The ACOG's website reflects what is stated in their practice bulletin. We know there are serious problems with the policies and practices that the ACOG maintains regarding endometriosis. Their website is a tool to help patients and practitioners receive up-to-date guidance on diseases that impact their patients. Having wrong information is quite harmful and not only contributes to the delay in diagnosis that patients face, but also obstructs their ability to get proper and timely care. The ACOG even put forth the wrong definition of the disease on the site. If the ACOG cannot properly define a disease that impacts millions of their patients, how can they possibly assert that they are doing all they can to treat the disease and help patients?
Months ago, when our community first started talking with the ACOG about the petition and the crisis impacting our community, we alerted them to the issues on their website and even took the time to rewrite the information from a patient centered, multi-disciplinary approach. The ACOG is currently asking for feedback on their website https://acog.az1.qualtrics.com/jfe/form/SV_d9YLxbv9Bu7xrfL?utm_source=facebookand it is our hope that the community takes the time to fill out the survey and implore them to change the information they provide regarding endometriosis.
For those who are interested, this is what we hoped they would incorporate on their webpage to help patients and professionals treat the disease.
The following document was created to be used as a guide to update and replace the current information at: https://www.acog.org/Patients/FAQs/Endometriosis
Furthermore, we hope this information can be used to update and replace the current patient pamphlet on endometriosis.
ACOG: Endometriosis Fact Sheet
What is endometriosis?
Endometriosis is a condition in which tissue similar to the tissue that lines the uterus (the endometrium) is found elsewhere in the body.
How common is endometriosis?
Endometriosis occurs in about one in ten women. It is estimated to impact 5 million women in the United States and 176 million women worldwide. Endometriosis has been known to impact patients of all different ages, ranging from pre-teens to post-menopausal women.
Where does endometriosis occur?
Endometriosis most often impacts organs and structures within the pelvic cavity, although endometriosis lesions can be found in distal sites as well. Endometriosis occurs in the following places:
· Fallopian tubes
· Bladder and ureters
· Intestines, rectum, appendix, colon, bowel, gallbladder
· Cul-de-sac (the space behind the uterus), uterosacral ligaments
· Distal sites can include but are not limited to the lungs, the diaphragm, the sciatic and pudendal nerves and the brain.
How does endometriosis cause problems?
Endometriosis lesions are associated with symptomatic pain and discomfort. The amount of disease present does not directly correlate to the level of pain a patient will experience. Some endometriosis patients may even present without any symptoms of the disease. Endometriosis lesions also trigger an inflammatory response from the body. Surrounding healthy tissue can become irritated, inflamed, and swollen often causing scar tissue, called adhesions, to form. Sometimes adhesions can cause organs to stick together. The bleeding, inflammation, and scarring can cause additional pain, especially before and during menstruation, although, some patients experience intermittent pain throughout their entire cycle. Patients who have gone through menopause or had a hysterectomy and/or oophorectomy, as well as patients who are not having a menstrual cycle due to hormone treatments, can still experience endometriosis related pain and symptoms.
What is the link between infertility and endometriosis?
Almost 40% of women with infertility have endometriosis. Inflammation from endometriosis may damage the sperm or egg or interfere with fertilization and implantation. In some cases, scar tissue and adhesions from endometriosis can cause anatomical distortion which may impact fertility.
What are the symptoms of endometriosis?
The most common symptom of endometriosis is chronic (long-term) pelvic pain, especially during ovulation, just before and during the menstrual period. Pain also may occur during sex. If endometriosis is present on the bowel, pain during bowel movements can occur as well as diarrhea and/or constipation. If it affects the bladder or ureters, patients may experience frequent urination or lower back pain. Fatigue, infertility, as well as a family history of endometriosis, may also be indicators of the disease.
How is endometriosis diagnosed?
A health care provider first may take your complete medical history and listen for symptoms of endometriosis. A physical exam, including a pelvic exam, may indicate any pain or tenderness the patient is experiencing. While vaginal ultrasounds and other imagining, such as a pelvic MRI or CT scan may indicate endometriomas or larger invasive nodules, the vast amount of endometriosis cannot be seen on imaging. While symptoms may indicate where endometriosis could be in the body, the only way to tell for sure that you have endometriosis is through a surgical procedure called laparoscopy. During a laparoscopic procedure, endometriosis can be identified through removing the suspected tissue and sending it to pathology to be confirmed. This is called a biopsy. Suspected impacted areas of disease and inflammation can also be documented through pictures and video imaging at the time of the procedure.
How is endometriosis treated?
Through a thorough evaluation of your medical history, your doctor can suspect through the symptoms you are experiencing, if you may have endometriosis and which systems in your body could be possibly implicated. Unfortunately, there is no cure for endometriosis. Pain relievers, such as nonsteroidal anti-inflammatory drugs (NSAIDs), and hormonal medications, including birth control pills, progestin-only medications, and gonadotropin-releasing hormone agonists may relieve symptoms for some patients for a period of time, but these drugs do not get rid of endometriosis tissue. Surgery is the only option for treating the disease which also permits biopsy confirmation.
How can surgery treat endometriosis?
Surgery can be done to relieve pain and improve fertility. Laparoscopic surgery performed by your gynecologist can help identify the disease. During surgery, endometriosis lesions should also be removed and biopsied. If you have endometriosis symptoms indicative of invasive disease, or you have had little to no relief from your laparoscopy, you may ask your doctor for a referral to see an endometriosis specialist who has experience in removing the disease using a meticulous, multi-organ approach that removes as much disease as possible.
What if I still have severe pain that does not go away even after I have had treatment?
Endometriosis can be a complex disease to treat and can have a significant impact on all areas of a patient’s life. Pain management protocols, pelvic floor therapy, acupuncture and an anti-inflammatory diet are some complimentary therapies that can help patients manage continued symptoms. Patients with endometriosis also may experience depression and anxiety. Seeing a mental health provider or seeking out endometriosis support groups can also be beneficial to patients. Since endometriosis by definition is invasive tissue occurring outside of the uterus, a hysterectomy may not provide relief to suffering patients, unless they have adenoymosis, a separate disease in which endometrial glands and stroma can be found within the myometrial lining of the uterus. Even with the removal of the uterus and ovaries, any remaining disease can cause pain. Patients considering a hysterectomy should seek out the advice of an endometriosis specialist to investigate all options.
Adhesions: Scarring that binds together the surfaces of tissues.
Biopsy: A minor surgical procedure to remove a small piece of tissue that is then examined under a microscope in a laboratory.
Bladder: A muscular organ in which urine is stored.
Endometriosis: A condition in which tissue similar to that normally lining the uterus is found outside of the uterus, usually on the ovaries, fallopian tubes, and other pelvic structures.
Endometrium: The lining of the uterus.
Estrogen: A female hormone produced in the ovaries.
Fallopian Tubes: Tubes through which an egg travels from the ovary to the uterus.
Gonadotropin-Releasing Hormone Agonists: Medical therapy used to block the effects of certain hormones.
Hormone: A substance produced by the body to control the functions of various organs.
Hysterectomy: Removal of the uterus.
Infertility: A condition in which a couple has been unable to get pregnant after 12 months without the use of any form of birth control.
Inflammation: Pain, swelling, redness, and irritation of tissues in the body.
Laparoscopy: A surgical procedure in which an instrument called a laparoscope is inserted into the pelvic cavity through small incisions. The laparoscope is used to view the pelvic organs. Other instruments can be used with it to perform surgery.
Ovaries: Two glands, located on either side of the uterus, that contain the eggs released at ovulation and that produce hormones.
Pelvic Exam: A physical examination of a woman’s reproductive organs.
Peritoneum: The membrane that lines the abdominal cavity and surrounds the internal organs.
Progestin: A synthetic form of progesterone that is similar to the hormone produced naturally by the body.
Rectum: The last part of the digestive tract.
Ureters: A pair of tubes, each leading from one of the kidneys to the bladder.
Uterus: A muscular organ located in the female pelvis that contains and nourishes the developing fetus during pregnancy.
If you have further questions, contact your obstetrician–gynecologist.
FAQ013: Designed as an aid to patients, this document sets forth current information and opinions related to women’s health. The information does not dictate an exclusive course of treatment or procedure to be followed and should not be construed as excluding other acceptable methods of practice. Variations, taking into account the needs of the individual patient, resources, and limitations unique to the institution or type of practice, may be appropriate.
Copyright October 2012 by the American College of Obstetricians and Gynecologists.