Endometriosis Symptoms and Diagnosis

Pelvic pain is the most common symptom of endometriosis, but many women experience no symptoms at all.

By Beth Levine
Medically Reviewed by Kacy Church, MD

Pelvic pain is the most common symptom of endometriosis, but many women experience no symptoms at all. Endometriosis is a condition in which tissue that normally lines the inside of the uterus (womb) grows outside of the uterus. Although it can occur in any woman after menarche (first menstrual period), the condition is most common in women in their thirties and forties.

What Are the Signs and Symptoms of Endometriosis?

Some women with endometriosis experience no symptoms. Among women who have symptoms, the most common are pelvic pain and difficulty getting pregnant. The American College of Obstetricians and Gynecologists estimates that about 75 percent of all women with chronic pelvic pain have endometriosis. (1) Up to one-half of women with endometriosis experience fertility problems or difficulty getting pregnant.

Other common endometriosis symptoms include: (1)

• Painful menstrual periods; pain may range from mild to debilitating, and may get worse over time
• Pain during or after sex
• Pain in the intestines or lower abdomen
• Painful bowel movements or painful urination, especially during menstrual periods
• Heavy menstrual periods
• Spotting or bleeding between menstrual periods
• Fatigue, diarrhea, constipation, nausea or distension, especially during menstruation

Talk to your doctor if you're experiencing any of these symptoms. There are treatments that can help reduce endometriosis pain and other symptoms. For some women, endometriosis symptoms go away on their own once they've reached menopause.

Finding the Right Doctor for Pelvic Pain, Diagnosis, and Treatment

Many physicians, including gynecologists, don’t have special training in endometriosis, so it's critical that you find one who is knowledgeable of and experienced in handling the disease. (2) The best way to find one is to ask other patients for recommendations. If you don’t know anyone, you can find help in online forums and support groups.

When you get a good referral, gather as much background information as you can to bring to the doctors to help them see your situation clearly: (3)

• What are your symptoms and when did they start? Be very specific.
• What are your pain levels?
• Does the pain follow a particular pattern?
• Do certain activities cause a flare-up?
• What are you currently doing to alleviate symptoms? (Do not lie or skip over alternative therapies. If they are to help you, the healthcare team needs the complete picture.)
• Bring all your medical records. Especially important is any pelvic surgery (endometrial cells can attach to hysterectomy or Caesarean scars), early onset menstruation, short menstrual cycles, never having born a child, late onset menopause, uterine abnormalities, and family history of endometriosis.

When you meet doctors, observe carefully: They should be willing to answer your questions fully and enter into a dialogue with you. Observe if they take time with you or if you feel rushed. If they seem annoyed or not forthcoming, or if you feel dismissed or unheard, try another physician. Care needs to be a collaborative effort.

Questions to ask: (3)

• Do the doctors specialize in endometriosis and related diseases? If not, do they work cooperatively with specialists who do?
• Are they willing to explain treatment options and the reasons for them?
• There is no cure for endometriosis. Can they express in detail what their specific goal is for you? (And does that match the goal you have for yourself?)
• If you are interested in trying alternative therapies, are they open to that?
• Are they willing to treat you as a partner in your care?
• Do you feel comfortable talking to them and expressing your concerns?

Red Flags to Watch for in Your Healthcare Search

• Doctors don’t present you with all treatment options.
• Doctors refuse to discuss why they are recommending certain therapies or surgeries, and what they hope to achieve.
• Doctors dismiss your concerns or symptoms.
• Doctors ignore pelvic pain without considering endometriosis as a diagnosis.
• Doctors don’t recommend laparoscopic surgery to diagnose endometriosis if the diagnosis is unclear. “Surgery is the gold standard for diagnosis of endometriosis so a good ob-gyn would recommend this to confirm the diagnosis,” says Leena Nathan, MD, assistant clinical professor in the department of obstetrics and gynecology at UCLA Health in Westlake Village, California.

If any of these red flags show up, go for a second (or third) opinion. Patients are generally hesitant to do this because they don’t want to be seen as challenging authority or labeled a difficult patient, but this is your body. If you don’t feel 100 percent comfortable, get another opinion. You may end up back with the first group, but at least you will be reassured that you are making the right choice — for you.

Your Doctor’s Diagnostic Process for Endometriosis

Diagnosis is key as your symptoms may be related to serious conditions other than endometriosis, such as abscesses, ovarian cysts, cancer, or pelvic inflammatory disease. (4) The only way to know for sure if you have endometriosis is to undergo surgery.

But before recommending surgery, your doctor will probably take a number of steps to rule out other health conditions that could be causing your symptoms, and to see if surgery is unnecessary. These steps may include:

Pelvic Exam Your doctor will check for large cysts or lumps of scar tissue around your uterus by gently palpating the area to see if this causes pain. She will also insert a finger into your vagina and anus while continuing to palpate outside. The doctor will look inside your vagina with a speculum. Depending on what is found, a decision will be made to continue with diagnostic surgery. (5)

Imaging Tests Your doctor may recommend an ultrasound to check for ovarian cysts or abnormal tissue growth. For the ultrasound, a doctor or technician may insert a wand-shaped probe into your vagina or move a scanner across your abdomen. Magnetic resonance imaging (MRI) is another common imaging test that your doctor may recommend to look for endometriosis. (1)

Medication Your doctor may prescribe certain hormone medicines, such as hormonal birth control pills, to help lessen painful periods. Other medication may include gonadotropin-releasing hormone (GnRH) agonists. These drugs help reduce pelvic pain by blocking the menstrual cycle and lowering the amount of estrogen in the body. (6)

Laparoscopy Surgery Is the 'Gold Standard' for Diagnosis

The most common surgery for diagnosing endometriosis is called laparoscopy. In this procedure, which requires general anesthesia, your doctor will make a few small cuts in your abdomen and pelvis, then insert a small viewing device (called a laparoscope) that contains a tiny light and camera. The laparoscope allows your doctor to see the surface of your intestines and reproductive organs, and to check for any patches of abnormal tissue growth that look like endometriosis.

In some cases, your doctor may also perform a biopsy to confirm the diagnosis. This means taking a small sample of tissue from a suspicious area to be analyzed. A biopsy will not only help make a diagnosis, but if the diagnosis is positive, it will reveal information about type, stage, and severity, which can help guide your treatment. You may experience mild pain or cramping but you should be back on your feet within a day. (7)

The Diagnosis of the Future May Be Surgery-Free

In the future, doctors may be able to diagnose endometriosis even before symptoms start, just by analyzing bacteria from the vagina and uterus. In a small study, researchers from Southern Illinois University School of Medicine, Michigan State University, and Oak Ridge National Laboratory found that when they sampled bacteria from these spots, the diversity of the bacteria increased in women with endometriosis. (8)

If You Want to Try Complementary and Alternative Medicine (CAM) Therapy for Endometriosis

In a recent review of literature, a study found that while CAM modalities (natural products and mind and body practices) cannot cure endometriosis, therapies such as herbs, acupuncture, Chinese herbal medicine enemas, microwave physiotherapy, and psychological intervention can help “by shrinking the lesions, suppressing the symptoms, and decreasing the recurrence rate.” (9)

Just make sure you discuss this with the primary physicians who are treating you for endometriosis so they can coordinate care and warn you about any possible negative interactions. Many current hospitals have CAM resources that will work with physicians.

You can find more information on care and how to find a practitioner at the National Center for Complementary and Integrative Health.

Sources: everydayhealth.com
Founder: e-daifu.com