What exactly IS Endometriosis?
Endometriosis explained: 10 things women should know
It is a complex disease that has been known for quite some time but still lacks basic understanding. It still takes years (avg 7-8 years) to be diagnosed and addressed. It may affect more than 11% of American women between 15 and 44.
It affects our physical and mental wellness and our entire lives in general! We smile through excruciating pain every single day. This disease rocks us to the absolute core. Despite the common assumption that endometriosis only affects women of childbearing age, it affects people of all ages, including children.
- What is endometriosis?
Endometriosis, sometimes called “endo,” is a common health problem in women. It is derived from the word endometrium, the tissue that normally lines the uterus or womb. Endometriosis happens when tissue similar to the lining of the uterus grows outside your uterus and on other areas of your body where it doesn’t belong.
Most often, endometriosis is found on the:
- Fallopian tubes
- Tissues that hold the uterus in place
- Outer surface of the uterus
Growths can also appear on the vagina, cervix, vulva, bowel, bladder, or rectum. On rare occasions, endometriosis can appear in other parts of the body, such as the lungs, brain, and skin.
2. What are the symptoms of endometriosis?
Symptoms of endometriosis can include:
- Pain. This is the most common symptom. Women with endometriosis may have many kinds of pain. These include:
- Very painful menstrual cramps. The pain may get worse over time.
- Chronic (long-term) pain in the lower back and pelvis
- Pain during or after sex. This is usually described as a “deep” pain and is different from pain felt at the entrance to the vagina when penetration begins.
- Intestinal pain
- Painful bowel movements or pain when urinating during menstrual periods. You may also find blood in your stool or urine in rare cases.
- Bleeding or spotting between menstrual periods. This can be caused by something other than endometriosis. If it happens often, you should see your doctor.
- Infertility, or not being able to get pregnant.
- Stomach (digestive) problems. These include diarrhea, constipation, bloating, or nausea, especially during menstrual periods.
3. Why does endometriosis cause pain and health problems?
Endometriosis growths are benign (not cancerous). But they can still cause problems.
Endometriosis growths may swell and bleed in the same way the lining inside of your uterus does every month — during your menstrual period. This can cause swelling and pain because the tissue grows and bleeds in an area where it cannot easily get out of your body.
The growths may also continue to expand and cause problems, such as:
- Blocking your fallopian tubes when growths cover or grow into your ovaries. Trapped blood in the ovaries can form cysts.
- Inflammation (swelling)
- Forming scar tissue and adhesions (type of tissue that can bind your organs together). This scar tissue may cause pelvic pain and make it hard for you to get pregnant.
- Problems in your intestines and bladder
4. What causes endometriosis?
No one knows for sure what causes this disease. Researchers are studying possible causes:
- Problems with menstrual period flow. Retrograde menstrual flow is the most likely cause of endometriosis. During the period, some of the tissue shed flows through the fallopian tube into other areas of the body, such as the pelvis.
- Genetic factors. Because endometriosis runs in families, it may be inherited in the genes.
- Immune system problems. A faulty immune system may fail to find and destroy endometrial tissue growing outside of the uterus. Immune system disorders and certain cancers are more common in women with endometriosis.
- Hormones. The hormone estrogen appears to promote endometriosis. Research is looking at whether endometriosis is a problem with the body’s hormone system.
- Surgery. Endometrial tissue could be picked up and moved by mistake during surgery to the abdominal area, such as a Cesarean (C-section) or hysterectomy. For instance, endometrial tissue has been found in abdominal scars.
5. How is endometriosis diagnosed?
If you have symptoms of endometriosis, talk with your doctor. The doctor will talk to you about your symptoms and do or prescribe one or more of the following to find out if you have endometriosis:
- Pelvic exam. During a pelvic exam, your doctor will feel for large cysts or scars behind your uterus. Smaller areas of endometriosis are harder to feel.
- Imaging test. Your doctor may do an ultrasound to check for ovarian cysts from endometriosis. The doctor or technician may insert a wand-shaped scanner into your vagina or move a scanner across your abdomen. Both kinds of ultrasound tests use sound waves to make pictures of your reproductive organs. Magnetic resonance imaging (MRI) is another standard imaging test that can take a picture of the inside of your body.
- Medicine. If your doctor does not find signs of an ovarian cyst during an ultrasound, he or she may prescribe medicine:
- Hormonal birth control can help lessen pelvic pain during your period.
- Gonadotropin-releasing hormone (GnRH) agonists block the menstrual cycle and lower the amount of estrogen your body makes. GnRH agonists also may help pelvic pain.
- If your pain improves with hormonal medicine, you probably have endometriosis. But these medicines work only as long as you take them. Once you stop taking them, your pain may come back.
- Laparoscopy. Laparoscopy is a type of surgery that doctors can use to look inside your pelvic area to see endometriosis tissue. Surgery is the only way to be sure you have endometriosis. Sometimes doctors can diagnose endometriosis just by seeing the growths. Other times, they must take a small tissue sample and study it under a microscope to confirm this.
6. How is endometriosis treated?
There is no cure for endometriosis, but treatments are available for the symptoms and problems it causes. Talk to your doctor about your treatment options.
If you are not trying to get pregnant, hormonal birth control is generally the first step in treatment. This may include:
- Extended-cycle (you have only a few periods a year) or continuous cycle (you have no periods) birth control. These types of hormonal birth control are available in the pill or the shot and help stop bleeding and reduce or eliminate pain.
- Intrauterine device (IUD) to help reduce pain and bleeding. The hormonal IUD protects against pregnancy for up to 7 years. But the hormonal IUD may not relieve your pain and bleeding due to endometriosis for that long.
Hormonal treatment works only as long as it is taken and is best for women who do not have severe pain or symptoms.
If you are trying to get pregnant, your doctor may prescribe a gonadotropin-releasing hormone (GnRH) agonist. This medicine stops the body from making the hormones responsible for ovulation, the menstrual cycle, and the growth of endometriosis. This treatment causes a temporary menopause, but it also helps control the growth of endometriosis. Once you stop taking the medicine, your menstrual cycle returns, but you may have a better chance of getting pregnant.
Surgery is usually chosen for severe symptoms when hormones are not providing relief or if you are having fertility problems. During the operation, the surgeon can locate any areas of endometriosis and may remove the endometriosis patches. After surgery, hormone treatment is often restarted unless you are trying to get pregnant.
Other treatments you can try, alone or with any of the treatments listed above, include:
- Pain medicine. For mild symptoms, your doctor may suggest taking over-the-counter medications for pain. These include ibuprofen (Advil and Motrin) or naproxen (Aleve).
- Complementary and alternative medicine (CAM) therapies. Some women report relief from pain with therapies such as acupuncture, chiropractic care, herbs like a cinnamon twig or licorice root, or supplements, such as thiamine (vitamin B1), magnesium, or omega-3 fatty acids.5
7. Can you have endometriosis after menopause?
The hormone estrogen stimulates endometriosis, so in menopause, endometriosis is rarely a problem because the ovaries have stopped producing estrogen. Women with endometriosis are usually able to clear the endometriosis implants after menopause.
8. Is infertility linked to endometriosis?
Infertility is not always associated with endometriosis. A woman can have endometriosis and not necessarily have infertility. A woman may not know if she has fertility problems unless she tries to conceive and is unsuccessful in getting pregnant. Infertility is the inability to achieve pregnancy within six months to one year, depending on the woman’s age.
9. Is it challenging to get pregnant if you are being treated for endometriosis?
If a woman is on medications for endometriosis, she will not likely achieve pregnancy because ovulation is suppressed. So, if a woman wants to get pregnant, she might consider laparoscopy instead of medical therapy.
10. What do you see for the future of treating endometriosis?
Endometriosis is a widespread condition, affecting 200 million people with uteruses worldwide. However, it is still poorly understood. Education and awareness of endometriosis are essential to diagnose this condition at an earlier age than it typically is currently. Treatments like hormonal birth control and surgery can help reduce symptoms, but there is no cure yet. There are newer medications currently in development.
Scientists are still studying endometriosis. More investigation is needed, but research is underfunded. Due to this, patient-led advocacy groups are spreading awareness. They are working towards a future with less stigma and more hope for those with endometriosis.