Endometriosis is a significant health problem affecting 1 in 10 people of childbearing age. But it’s not unusual for them to go years before getting the treatment they need.
Many of the patients who come to my OB-GYN practice have sought help for their endometriosis before meeting with me. Their concerns haven't always been addressed, though, resulting in continued pain or debilitating symptoms. This can affect their quality of life, intimate relationships, and ability to get pregnant.
It doesn't have to be this way. Knowing the facts about endometriosis can help people better advocate for themselves and get the care they deserve. Here are six things I share with my patients — and that all people of childbearing age should know.
1. The key problem with endometriosis is displaced tissue.
Endometriosis is a painful condition where tissue similar to the lining of the uterus grows outside of the uterus, in places where it doesn't belong. Endometrial growths most often form in areas in or near the reproductive tract, like the ovaries, fallopian tubes, vagina, vulva, cervix, bowel, bladder, or rectum. Just like tissue inside the uterus, endometrial tissue responds to changes in the hormone estrogen. It can grow and bleed during a menstrual cycle. But unlike tissue inside of the uterus, it can't easily leave the body during a menstrual period. This causes the tissue to become irritated, swollen, and inflamed.
Endometrial growths can cause significant pain and other problems. My patients with endometriosis may experience very intense menstrual cramps and heavy menstrual bleeding. They may also have chronic pelvic and lower back pain, deep pain during or after sex, painful bowel movements, or pain while urinating. In addition, many of my patients experience digestive problems like diarrhea, constipation, nausea, or bloating.
We don't fully understand what causes endometriosis, but it's thought to occur when tissue shed during a period flows in places it shouldn't, like the fallopian tubes or the pelvis. Genetics, hormones, and immune system problems may also play a role.
2. Any person with a uterus of childbearing age can get endometriosis.
The condition can occur in any person who has menstrual periods, but it's most common in their 30s and 40s. You may be more prone to the condition if:
- You have never given birth
- Your periods are longer than seven days
- Your menstrual cycles are shorter than 27 days
- You have a close female relative (mother or sister, for example) with endometriosis
- You have a health problem, such as uterine fibroids, that blocks the normal flow of menstrual blood from your body during your period
3. Endometriosis can lead to infertility.
In addition to causing severe pain, endometriosis can make it harder for a person with a uterus to get pregnant. In fact, it's estimated that 4 in 10 women with endometriosis experience infertility. Inflamed endometrial tissue and scarring can damage or block parts of the reproductive tract, like the fallopian tubes or ovaries. That can make it more difficult for sperm to find an egg and fertilize it.
Fertility challenges are always tough. I tell my patients that while getting pregnant with endometriosis can be challenging, it may be possible with the right treatment.
4. People with endometriosis are often misdiagnosed.
People often experience symptoms for years before being diagnosed with endometriosis. Unfortunately, this is sometimes a matter of patients not having their concerns taken seriously. Many of my patients with endometriosis talk of being told by previous doctors things like they simply had bad periods.
It's not unusual for patients to get stuck in a cycle of being referred to one specialist after another in an endless search for answers. Endometriosis symptoms are frequently misinterpreted as problems that can be solved by a gastroenterologist, endocrinologist, orthopedist, or even a psychiatrist — instead of a gynecologist.
5. Finding the right doctor matters.
Many of my patients with endometriosis tell me that they've long had the sense that something was wrong due to painful periods — even when other doctors dismissed their concerns. If you think that you might have endometriosis, find a provider that you trust and who won't push your concerns aside. A doctor who is actively engaged in helping you will make it easier to get the correct diagnosis faster so you can start taking steps to feel better.
6. Treatment can help you feel better.
There's no cure for endometriosis. But we have treatment options for managing endometrial growths and the symptoms that come with them. Some treatments can also improve the chance of becoming pregnant:
- Hormonal birth control. Birth control pills and shots are typically a first-line treatment for people who are not trying to get pregnant. Both can help stop bleeding and reduce or eliminate pain.
- Gonadotropin-releasing hormone (GnRH) agonists. The medication stops the body from making the hormones that trigger ovulation and monthly periods and can keep endometrial growths in check. GnRH causes patients to experience temporary menopause. But when the medicine is stopped and a patient gets their period back, they may have an easier time getting pregnant.
- Surgery. Patients with severe symptoms who haven't found relief with medication can have endometrial growths removed surgically. In most cases, the growth and pain will eventually come back. But hormonal birth control or other medications may help slow this regrowth. Patients with very severe symptoms may consider a hysterectomy as a last resort, or if they don’t plan on any future pregnancies.
My patients who are nearing menopause often ask if their endometriosis symptoms will improve after they reach menopause. And I tell them they may experience fewer symptoms since endometrial growths start to shrink after the body stops making the hormone estrogen. However, if they opt to take menopausal hormone therapy, they may still have symptoms of endometriosis. I can discuss treatment options for any postmenopausal people who still have problems with endometriosis.
Get help from someone who will listen to your concerns
If you think you might have endometriosis, make an appointment with an OB-GYN at Temple Health. Our experienced physicians are focused on paying attention to your concerns and making an accurate diagnosis that will determine the best treatment plan for you.
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