DEAR MAYO CLINIC: My mom, older sisters and I have always had really painful menstrual periods. I recently read that this could be caused by endometriosis. Could you tell me more about it?

ANSWER: My rule of thumb for patients is that their periods should be no more than an inconvenience. If someone is missing time from work or school, not being able to get out of bed, or canceling plans due to period pain, this isn't typical and should be discussed with a healthcare professional.

It's not unusual that painful periods run in your family. Often, women think that debilitating pain and cramping are usual because they've seen their family members have the same experience. You don't need to suffer. If the cause is endometriosis, it can be treated, even if it can't be cured.

Endometriosis

Endometriosis is a condition where cells that are similar to those in the lining of the uterus — the endometrium — multiply outside of the uterus. Although typically found in the pelvis, these cells can be found throughout the body, including the abdominal and chest cavities. 

Endometriosis cells cause inflammation and are hormone-stimulated. So, with every menstrual cycle, inflammation flares up, causing scarring and tissue growth, which can fuse organs together and lead to significant symptoms, including pain.

This growth of tissue and binding together of organs, in addition to difficult periods, can lead women to experience: 

• Frequent and urgent urination with bladder pain.
• Bowel movement changes, including pain, constipation or diarrhea, blood in the stool, or a change in its shape or size.
• Pain during and after and after sexual intercourse.

Endometriosis also may interfere with fertility. While about 70% of women with endometriosis are able to get pregnant without assistance, about 50% who struggle with fertility are found to have endometriosis. 

Diagnosis

Despite all of these symptoms, endometriosis can be challenging to diagnose. It typically takes seven to 10 years from the onset of symptoms until a diagnosis is made. Suspected endometriosis may start with a conversation with your healthcare professional about your symptoms and concerns. 

The next step can be a physical exam to evaluate your pelvic floor and assess how the organs move in the pelvis. If they aren't sliding easily past each other, this is a key indication of possible endometriosis scarring.

Imaging following the physical exam can include:

• A screening pelvic ultrasound to determine if the uterus and bowel slide past each other.
• A specialized MRI that looks at the tissue growth caused by endometriosis.
• An advanced ultrasound to detect more advanced disease.

If nothing irregular is shown on imaging, that doesn't entirely rule out endometriosis. Not all disease can be seen on scans and can only be confirmed by surgery. That's why gathering family history and symptoms is so important in a diagnosis.

Treatment

With the information from the physical exam and imaging, your healthcare professional will discuss treatment options with you. There's no one treatment that fits every woman; treatments are customized to what each person is experiencing and will deliver the most benefit. 

Treatments range from more conservative to more aggressive and include:

• Doing nothing. This is a quality-of-life concern, and for some women, it's peace of mind to know that there's nothing worrisome about their health. If symptoms aren't overly bothersome, choosing to live with the symptoms is OK.
• Taking supplements. Various supplements, including vitamins C, E and N-acetylcysteine, have been studied extensively and can help minimize symptoms.
• Taking anti-inflammatories. Over-the-counter NSAIDs can help provide relief and are most effective when taken 24-48 hours before your period begins.
• Trying hormones. Progesterone-only or combination progesterone-estrogen birth control pills can stabilize the body's hormones, evening out the peaks and valleys in hormonal fluctuations and endometriosis-related symptoms. Using a progesterone-releasing IUD is another option.
• Taking medications to induce menopause. These can improve endometriosis symptoms, but the trade-offs are typical menopause symptoms: hot flashes, difficulty sleeping, mood swings and more.
• Undergoing surgery. This involves removing endometriosis tissue and separating organs that are fused together. It's an effective approach that helps many patients.  

Some women benefit from working with other specialists, including integrative medicine, acupuncture focused on women's health, pelvic floor physical therapy, gastroenterology, urology, interventional radiology and pain psychology.

While there's no cure for endometriosis, the condition is emerging from the shadows and being talked about and addressed more openly, which increases awareness, education and diagnosis. 

Ideally, awareness of endometriosis would begin with pediatricians. Many women diagnosed with endometriosis report experiencing symptoms with their first period. So, if a patient tells their pediatrician that they're having painful periods, discussing the possibility of endometriosis should become part of their conversation.

Research into understanding the immune response of endometriosis continues. One day, it may even lead to a vaccine that stops endometriosis before it starts.

Megan Wasson, D.O., Gynecology, Mayo Clinic, Phoenix

Related posts:

• Mayo Clinic Q and A: Postsurgery recovery for women, what to know with endometriosis
• Mayo Clinic Minute: When to seek care for pelvic pain

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