties. The difficult symptoms of uterine fibroids have repercussions in multiple facets of a woman’s life.” Shilpa says.
As a teenager, Shilpa recalls that sometimes her periods would be so painful she’d miss school. She would self-treat the pain with a hot-water bottle, a heating pad, and Advil just to get through. At 17, Shilpa experienced the trauma of her mother dying unexpectedly after an abrupt illness. Her menstrual issues worsened in the following months and she developed other symptoms that led to a diagnosis of Hashimoto’s thyroiditis during her last year of high school.
Moving through her 20s, 30s and 40s, her fibroid symptoms worsened. “On reflection, my Mom had lots of bleeding, cramping, lower abdominal issues, and had two miscarriages after having me. I didn’t understand why when she was alive. After my diagnosis, it was a light-bulb moment when I pieced together her symptoms. I wondered if she, too, had uterine fibroids.”
Shilpa’s uterine fibroid diagnosis began in 1999 during her geriatric fellowship. “A few months into the fellowship, I felt a lump on my abdomen.” Shortly thereafter, she had an ultrasound showing a ‘pedunculated’ fibroid on the outside of her uterus. She was surprised that it wasn’t picked up earlier.
Watch and wait
Shilpa’s OB-GYN advised her to wait until she became pregnant (pregnancy can shrink fibroids) or use medication to shrink the fibroids prior to a pregnancy and then seek treatment. Anti-inflammatory medicines helped manage the symptoms through her physically demanding fellowship.
Later she transitioned to her second fellowship in Women’s Clinical Health at Mayo. There, gynecological surgeons and gynecologists gave her the same recommendation — ‘wait and see’. “By now the fibroid had grown and was really bothering me. I hadn’t had the opportunity to start a family yet – and I was still in my childbearing years. I was advised to defer any interventional treatment beyond anti-inflammatory medications.”
Shilpa finished her fellowship training and joined a busy family practice group in Northern Virginia. The impact of this work and responsibility took a toll on her body and spirit. “I was practicing medicine, managing the demands of the job, and commuting. It seemed that with increasing professional responsibility and with each transition into more challenging work and commuting, the more painful my periods became.”
In 2006, the toll on her body led her to leave clinical medicine for something less physically demanding, and more academically stimulating and fulfilling. “Having gynecological issues and working in healthcare environments is very difficult,” she said.
In her early 30s, the fibroid was growing so much that she felt like she was pregnant. She consulted a leading Georgetown interventional radiologist and researcher about the uterine artery embolization (UAE) procedure. He said she wasn’t a candidate because UAE is not ideal for someone with a pedunculated fibroid who is concerned about her fertility.
She wanted to put off the procedure until she had settled into her new position as a medical officer, even though her clothes were fitting very tight, and she was having heavy, painful periods. “But one day, when someone asked me if I was pregnant, it hit a nerve. That was a very painful moment, and I decided to plan the surgery, as reluctant and frustrated as I was with that decision.” Shilpa says she never envisioned having GYN surgery for anything other than having a baby. Life took a different turn.
She thought about all the women who are in unsupportive work environments, yet who need procedures to take care of their uterine fibroids. “I was so fortunate! I needed six-eight weeks of recovery time, which, being a new employee, I didn’t have. My colleagues donated their leave time which allowed me to have the surgery and time to recover.” She reflects, “In a different work environment, I would have had to take leave without pay – and my job may not have been there when I was ready to come back.”
Eight years later, she is still better, and aware that another fibroid may be developing. “Since the surgery, I have noticed that my vigor has diminished some, my periods are sometimes unpredictable, and adhesions seem to have formed. It could be hormonal. It could be my thyroid. I just feel something has changed as a result of having surgery
Being a physician, Shilpa says coping with the ironies of being in the healthcare field, yet seeing such under-appreciation for the burden of uterine fibroids, can be challenging. “It’s difficult to be a healthcare provider taking care of thousands of pediatric and adult women, helping women through maternity and gynecological issues, giving them advice on women’s health issues – and experiencing the irony of not yet being able to have these experiences myself because of my uterine fibroids. I have had to learn to compartmentalize this dilemma.”
And as a woman of color, Shilpa notices that society isn’t always as respectful or understanding of the full spectrum of what people from various backgrounds and cultures are going through. “I notice that many people aren’t aware of uterine fibroids and just can’t relate. There’s not much empathy or patience. There are stereotypes and expectations about how women should act, what roles they should take on, what path they should follow. Women who don’t have these challenges are often insensitive to women who suffer gynecological or fertility issues, and even demonstrate indifference or discriminate against them, knowingly or without realizing they are doing it. ALL women should be supportive of another woman’s journey regardless of whether one has direct relevance to adversity, a disease or illness. Each of us has a unique story of challenges and no woman should be perceived as inferior to another.”
She added, “We need to increase awareness of how gynecological issues can affect more than a particular organ. These diseases can impact the entire body, mind, and spirit. This mysterious ball of fibrous tissue with no physiological purpose dramatically affects every facet of a woman’s life.”
Shilpa said the COMPARE-UF registry is making a good start at addressing these issues. “Though many women want to know about the cause of uterine fibroids, COMPARE-UF is focusing on the management pathways and procedure outcomes first. Later we can add another dimension to this research to see how women are dealing with the personal, social, and workplace issues.”
Uterine fibroids affect women of all backgrounds, yet women of Asian descent aren’t as well studied as African American and Caucasian women, in whom uterine fibroids are more prevalent. Shilpa hopes that woman from many racial and ethnic groups will participate in the COMPARE-UF study to help researchers understand a broader patient population and be able to eventually inform women with fibroids how to plan their childbearing years and life trajectory.