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Living with endometriosis can feel overwhelming — not just because of the pain but also because of the treatment options and decisions to make. If you’re feeling unsure about where to begin, you’re not alone.
Endometriosis happens when tissue similar to the lining of the uterus, known as endometrial tissue, starts growing outside the uterus. It can grow on the ovaries, fallopian tubes, and the lining of the pelvis. In rare but serious cases, it can spread to other organs. Unfortunately, endometriosis is a chronic (long-term) condition with no cure yet. The goal of treatment is to control the symptoms.
To better understand how people choose a treatment plan, MyEndometriosisTeam spoke with Dr. Georgine Lamvu. Dr. Lamvu is a surgeon who specializes in pelvic pain. She is a professor of obstetrics and gynecology at the University of Central Florida. She is also a board member of the International Pelvic Pain Society and directs a surgical training program at the Orlando VA Medical Center.
Dr. Lamvu is an advocate of shared decision-making. This means treatment options are openly discussed together with your provider during one or more 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 a treatment plan can be an agonizing decision. Your goals for treatment and the future, including 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 frustration about treatment decisions: “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.”
“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.”
It’s important to know that there’s no 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 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.”
Some people come to the doctor already sure they want either medicine or surgery. However, that can be limiting. “If you pigeonhole yourself into one group, you may actually be missing out on something that’s going to help you,” she said.
Most treatment plans include hormone therapy, surgery, or both. Pain can also be managed with medications. These include nonsteroidal anti-inflammatory drugs (NSAIDs), like aspirin or ibuprofen. You can buy these over the counter. Your doctor may prescribe stronger pain relievers.
Hormone therapy is often the first step in treating endometriosis. “Endometriosis is, for the most part, an estrogen-dependent disease, worsened by menstruation or hormonal surges,” Dr. Lamvu said. These medicines adjust estrogen and progesterone levels, slow ovulation, and can shrink endometrial lesions — patches of tissue similar to the uterine lining that grow outside the uterus and can cause pain. This type of treatment may help relieve symptoms but can also cause side effects.
Some common options include combined birth control pills, patches, or rings that help keep hormone levels steady. These can lighten or stop periods, which helps reduce pelvic pain. Progestin-only methods — like pills, an IUD, a shot, or an implant — can also help by thinning the uterine lining and easing endometriosis symptoms. Side effects may include mild spotting, nausea, or weight gain.
Other hormone therapies include gonadotropin-releasing hormone (GnRH) medications, which temporarily stop estrogen production. These may cause hot flashes, bone loss, or vaginal dryness. Androgen treatments, which use synthetic male hormones to stop the menstrual cycle, can help with pain but may lead to acne, oily skin, or voice changes. Aromatase inhibitors, usually tried when other options don’t work, lower estrogen made in parts of the body outside the ovaries.
Surgery can help treat endometriosis by removing lesions, cysts, and scar tissue. It may also reduce or stop menstruation. There are several types of surgery for endometriosis, depending on where the tissue is and how severe the symptoms are. Some people need more than one surgery because abnormal tissue can grow back. Small growths can also be harder to find and remove.
Excision surgery removes the abnormal tissue. This procedure can be challenging because the tissue may look similar to healthy areas. When endometriosis is deep or near other organs, removing it can be difficult and carries some risk.
Surgical procedures that are typically used for endometriosis include laparoscopy, laparotomy, endometrial ablation, and hysterectomy. Laparoscopic surgery (laparoscopy) is a minimally invasive procedure. Doctors make small cuts in the belly and use a camera and special tools to find and remove endometrial tissue. This is the most common type of surgery used to both diagnose and treat endometriosis.
In some cases, doctors may recommend laparotomy, which is a more extensive, open surgery. This approach is usually used when the endometrial tissue has spread over a large area or is hard to reach. Recovery takes longer compared to laparoscopy.
Another option is endometrial ablation, which destroys the lining of the uterus using heat, cold, or microwave energy. This procedure may help reduce heavy bleeding, but it isn’t recommended for people who want to become pregnant or who are already in menopause.
Finally, a hysterectomy removes the uterus and sometimes the ovaries and fallopian tubes. This is a major surgery usually considered only after other treatments haven’t worked. A hysterectomy causes permanent infertility. If the ovaries are removed, it also causes immediate menopause.
Talk to your doctor about whether surgery is a good fit for your symptoms and type of endometriosis. Make sure to discuss the risks, pain management, and recovery time. It’s common for people with endometriosis to have more than one surgery over time.
Treating endometriosis pain is important, but for people who want to get pregnant, protecting fertility is, too. Endometriosis affects about 1 in 10 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.”
Conceiving (getting pregnant) can be harder with endometriosis. According to Johns Hopkins Medicine, about 24 percent to 50 percent of women with infertility also have endometriosis. Surgery to remove abnormal endometrial tissue may help improve the chances of pregnancy.
Some hormonal treatments can prevent ovulation and pregnancy. Stopping hormone therapy to try to conceive can bring back pain symptoms, which can be stressful. “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,” Dr. Lamvu said. “I usually work with a fertility specialist to get that patient pregnant as quickly as possible.”
Some treatments can also cause permanent infertility. Ablation raises the risk of problems with pregnancy, and hysterectomy makes pregnancy impossible. Always talk with your doctor about how any treatment might affect your ability to have children in the future.
Along with shared decision-making, Dr. Lamvu recommends a multimodal approach to managing endometriosis. This means using a mix of treatments and working with different types of doctors to care for all aspects of the disease. “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 example, surgery may not be the right choice for someone who also has other chronic pain conditions. “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,” Dr. Lamvu explained. “In those women, surgery may not be appropriate. And in fact, it may make them worse.”
A multimodal care team might include:
Research shows that combining treatments from different areas of medicine leads to better results. This interdisciplinary and personalized care approach helps manage the complex symptoms of endometriosis and improves quality of life.
MyEndometriosisTeam members know how important it is to have a good working relationship with your doctor. “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 who are supposed to be responsible for educating our patients,” she said. “And I actually think that is slowly changing.”
On MyEndometriosisTeam, the social network for people with endometriosis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.
Are you researching potential endometriosis treatment options? Have you talked to your doctor about surgery versus medication? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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It can't stop it.... it dries the Endo up.... I had to take the shot for 6 months
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