Endometriosis Care: What all Women Should Know

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Can you imagine having pelvic pain and discomfort for 10 years before getting a correct diagnosis?

That’s the reality for many women in the U.S. living with endometriosis, an often-painful menstrual disease. Endometriosis is caused when tissue from the uterus mistakenly moves out of the organ and attaches to other areas of the body, mostly in the pelvic region, where it can continue to grow and cause problems. As the endometriosis grows, it causes inflammation and can lead to adhesions, scarring, irregular bleeding, bowel or urinary dysfunction, constipation, painful intercourse, or infertility.

One in 10 women in the United States and about 200 million women worldwide suffer from symptomatic endometriosis. March is National Endometriosis Awareness Month and we caught up with Catherine Hoeppner, MD, an obstetrician/gynecologist with the Jackson Medical Group, to learn more about the condition, why it’s so hard to diagnosis and treat, and advice for women and their loved ones who may be suffering from the condition.

What symptoms or warning signs may alert a woman that she has endometriosis? 

Most commonly, patients with endometriosis report symptoms of painful periods, pain during sex, an urge to defecate during their periods, and painful bowel movements. Endometriosis can lead to chronic pain and infertility, although not all women who have the condition will have issues with fertility.

It can be very difficult to diagnosis endometriosis because the symptoms may be vague or may be seen in other conditions. There is also a wide range of severity of the disease.  Some people with endometriosis have no symptoms, while others   experience extreme pain  that  significantly impacts their lives.

At what age can someone begin to experience symptoms?

While endometriosis has been reported in girls before the onset of their first period, many women experience symptoms in their high school and college years. Women with endometriosis are often affected in their 20s and 30s.

How is endometriosis diagnosed?

A definitive diagnosis is only possible through minimally invasive laparoscopic surgery and biopsy of tissue. However, a doctor may make a presumptive clinical diagnosis based on a patient’s history, symptoms, physical exam, and imaging.

Imaging tests, such as a pelvic ultrasound or MRI, can help detect abnormal tissue, lesions, or growths in the body that may be causing symptoms. However, these imaging tests cannot confirm that what we are seeing is in fact endometriosis. Also, sometimes the disease cannot be seen by the naked eye.

What treatments are available for endometriosis?

Unfortunately, endometriosis cannot be cured, but there are ways to manage or lessen symptoms.

Our first line of treatment is usually nonsteroidal anti-inflammatory drugs (NSAIDS) and hormonal birth control pills, but hormonal medications or an intra-uterine device (IUD) may also be used. If her symptoms are not getting better with medications,  a minimally invasive surgery may be the next step. This can range from burning lesions found in the abdomen to a very intricate surgery to dissect lesions embedded into the thin lining of the abdominal wall or attached to other organs.

Some patients also experience relief with acupuncture and pelvic floor physical therapy.. There are physical therapists who specialize in pelvic pain and endometriosis and it’s another great non-medicine alternative to try. Others find some dietary changes and exercise help minimize symptoms and so they incorporate them into their lifestyle, as well.

What advice do you have for women with endometriosis or those who are experiencing symptoms but are not yet diagnosed?

First and foremost, trust yourself. You know your body best. Periods can cause discomfort and some pain, but they should not be so painful that you are missing school or work or that they are causing significant impact on your life.

Be patient and persistent as you see your doctors and try to figure out what is wrong. Don’t give up if one doctor says they can’t find anything.

Don’t be afraid to get a second opinion. If you feel like your doctor is not taking your concerns seriously or they do not have enough experience in treating endometriosis, then find another doctor with the skills, experience, and expertise in the condition.

Also, keep a diary or notes file on your phone detailing symptoms (dates, how long they last, what foods or activities you did before the onset of symptoms, what things make the pain better/worse, etc.). This will help you notice patterns and assist your doctor in pinpointing the cause of the problem.

And finally, follow up with your doctor often. As Ob/gyns, we usually only see non-pregnant patients once or twice a year for annual visits. However, if you are experiencing pain and other symptoms, you should see your doctor more often. Schedule your follow ups, for example every three months. This way, if a new treatment is not working or symptoms are not improving, you can talk to your doctor and try something else.

Catherine Hoeppner, MD, is an obstetrician/gynecologist with the Jackson Medical Group. She specializes in abnormal uterine bleeding, cervical cancer screening, contraception, high risk obstetrics, minimally invasive gynecologic surgery, preconception counseling, and well women care. To make an appointment with her, call 305-585-4564 or visit jacksonmedicalgroup.org.

Catherine Hoeppner, MD

Jackson Medical Group