What to do when you get uterine fibroids

You have been diagnosed with uterine fibroid tumors. What do you do now? About one-third of all women will develop uterine fibroids in their lifetime that require treatment or observation. There are few studies on women with fibroids but some estimates are that eighty percent of all women will develop fibroids. With so many women developing fibroids, there is surprising little information about a woman’s options for dealing with the benign tumors.

Much of the lack of information about fibroids stems from idealism that concerns women’s reproductive health. No natural subject is rife with more controversy than a woman’s reproductive system. Some societies and religions consider it taboo to discuss women’s reproduction, let alone engage a dialog about the uterus. Women, then, are left with each other and independent research to get competent and comprehensive answers about fibroid treatment options.

According to a report by Transparency Market Research, the U.S. uterine fibroid treatment market is anticipated to be worth $273.6 million in 2024 as compared to $211.6 million in 2015. They state that the rising prevalence of fibroids in younger women is driving the market. The report also shows that hysterectomy is the most used treatment for fibroids. Women do have options other than hysterectomy and women are not often told of the serious permanent health risks caused by hysterectomy.

Uterine fibroids are benign growths that form in the uterus and consist of whorled collagen fibrils. Fibroids are usually round or oblong and are hard. Their sizes are often compared to fruit or sporting balls. A woman can be told she has a fibroid the size of an orange, lemon, golf ball, baseball, or a range of sizes that may be from a kumquat to a grapefruit, as examples. All fibroids begin as a single cell that clones itself and grows, with some stories of fibroids getting larger than the size a baby. At one time, the world’s largest fibroid was thirty pounds and the size of a watermelon. Last year, a 57 pound fibroid was removed from a Nigerian woman.

Fibroid treatment options include myomectomy, hysterectomy, uterine fibroid embolization (UFE), focused ultrasound (MRgFUS), observation, and, outside of the U.S., drug treatments that do not require a hysterectomy. Some women have managed their fibroids with natural remedies that include diet, exercise, yoga, meditation, prayer, and supplements. Fibroids that do not cause symptoms are called asymptomatic and may not require any treatment. Fibroids tend to die and shrink when women reach menopause. Larger fibroids may become necrotic, that is a type of decomposition, and then calcify, where they become hard like rocks and cause no further problems, unless they are interfering with organs.

What you do after learning you have fibroids will shape your experience with fibroids, while laying the groundwork for managing and treating your fibroids. What follows are some steps to help you focus on finding the best options for you.

1. Do not panic.

The first step after receiving a uterine fibroid diagnosis is to not panic, or panic for a minute or two and then realize you can take control of how you manage your fibroid situation. You might get angry but no measure of anger will make the fibroids go away. You are a strong, intelligent, and powerful woman and this is what will carry you through this. Also, get a full medical exam that includes a physical exam and blood tests that include tests for hemoglobin, hematocrit, ferritin levels, and thyroid function. Your emotions will get out of balance when your health is out of balance. Do not panic if a doctor tells you are anemic and need a blood transfusion but do be aware you will need to take care of this problem immediately.

2. Get second and third opinions.

Step two, get multiple opinions. Many doctors will recommend hysterectomy without considering alternatives. Hysterectomy is the most common treatment option for fibroids because it is the most straight-forward surgery with the highest return on investment for any treatment option. It also carries many risks for women when less invasive, lower risk options are available. Talk to multiple doctors and surgeons from different offices who are not associated with each other to be certain that you are receiving sound recommendations.

3. Talk to specialists.

Find specialists for different treatment options. For example, uterine fibroid embolization (UFE), also called uterine artery embolization (UAE) or just embolization, is performed by Interventional Radiologists (IR), rather than surgeons. A surgeon who specializes in hysterectomy will likely prefer hysterectomy to embolization and may recommend not having embolization. An IR may look at the same case of fibroids and provide examples of women with similar cases who benefited from embolization. A surgeon who performs many myomectomies per year can provide information about myomectomies. So in the case of fibroids, you will benefit by shopping around.

4. Ask questions.

Keep a level head and question everything. You may hear the worst case scenario from the first doctor or two you see. Some doctors lack enough experience with fibroids to know how to handle a case of large fibroids or of many fibroids. Interview your doctors like you are interviewing an employee for a job. Do not accept what they say without asking questions. If a typist says they can type 77 words per minute, you ask to see a typing certificate or you give that person a typing test. You know that without proof of ability, you could wind up with a typist who cannot spell and only types 12 words per minute. This is true with doctors. If a doctor claims to be very experienced with treating fibroids, you need to ask how many cases per year that doctor treats. A doctor who gives you an “expert” opinion but admits to only treating 10 fibroid cases per year is not as skilled as a doctor who treats over 100 cases per year. You may not find a doctor in your area with as much experience as you want but you can learn about the doctors you meet.

5. Learn about your fibroids.

Fibroids are annoying but they are not scary; treatment options for fibroids can be scary. Before you can tackle your available options, you need to learn what you are dealing with. The first step is the physical exam followed by a referral for radiologic imaging that is usually and ultrasound. Some doctors want other types of imaging to detect other potential problems. Dr. William Parker recommends MRI for fibroids because MRI provides a better picture of the fibroids and can show different types of anomalies that are difficult to discern from ultrasound imaging. In some imaging, degenerating fibroids can look like cancer and small fibroids can go undetected, so it is important to get the best imaging available. Once you have radiology results, your doctor can tell you about your fibroids and you can use that information to find options that are appropriate for you situation.

6. Learn about your options.

Hysterectomy is the most common recommendation for fibroids, yet women have many other options. Internet searches provide information about fibroid treatment options that are buried in misinformation and disinformation about fibroids. Some websites are provided by marketers of drugs or a specific treatment option, so learn who is producing a website. There are various online forums and chat groups for women to discuss their options and to share their stories. Learning about fibroids and treatment options takes some work but the payoff is worth the effort.

7. Be aware of scams and marketing.

There are many scam products sold online that separate desperate women from their money and have not effect on the fibroids. Some scam products are Vitalzym and FibroBlend. Drug manufacturers also advertise their products for fibroid management. Lupron is marketed as a fibroid treatment option but its effects are temporary and only provide fibroid shrinkage so a woman can have a hysterectomy. A recent press release carried the exciting but possibly misleading title, Women using statins may have a lower risk of uterine fibroids. The release concerned a study on statins with one of the authors admitting to having financial ties to a maker of statins.

8. Sometimes natural treatments do help.

Some women have found relief from using various supplements and through lifestyle changes. There is no one size fits all approach in managing fibroids. Each woman must tailor her options to suit her needs. Learning from other women and trying different remedies can help. Always discuss your options with your doctor and make sure you get a competent medical consultation if something feels wrong.