It’s estimated that more than 6.5 million women in the United States are affected by endometriosis. The chronic condition occurs when tissue similar to the lining of the uterus is found in other places around the body where it doesn’t normally grow. Endometriosis can be debilitating and is a leading cause of female infertility, but the disease is often misunderstood thanks to lingering myths and misconceptions. As a result, many women wait years before they are diagnosed.

However, if left untreated, endometriosis can worsen over time. We spoke with Dr. Sara Thomatis, OB/GYN practicing at MountainView Hospital, about endometriosis, and here are the key facts she wants women to know.

Q: What are the warning signs of endometriosis?

A: Endometriosis can present with abdominal and pelvic pain, painful periods or heavy menstrual bleedings. It can also present with abdominal pain not related to menstruation, pain with intercourse, pain during urination or defecation, constipation or diarrhea, irregular bleeding, nausea, vomiting, or fatigue.

Additional signs of endometriosis are difficulty getting pregnant (infertility), and ovarian masses or cysts.

Women with endometriosis may be asymptomatic as well.

All of these symptoms can occur by themselves or at the same time. If more than one symptom are present, there is an increased likelihood of endometriosis.

Q: How can women distinguish between normal cramps and endometriosis?

A: Cramping that can be treated with a localized heating pad and over-the-counter medication is typical, and pelvic pain caused by endometriosis can occur just before or during the menstrual period. However, if the pain with periods gets worse over time, and also occurs between menstrual periods, during or after sex or with bowel movements or while urinating, especially during the period, it could indicate endometriosis.

Q: Endometriosis involves more than just the uterus. Where can endometrial tissue implant in the body?

A: Depending on where endometrial tissue implants, different symptoms can result. Endometriosis is when glands and stroma (supportive tissue) of the inner lining of the uterus are found growing outside the uterine cavity.

Unfortunately, the whole abdominal cavity is at risk when a woman has endometriosis. Lesions can be found most often in the pelvis like on the ovaries, fallopian tubes, various ligaments (located on the sides of the uterus and cervix) and the peritoneum (the lining of the abdominal cavity), but can also be found on the bowel, appendix, diaphragm, bladder as well as other sites.

Q: Do we know why this happens?

A: The true cause of endometriosis is unknown, but a common theory is called “retrograde menstruation theory” where the thought is that some menstrual blood and endometrium flows backward through the uterus through the fallopian tubes and into the pelvis during the monthly menstrual period.

It is thought that most people have blood flow that goes backwards, but not all women have endometriosis. So, there is something on a genetic or cellular level that’s different. There are a few theories behind how it occurs.

  • One is that endometrial tissue can actually spread through the lymphatic system.
  • Another theory is that it travels through the blood vessels. This would help explain some unique cases where women actually have endometriosis tissue in their lungs or, oddly enough, in their brains.
  • A third theory is that perhaps the tissue was always there—even during fetal development.

Q: How is the condition diagnosed?

A: The definitive way to diagnose endometriosis is through evaluation of a biopsy of tissue obtained during surgery, usually laparoscopy, where a camera is used to look inside the abdominal and pelvic cavity. The tissue is then looked at by a pathologist to confirm that it is indeed, endometrial tissue outside the uterine cavity via histologic examination. Less invasive investigations can be performed prior to considering surgery as well, such as taking a history, internal pelvic examination to feel the pelvic structures, and ultrasound evaluation of the pelvis. Most cases of endometriosis are clinically diagnosed when a patient has a combination of symptoms, signs and imaging that all point towards a diagnosis of endometriosis.

Q: Does having endometriosis mean a woman can’t get pregnant?

A: No. When a woman is diagnosed with endometriosis and desires to conceive, they are not candidates for the hormone suppression therapies to alleviate endometriosis-related pain, as hormonal suppression prevents pregnancy. Women with endometriosis can get pregnant, but often have more difficulty in conceiving. Thus, the treatment of infertility associated with endometriosis often involves a combination of surgery and assisted reproductive technology.

Q: Is surgery the mainstay of treatment for endometriosis?

A: The optimal treatment of treatments for endometriosis remains unclear, but ranges from medical to surgical treatment options, and all depends on a patient’s unique circumstances. Many treatment plans are based on managing endometriosis-pain long term while limiting the number of surgical interventions. Surgical interventions involve surgical resection of endometriosis or endometriomas, hysterectomy or nerve resection to decrease pain signals received from lesions which cause inflammation. Surgery, of course carries with it risks, recovery and cost, so oftentimes, medical therapy is tried first.

Q: What medications are used to manage the condition?

A:There are various medical treatment options. Nonsteroidal Analgesics (NSAIDs) like Ibuprofen or Naproxen are considered to be first-in-line treatment for pelvic pain. The hormonal options work to decrease stimulation of the endometriosis lesions, which are estrogen-dependent. Combined, estrogen and progestin, contraceptives such as pills, patches, or vaginal rings, are first-in-line treatments for most women to reduce endometriosis-related pain.

Women with severe symptoms that do not respond to NSAIDs or hormonal contraceptives may be offered an option that produces low estrogen states, suppressing endometriosis.

Treatment choice is based on the severity of symptoms, patient preferences, medication side effects, need for contraception, cost and availability. Many of these options can be very effective.

Q: So, there are treatments but no cure for endometriosis?

A: Unfortunately, yes. According to the American Society of Reproductive Medicine Practice Committee statement, “endometriosis should be viewed as a chronic disease that requires lifelong management plan with the goal of maximizing the use of medical treatment and avoiding repeated surgical procedures”.

Endometriosis, like diabetes, is something a patient will always have to consider and think about. I understand it can be disheartening because no one really wants to have a long-term condition.

Q: Won’t symptoms disappear after menopause?

A: Endometriosis most often affects women in their reproductive years but can also be found in girls before they have their first period as well as in adolescents. It makes sense that with decreased hormone production, symptoms would lessen with menopause. So endometriosis symptoms typically resolve when a person goes through menopause. However, it has been found that endometriosis also affects 2 to 4 percent of postmenopausal women, and it is unknown if these endometriosis lesions result from lesions established during reproductive years or if new lesions arise during menopause.

Q: What do you want to say to women who are struggling with endometriosis or suspect that they have the condition?

A: Though symptoms from endometriosis can be tiring, take comfort in the fact that there have been many strides taken towards new medications to help control symptoms, with many medications having fewer potential side effects. There are also many resources for both patients and clinicians including, a nonprofit website dedicated to information about endometriosis and treatment, The Endometriosis Association, a self-help non-profit organization of women with endometriosis, and the American Society for Reproductive Medicine, which provides materials on reproductive health issues for patients.

Many women have been able to normalize their severe symptoms. It’s important to have an open dialogue with your healthcare provider about what you are experiencing and how it’s affecting your daily life and productivity. If you’re already in the care of a gynecologist who you feel is not responsive to your concerns or questions, don’t be afraid to seek a second opinion. A second physician might be able to provide a different perspective or treatment strategy that better resonates with your needs.

If you’d like to find a doctor to speak with regarding any questions or concerns, please call (702) 962-5021.