The path to motherhood is a deeply personal journey. For many women with fibroids, it can be full of heartache and loss. Aside from the normal angst of wanting to raise a child to be healthy, and provide a start in life that will give them the best opportunities, before that can even happen, getting pregnant, carrying a child to term and delivering without harming mother or baby can be a painful challenge.
Understanding The Fibroids Crisis
We are in a fibroids crisis, and they are being treated by many doctors as though they are the equivalent to a headache. Watch and wait. “If they aren’t bothering you, you don’t need to do anything about them” is a common phrase uttered in exam rooms, but it dismisses the fact that they can, and very often grow to sizes that can disrupt plans for having a family.
The little known tragedy of fibroids is that they have been responsible for infertility, miscarriage, and forced emergency Cesarean deliveries. That this is little known is also a tragedy. The symptoms of fibroids are responsible for missed days at work or social engagements, strained relationships. The extreme bleeding and severe pelvic pain that can occur with fibroids is debilitating. But the relationship between fibroids and fertility is still misunderstood. 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 sparked a larger conversation.
Extensive research is needed about why fibroids develop, why African-American women get them more frequently and with more severity than other races, and how they can affect fertility.
Not every woman experiences the same thing, so many gynecologists are conservative in their approach to managing fibroids, not wanting to subject women to painful open procedures. That conservative thinking is outdated, as new advancements in treating fibroids are becoming accessible to more and more women. 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.
FIBROID AWARENESS MONTH, THE PATH TO LEGISLATION AND ADVOCACY
To balance out the confusion in the doctors office, women 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.org, Gessie Thompson, Fibroid & Fertility Coach and author, 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.
The leaders in raising fibroid awareness and providing access to the most up-to-date information about how to treat these tumors are each making important strides. From legislation, to support forums, to fertility coaching, women with fibroids trying to get pregnant can now find experienced, state-of-the-art options that weren’t available when their mothers struggled.
FIBROIDS AWARENESS LEADERS
The White Dress Project, Tanika Gray, Founder
Founder of The White Dress Project Tanika Gray is an only child. Her mother, before having her lost two sets of twins due to fibroids. “It was very important to me to have a voice for the millions of women who have suffered the same way my mother did,” said Tanika Gray.
Like her mother, Tanika suffers from fibroids. “I have had excessive bleeding, abdominal bloating and cramping for much of my life.”
In a single open myomectomy procedure in Georgia, she had 27 fibroids removed.
“The initial surgery I had took me a long time to heal. I had an invasive myomectomy. My period after the myomectomy still hasn’t gotten light. I always have that feeling of getting up and looking back at my seat every time. I have it ingrained in my head. I don’t feel like I’ve gotten a better quality of life. I still travel with pads wherever I go, and I still keep leggings and pads in my car.”
“The path for me is to become a mother. I want to figure out a way in which that can happen. A recent procedure that I had was to make sure nothing was getting in the way. Becoming a mother is extremely important. I’m going to a fertility specialist in January. Possibly freezing my eggs. I don’t want to exhaust all possibilities. That’s my personal path in 2016.”
“There is a lot of work to be done. We have seen an increase in women saying ‘What is this?’ We have seen an increase in marketing in UFE, every other commercial in GA you hear about UFE. There isn’t a lot of education that goes along with it. Not a lot of women know what type of candidate is right for UFE. Women aren’t hearing multiple options. There is a huge gap in information. I feel like there has been an increase in awareness in people unifying about wanting to talk about, but the information about treatment is not clear. It’s not sexy. It’s not cool. It’s not feminine. Too many women don’t want to talk about it. Women just alter their lives to just living with fibroids. And that’s not right, either. Once someone sparks the conversation then it you hear about it, but so many women suffer in silence for ages.”
The White Dress Project has a three prong approach to address the fibroids crisis. Through a social movement, The White Dress Project encourages women who are passionate about awareness and advocacy, to become members and share their experiences; through a legislative approach, to bring awareness to a higher level and pass resolutions to make July Fibroids Awareness Month in additional states, as well as nationally; and through an advocacy role, partnering with companies that support women’s reproductive health.
The White Dress Project aims to be the premier organization for fibroid awareness, including raising funds for research, as well as educating women on the basics.
“Some women who have just been diagnosed have never heard of fibroids, so while we are working to get more awareness of the pervasiveness of the condition, we are still having elementary conversations with women to help them understand what these tumors are. We educate and make sure that there is a list of doctors that women can access.”
Awareness begins at the local level.
“In cities around the country, we host events to show women how they can be empowered to take control of their GYN health. We encourage them to come out and wear white. These events are a way for women to be bold, share their stories, ask questions and discuss ways to encourage other women to do the same. We always have doctors at these events. We are building our community that way, and will continue to do that in the coming year.”
In addition, The White Dress project is working on an awards ceremony to honor leaders in the medical field who are championing the cause and making a difference in women’s lives; A walk in Washington for women wearing white to begin at the Department of Health and Human Services the Capitol, to walk the halls and discuss the fibroids crisis that has been unfolding silently, and fundraising.
“One important goal for us in the coming year is to host a major fundraiser to see what we can contribute to the research world. Supporting innovative doctors is important to our efforts.”
The Fibroids Project, Renee Small Brown, Co-Founder
“I remember having to manage my life around the symptoms of the fibroids,” said Renee. “I lived in NYC at the time, and I always used public transportation. I would map out my destination so that I was always within 45 minutes of a clean restroom (preferable an office building, not a public one) so that I would be able to change a tampon/pad and not soil my clothes with blood. My quality of life had deteriorated.”
“My life has completely changed since having the fibroids removed. Almost Exactly one year to the date that I had the fibroids removed, I got pregnant with my first son. I always thought that I would need help getting pregnant. He was a pleasant surprise ! He’s now 4 years old.”
“I wish I knew to take action sooner and that having a period that heavy is abnormal. I also wish I knew about all the options out there. My OB/GYN was phenomenal and asked that I get multiple opinions prior to a myomectomy, but I didn’t do nearly as much research as I think I should have. There are also so many more options out there now than 5 years ago when I had a myomectomy, so I’m grateful for that.
From The Fibroids Project website: “In 2006, I was diagnosed with uterine fibroids. I went to my gynecologist with a pregnancy scare and I remember her feeling my belly and telling me, ‘Either you’re pregnant or you have fibroids.’ Since I didn’t want to be pregnant, I replied, ‘I’ll take the fibroids.’ I would later regret that statement. …I couldn’t understand how some benign tumors that weren’t cancerous and didn’t cause any pain would need to be removed just like that with no other options.”
Deciding to do more research, Renee decided not to have the surgery until she found a doctor she trusted.
“During my research, I found some websites – some disjointed, some contradictory, some outdated, and some were one person blogs telling one woman’s story. (My co-founder) and I came to the conclusion that there should be a place where women can share their insight, learn about new procedures and act as a support system for one another… all without leaving their living rooms—hence, fibroidsproject.com was born.”
“The Fibroids Project is an online community and website dedicated to helping women become fibroid-free. Our mission is to be the resource both women and medical professionals leverage for information on all current programs, procedures and research. Our Vision: We strive to be the leading national uterine fibroids informational website, connecting women to experts in all aspects of fibroid health.”
“Our goal is to continue to push out relevant content to our community of members. We also plan to increase our partnerships with similar organizations. Our flagship program is our monthly expert speaker series. We will continue to have that platform where experts come and speak and women are able to ask questions. We are also excited about our Woman of the Week where we feature a woman doing amazing things for fibroids.”
Healthy Women Beth Battaglino, RN, Co-Founder
From the Expert
“It is important that women understand the signs and symptoms of fibroids,” said Beth Battaglino, co-founder of Healthy Women. “One study found that 70 percent of whites and 80 percent of African American women had uterine fibroids by age 50. Many women do not know they have fibroids because they have no symptoms, but even when there are no symptoms, fibroids can interfere with pregnancy. Women need to know the location of their fibroids and the options for treating them. They should know what type of health care professional to see and should consider seeking a second opinion if they have a problem with fibroids. They also should know whether their health care provider is up to date on current treatments and will make all treatment options available. The American Association of Gynecologic Laparoscopists offers an online “Physician Finder” to help women locate surgeons in their area who will perform minimally invasive gynecologic surgery.
“Uterine fibroids are definitely more common and better understood than they were 10 years ago. New treatment options and procedures have heightened awareness and discussion. There also has been more money available to produce education and awareness campaigns for women. However, more can be done. Current statistics show that women are delaying having children until their late 30s and 40s. Fibroids usually appear when women are in their 20s and 30s and can interfere with pregnancies. Women need to understand the connection between fibroids and fertility and should know more about their personal risks. We also need to take a multicultural approach that meets the needs of all women. African American and Hispanic women have a higher incidence of having fibroids than Caucasian women.”
It’s part of our mission to engage and educate on new, FDA-approved treatments and procedures. We have a great board of medical advisors, called the Women’s Health Advisory Council, whose members help medically review our content. We provide accurate information to guide health care providers in their conversations with patients.
HealthyWomen.org has strong partnerships with both consumer and health professional organizations and can join forces on communication and outreach. They promote and engage extended audiences with program and campaign offerings, and through social media. Their partners include Nurse Practitioners in Women’s Health, the American Association of Nurse Practitioners, the Association of Reproductive Health Professionals, the American Medical Women’s Association, Men’s Health Network, Coalition of Labor Union Women, Sharecare, Three Tomatoes and the Blue Thong Society.
“We have had media round tables with key opinion leaders to answer questions on topics that include infertility and contraception,” said Beth. “We have also had great success with Twitter chats and can look into radio programming with a live radio call-in.”
Efforts to ensure women have a safe place to engage, and the most up-to-date information is a priority for HealthyWomen.
“Reproductive health is always on the list. It’s an area that is of great importance to our audience, which includes women of all ages and stages. Infertility is a difficult discussion, so an online portal that women trust works well. They know they are getting medically vetted information and research from HealthyWomen. The fact that they can share their stories and hear from others who may be in the same situation is powerful. This is one area we would love to grow in 2016.”
Gessie Thompson, Fibroids & Fertility Coach and Author of Hope Beyond Fibroids
“A year after I had uterine artery embolization, my fibroids tripled in size,” said Gessie Thompson. “Nothing was stopping these things.”
“It’s a very sad thing how many times women who have fibroids have them return. I had 5 surgeries to remove fibroids over 14 years. I had a total of 10 surgeries because of complications, including bowel repair and pelvic adhesions. My last surgery was a hysterectomy, and small bowel resection. After losing 4 units of blood, I was severely anemic. Open surgery just opens you up for so many complications.”
“You have to take ownership for what is going on in your body, and know what warning signs to look for. Unfortunately, a lot of times the warning signs are silent. My belly was swelling, but it wasn’t abnormal. They say your metabolism changes when you hit 30, so you tell yourself, ‘you can’t eat like that anymore, you are going to hold that around your belly.’ Which is what I thought was happening. Other than my belly, infertility was my first symptom. If I hadn’t been trying to have children, I may have never known.”
As a fibroids and fertility coach, Gessie is passionate about empowering women so they can make the best decision and have the best GYN partner.
“The first task I tackle with a client is ensuring they have hired the best gynecologist for them. Several factors must be weighed when selecting the optimal treatment options. Some surgeries present greater risks for complications and additional procedures. Consequently, it’s most advantageous to ensure your GYN is a high-value partner who is going to look at your case through the lens of a multiplicity of skills—encouraging early detection and leveraging minimally invasive surgical options—especially when childbearing is desired.”
She encourages women to use a guide she developed with minimally invasive surgery specialist, Dr. Cheruba Prabakar, “When to Fire Your GYN” and if necessary, find one better suited to help determine the best approach: watching for the development of fibroids and addressing them if, and most likely, when, they become a factor.
She empowers her clients and audiences to be H.I.P.P. about fibroids & infertility-Hopeful. Informed. Prayerful. Proactive.
“Because of the lack of knowledge when it comes to fibroids, many women blame themselves for their fertility problems. Women give up. They lose hope. I want to give that back to them.”
“Often times, the women battling fibroids that I coach come to me at a point where they are stuck in inaction due to hopelessness and fear–fear of the unknown, surgery, and not knowing what treatment options are truly best for them considering their circumstances values and life plans. They get stuck while the true disease is progressing to the point where it becomes a real crisis. What’s more, because of the lack of knowledge concerning fibroids, many women blame themselves for their fertility problems. They give up and lose hope. I work with them to overcome the emotional and mental obstacles fueling their fibroids and fertility by helping them restore their hope and become informed so they can be prayerful and proactive about how to best address them.”
“Like a mammogram, or annual GYN visit, because fibroids are so prevalent, I feel as though all women need to have a sonogram (and an MRI) because they may not be symptomatic, and when they become symptomatic, they become an issue. Why wait until they are problematic to address the issue? By the time they bother you, your GYN may recommend a myomectomy and the risks are much higher the larger they become.
His Middle Name, Megan Lubin, Founder
“Brad and I wanted a house full of children,” said Megan Lubin, founder of His Middle Name. “We are blessed to have Sutton, and that could easily have gone the other way. We named him Sutton Matthew. Matthew means ‘Gift from God’.”
Megan delivered her son 14 weeks early, just far enough along that his fighting spirit carried him through the next 71 days in NICU and then finally home. Sutton is now 5 years old.
A fibroid was growing alongside her baby, and even though there was no attribution to the fibroid initially as the cause of consistent bleeding throughout Megan’s pregnancy, the result was clear after her emergency Cesarean delivery.
From hismiddlename.com: “(My doctor) told me that after she delivered Sutton, she concluded that his early birth was due to an atypical, chronic placental abruption caused by my fibroid tumor. As my fibroid tumor grew bigger and bigger during my pregnancy, it had begun to climb the walls of the uterus and came into contact with my placenta. Little by little over the next six months, the placenta slowly tore away from the uterine wall, as to remove itself from the foreign tissue of the fibroid. Dr. M was able to tell this by all the caked, old blood that had pooled and accumulated around where the placenta had been. In her estimation, the placenta had probably completely abrupted at some point during the previous day and I just didn’t know it. It went unnoticed because the blood that would have alerted me to something being wrong was able to pool inside for hours because my cervix was blocked by a giant fibroid tumor.”
“Sutton is a NICU grad, and he’s healthy. Last year he was our town’s ambassador for March of Dimes. There are so many coordinated efforts for prematurity. There needs to be the same attention given to women with fibroids who either have trouble getting pregnant, have early births, or are told that a hysterectomy is their only option. What about women who never get to have a child? For many women, that’s so important to be able to carry a child on their own as part of their identity. Looking at uterus transplants in other countries, women are willing to risk their lives to have a uterus to have a baby. That feeling doesn’t go away.”
“Speaking about it is healing. It still stings when I see other pregnant women, even though I’m thrilled for others who are having more children. After a year and a half past my hysterectomy, I know that you can still mourn the fact that you can’t have children. But, I also know that you can support others graciously.”
HisMiddleName.com is a resource for women who have questions about fibroids and fertility, and also a place to get advice about premature births. Many of the women who Megan hears from are told that they have fibroids and that they need to have a hysterectomy.
As 2016 begins, Megan is looking to increase her activism in the area of fibroid legislation and awareness, aligning His Middle Name into collaborative efforts with other organizations, to expand their collective outreach.
“When the first tiny fibroid is discovered, that’s the time to be aggressive. My fibroid was taking up all the space. Of course, it makes sense in retrospect that it got so huge when I was pregnant. I didn’t know it fed off the estrogen. Women need to know what questions to ask, and doctors need to be more engaged. Each GYN should be saying: “Do you plan on having children? Before you and your partner have a conversation about having a baby, come and see me first. We’ll do an ultrasound and watch it closely.”
“Smart women aren’t asking the right questions. I wish I would have known what to ask. As a medical provider, I wish (my doctor) would have said ‘These are the options. It’s up to you to remove it, be aggressive or monitor it.’ But that conversation never happened. That is an area that needs more attention.”
About The Center for Innovative GYN Care Advocacy Efforts
The Center for Innovative GYN Care is dedicated to providing information and materials for women to help navigate the complicated healthcare system. Our minimally invasive surgeons have seen firsthand the pain and anxiety women with fibroids face. We have also seen what delaying fibroid surgery can do to distort a woman’s uterus. The longer a woman suffers with fibroids, the likelihood of extensive damage to her reproductive organs increases.
It is essential that advocacy, legislation and research efforts like those mentioned above are expanded. CIGC works closely with fibroids awareness organizations to ensure that our patients have access to the support they need, and have the most up-to-date information about the most effective minimally invasive fibroid removal to manage pain, bleeding and infertility.
Patients need tools to help them make the best choices about choosing a surgeon. We have created a list of questions for women to take with them to a doctor’s office, with guidance on what to expect. This one-sheet helps patients decide if the doctor and treatment is right for them.
CIGC minimally invasive GYN surgical specialists Dr. Paul MacKoul, MD and Dr. Natalya Danilyants, MD developed techniques to perform fibroid removal using only two small incisions. Using LAAM, our surgeons can safely and thoroughly remove all fibroids and repair the uterus in an outpatient setting, allowing women to return to their lives faster, with less pain.
CIGC’s minimally invasive specialists train GYN surgeons around the country in innovative techniques and procedures that optimize GYN surgical care.