Get answers to the most frequently asked questions about endometriosis from Megan Wasson, D.O., a minimally invasive gynecologic surgeon at Mayo Clinic.
Hi, I'm Dr. Megan Wasson, a minimally invasive gynecologic surgeon at Mayo Clinic. I'm here to answer some of the important questions that you might have about endometriosis.
What causes endometriosis?
I wish I could tell you the answer to that, but unfortunately, we don't know. Currently, we think that the likely source of endometriosis is actually occurring during development as a fetus. So when a baby is developing inside the uterus of its mother, that's when we think endometriosis actually starts.
How do I know if I have endometriosis?
That's a really great question. So endometriosis is something that can be a little bit elusive, but we can suspect it based on symptoms that you might be experiencing. If you're having pain with your periods, pain in your pelvis in general pain with intercourse, urination, bowel movements, all of that may point us to a suspicion of endometriosis. But unfortunately, the only way to say 100% If you do or do not have endometriosis is to do surgery. Because during surgery we can remove tissue, look at it underneath the microscope, and definitively be able to say whether you do or do not have endometriosis.
Can endometriosis be seen on imaging?
Unfortunately, most of the time, no. The vast majority of endometriosis is superficial endometriosis, meaning that it's almost like paint spackling on a wall, that we can't see it unless we actually go in and take a look surgically. The exception to that is if there's endometriosis actually growing into organs in the pelvis or the abdomen like the bowel or the bladder. That's called deep-infiltrating endometriosis. In those scenarios, we can frequently see that disease either on ultrasound or on MRI.
If I have endometriosis, should I have a hysterectomy?
Not necessarily. So endometriosis, it's cells similar to the lining of the uterus that are growing outside of the uterus. So it's truly not an issue with the uterus at all, which is what we treat with hysterectomy. That being said, there is a sister condition to endometriosis called adenomyosis and that occurs concurrently in 80 to 90% of patients, and so with adenomyosis, the uterus itself can be a source of problems, including pain. In those scenarios, sometimes we do consider a hysterectomy at the time that we're treating endometriosis.
What happens if my endometriosis is left untreated?
The key thing to remember here is that endometriosis is a progressive condition, and it will continue to grow and may cause progressive symptoms. So for some patients, that means that initially the pain was only with the menstrual cycle. But over time with that progression of disease, the pain can start to occur outside of the cycle, so throughout different times of the month, with urination, with bowel movements, with intercourse. So that can prompt us to need to intervene and do treatment if we hadn't done anything previously. But that being said, even though we know endometriosis is progressive, for some patients, it doesn't ever progress to the point that we would need to do any treatment because it's more of a quality of life issue. And if it's not impacting the quality of life, we don't really need to do anything.
Can I become pregnant if I have endometriosis?
100%. You can absolutely have children if you have endometriosis. When we talk about infertility, those are patients who are struggling with pregnancy already. But if we look at all patients with endometriosis, everyone with that diagnosis, the vast majority are able to achieve pregnancy without any problem whatsoever. They can get pregnant, they can carry the pregnancy. They walk home from the hospital with a beautiful baby in their arms. So, yes, unfortunately, infertility can be associated with endometriosis. But the vast majority of the time, it's truly not a problem.
How can I be the best partner to my medical team?
Being a partner for the medical team is truly key. A lot of individuals with endometriosis have been in pain for a prolonged period of time, which unfortunately means that the body has changed in response. And pain has almost become like an onion with endometriosis at the core of that onion. So we need to work not only to treat the endometriosis, but treat other potential sources of pain that have arisen. And so I encourage you to educate yourself, not only so that you can come in to your health care provider and have a dialogue and a conversation as to what you need and what you're experiencing. But also so you can be an advocate and make sure that you are getting the health care that you need and that you deserve. Also talk about it. Know women have, for years and decades, been told that a period is supposed to be painful and we just have to unfortunately suck it up and deal with it. That's not the reality. The reality is we should not be laying on the bathroom floor when we have our period. We should not be crying during intercourse. That is not normal. If you're experiencing it, speak up. Talk to your family, Talk to your friends. Talk to your health care provider. Let them know what's going on. Because truly, we are here to help and together we can start to make a impact not only on endometriosis for you, but endometriosis in society as a whole. Never hesitate to ask your medical team any questions or concerns you have. Being informed truly makes all the difference. Thanks for your time and we wish you well.
In a pelvic exam, your health care provider inserts two gloved fingers inside your vagina. Pressing down on your abdomen at the same time, your provider can examine your uterus, ovaries and other organs.
During a transvaginal ultrasound, you lie on an exam table while a health care provider or a medical technician puts a wandlike device, known as a transducer, into the vagina. Sound waves from the transducer create images of the uterus, ovaries and fallopian tubes.
To diagnose endometriosis and other conditions that can cause pelvic pain, your doctor will ask you to describe your symptoms, including the location of your pain and when it occurs.
Tests to check for physical clues of endometriosis include:
- Pelvic exam. During a pelvic exam, your doctor manually feels (palpates) areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. Often it's not possible to feel small areas of endometriosis unless they've caused a cyst to form.
- Ultrasound. This test uses high-frequency sound waves to create images of the inside of your body. To capture the images, a device called a transducer is either pressed against your abdomen or inserted into your vagina (transvaginal ultrasound). Both types of ultrasound may be done to get the best view of the reproductive organs. A standard ultrasound imaging test won't definitively tell your doctor whether you have endometriosis, but it can identify cysts associated with endometriosis (endometriomas).
- Magnetic resonance imaging (MRI). An MRI is an exam that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body. For some, an MRI helps with surgical planning, giving your surgeon detailed information about the location and size of endometrial implants.
Laparoscopy. In some cases, your doctor may refer you to a surgeon for a procedure that allows the surgeon to view inside your abdomen (laparoscopy). While you're under general anesthesia, your surgeon makes a tiny incision near your navel and inserts a slender viewing instrument (laparoscope), looking for signs of endometrial tissue outside the uterus.
A laparoscopy can provide information about the location, extent and size of the endometrial implants. Your surgeon may take a tissue sample (biopsy) for further testing. Often, with proper surgical planning, your surgeon can fully treat endometriosis during the laparoscopy so that you need only one surgery.
Treatment for endometriosis usually involves medication or surgery. The approach you and your doctor choose will depend on how severe your signs and symptoms are and whether you hope to become pregnant.
Doctors typically recommend trying conservative treatment approaches first, opting for surgery if initial treatment fails.
Your doctor may recommend that you take an over-the-counter pain reliever, such as the nonsteroidal anti-inflammatory drugs (NSAIDs) ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve) to help ease painful menstrual cramps.
Your doctor may recommend hormone therapy in combination with pain relievers if you're not trying to get pregnant.
Supplemental hormones are sometimes effective in reducing or eliminating the pain of endometriosis. The rise and fall of hormones during the menstrual cycle causes endometrial implants to thicken, break down and bleed. Hormone medication may slow endometrial tissue growth and prevent new implants of endometrial tissue.
Hormone therapy isn't a permanent fix for endometriosis. You could experience a return of your symptoms after stopping treatment.
Therapies used to treat endometriosis include:
- Hormonal contraceptives. Birth control pills, patches and vaginal rings help control the hormones responsible for the buildup of endometrial tissue each month. Many have lighter and shorter menstrual flow when they're using a hormonal contraceptive. Using hormonal contraceptives — especially continuous-cycle regimens — may reduce or eliminate pain in some cases.
- Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists. These drugs block the production of ovarian-stimulating hormones, lowering estrogen levels and preventing menstruation. This causes endometrial tissue to shrink. Because these drugs create an artificial menopause, taking a low dose of estrogen or progestin along with Gn-RH agonists and antagonists may decrease menopausal side effects, such as hot flashes, vaginal dryness and bone loss. Menstrual periods and the ability to get pregnant return when you stop taking the medication.
- Progestin therapy. A variety of progestin therapies, including an intrauterine device with levonorgestrel (Mirena, Skyla), contraceptive implant (Nexplanon), contraceptive injection (Depo-Provera) or progestin pill (Camila), can halt menstrual periods and the growth of endometrial implants, which may relieve endometriosis signs and symptoms.
- Aromatase inhibitors. Aromatase inhibitors are a class of medicines that reduce the amount of estrogen in your body. Your doctor may recommend an aromatase inhibitor along with a progestin or combination hormonal contraceptive to treat endometriosis.
If you have endometriosis and are trying to become pregnant, surgery to remove the endometriosis implants while preserving your uterus and ovaries (conservative surgery) may increase your chances of success. If you have severe pain from endometriosis, you may also benefit from surgery — however, endometriosis and pain may return.
Your doctor may do this procedure laparoscopically or, less commonly, through traditional abdominal surgery in more-extensive cases. Even in severe cases of endometriosis, most can be treated with laparoscopic surgery.
In laparoscopic surgery, your surgeon inserts a slender viewing instrument (laparoscope) through a small incision near your navel and inserts instruments to remove endometrial tissue through another small incision. After surgery, your doctor may recommend taking hormone medication to help improve pain.
Endometriosis can lead to trouble conceiving. If you're having difficulty getting pregnant, your doctor may recommend fertility treatment supervised by a fertility specialist. Fertility treatment ranges from stimulating your ovaries to make more eggs to in vitro fertilization. Which treatment is right for you depends on your personal situation.
Hysterectomy with removal of the ovaries
Surgery to remove the uterus (hysterectomy) and ovaries (oophorectomy) was once considered the most effective treatment for endometriosis. But endometriosis experts are moving away from this approach, instead focusing on the careful and thorough removal of all endometriosis tissue.
Having your ovaries removed results in menopause. The lack of hormones produced by the ovaries may improve endometriosis pain for some, but for others, endometriosis that remains after surgery continues to cause symptoms. Early menopause also carries a risk of heart and blood vessel (cardiovascular) diseases, certain metabolic conditions and early death.
Removal of the uterus (hysterectomy) can sometimes be used to treat signs and symptoms associated with endometriosis, such as heavy menstrual bleeding and painful menses due to uterine cramping, in those who don't want to become pregnant. Even when the ovaries are left in place, a hysterectomy may still have a long-term effect on your health, especially if you have the surgery before age 35.
Finding a doctor with whom you feel comfortable is crucial in managing and treating endometriosis. You may want to get a second opinion before starting any treatment to be sure you know all of your options and the possible outcomes.
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Lifestyle and home remedies
If your pain persists or if finding a treatment that works takes some time, you can try measures at home to relieve your discomfort.
- Warm baths and a heating pad can help relax pelvic muscles, reducing cramping and pain.
- Over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve), can help ease painful menstrual cramps.
Some report relief from endometriosis pain after acupuncture treatment. However, little research is available on this — or any other — alternative treatment for endometriosis. If you're interested in pursuing this therapy in the hope that it could help you, ask your doctor to recommend a reputable acupuncturist. Check with your insurance company to see if the expense will be covered.
Coping and support
If you're dealing with endometriosis or its complications, consider joining a support group for women with endometriosis or fertility problems. Sometimes it helps simply to talk to other women who can relate to your feelings and experiences. If you can't find a support group in your community, look for one online.
Preparing for your appointment
Your first appointment will likely be with either your primary care physician or a gynecologist. If you're seeking treatment for infertility, you may be referred to a doctor who specializes in reproductive hormones and optimizing fertility (reproductive endocrinologist).
Because appointments can be brief and it can be difficult to remember everything you want to discuss, it's a good idea to prepare in advance of your appointment.
What you can do
- Make a list of any symptoms you're experiencing. Include all of your symptoms, even if you don't think they're related.
- Make a list of any medications, herbs or vitamin supplements you take. Include how often you take them and the doses.
- Have a family member or close friend accompany you, if possible. You may get a lot of information at your visit, and it can be difficult to remember everything.
- Take a notepad or electronic device with you. Use it to make notes of important information during your visit.
- Prepare a list of questions to ask your doctor. List your most important questions first, to be sure you address those points.
For endometriosis, some basic questions to ask your doctor include:
- How is endometriosis diagnosed?
- What medications are available to treat endometriosis? Is there a medication that can improve my symptoms?
- What side effects can I expect from medication use?
- Under what circumstances do you recommend surgery?
- Will I take a medication before or after surgery?
- Will endometriosis affect my ability to become pregnant?
- Can treatment of endometriosis improve my fertility?
- Can you recommend any alternative treatments I might try?
Make sure that you understand everything your doctor tells you. Don't hesitate to ask your doctor to repeat information or to ask follow-up questions for clarification.
What to expect from your doctor
Some potential questions your doctor might ask include:
- How often do you experience these symptoms?
- How long have you had these symptoms?
- How severe are your symptoms?
- Do your symptoms seem to be related to your menstrual cycle?
- Does anything improve your symptoms?
- Does anything make your symptoms worse?