Understanding Endometriosis

Gynecologic surgeon Dr. Uchenna Acholonu Jr. on the cause, the symptoms, and how it's treated.

A woman holding her abdomen which is shaded in red

Endometriosis is an often-overlooked condition affecting an estimated 1 in 10 women, which translates to millions worldwide. What many might consider normal menstrual pain might in fact be a disorder involving abnormal tissue growth outside the uterus.

“Endometriosis is typically characterized by cyclic pain associated with menses. Many describe living with the pain as ‘just part of being a woman,’” says Dr. Uchenna Acholonu Jr., a gynecologic surgeon at NewYork-Presbyterian/Weill Cornell Medical Center who specializes in minimally invasive gynecologic surgery. “Generally, women do not seek care until they are in their 20s or 30s when they finally decide the pain is out of proportion to what they should experience.” This delay may lead to a missed opportunity to address a condition that could impair fertility and quality of life.

To learn more, Health Matters spoke to Dr. Acholonu, who is also an assistant professor of obstetrics and gynecology at Weill Cornell Medicine, to demystify the illness and learn how it is diagnosed and treated, and how it impacts fertility.

What is endometriosis?
Endometriosis is a condition in which the cells of the inner lining of the uterus accumulate outside the uterus. They can collect throughout the abdomen and pelvis, but classically develop around the ovaries, the fallopian tubes, behind the uterus, and around the bowel. These cells, endometrial glands and stroma, are completely normal and expected inside the uterus of a menstruating woman. The issue is about the location of these cells. Instead of just being restricted to the endometrium, the inner lining of the uterus, the cells grow around other organs.

What are the symptoms?
Cyclic pain is the classic presenting symptom. The pain occurs around the start of the menstrual cycle and may last for days. For some, the pain is debilitating, leading to missed days of school or work. Other symptoms include bloating, pain with bowel movement, or an inability to conceive.

Why are the symptoms often overlooked?
Some women attribute their pain to normal menstrual discomfort. This may be reinforced by family, friends, and even healthcare providers. It may take years for someone to introduce endometriosis as a possibility.

How is it diagnosed?
There is no good screening or diagnostic test for endometriosis. Although the diagnosis is suggested based on symptoms of cyclic pain, the only way to definitively make the diagnosis is through surgery. The surgery is laparoscopy, an outpatient procedure where we put a camera into a small incision in the belly to examine the pelvic organs.

What causes this condition?
There are a few theories about the true origin of endometriosis. Some say the cells are transported through the fallopian tubes, others describe spread through the blood or lymphatic system, and still others describe a change in the cells already in place outside the uterus. There are other theories, but ultimately endometriosis is the result of endometrial cells collecting outside the uterus.

Is it treatable?
Yes. Endometriosis is a chronic condition, so you can’t snap your fingers for a cure. Treatment goals include managing symptoms and preventing progression of the disease. Nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen can help manage pain. Hormonal therapy can help prevent progression. Severe cases that do not respond to medication may require surgery. Endometriosis can progress and form an endometrioma, a collection of fluid that can form around the ovaries. Endometriomas have various forms and effects. They can be the size of a pea or larger than a grapefruit. Aside from forming a contained collection they can also affect the function of neighboring organs. They can affect the fallopian tubes to cause infertility, block the passage of urine from the kidneys to the bladder, and they can invade the bowel. Surgery is usually indicated in these advanced cases. The goal of surgery would be to confirm diagnosis and restore normal anatomy.

How does endometriosis impact fertility?
Endometriosis can impact fertility in a few ways. One is by acting as a barrier to prevent the egg from reaching the fallopian tubes. Another way is by distorting the fallopian tubes. When endometriotic cells implant on the tubes, they can form abnormal connections or adhesions. These adhesions can make the tubes contort and swell to the point where they become completely obstructed. Once this occurs there is no natural way for sperm and egg to meet.

Will treatment help with infertility?
If a woman has trouble conceiving because she has endometriotic lesions around an ovary, we can free the ovary and she will, it is hoped, ovulate. If there is severe swelling and distortion of the fallopian tubes, they may never function again. In vitro fertilization may be the only option for conception.

You’ve said it’s a chronic condition — is there a cure?
Endometriosis is driven by hormones. When a woman becomes menopausal the hormonal stimulation should decrease and lesions should become less responsive. For women far from menopause the goal is management. This is the role of hormonal suppression such as birth control pills. If a woman needs surgery for endometriosis, many of us would recommend hormonal suppression afterward to manage residual endometriotic lesions and prevent recurrence of symptoms.

What’s one of the most important things for women to know who have this condition?
There is plenty of medical information to know about endometriosis, but when I see a patient who has spent the majority of her adult life missing days of work and downing pain medication each month, I want her to know that there is hope. Management of endometriosis may not be easy, but quality of life can be restored to acceptable levels. Women must understand that this will require long-term care with properly trained providers.

Learn more about women’s health.

Uchenna Acholonu Jr., M.D., is a gynecologic surgeon at NewYork-Presbyterian/Weill Cornell Medical Center who specializes in minimally invasive gynecologic surgery. He is also an assistant professor of obstetrics and gynecology at Weill Cornell Medicine.