What are the symptoms of endometriosis?

Endometriosis: symptoms and considerations

Unfortunately, many women get told that they “just have period pain” and are left searching for answers: What are the symptoms of endometriosis? Is that what I’m dealing with? We talk about the symptoms of this disabling condition, whose cause is unknown, and how it can look for fertility, pregnancy, postpartum, and menopause.

What’s endometriosis?

All women have endometrial tissue lining the inside of the uterus. In endometriosis, this tissue also grows outside the uterus—where it shouldn’t be. Usually, this growth is seen on the fallopian tubes, ovaries, and on other organs in the pelvic region, like the intestines. Occasionally, it can be in the chest cavity, too.

When the uterine lining sheds as a part of a woman’s natural cycle (and leads to menstruation, or bleeding), the endometrial tissue outside the uterus sheds, too. The blood outside the uterus causes inflammation, irritation, and, as a result, more pain. Scar tissue can build up from the process, adding to pain levels and affecting organs.

What are the symptoms of endometriosis?

Endometriosis symptoms will vary between women, but some common ones include:

  • Pelvic pain or pain where abnormal tissue grows, especially if growth is in highly innervated areas
  • Worsened pain or cramps during menstruation (pain is sometimes constant)
  • Menstrual irregularities
  • Extreme bloating of the lower belly
  • Pain in the low back
  • Fatigue
  • Painful sex or bowel movements
  • IBS-like symptoms, like diarrhea
  • Changes in bladder frequency or discomfort
  • Fertility issues
  • Back aches

Endometriosis is a chronic condition with 4 stages

Endometriosis has four stages linked to factors surrounding the placement and degree of scarring and adhesions.

  • 1: minimal
  • 2: mild
  • 3: moderate
  • 4: severe

It’s important to know that these stages don’t correlate to the amount of pain a woman feels. For example, someone with stage 1, or mild endometriosis, may have less scarring or fewer implants but her pain level can still be high.

What endometriosis means for fertility

Not everyone with endometriosis has trouble conceiving. However, infertility and endometriosis do overlap. Between 20­ to 40% of women with fertility issues also suffer from endometriosis. (And their endometriosis may contribute to their fertility.) Inflammation or damage caused by endometriosis or scarring may lead to the uterus, ovaries, and fallopian tubes not working as effectively.

When you have endometriosis and you’re pregnant

Unfortunately, just because periods stop during pregnancy doesn’t mean endometriosis will stop. Depending on the woman, endometriosis could get better during pregnancy, stay the same, or even get worse. How’s that possible? Women who find relief may be able to thank an increase in the hormone progesterone, which counters the effect of estrogen and may help limit tissue growth outside the uterus. Other women have an especially difficult time with their endometriosis while pregnant. Even though levels of progesterone increase, estrogen levels do too. Higher estrogen levels can promote endometrial growth.

What can also be painful during pregnancy is old scarring and tissue. The uterus and belly expand to make room for a growing fetus. Already-inflamed endometrial tissue in the abdominal cavity gets tugged on, creating more pain. Many over-the-counter and other medications can’t be safely used during pregnancy, leaving women to lean on mind-body modalities, like self-care.

Higher risk for complications and placenta previa

Women with endometriosis are at a higher risk for miscarriage, preterm birth, and ectopic pregnancy. They’re also more at risk for a serious condition called placenta previa. With placenta previa, the placenta connects to the bottom part of the uterus (not the top or on the side). This can make the placenta more likely to burst during labor, which is an emergency.

Endometriosis and your life postpartum

Postpartum life brings on so many changes and stressors for new moms. Higher levels of hormones that support frequent breastfeeding may keep a woman from getting her period. For some, this will make their endometriosis seem better for a while. However, even in these cases, the endometriosis will return.

For a number of reasons, all women need support during the postpartum period. But this can be especially true for women with endometriosis. Endometriosis and menstrual problems raise your risk for postpartum depression. Postpartum depression comes on quickly and without warning. It can leave you feeling worthless or sad, isolated, unable to sleep, and makes it harder to bond with your baby. It must be addressed and should be supported with what’s right for each individual, from counseling to peer groups and medications or hormones.

What are the symptoms of endometriosis during menopause?

If you don’t get periods during menopause—and estrogen is low—shouldn’t endometriosis go away? Many women get relief through menopause and postmenopause. Without estrogen, the abnormal tissue growth outside of the uterus slows, stops, or shrinks.

However, women going through a tough, symptom-filled menopause find themselves faced with a tough choice. While hormone replacement therapy (HRT) helps with menopausal symptoms, it could make endometriosis worse.

Diagnosing endometriosis

Labs can also be helpful if you and your physician think you may have endometriosis. There’s no one test for endometriosis, but blood work can help rule out other conditions. Other tests that can be useful for looking for endometriosis are a pelvic examination and an MRI. Occasionally, physicians order an ultrasound, but it has limitations and should not be the only test ordered.

Laparoscopy can be used to look for signs of endometriosis and also remove tissue. This procedure requires anesthesia and a small incision. Your physician will be able to look inside your abdomen using a device with a tiny camera.

Finding a healthcare provider for endometriosis

Many women experience frustration when trying to get a diagnosis for endometriosis. A 2017 study pointed to a mean wait of 4.4 years within the United States (length of time between onset of endometriosis symptoms and receiving a diagnosis). Others show many women wait about 7 years for a diagnosis.

Scheduling an appointment with your ob-gyn is a great step toward endometriosis diagnosis and treatment. Make sure he or she listens and takes notes of your history, symptoms, pain levels, and other concerns. If you don’t feel like your pain or symptoms are being taken seriously, it’s time to find a new provider. While that can seem overwhelming, tapping into in-person, organizations, or online support groups can be a great source for recommendations.

Mental healthcare with endometriosis

If you feel like you’re experiencing anxiety or depression from endometriosis, you’re not alone. Pain from endometriosis can feel isolating and interfere with personal well-being and interpersonal relationships. Those feelings of depression and anxiety can then make the physical pain you feel even more intense.

We recommend that anyone dealing with endometriosis seek out a licensed counselor or therapist, whether in person or via telemedicine. Unfortunately, there are a lot of barriers to finding mental healthcare, especially when it comes to cost. If you have private healthcare insurance, check to see if mental health coverage is available. If not, search for a community mental health clinic or a training clinic near you. Some offer reduced or free sessions. Support groups are a no-cost way to connect with other women who are going through and understand what you’re dealing with.