What Does Endometriosis Feel Like?

According to the World Health Organization, endometriosis affects 190 million girls and women of childbearing age worldwide. This painful condition occurs due to the growth of endometrium outside the uterus (womb). Endometrium is the normal tissue lining of the uterus. Endometriosis lesions can involve the ovaries, fallopian tubes, and other reproductive organs in the pelvis, causing pelvic pain. Severe symptoms can greatly impact quality of life and even affect fertility. You cannot prevent endometriosis, but treatments can help to manage endometriosis pain.

Please continue reading to learn more about endometriosis symptoms, including what endometriosis pain feels like. We will also talk about the risk factors for developing endometriosis, tests done for an endometriosis diagnosis, and ways of treating endometriosis.

What are the risk factors for endometriosis?

Known factors that can increase endometriosis risk include:

Starting menstrual periods at an early age
Heavy menstrual periods that last more than 7 days
Short menstrual cycles of less than 27 days
High estrogen levels in the body
Higher lifetime exposure to estrogen, for example, in women who have never given birth
Going through menopause at an older age
Family history of endometriosis in a mother, sister, or aunt
Low body mass index (BMI)
Medical conditions that prevent blood from exiting the body during a menstrual period
Reproductive tract disorders

How do you know if you have endometriosis?

The most common symptom of endometriosis is dysmenorrhea (painful periods). Pain occurs during menstrual periods because thickened endometrial tissue breaks down during bleeding. This tissue becomes trapped in the body and cannot exit like menstrual blood. It irritates the surrounding tissue in the pelvic cavity and forms bands of fibrous tissue (scars), causing the pelvic organs to stick together. This causes chronic pelvic pain. The scar tissue can also interfere with fertility and make it harder to get pregnant.

Besides these common symptoms, severe endometriosis can cause more severe symptoms such as painful intercourse, pain with bowel movements and urination, heavy menstrual bleeding, and bleeding between menstrual periods. In addition, other symptoms of endometriosis can include fatigue, nausea, diarrhea, constipation, and bloating, especially during menstrual periods.

The risk of endometriosis is significantly higher in women who have three symptoms together (painful periods, painful sex, and painful defecation).

Note that endometriosis can resemble other conditions, such as irritable bowel syndrome. However, the correlation of the symptoms with the menstrual cycle is a clue that points toward endometriosis.

What does the pain feel like with endometriosis?

Endometriosis pain can vary from person to person. Surveys have shown that a majority of women with endometriosis feel pelvic pain due to the endometriosis tissue. Approximately 94% have period pain, 91% report abdominal pain and cramping unrelated to their menstrual cycle, and 82% suffer from flank and back pain.

What does stage 1 endometriosis feel like?

Endometriosis symptoms do not always correlate with the severity of the condition. For example, someone with advanced endometriosis or deep endometriosis may not have severe pain, while another person with comparatively mild endometriosis may have debilitating pain.

Does endometriosis hurt every day?

Many women with endometriosis feel pain during their menstrual period. However, according to the Endometriosis Foundation, up to 40% of affected women have endometriosis symptoms every day. The symptoms of endometriosis typically become less during pregnancy and go away after menopause if you are not on hormone replacement therapy.

How do doctors diagnose endometriosis?

If your primary care physician or OB/GYN suspects endometriosis, they may send you to an endometriosis specialist. Doctors can diagnose endometriosis with a pelvic examination, ultrasound imaging studies, magnetic resonance imaging (MRI) scans, and laparoscopy exploration to find endometrial tissue outside the uterus.

How do doctors treat endometriosis and manage endometriosis pain?

Treatment for an endometriosis diagnosis depends on the severity of the symptoms and the patient’s goal. For example, the goal for one patient may be to relieve endometriosis pain, while another may hope to treat infertility. Endometriosis treatments may consist of the following:

Over-the-counter pain medications

Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin) and naproxen sodium (Aleve) can help to control endometriosis pain.

Hormone therapy

Hormonal contraceptives like birth control pills, rings, and patches can provide pain relief by regulating hormone levels during the menstrual cycle, slowing the growth of new endometrial tissue, and preventing new endometrial cells from implanting outside the uterus.

Progestin therapy

Progestin treatments such as progestin pills (Camila), contraceptive implants (Nexplanon), intrauterine devices containing levonorgestrel (Skyla, Mirena), and contraceptive injections (Depo-Provera) can stop menstrual periods and slow the growth of endometrial lesions, thus relieving endometriosis symptoms.

Gonadotropin-releasing hormone (Gn-RH) agonists

GnRH agonists such as leuprolide (Lupron Depot, Eligard), goserelin (Zoladex), and nafarelin (Synarel) are available in nasal spray and injection forms. They lower estrogen levels, cause endometrial tissue to shrink, and prevent menstruation by causing artificial menopause. However, they can lead to menopausal symptoms like vaginal dryness, hot flashes, and bone loss, which may require treatment with hormone replacement therapy (low-dose estrogen or progestin). Once you stop taking GnRH agonists, menstrual periods return, and you regain the ability to get pregnant.

Aromatase inhibitors

Aromatase inhibitors such as anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin) can lower estrogen levels in the body. These drugs are sometimes used to treat endometriosis along with combination hormonal contraceptives or progestin therapy.

Endometriosis surgery

As mentioned, endometriosis can cause female infertility. A minimally invasive gynecologic surgeon may perform a conservative surgery laparoscopically to preserve the uterus and fallopian tubes while surgically removing endometriosis lesions. This can increase your chances of becoming pregnant. Surgery is also sometimes done to relieve severe endometriosis pain. However, the pain relief may not be permanent, and symptoms of endometriosis can come back after the procedure.

Fertility treatments

Women who are having trouble becoming pregnant may undergo fertility treatments with medications to stimulate the ovaries to release more eggs or surgical treatments like in vitro fertilization.

Hysterectomy and bilateral oophorectomy

Hysterectomy (surgical removal of the uterus) and bilateral oophorectomy (surgical removal of both ovaries) is no longer considered effective treatment for endometriosis. Experts now say the focus should be removing endometriosis tissue rather than the reproductive organs. Hysterectomy and bilateral oophorectomy lead to a fall in female hormone levels and early menopause. This raises the risk of blood clots, heart disease, certain metabolic conditions, and even early death. However, a hysterectomy for endometriosis may be considered in women who don’t plan to become pregnant in the future and have severe symptoms such as heavy menstrual bleeding and painful periods.

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