What is endometriosis? Learn about this debilitating disease from an expert

March is Endometriosis Awareness Month

Women’s health is extremely complicated. And one of the more complicated, painful, and confusing conditions women can experience is endometriosis. Dr. Elizabeth Poynor is a New York-based gynecologic oncologist and advanced pelvic surgeon, and to help us get a better understanding of what endometriosis is, she answered all our questions about this disorder. Because whether you realize it or not, you most likely know a woman who has experienced endometriosis.

Dr. Poynor told HG that it’s estimated that more than 5 million women in the U.S. have endometriosis, and as the U.S. Office of Women’s Health reported, it may affect 11% of American women from the ages of 15 to 40. Just how it affects women varies significantly. Dr. Poynor noted that some women will have no symptoms at all, while others will experience significant pain—from painful periods to debilitating and chronic pelvic pain.

Despite how truly excruciating it can be, endometriosis is still not widely understood. Celebrities like Julianne Hough, Padma Lakshmi, and Lena Dunham have helped to raise the profile of the condition, but as Dr. Poynor said, it’s estimated that 75% of women with pelvic pain and 50% of women with infertility will have endometriosis, so it’s beyond time that we all had a better understanding.

What is endometriosis?

“Endometriosis is a disease in which the tissue that normally forms the lining of the uterus, the endometrium, is found outside the uterus. This tissue is composed of glandular cells and stromal cells. This endometrial tissue is not necessarily normal endometrial tissue, as it potentially undergoes cellular alterations that allow it to grow outside the lining of the uterus.”

What parts of the body can be impacted by endometriosis?

“Virtually any part of the body can harbor endometriosis. However, it is most commonly located in the pelvis. The most common locations for endometriosis are: the ovaries, under the ovaries, fallopian tubes, behind the uterus, bowels, and bladder. Endometriosis may also be found in other spots outside the pelvis and abdomen, such as the lung and brain. Less commonly, upper abdominal disease may occur. Disease implants may also occur in cesarean section scars and other scars.”

How does endometriosis impact a person’s life?

“Endometriosis’s effect on a woman’s life may range from asymptomatic to severely symptomatic. In some individuals, endometriosis can lead to chronic pain and all of the issues that surround this type of problem. For women who have severe, unremitting endometriosis with associated inflammation, it can significantly impact an individual’s day-to-day quality of life. It can lead to chronic pelvic pain, infertility, depression, anxiety, loss of livelihood, and relationship issues. Endometriosis may lead to deep pelvic pain during intercourse. Rarely, endometriosis may lead to a collapsed lung (pneumothorax).

It can also lead to pelvic floor dysfunction (the inability to control the muscles of the pelvic floor) and the side effects and symptoms include irritable bowel and chronic constipation, painful bladder, painful intercourse, and other issues. When it involves deep penetration into the rectum, it causes rectal bleeding during intercourse.”

What are some of the symptoms of endometriosis?

“Symptoms of endometriosis include: pelvic pain, heavy periods, spotting between periods, painful periods, pain with intercourse, bladder pain, abdominal pain, intestinal pain, constipation, diarrhea, nausea, and—depending on the location of the implants—other symptoms. Endometriosis may cause painful urination, painful bowel movements, fatigue, and lack of energy. Symptoms of pelvic floor dysfunction may also be seen with endometriosis.

Pain due to endometriosis is not well understood. The amount of endometriosis does not correlate to the degree of pain that a woman may encounter and suffer—a small amount of endometriosis may cause a large amount of pain, and some women with a large amount of endometriosis will have minimal to no pain.

Pain may be due to the inflammation surrounding the implants, which results from bleeding into these implants as they respond to monthly fluctuations in hormones. Scar tissue may also result from this chronic irritation, and this scar tissue may also lead to pain. This scar tissue can lead to the adherence of pelvic and other abdominal structures to one another, such as the bladder, rectum, ureters, and other structures. Some endometriotic implants may also involve nerves, and these nerves can be irritated and sensitized by the inflammation. Endometriosis pain may become better after pregnancy, though the reasons for this are currently not well known.”

What are the different types of endometriosis?

“The different types of endometriosis can be generally divided into groups based on how the endometriosis tissue grows and potentially invades surrounding structures.

• Endometriosis tissue may form blood and fluid-filled cysts, called endometriomas or chocolate cysts. Endometriomas most commonly occur on the ovaries, on top of the rectum, and in the space between the vagina and the rectum called the rectovaginal septum. Endometriomas are usually located in the pelvis, but may occur in any part of the abdomen and body.

• The second type of endometriosis is a superficial type of endometriosis in which the endometriosis spreads on the surface of the lining of the pelvic structures and abdomen. This is the least symptomatic and causes the fewest problems.

• The third type is very concerning and difficult to treat, and is referred to as deeply infiltrating endometriosis. This is the type of endometriosis that invades into organs such as the bladder or the rectum. This type of endometriosis can cause excessive scarring, pain, and many times requires surgical excision for effective treatment.”

What are the stages of endometriosis?

“The staging of endometriosis is based on the location and degree of findings. The staging is generally conducted by a point system. Various points are assigned based on the spread of the endometriosis, the depth of its invasion, and the areas in which the body is affected. Staging is ranked from Stage 1 to Stage 4. Stage 1 refers to minimal endometriosis, in which there are a few implants identified. Stage 4 refers to endometriosis in which deep implants and thick adhesions and endometriomas have developed.”

How is endometriosis diagnosed?

“Diagnosis is reliably only established through laparoscopy and surgical visualization and histopathologic verification. Ovarian endometriomas and other deep nodular forms may be detected through ultrasonography and also MRI.

Endometriosis is diagnosed through a laparoscopy, which is commonly referred to as belly button surgery or Band-Aid surgery, in order to determine the presence of the disease. It is really truly the only way to diagnose the disease. However, as mentioned above, other clues or indicators that endometriosis may be present include symptomatology, pelvic examination, and ultrasonography and MRI, which may show endometriomas and/or adenomyosis [a form of endometriosis].”

Who is most commonly affected by endometriosis?

“Endometriosis can become symptomatic in very young women in their teens, however, it more commonly presents in women in their 20s and 30s. It may become evident in peri-menopausal women in their 40s and 50s. It is important to realize that endometriosis can present itself at any age.

Endometriosis may also have a familial component, so individuals with a sister or mother with endometriosis may be more prone to the disease.

I think as we further recognize and diagnose endometriosis, we will be more able to further define who are the individuals who are at the highest risk of having the disease. The problem with how does one get endometriosis and who is at risk is that the disease has not been well studied because until recently, it was not commonly diagnosed. It was just over the past 10 years with an increasing awareness of the disease and more frequent and liberal use of laparoscopy in surgery to diagnose and treat the disease that we are realizing that endometriosis is a significant contributor to disease in women. So I think that the answer will evolve as we have a better understanding of the disease.”

What are the indicators that I may have endometriosis?

“Any pelvic, abdominal, menstrual, or fertility symptoms that are worrisome to you should be brought to the attention of your physician. Heavy periods and painful periods that are debilitating and impact your quality of life are not necessarily normal. This should be reviewed with your physician or health care practitioner. Any unusual symptom of the abdomen, such as abdominal pain, bloating, constipation, back pain, bladder pain, or any other symptoms which are concerning to you, should be reviewed. It is important to always get answers and a diagnosis for any issues that you may be having.”

Do we know what causes endometriosis?

“Despite endometriosis now being quite commonly diagnosed in women and being one of the most investigated issues in women’s gynecologic health currently, the understanding of what causes endometriosis remains incomplete. A number of hypotheses as to what causes endometriosis have been put forth.

Investigators have proposed that endometriosis results from retrograde menstrual flow. This is where endometrial tissue that normally flows through the cervix outward during menses, flows in a reverse-type fashion through the fallopian tubes. For some women, this may be the cause, however, many women have retrograde menstruation and not all develop endometriosis, so there must be other factors contributing to the development of symptomatic disease.

Other factors that may be contributing to the development of symptomatic disease include:

• Genetic factors—endometriosis can be found in familial clusters, such as mothers, daughters, and sisters

• Estrogen levels and metabolism—endometriosis can respond to anti-estrogen therapies

• Progesterone levels and metabolism

• Immune system abnormalities—the immune system may fail to destroy the ectopic endometrial tissue

• Environmental exposures—such as dioxins and polychlorinated biphenyls (PCBs)

• Coelomic metaplasia—where the cells lining the abdomen convert into other types of tissue

Endometriosis may also result from direct transfer of tissue during surgery. Endometrial cells may possibly be transferred by the bloodstream (resulting in endometriosis of the lung and brain). Other theories that have been put forth include stem cell theories that hypothesize that endometriosis arises from endometrial stem cells located outside of the uterus.

Based on the number of theories put forth and differing types of endometriosis, it may be that the causes of endometriosis may be multifactorial and endometriosis may not represent one disease but a number of diseases with different etiologies, or causes, for the different types of endometriosis.”

What should I avoid if I have endometriosis?

“Unhealthy foods, environmental toxins, nutrient and vitamin deficiencies, poorly managed stress, and a sedentary lifestyle should be avoided.

Food: An anti-inflammatory nutrition plan that focuses on healthy fats, a largely plant-based diet, nuts, fatty fish, and eating a rainbow of fruits may be beneficial. Things to avoid include: dairy products, red meat, processed foods, anything white with wheat flour, trans fat, refined sugar, and consumption of excess alcohol. For some women, limiting gluten may also be beneficial. You can learn more about the recommended nutrition plan under the ‘nutrition principles’ section of the endometriosis education page on my website.

Environmental toxins: Avoid exposure to environmental toxins, such as phthalates (found in artificial fragrances), parabens (found in skin and hair care products as preservatives), and BPAs (found in plastics). Excess estrogen can occur through environmental compounds that function as estrogens, called xenoestrogens. Dioxins, found in pesticides, have been linked to endometriosis. (When female rhesus monkeys are fed food containing dioxins, 79% developed endometriosis. The severity of endometriosis correlated with the amount of dioxins consumed.) Personal care products are common sources of dioxins, so always try to use organic products.

Nutrients and vitamins: Measure vitamin levels to ensure they’re adequate. Especially important is vitamin D, and supplement with a B-complex vitamin.

Stress: It is important for any individual in general, but especially with endometriosis, that stress be well-managed. Stress which is poorly managed can affect the immune system and inflammatory pathways. In order to help minimize pain, an individual should pay close attention to stress management and include things in their life that are joyful to them. For some women, meditation and mindfulness will be helpful.

Lifestyle: Extreme, stressful exercise should be avoided. This type of exercise can lead to stress on the body and result in inflammation. Instead, engage in ‘restorative’ exercise, since exercise increases pelvic blood flow, decrease stress, and increases endorphins. Regular exercise of four hours per week and lower levels of body fat can decrease the risk of endometriosis.”

How can endometriosis impact pregnancy and fertility?

“Endometriosis primarily affects pregnancy through its impact on fertility. Women who are pregnant with endometriosis may have endometriomas, which can undergo changes with pregnancy hormones. These cysts may begin to look a bit unusual during pregnancy. Women may have pelvic floor dysfunction resulting from endometriosis, and pregnancy can impact the pelvic floor. For the most part, however, pregnancy impacts endometriosis in a positive fashion. As previously mentioned, endometriosis pain may become better after pregnancy, but the reasons for this are currently not well known.

Most women who have endometriosis do not have problems with infertility. However, many women who have problems with infertility do have endometriosis. Approximately 5% to 10% of all women have endometriosis and most of these are not infertile, but 30% to 40% of infertile women will have endometriosis. If infertility does become an issue, seek early care with not only a fertility expert but also an expert in the medical and surgical management of endometriosis.

I think that we are recognizing more and more how appropriate treatment of endometriosis through medicinal treatments, surgical treatments, and natural/lifestyle treatments will help to impact and improve fertility. Just because you have been diagnosed with endometriosis, though, does not mean that you will be infertile. Through more liberal use of laparoscopy, diagnosis, and treatment, researchers and clinicians will begin to elucidate fertility issues and the impact different treatments will have on fertility.”

Is there a way to prevent endometriosis?

“The best way to prevent advancing endometriosis is to recognize the symptoms and treat early. Through women’s and physicians’ awareness of the disease, an early diagnosis can lead to early treatments. Currently, there is an average delay of between four and 11 years from symptoms to surgical diagnosis. Still, in my Manhattan-based practice, I see many women who have undiagnosed pelvic pain that is clearly due to endometriosis when they come into our office. It is important to diagnose and prevent the advancement of the disease.

It is also important to recognize that we do not understand the triggers of the disease because we do not truly understand the origins of the disease. But the best way to prevent symptomatic endometriosis is early recognition and appropriate treatment so that women don’t suffer the consequences of advanced, unremitting disease.”

What are some of the questions I should ask my doctor if I think I have endometriosis?

“One way to bring attention to endometriosis, which sometimes does not get recognized as a cause of abdominal pain or pelvic pain still, is to specifically ask your physician or health care practitioner if they think that some of your symptoms could be related to endometriosis. This will put it at the forefront of their mind and encourage them to address the question. Keep a diary of symptoms and bring this to your practitioner.

Tests that are commonly used include a pelvic examination, pelvic ultrasound, and MRI. Endometriosis may not show up on these tests, however. The only way truly to diagnose endometriosis though is through a laparoscopy in order to directly look at the pelvis and the abdomen and also do biopsies and excision to remove tissue and examine under the microscope.

Endometriosis is a pathologically diagnosed disease, meaning that we look at the tissue underneath the microscope in order to determine if endometrial glands and stroma are present in lesions. A surrogate marker for endometriosis in other parts of the pelvis may be something called adenomyosis. Adenomyosis is a form of endometriosis in the wall of the uterus, meaning that endometrial glands, which normally line the wall of the uterus, now are in the muscle or wall of the uterus. Women who have adenomyosis may also have endometriosis in other parts of the body. Adenomyosis can be seen on pelvic ultrasound and MRI imaging.”

Why is endometriosis so difficult to diagnose?

“I think that endometriosis is difficult to diagnose for a couple of reasons. The first is that we don’t talk to women enough about pelvic pain, and we don’t actively diagnose the cause of pelvic pain often enough. Therefore, the diagnosis can sometimes remain elusive through physicians or health care practitioners not listening to a patient and not putting a patient’s symptomatology together to formulate that endometriosis may be present.

Some of this comes from a lack of recognition of the disease. Many times in medicine, if we can’t see it or measure it, we don’t think about it. Because endometriosis is many times only diagnosed through a surgically invasive procedure such as laparoscopy, clinicians may be hesitant to recommend it. Laparoscopy does require general anesthesia with endotracheal intubation [tube placed in the windpipe through mouth or nose], so for many physicians, the benefit of a laparoscopy to diagnose the cause of pelvic pain may not be recognized. Therefore, the cause of pain may be elusive if we can’t see it and don’t converse about it.

Ultrasonography is operator dependent, meaning who does your ultrasound imaging counts. The concept of the ‘expert pelvic sonographer’ has been recognized in the U.K. in the medical management of ovarian cysts, and it should also be recognized for endometriosis. More subtle findings of endometriosis, such as subtle adenomyosis or ovarian adhesions, may be missed by a non-expert, thus contributing to a delayed or missed diagnosis.

This is why it’s important for women to question their physicians and health care practitioners to ask for tests and evaluation. I think that through increased awareness in the popular press, media, and in medical forums we can begin to diagnose and treat the disease more appropriately.”

What are some of the common conditions that endometriosis can be misdiagnosed as?

“Many women who come to my practice have a diagnosis of irritable bowel or upper gastrointestinal (GI) issues. Many times women will have significant pelvic pain, painful periods, or painful intercourse (referred to as dysmenorrhea and dyspareunia, respectively) and do not even have a diagnosis. Because the physical exam and pelvic imaging are normal—and abnormalities may not be recognized through poor interpretation of imaging—many women are still told in this modern day that nothing is wrong with them. So I think that many times women may not be even given a diagnosis. It is important for women to recognize that any form of pelvic pain is not ‘normal.'”

What are some of the conditions that I may have instead of endometriosis?

“The issues which can be commonly confused with endometriosis may include: proctitis, or an inflammation of the colon; interstitial cystitis, or an elusive inflammation of the bladder; and back, hip, and pelvic floor problems. Your physician or health care practitioner should rule out that there is not a pelvic inflammatory disease or a low-grade pelvic infection. It is also important to assure that neoplastic conditions are ruled out through studies, such as pelvic imaging, colonoscopy, and cystoscopy. Imaging such as an MRI of the back or hip may also be recommended to rule out musculoskeletal conditions.

Irritable bowel, which is truly a GI issue, may mimic endometriosis. Pelvic floor dysfunction may lead to chronic pelvic pain and may result from endometriosis or be caused due to nerve injury through surgery, pregnancy, and childbirth. In many cases, the cause of pelvic floor dysfunction is unknown. This may lead to symptoms that are similar to endometriosis, including painful bowel movements, problems with urination, urinary frequency, dysmenorrhea, dyspareunia, back pain, and pelvic pain.”

How is endometriosis treated?

“Effective treatment of endometriosis should employ a multidisciplinary approach. The cornerstone of treatments for endometriosis has been hormonal therapy along with surgery. However, many times after hormonal therapies are halted or after surgical excision, endometriosis may return to become symptomatic. Because the propensity to develop endometriosis is a chronic condition, treatment strategies should also consider and include lifestyle, nutrition, physical therapy, and other integrative approaches.”

Is a hysterectomy the best way to treat my endometriosis?

“We have moved away from early hysterectomy in the treatment of endometriosis. For some women, however, hysterectomy may be a good option. As always, the treatment of endometriosis is highly individualized and should be reviewed with an expert.”

Is there a cure?

“Always in medicine, ‘cure’ is a very strong word. Most diseases are caused by inciting factors. Unless we abate these inciting factors, truly a disease cannot be cured as one is always at risk of disease recurrence. This not only includes diseases such as cancer, but any chronic disease, such as endometriosis.

I think that endometriosis can certainly be controlled so it is not disruptive to a woman’s life. Again, the way that we treat endometriosis is to identify what may be inciting causes of the disease, control the disease acutely (either through medicinal treatments or surgical treatments for those individuals who are suffering acute pain), and then consolidate with other lifestyle and hormonal management strategies.

The answer is that endometriosis can be controlled and women should have hope that if they get to the appropriate expert, they can get the appropriate treatment. I also think ‘expert’ is a necessary word in this situation, as there are certain individuals who have expertise in the management of what can be a very complex disease for some individuals.”

What should I do if I don’t believe my doctor is taking my concerns about endometriosis seriously?

“If you do not think that your doctor is taking your concerns about endometriosis seriously, get to an expert in the field. They will take your concern seriously. Endometriosis experts are proliferating in the country as the disease is more widely recognized as a major cause of illness in women.”

What are the misconceptions about endometriosis?

“I think that because endometriosis is associated with pelvic pain, misconceptions about pelvic pain really affect endometriosis diagnosis. I still see patients in my Manhattan practice who come to me who state that their health care practitioner told them that they were having psychiatric or psychological issues and that the pain was in their head.

The other misconception, though, is that it doesn’t exist for an individual. Again in medicine, sometimes if we can’t see it, touch it, feel it, or measure it, we don’t believe it. Therefore, it’s always important that if you don’t have an answer to your question to get to somebody who will pursue an answer and an outcome for you. This typically involves experts who have the surgical expertise, because these are the individuals who understand the pathology, the biology, and the etiology of the disease.

Women should realize that there is help for them. There are experts in medical, surgical, and integrative therapies that can provide treatment and support.”

This interview has been edited and condensed.