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Fighting for Research: The U.S. is In a Fibroids Crisis

The following article is sponsored by The Center for Innovative GYN Care.

Seventy to eighty percent of American women by age 50 will develop uterine fibroids. These benign tumors grow in the uterus, or off of the uterus on stalks within the pelvic cavity. Many women never know they have them until caught on a routine exam, and for many of those, they may never affect daily life. However, those who are unlucky enough to suffer through some of the more severe symptoms of fibroids (pelvic pain, heavy bleeding, bleeding for longer than 7 days, large clots, pain in the legs or back, pain having sex) are at a higher risk of infertility if left untreated.

According to the NIH, fibroids and other common gynecological conditions represent an important health concern due to the large number of women affected. Yet, the reality is very little research has been successful in determining the cause of these tumors, or to clearly document their prevalence in a way that encourages medical professionals to expand their understanding of the condition, or adopt advanced minimally invasive surgical treatments.

Fibroids themselves are not seen as life threatening, as they are non-cancerous. However, the resulting symptoms can be extremely dangerous. Women have suffered from anemia – with some requiring multiple blood transfusions; and babies are lost to miscarriages, have been born prematurely, or are never conceived. The more severe symptoms of fibroids are responsible for missed days at work or social engagements, and strained relationships as the extreme bleeding and severe pelvic pain that can occur with fibroids is debilitating.

The effects of medical treatments with hormones, or life-style changes are short-lived. Women who believe that fibroids will go away with menopause are surprised to find that while they may shrink a little, if the fibroid has grown large (more than 250 grams), the fibroid can still cause problems well into and past menopause, with the tumor hardening. Few specialists are able to remove these fibroids thoroughly without performing invasive open procedures, leaving women in a position of having to choose to be out of work for 6-8 weeks with painful recoveries, or put off having surgery while the fibroid or fibroids continue to grow.

Fibroids Affect African American Women Disproportionately

Even with an already high rate of occurrence, African-American women are two to three times more likely to have recurring fibroids or suffer from complications from them. A 2012 study by Harris Interactive featured on the National Institutes of Health (NIH) website concluded:

“Multiple lines of evidence suggest that uterine fibroids have a disproportional effect on African-American women. African-American women have a higher cumulative risk of uterine fibroids, a threefold greater incidence and relative risk of fibroids, and an earlier age of onset…In addition, African-American women are 2.4 times more likely to undergo hysterectomy and have a 6.8-fold increase of undergoing uterine-sparing myomectomy. At the time of hysterectomy, African-American women have higher uterine weights, more fibroids, a higher likelihood of preoperative anemia, and more severe pelvic pain.”

Extensive research is needed about why fibroids develop in the first place, why African-American women get them more frequently and with more severity than other races, and how they affect fertility.

Infertility: Location of Fibroids Matters

Fibroids in the cavity of the uterus, also known as submucosal fibroids, can cause infertility by preventing implantation. Implantation occurs when the embryo attaches to the endometrial lining, with the placenta developing and obtaining blood supply from the uterine muscle.

These fibroids can prevent implantation, and can cause problems with the ability to become pregnant or can result in miscarriage. Intramural fibroids (fibroids in the muscle) can also prevent conception by obstructing the fallopian tubes, resulting in difficulty in becoming pregnant. Fibroid blockage of the tube will not allow the embryo to pass into the uterine cavity to implant on the endometrial lining.

Fibroids can also cause problems during pregnancy. These include placental abruption (detachment of the placenta, causing bleeding and loss of pregnancy, or pre-term birth), abnormal growth of the pregnancy occurring from fibroids affecting blood flow or the size of the fibroids, preventing the baby from growing properly, pre-term labor. Early labor may lead to an early delivery of the baby and possible developmental problems.

The Danger of the Watch and Wait Method

“If they aren’t bothering you, you don’t need to do anything about them.” This phrase is frequently uttered to fibroid patients in exam rooms, but it minimizes the risks. Women are left thinking that they don’t need to treat them until or unless there is a problem, but by the time they become a problem, many doctors are only able to remove them through invasive, open procedures, frequently recommending hysterectomy over myomectomy (fibroid removal).

Not every woman with fibroids experiences the same thing, so many gynecologists are conservative in their approach to managing them, not wanting to subject women to painful surgery.

That conservative thinking is often a reflection of the type of surgery the physician is trained, and it is outdated, as new advancements in treating fibroids can be performed with smaller incisions, in minimally invasive outpatient procedures, with women returning to work in 2 weeks or less. It is essential that the medical community is current on all treatment methods, their short and long-term side effects, and that they are informing patients of all of their options.

“Fibroids will continue to grow,” said Dr. Natalya Danilyants, MD. “That’s a very important point. A lot of patients that come see me with very big fibroids, they have known about these fibroids for many years, but they were told ‘Just leave them; if they don’t bother you, don’t bother them,’ but that’s not the right approach. Eventually, these fibroids are going to cause symptoms. For women who are planning to have children, you don’t want to wait to get to the point where your fibroids are large. Those large fibroids can cause irreversible damage to the uterus.”

“The message here is anyone with fibroids should see a fibroid specialist and determine if they are at a size where they should be addressed right away,” said Dr. Paul MacKoul, MD. “If they are really small, then you may not need surgery. But if they are causing symptoms like bleeding, causing pain or infertility, or if they are large it is important to have them out. Women who are prone to get fibroids should have an ultrasound once a year to make sure that no new ones are growing.”

Protecting Fertility: Treat Fibroids Early

In a study conducted in the United Kingdom of women who suffered recurrent miscarriages (3 or more), those who had fibroids, and had them removed reduced their miscarriage rate to 0%. While the study was small, and much more research is needed with a larger group of participants, the findings are sparking a larger conversation.

Women with fibroids trying to get pregnant can now find experienced, state-of-the-art options that weren’t available when their mothers struggled. Modern minimally invasive fibroid removal techniques performed by GYN specialists can be performed in outpatient settings with patients returning to work in 2 weeks or less. While large or multiple fibroids of any location can also be removed with these new procedures, the benefit of fast recovery with small incisions means that women can address fibroids when they are smaller, and less likely to cause uterine damage or distortion.

Bridging the Fibroid Knowledge Gap

More than 1.6 million women in the U.S. need GYN surgery annually. Understanding how GYN conditions affect overall health and learning about all available treatment options is essential for every woman making decisions about her care.

In a recent survey of women between ages 18 and over, more than half of American women either are unaware or have misinformation about common gynecological conditions and their surgical treatments.

Sixty-eight (68) percent of women are confused about fibroids and cancer. One in four women (25 percent) believe fibroids are cancerous while another 43 percent say they are not sure if there is a cancer link. Cancer can co-exist in the uterus with tumors, but the fibroids themselves are not cancerous. Sixty-two percent either do not know, or dispute the fact, that fibroids are a cause of infertility.

Starting the conversation can be the biggest leap forward for many women who find themselves faced with a condition like fibroids. Up-to-date information about common GYN conditions and procedures is available on GYNSurgeryInfo.org, a new resource that encourages women to be their own best advocate, while providing tools for choosing the best GYN surgeon as a partner.

Fibroid Awareness Month: The Path to Legislation & Advocacy

To balance out the confusion in the doctor’s office, fibroid advocates are taking to social media, creating grassroots organizations, coaching and writing about their experiences, and building communities to take the fight to D.C.

In the coming year, there is a push to increase awareness through grassroots efforts launched by The White Dress Project, The Fibroids Project, HealthyWomen.orgGessie Thompson, Fibroid & Fertility Coach and author of Hope Beyond Fibroids, HisMiddleName.com, and The Center for Innovative GYN Care.

Currently, New York, Florida, Georgia and the city of New Orleans have passed resolutions making July Fibroids Awareness Month. Led by The White Dress Project, these efforts are underway to expand July as Fibroid Awareness month to 16 cities in 2016, with the goal of getting Congress to make it national before the end of the current administration.

If you are suffering with fibroids or are having trouble with fertility treatments, it is important to see a minimally invasive GYN specialist for an evaluation. Book a consultation at The Center for Innovative GYN Care or call 888-787-4379.