Endometriosis: Know the Symptoms, Understand the Treatment

For centuries, women who experience severe menstrual pain have been told that the discomfort is just part of being a woman. It’s not. This level of pain could be endometriosis, and a woman who experiences it should not hesitate to seek help from a well-trained specialist.

What Is It and Why Is It a Problem?

The disease occurs when endometrial tissue—tissue from the lining of the uterine cavity—is found outside the uterus. In a normal cycle, it grows under the influence of estrogen as the ovaries are making an egg. It then stabilizes under the influence of progesterone. If a pregnancy does not occur, progesterone production eventually stops and the menstrual shedding of the tissue occurs.

Endometrium that exists outside the uterus—regardless of whether it’s in the pelvis, or on the ovaries, colon, rectum, or bladder—goes through these same hormonal changes. And this process tends to cause pain, inflammation, scarring, and in many cases, infertility.

Look For These Classic Symptoms

The disease is complicated because the extent of the condition does not correlate well with the symptoms. There are women who have the disease and don’t suffer from symptoms, yet many women have minimal disease and horrendous, life-changing pain. Typically, though, there are common symptoms associated with this disease:

• Debilitating menstrual cycle. In women with this disease, painful periods often present in their teen years. Periods that cause vomiting or send a girl or woman to bed in the fetal position are not normal. It is not normal for a girl to miss school because of the amount of pain she is having, or if her pain can’t be managed with an average dose of an over-the-counter pain reliever. Girls with these symptoms should seek help from a physician as soon as they can, to pinpoint underlying issues.
• Progressive symptoms. These symptoms become more problematic over time as endometrium continues to grow outside the uterine cavity. The symptoms tend to extend beyond the menstrual cycle; rather than just being a cyclic pain, it begins to take over more and more of the patient’s life. We start to see secondary causes of pain, where the pelvic floor muscles become tight and the surrounding pelvic nerves become hyper-sensitized.
• Urinary or bowel symptoms. Endometrial tissue can grow on major organs. We see it frequently on the colon, rectum, or bladder. When the disease manifests on those organs, people can have painful urinary or bowel symptoms. Many women also complain of painful bloating, which is worse cyclically.
• Worsening pain with sex. Although not a classic symptom, the other thing we often see is that women have worsening pain with sex—both with deep penetration and with entry. And for many women, it starts to impact their mood and ability to live the life that they want.

Many Possible Causes

It’s hard to nail down just what causes the endometrium to grow in abnormal places in the body of any one individual. Reasons may include:

• Genetic predisposition. The disease can often occur in women whose mothers also have it.
• Fetal development. As we evolve as embryos, the reproductive organs descend through the developing body. All the tissue designed to be endometrium is supposed to end up in the uterus. In many women with the disease, some of that tissue becomes deposited in other parts of the body. It can then grow outside the uterus as soon as young women begin to menstruate.
• Immune issues. In these cases, the bodies of people with the disease don’t clean up or eliminate the endometrium that ends up in their pelvis as effectively as the bodies of those people who don’t have the disease.

Multipronged Approach to Treatment for Women of All Ages

Although this is a disease that goes from menarche (the first menstruation) to menopause, women in their 20s, 30s, and 40s make up the vast majority of our patients.

The pain and symptoms of this disease are often multimodal, impacting several organ systems. Therefore, the best treatment is generally multifaceted and may require multiple coordinated approaches.

Exploring Dietary and Stress Connections

Wellness is a holistic approach, and diet alone has never been shown to eliminate this disease. However, women with symptoms of the disease plus irritable bowel syndrome (IBS) symptoms often respond beautifully to a low-FODMAP diet (fermentable oligo-, di, mono-saccharides and polyols).

Keeping stress levels down, exercising regularly to keep endorphins up, meditating, and eating in a way that doesn’t exacerbate bowel or bladder symptoms will help the patient better manage their pain.

Hormonal Therapy Considerations

If we catch the disease early, we can slow its progression and improve a patient’s quality of life. For instance, we may suggest that a girl begin birth control pills—even as young as the age of 14—if she suffers from debilitating periods. This can hugely benefit that young woman, giving her many more pain-free years than she may have otherwise experienced.

A lot of parents are hesitant to start their daughters on hormonal therapy, partly because we tend to think of this treatment as simply birth control. But the fact remains that hormonal therapy or birth control pills are outstanding preventive treatments for women with the condition. This is especially important in our youngest patients to try and delay or avoid surgery.

Physical Therapy

In women with chronic pelvic pain, the pelvic muscles often respond by getting tight and tender. This leads to worsening low back, hip, and nerve pain. It also leads to worsening sexual dysfunction and pain. Even after adequate medical or surgical treatment of endometriosis, this pain can persist and often requires help from a specialized pelvic floor physical therapist.

What Comes First: Medicinal Therapy or Surgery?

Hormonal suppression should be a first-line approach in most cases. On the other hand, if we already know that someone has an eight-centimeter endometrioma in one of their ovaries, no medicine we can give them will make that go away. As a result, they may go straight to the operating room without us initiating a trial of medical therapy.

Minimally Invasive Is the Surgical Treatment of Choice

Surgery, when it’s appropriate, can be life-changing for many women. It rids them of the disease and allows them to start fresh.

In fact, when surgery is appropriate, nearly 100% of this disease can be managed through minimally invasive procedures. Surgically, we are able to do a much better job removing invasive endometrial tissue when it’s done laparoscopically or robotically, rather than through large incisions.

Surgery Is Complicated—Seek a Specialist

Because this disease is so complicated—in part, due to its potential to impact so many organs—and the surgery can be so complex, it is very important that women seek the services of a specialist.

In most cases, the average Ob/Gyn should not be performing surgery to remove endometrial tissue growing outside the uterus. It should be left in the hands of specialists who regularly perform the procedure because it is among the most complex of surgeries we do.

Speak Up, Be Your Own Advocate

I would like to encourage more patients to advocate for themselves. If their Ob/Gyn suggests they need surgery to remove abnormal tissue growth, here are some questions to ask:

• How often do you perform this type of surgery? Every month? Every week? Every day?
• Are you comfortable performing a complete excisional surgery?
• If it’s on my bowel, can you remove it and repair the bowel?
• If it’s on my bladder or ureter, can you remove it and repair the bladder or ureter?
• If not, can you refer me to a specialist who can perform that type of surgery?

Patient Resources and Support

A wide range of resources exists for women with endometriosis. For example, a Facebook group called “Nancy’s Nook” identifies expert excisional surgeons all over the country, and provides a forum for patients to listen to each other and exchange information.

Patients can also check to see if a doctor has completed a fellowship in minimally invasive gynecologic surgery. These doctors complete two to three years of surgical fellowship above and beyond their Ob/Gyn residency. They manage 500 to 800 cases in those years and become experts.

Most importantly, we can support our friends, family, and colleagues by not minimizing their period pain, and by encouraging them to seek an expert opinion. If you are experiencing this type of pain, find a specialist you are comfortable with; one who will spend time getting a thorough medical history from you and who will help you understand possible treatments for your condition. You want a doctor who is willing to work with you for the long term to help improve your quality of life.