Treatment options for endometriosis include a wide variety of medications and surgeries, leading to difficult choices for people living with this condition. Endometriosis is a complex disease with a wide range of symptoms, which can significantly impact quality of life. Because of the different ways the disease can manifest and respond to treatment, endometriosis requires an individualized diagnosis and a tailored treatment plan.
Endometriosis is an often painful condition that causes tissue similar to the lining of the uterus to grow in other locations outside of the uterus. It can affect the ovaries, fallopian tubes, and the lining of the pelvis. In more severe cases, endometrial-like tissue can affect organs beyond the pelvic region. This chronic condition currently does not have a cure. Treatment is usually aimed at controlling pain or suppressing menstruation.
To better understand the factors that can go into choosing a treatment plan, MyEndometriosisTeam spoke with Dr. Georgine Lamvu, a gynecologic surgeon and specialist in pelvic pain. Dr. Lamvu is a professor in obstetrics and gynecology at the University of Central Florida in Orlando, Florida, and serves as a board member of the International Pelvic Pain Society. She is also the director of the fellowship in advanced minimally invasive surgery and advanced Ggynecology at the Orlando VA Medical Center.
Dr. Lamvu is an advocate of shared decision-making, in which treatment options for endometriosis are openly discussed and considered over a series of medical appointments. “It’s not only me telling you what I think. It’s also you telling me what you think,” said Dr. Lamvu. “Shared decision-making takes into account the woman's individual circumstances. It also takes into account her wishes and her goals. And that conversation takes place over time.”
Choosing the right treatment can be an agonizing decision. Thinking about your personal priorities for treatment and your goals for the future (e.g., family planning) should be taken into consideration. As one MyEndometriosisTeam member wrote, “I have my first of three appointments today to see if a hysterectomy is the right decision for me at this point. Scared.”
Another member expressed her frustration about deciding on treatments. “I just feel kind of hopeless, and like I'm making the wrong decisions. Either there's so much information that I'm overwhelmed, or I don't have enough to make an informed decision,” she said.
Careful, shared decision-making leads to better medical outcomes, Dr. Lamvu said. “We actually have research that shows that when there is a disconnect between what the physician is saying and what the patient is understanding, patients don't do well,” she said.
It is important to understand that no treatment can actually serve as a definitive cure for endometriosis. “I’ve seen a lot of frustrated people,” said Dr. Lamvu, referring to the confusion that often occurs when pain returns after treatment. “Endometriosis is a chronic disease. We need to stop talking about the myth of a cure.”
Treatment needs to be tailored to each individual person, and what worked for one person may not work for someone else, Dr. Lamvu noted. “That's not how the disease behaves,” she explained. “No matter how much you go on the internet and read about other people’s stories, there are two things that I can tell you with certainty: You are unique, and your circumstances may be very different.”
People often come to doctors with a firm idea of whether they want medical treatment or surgery for endometriosis, Dr. Lamvu said. “If you pigeonhole yourself into one group, you may actually be missing out on something that's going to help you,” she noted.
Treatment for endometriosis usually includes hormone medication or surgery, or a combination of both. Pain may also be treated with medications such as nonsteroidal anti-inflammatory drugs (NSAIDs) like aspirin or Advil (Ibuprofen), which are available over the counter, or in stronger forms by prescription.
The first course of treatment for endometriosis is often hormone therapy. “Endometriosis is, for the most part, an estrogen-dependent disease, worsened by menstruation or hormonal surges,” Dr. Lamvu said. Abnormal endometrial-like tissue that is outside of the uterus can bleed and be painful during menstruation. Common hormone therapies can have side effects, but may be helpful in treating endometriosis.
Several types of surgery can be used to remove endometriosis lesions, implants, cysts, and adhesions, or to reduce menstruation. Many people with endometriosis undergo multiple surgical treatments to excise abnormal tissue. Small areas of abnormal tissue can be hard to detect, and may cause the condition to recur.
Excision surgery can be complicated because endometriosis tissue is often hard to differentiate from healthy tissue. Tissue that is deeply infiltrating can be difficult to remove as well, and injury to other organs can be a potential risk that must be considered. Surgical procedures that are typically used for endometriosis include:
It is important to speak with your doctor about the effectiveness of surgery given your individual disease and symptoms. The issue of undergoing multiple surgeries is also relatively common in endometriosis. As such, the individual risks, recovery, and impact on quality of life should also be addressed.
While alleviating pain is an important aspect of treating endometriosis, women who want to become pregnant need to consider how the disease and treatment may affect fertility. Endometriosis is estimated to affect as many as 10 percent of women of childbearing age.
“A woman who has a goal to get pregnant is very different from a woman whose primary goal is to control pain,” said Dr. Lamvu. “You can't treat those two patients the same, even though they both have endometriosis.”
Becoming pregnant can be difficult with endometriosis, and approximately 30 percent to 50 percent of infertile women have been found to have endometriosis. Surgery to remove abnormal tissue caused by endometriosis has been shown to improve the chances of pregnancy.
But hormonal therapies may temporarily prevent pregnancy, and going off of them to become pregnant can increase pain from endometriosis, which can be a stressful process, Dr. Lamvu said. “I know that she's going to have to put up with a lot of pain in order to get to the goal of getting pregnant,” she said. “I usually work with a fertility specialist to get that patient pregnant as quickly as possible.”
Treatment may also cause permanent infertility. Ablation is one treatment that elevates the risk of infertility and makes pregnancy risky. A hysterectomy prevents pregnancy, is irreversible, and can cause early menopause.
Along with shared decision-making, Dr. Lamvu supports a multimodal approach to treatment that may involve different specialists and treatments, as needed. “It gets really complex,” she said. “We have to educate patients to understand that it may take more than one doctor on your team to get you better, and that's not even talking about all the therapies that you can use to manage pain.”
For instance, surgery may not stop the pain when people have underlying conditions, said Dr. Lamvu. “There are women who have endometriosis and overlapping chronic pain syndromes like fibromyalgia. I see pelvic floor myalgia, or just general signs of central sensitization syndrome,” she explained. “In those women, surgery may not be appropriate. And in fact, it may make them worse.”
Multimodal teams might include fertility specialists, pain specialists, endocrinologists, and specialized surgeons. Research shows that treatment that is interdisciplinary, multimodal, and centered on the person is important when navigating the complexities of endometriosis.
It is essential to have good relationships with your doctors when making difficult choices about your treatment plan. MyEndometriosisTeam members know from experience how important this is. “I’m lucky because I have very casual, open, and honest communication with my doctor,” said one member.
“Make your doctors listen. If they don't, get a new doctor,” said another member. “Keep fighting for your health. Find the right doctor. I finally did!”
Dr. Lamvu agreed that doctors must work harder to foster shared decision-making. “We are the ones that are supposed to be responsible for educating our patients,” she said. “And I actually think that is slowly changing.”
MyEndometriosisTeam is the social network for people with endometriosis and their loved ones. On MyEndometriosisTeam, you can find more than 112,000 people who come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.
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