Living With Endometriosis

Endometriosis affects 1 in 10 reproductive-age women—more than 6.5 million in the United States and 190 million around the globe—impacting daily life, relationships and fertility. Women who develop it can experience multiple painful symptoms or none at all, and the cause of the condition is still being studied. However, there are multiple conventional and alternative ways to treat it.

Overview

Normal endometrial tissue that lines the uterus builds up over the course of the menstrual cycle, sloughing off during menstruation and out of the body through the vagina.

Endometriosis is a condition in which this tissue is also found outside the uterus, most commonly around the pelvic organs (ovaries, fallopian tubes) and pelvic lining. Because it has no pathway out of the body, it becomes trapped, which can lead to ovarian cysts, tissue irritation, scar tissue and fibrous tissue, causing pelvic organs to cling to each other.

Beyond painful periods (dysmenorrhea), symptoms of endometriosis include pelvic cramping; lower-back pain; abdominal pain; pain during or after sex, or during a bowel movement or urination; heavier than normal periods; bleeding between periods; fatigue; nausea; bloating; constipation; and diarrhea.

Some women experience very few symptoms and aren’t diagnosed until evaluated for infertility, when they learn their disease is advanced. Others suffer severely but have only mild endometriosis with little scarring or complications. Notably, symptoms often improve temporarily during pregnancy. Menopausal women not taking estrogen through hormone replacement therapy (HRT) may find symptoms disappearing.

The disease can cause mild to severe pain, typically at its worst during menstruation. It can lead to decreased fertility or infertility by obstructing the egg’s pathway from the ovary, through the fallopian tube and into the uterus, due to scarring of the fallopian tubes.

As high as 50 percent of women with endometriosis have difficulty getting pregnant, and 40 percent of women with infertility have endometriosis.

Fertility treatments, such as in vitro fertilization (IVF), can help some couples who are having difficulty. Complications are more common with age. Endometriosis additionally increases risk of ovarian cancer and of endometriosis-associated adenocarcinoma, but both are considered rare, with ovarian cancer impacting about 1.8 percent of women with endometriosis, compared to 1.3 percent of the general female population.

Endometriosis typically develops several years after a female begins to menstruate. The exact cause isn't known but scientists have several theories, including retrograde menstruation (where menstrual blood flows backward into the pelvic cavity and becomes endometrial tissue); transformation of the cells that line the abdomen into endometrial-like cells, due to hormones or immune factors; immune system disorders; and surgical scar implantation by the movement of endometrial cells to the incision site following a hysterectomy or C-section.

Risk factors for the disease include beginning menstruation at a young age or menopause at an older age; never having given birth; low body mass index; one or more relatives with the disease; higher levels of circulating estrogen; heavier periods or periods longer than seven days; menstrual cycles shorter than 27 days; and reproductive tract abnormalities. Diagnosis is made through a combination of a pelvic exam, ultrasound, MRI and laparoscopy.

Treatment for endometriosis includes over-the-counter pain medications (ibuprofen, naproxen, acetaminophen) and sometimes hormone therapy (for women not attempting to get pregnant).

Hormone therapy, which minimizes hormonal changes, thereby reducing endometrial tissue fluctuation and breakdown, includes contraceptives (birth control pills, vaginal rings, patches), progestin therapy (hormonal IUDs such as Mirena, the contraceptive implant Nexplanon, progestin pill Camila), aromatase inhibitors, and gonadotropin-releasing hormone (GnRH) agonists and antagonists. Surgery to remove endometrial tissue can increase conception odds and/or decrease pain.

Natural ways to manage endometriosis pain

Alternative treatments for endometriosis include acupuncture, dietary changes and supplements, and physical activity.

A 2017 PLOS One review of 10 studies found acupuncture significantly improved endometriosis pain. Eating less red meat while increasing the consumption of plant-based whole foods (fruits, vegetables, legumes, whole grains) can support overall health.

A 2020 study from BMJ Open reported improvement in symptoms through dietary change, including elimination diets, which cut out potentially problematic foods (sugar, processed foods, dairy, gluten) and slowly adding them back to identify triggers.

Supplements including turmeric and herbs may be helpful; some studies suggest turmeric may inhibit a form of estrogen called estradiol, possibly preventing growth of endometrial tissue and alleviating endometriosis symptoms. The International Journal of Molecular Sciences published a study in 2020 that indicated curcumin (the primary active ingredient in turmeric) can decrease inflammation and oxidative stress and may prevent the disease. Omega-3 fatty acids may also help due to their anti-inflammatory properties.

Exercise can be therapeutic if done in moderation. A 2017 study from the Journal of Physical Therapy Science showed an eight-week exercise program incorporating postural training, breathing exercises, stretching and relaxation significantly reduced pain in 20 endometriosis patients.

Walking, stretching, yoga, pilates and other gentle exercises can cause an increase in endorphin release, which reduces pain and helps lower estrogen levels, improving symptoms. However, high-impact exercise or any activity that causes discomfort should be avoided. Rest is also critical. Listen to your body and take it easy when you feel you need to. Many women with endometriosis find they need to ease up on exercise and get extra rest around menstruation.

A gentle massage of the abdomen, obliques and back muscles may relieve discomfort, particularly just before menstruation. Utilizing a soothing essential oil such as lavender, cinnamon, clove, rose or sage for aromatherapy or massage can provide relief.

Simple palliatives can help too, such as a hot water bottle or heating pad placed on the lower abdomen (be sure to keep a layer of clothing or a towel between the heat source and your skin). A steamy shower and warm bath can similarly provide comfort and relief. A 2001 study from Obstetrics & Gynecology reported a low-level heating pad was as effective as ibuprofen in treating dysmenorrhea.

Engaging in sex

Endometriosis can add challenges to your love life. Penetration of the vagina causes movement and stretching of pelvic organs and any overlying endometrial tissue, which can be uncomfortable or painful. Symptoms during sex are often worse for women with endometrial tissue growing behind the vagina or lower uterus. Certain treatments for endometriosis (hormonal treatments, hysterectomy) that decrease estrogen can also cause unpleasant symptoms, including vaginal dryness.

But women with endometriosis can still have satisfying sex lives. Pay attention to what types of sex (deep vs. shallow penetration, vaginal vs. anal) cause more or less pain. Positions that decrease pressure on the pelvis may reduce discomfort—try having the partner with endometriosis on top. Positions that give you more control over speed and depth of penetration may be more comfortable—spooning and face-to-face tend to be better, missionary often less so.

Use lube, particularly if you're experiencing vaginal dryness. If penetrative sex isn't comfortable, explore other ways to get intimate: oral sex, massage, foreplay, sex toys. A warm bath and an over-the-counter pain medication before sex may improve comfort.

Be communicative with your partner about what feels good and what doesn't, and work together to find what works for you both. Be mindful of your cycle: Having sex in the two weeks after your period or the week after ovulation may be most comfortable. Some women have pain after, rather than during, sex. A doctor can discuss ways to manage that.

Sometimes you may not feel in the mood, and that's OK. Communicating with your partner and being open can help mitigate any tension or confusion around the issue. You'll both feel better knowing it's not personal. If you're experiencing ongoing issues, reach out to a sex therapist for guidance. They'll have tips to improve comfort and advice for maintaining a healthy relationship despite the challenges.

Supporting a partner suffering from endometriosis

If your partner is struggling with the disease, show your support by asking how they're doing and how you can help. Practice listening. Know when their discomfort is at its worst, and be extra helpful during that time. Be patient and understanding if they need to cancel plans or aren't up for your usual activities, including sex. Suggest snuggling with a good movie rather than a night out if you know they're symptomatic. Bring out a warm blanket and heating pad or make them a turmeric latte on a flare-up day. Little gestures can go a long way.