Uterine fibroids can have a profound effect on the health of women of reproductive age and beyond. Despite the significant occurrence of fibroids, not much is known about them in the general population. Taking this into cognizance and to raise awareness, organizations such as The White Dress Project and The Fibroid Foundation celebrate July as Fibroid Awareness Month.
Fibroids: a largely undetected yet pertinent problem in women
Fibroids, or uterine leiomyomas or myomas, are benign outgrowths that can occur at several regions in the uterus. They may be present in many different sizes and one may have a single fibroid or multiple.
A large proportion of fibroid cases may not have any symptoms and go undetected. Other cases may cause symptoms such as heavy, prolonged menstrual bleeding, pelvic pain, difficulty with urination, anemia (low red blood cell count), fatigue, and painful intercourse.
Low awareness despite large prevalence
Despite being quite prevalent, there is a serious lack of awareness and understanding about fibroids in the general population. In fact, nearly 80% of African-American women and 70% of white women have uterine fibroids. However, according to a recent study, only 49% of women who have had fibroid-like symptoms have actually heard anything about them.
This is partly due to the misconception that fibroid symptoms are normal consequences of monthly cycles. Many women think that longer periods are normal as they may have seen their mothers or sisters experiencing the same. Most of them also tend to manage symptoms on their own. Or they wait for them to go away by themselves.
Such delays in getting medical help can have serious ramifications. For example, studies have shown that nearly 43% of African-American women wait four years or more before seeking medical help resulting in 2.4 times higher incidents of hysterectomies compared to white women
The importance of education, informed decisions, and inclusive research
Educating women about menstruation and removing the associated stigma are a need of the hour. Just because symptoms such as prolonged bleeding have occurred to a family member before, it does not mean that it is “normal”.
There is also a need to raise awareness among patients about the various treatment and management options available to them. Doctors should explain the implications of each procedure. They should also talk about the impact these can have on women’s lives and the lives of their loved ones.
Currently, there is a dearth of information on how fibroids affect various population types, particularly the minority groups. Inclusive research can help better understand the biology of the disease. It can also give hope to women of all ethnicities and geographies.
Getting involved in fibroid awareness month
The general public can play an important role in raising awareness about fibroids. One of the most effective ways to make an impact is to volunteer with organizations such as The Fibroid Foundation, The White Dress Project, or any locally available support group. There may also be avenues for lending your knowledge in specific committees of these organizations that look for help with policy-making, patient advocacy, research, funding, communications, and networking.
Another way of making an impact is to inform fibroid patients about ongoing and upcoming research and clinical trials. Participation in clinical trials is a great way to find out about new treatments and become a partner in scientific discovery. Depending on the study, healthy volunteers can also enroll in clinical trials. The National Institute of Child Health and Human Development (NICHD) is a good resource for checking out ongoing clinical trials on uterine fibroids and see if you meet the eligibility criteria to participate.
You can also help amplify the voice of fibroid patients by sharing your story of living with the disease. Perhaps, you could petition for new legislation or convince insurance companies of the need to cover the costs of various fibroid treatments. Donating to the cause or taking memberships in support groups can also help.
This year’s fibroid awareness month
This year, The Fibroid Foundation is organizing a series of events with the theme of “Living Your Best Life“. The details of the events are available on the website of the Fibroid Foundation. Key events include a physician’s roundtable and the remembrance of late Congresswomen Stephanie Tubbs Jones. Jones played a crucial role in pushing for funded research in uterine fibroids.
The Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021 will provide funding of US$150 million to the National Institutes of Health. The Act also provides funds to establish a research database for fibroid treatment, coordinate data and outcomes at the federal level, report on state treatment expenditures, and disseminate care outcomes to individuals with fibroids.
Voting on the bill will likely take place in the fall of this year.
Laparoscopic surgery as a means to preserve fertility
Hysterectomy or the complete removal of the uterus was long advocated as the only definitive treatment for fibroids. While hysterectomy can stop fibroids from recurring, it also results in complete loss of fertility.
At Seckin’s Endometriosis Center, we advocate hysterectomy only as a last resort and when the patient is fully aware of the fact that she will lose her ability to bear children.
Advances in surgery have now enabled doctors to perform laparoscopic surgery to remove fibroids with minimal scarring and bleeding. With over 16 years and 10,000 hours of experience in performing laparoscopic surgeries, Dr. Seckin has the skill and expertise to remove fibroids of all kinds with high precision. His goal is to preserve patients’ fertility whenever possible.