What is Endometriosis?
Endometriosis is one of the most common benign medical conditions affecting one out of every 8-10 women. In endometriosis, the tissue lining inside of the uterus (the womb) that is called endometrium, grows outside of the uterus involving other organs.These are often called “endometriotic implants” or lesions. “Endometriotic implant”/ Endometriosis growths bleed in the same way the lining inside of your uterus (Endometrium) does every month — during your menstrual period. This can cause inflammation and severe pain. In addition, women who are diagnosed with endometriosis may have painful bladder syndrome, digestive or gastrointestinal symptoms similar to a bowel disorder, as well as fatigue, tiredness, or lack of energy, pelvic pain and painful intercourse and fertility problems. This can happen without the woman being aware of having Endometriosis and it often takes 6-10 years for endometriosis to be diagnosed as the cause of these problems.
- Endometriosis is one of the top three causes of female infertility. Sixty percent of women with endometriosis have no symptoms except for an inability to conceive.
- An estimated 6.5 million women in the US and 200 million worldwide are believed to be affected by endometriosis.
- The most common symptom of endometriosis is painful periods.
- Endometriosis is often undiagnosed or misdiagnosed, and women may experience a delay of 6-10 years before the correct diagnosis.
- Due to persistent beliefs that severe pain during periods is normal, and that endometriosis is uncommon in teenagers, adolescents are frequently misdiagnosed.
What are the Symptoms of Endometriosis?
Symptoms can vary from woman to woman and include, but are not limited to:
· Pain in the lower abdomen and/or lower back, sometimes with radiation to the legs
· Pain before and during the period
· Pain with sexual intercourse, pelvic exams, or pelvic ultrasounds
· Mid-cycle pain as the monthly egg ruptures through the ovary called ovulation pain or Mittelschmerz
· Lengthy, heavy periods, with or without clots
· Irregular periods or spotting before the period starts.
Bowel and Bladder Symptoms
· Painful bowel movements and/or urination, especially before or during the menstrual period
· Symptoms of irritable bowel syndrome like bloating, diarrhea or constipation or loose bowel movement, and cramping during a bowel movement
· Blood in the stool or urine
· Nausea and vomiting especially with severe pain and or during the period
Other important symptoms:
· Fatigue and depression
· Infertility or difficulty conceiving
· Lightheadedness and dizziness
Endometrial cells normally are found only in the lining of the uterus, yet in the case of a patient with endometriosis, they may also be found elsewhere in the body, including the abdomen and pelvis, areas around the ovaries, the fallopian tubes and their supporting ligaments, or in the area between the rectum and the pelvis. Endometrial cells that appear in these abnormal locations cause endometriosis. During the monthly cycle, increasing levels of estrogen stimulate the endometrial cells, causing the cells to grow, then break down and bleed internally. This is because the cells follow the same pattern of growth and sloughing as those within the lining of the uterus; but the internal bleeding, unlike a normal period, has no way to leave the body. The internal bleeding leads to inflammation, pain, and the formation of scar tissue (adhesions).
Endometrial cells can also be found inside the ovary, where they can form cysts, called chocolate cysts, or endometriomas. Throughout the month, the old blood that fills the cysts gains a chocolate color (giving chocolate cysts their common name) and can leak out and cause more inflammation, pain, and scar tissue formation.
Extragenital endometriosis, found outside the pelvis, is less common and affects the intestines, the bladder, uterus, diaphragm, lungs, vagina, and the rectum. When endometrial tissue grows into the muscle layer of the uterus, then another type of endometriosis results, called adenomyosis. Furthermore, endometriosis can also grow within existing scars from previous operations like Cesarean sections or even small laparoscopy scars. Less commonly, endometriosis can be found in other more distant locations including the skin, the eyes, the spine, the lungs, and the brain.
Because all of these symptoms may have other causes, it is important to see an Endometriosis Specialist for a thorough evaluation. During your appointment, it is very important to be candid and open while describing your symptoms in detail. This helps your provider to make an accurate diagnosis and to design an optimal treatment plan.
What causes endometriosis?
There are multiple theories about the causes of endometriosis, and the ways in which endometrial cells are spread to different areas of the body. The leading theories include:
· Retrograde menstruation. One idea is that when a woman has her period, some of the blood and tissue from her uterus travels out through the fallopian tubes and into the abdominal cavity. This is called retrograde menstruation. Retrograde menstruation as a theory does not explain why endometriosis has developed in some women without their uterus, such as those with a congenital absence of the uterus, or after the surgical removal of the uterus (a hysterectomy). Additionally, the theory does not explain the fact that endometriosis has been discovered in some men following exposure to estrogen. Explanations for other causes of endometriosis include:
· Metaplasia. Another idea is that some cells in the body outside of the uterus can change to become the same kind of cells that line the uterus. This is a common explanation for endometriosis at unusual sites like the thumb or knee.
· Lymphatic or hematologic spread. Another possible explanation is that the cells from the lining of the uterus travel through the blood vessels or through the lymphatic system to reach other organs or body areas. Also, endometriosis can spread at the time of surgery. For example, a woman undergoing a cesarean section could inadvertently have some endometrial tissues and cells attach to the abdominal incision so that she has endometriosis in the scar from the surgery.
· Immunologic and Genetic predisposition. Nearly all women have some degree of retrograde menstruation, but only a few women will get endometriosis. This may be due to differences in a woman’s immune system. Also, endometriosis is much more common if a close relative also has endometriosis, so there may be genes that influence endometriosis. At this time there is no genetic test available to screen for, or to diagnosis endometriosis, but research in the field is ongoing and holds great promise for future diagnosis and treatment.
How can I be diagnosed?
When you see your doctor and ask about endometriosis, you will likely have a physical exam, a pelvic exam, and a pelvic ultrasound performed. Ultrasounds, examinations, and blood tests, however, cannot give a definitive diagnosis of endometriosis. In fact, in some women, all of these tests may be normal but the woman may still have mild, moderate, or even severe endometriosis. Sometimes, the doctor may recommend hormonal medications and if the symptoms subside, he or she may infer that you have endometriosis.
A biopsy obtained during a surgery is the only definitive way to diagnose endometriosis. Laparoscopy, with or without robotic assistance, is the most common modern surgical technique to diagnose and surgically treat endometriosis. This is an operation in which a camera called a laparoscope is inserted into the abdomen via a small incision near the belly button. This technique was developed and pioneered by Dr. Camran Nezhat, the leading endometriosis expert. This allows the surgeon a close-up view of the pelvic organs and any endometriosis lesions, scar tissue, ovarian cysts, and implants. Depending on the surgeon’s skill and the instruments available to him or her, the surgeon will remove, excise,ablate ,vaporize or burn the endometriosis lesions. For more information on laparoscopic treatment of endometriosis, please see Nezhat.org.
Occasionally diagnosis is made during a laparotomy. A laparotomy is a major operation, which involves opening the abdomen through a larger incision and generally requires a longer healing time and a greater blood loss during the procedure.
Because endometriosis manifests in a variety of ways, diagnosis can be difficult and unfortunately is all too often delayed. On average, there is a delay of 6 to 10 years between a woman’s initial encounter with a doctor and definitive diagnosis of endometriosis.
Can endometriosis be treated?
There is currently no “cure” but various treatments can help relieve and manage the endometriosis symptoms, including ways to decrease the spread of endometriosis. It is important to begin the investigation as soon as symptoms arise. By seeing a gynecologist who specializes in the disorder, a woman may shorten the interval between diagnosis and treatment. This doctor will work with you to find the right treatment.
Treatment options will be based on a woman’s individual goals of pain relief or on fertility. Factors that may play a role in your treatment approach include age, the severity of your symptoms, whether you are trying to conceive, what previous treatments you have used, and the side effect profile of medications. Medications work by disrupting the menstrual cycle described above. They include the combined oral contraceptive pill, the patch or ring, progesterone pill, the progestin intrauterine device or injection, or medications that block estrogen such as leuprolide or letrazole. These medications will change menstrual cycle, generally, prevent the ovary from releasing a monthly egg, and consequently suppress stimulation of endometrial tissue in the uterus or in abnormal locations (endometriosis). Some women opt for complementary alternative medicine, herbal medications, yoga, meditation, physical therapy and prayer to treat their endometriosis in addition to or instead of medical or surgical therapy.
Ultimately, many women benefit from a minimally invasive laparoscopic surgical treatment of endometriosis. It is important that you find a gynecologic surgeon with significant experience in treating endometriosis. It is important that you trust your surgeon before embarking upon a surgery. After surgery, the surgeon may then recommend you restart a hormonal method of medication to inhibit ovulation and thus prevent the endometriosis from reforming.For women trying to get pregnant, the course of action post operatively depends on the findings .
Women with endometriosis often have followed a painful, emotional, difficult path, and many women find that enlisting support from other women with endometriosis can be very helpful. Joining a Facebook group such as EndoMarch, and connecting with a worldwide group committed to raising awareness of, and searching for a cure for, endometriosis during the annual EndoMarch can provide both emotional healing and a sense of empowerment.
Do you think you may have endometriosis?
If you have one or more of the symptoms described here, it is quite possible that you are one out of the 8-10 women who has endometriosis. Or if you are trying to get pregnant and all the tests for you and your husband is normal , you have a good chance to have endometriosis.Not all the women with endometriosis have pain. Infertility can be a sign of endometriosis.
Because some physicians take care of a great many disorders, not all doctors can be experts in diagnosing and treating endometriosis. So, it is advisable to seek care from a gynecologist who specializes in endometriosis.
Too many women feel they are not listened to by their family, friends, and healthcare providers when it comes to endometriosis symptoms. Women should no longer unnecessarily continue to suffer from this treatable condition. Please read on to learn more about how endometriosis occurs, and how you or your loved-one can be properly diagnosed and treated.
Endometriosis Publications from Drs. Nezhat
With permission from Dr. Camran Nezhat and nezhat.org
- Drs. Nezhat’s Surgery Textbook
- Peer-reviewed Articles, Part I
- Peer-reviewed Articles, Part II
- Book Chapters
- Letters to the Editor
- Video Presentations
Support & Research Groups
We’d like to express our gratitude to the dozens of support groups that are providing not only compassionate support, but exceptional educational resources for those with endometriosis and other disabling disorders.
Those listed below have been brought to our attention by the worldwide team of EndoMarch volunteers as some of their favorite. Please feel free to email us at firstname.lastname@example.org, if you would like to suggest other support groups to be listed here.
National & International Research & Support Organizations (alphabetical)