CARE About Fibroids held a policy briefing and discussion with lawmakers, policy experts, patients, and advocates on uterine fibroids and their impact on women in the U.S last month.The event was held on Monday, April 8 on Capitol Hill in Washington, D.C. and was moderated by Jenny Rosenberg, Executive Director of CARE About Fibroids, who presented findings our organization’s recent white paper entitled, Uterine Fibroids: A briefing on the condition of, and its impact on, women in the U.S.
Understanding the needs of American women living with undiagnosed or undertreated uterine fibroids requires knowing the language. Here is a glossary of the most common terms associated with the diagnosis and treatment of this often under-recognized women’s health concern.
Abdomen – The part of the body containing the digestive organs; also known as the belly.
Abdominal Wall – The lining of the abdomen, consisting partly of bone but mostly of muscle. Surgeries used to remove fibroids usually enter through the abdominal wall.
Ablation – The removal or destruction of a body part or tissue or its function. Ablation may be performed by surgery, hormones, drugs, radiofrequency, heat, or other methods. Anemia – Abnormally low levels of red blood cells in the bloodstream. When women with fibroids experience heavy bleeding, this can lead to a type of anemia called iron-deficiency anemia. Iron is required to make red blood cells and is lost with the heavy bleeding.
Asymptomatic –A disease or condition has no symptoms.
Benign – Not malignant, not cancerous. A benign tumor does not invade surrounding tissue or spread to other parts of the body.
Biopsy – An examination of tissue removed from a living body to discover the presence, cause, or extent of a disease.
Bimanual Examination –, A part of the standard pelvic examination in which two fingers of one hand are inserted in the vagina and the other hand gently palpates the uterus, cervix and adnexae, to evaluate pregnancy, cysts and/or masses in the ovaries. Bladder – A hollow organ in the lower abdomen that stores urine.
Catheter – A thin, flexible tube.
Cervix – The opening of the uterus.
Curettage – A procedure to remove tissue from the wall of the uterus with a medical instrument called a curette.
Cystoscopy – An exam to determine whether uterine sarcoma has spread to the bladder. A flexible lighted tube is used to look inside the bladder.
Diagnosis – The identification of a disease or illness from its sign, symptoms and tests.
Embolization – See “Uterine Fibroid Embolization.”
Endometrial Ablation – This is a nonsurgical procedure to remove the endometrium (a thin layer of tissue) that lines the uterus. It is performed to stop or reduce heavy menstrual bleeding or abnormal uterine bleeding. Endometrial ablation is only performed on women who do not plan to have any children in the future because the endometrial lining, where the egg implants after being fertilized, is removed. An endometrial ablation can be performed several ways using electricity, fluids, balloon therapy, radio frequency ablation, cold (cryoblation), and microwaves. Endometrium – The membrane lining the uterus which is normally shed each month causing menstruation.
Estrogen – The female steroid hormone produced mainly in the ovaries that influences sexual development and the monthly menstrual cycle. It also affects the aging process.
Family History – Information about diseases in family members that identifies problems or illnesses that are valuable in diagnosis and treatment.
Fertility – The ability to become pregnant and bear children.
Fertility Preservation – A type of procedure used to help keep a person's ability to have children. A fertility preservation procedure is done before a medical treatment that may cause infertility, such as radiation therapy or chemotherapy.
Fibroids – See “Uterine Fibroids.”
Food and Drug Administration (FDA) – The agency of the U.S. government that regulates drugs, biological goods, blood products, medical devices, foods, animal food, cosmetics, and dietary supplements.
Gonadotropin-Releasing Hormone (GnRH) Antagonists – Medications called GnRH agonists treat fibroids by blocking the production of estrogen and progesterone, stopping the menstrual cycle (putting a woman into a postmenopausal state) and shrinking fibroids temporarily. However, after six months of us GnRH agonists can cause side effects such as hypoestrogenism, including hot flashes, vaginal dryness, mood changes, headache, and more.
Hormonal Therapy –To reduce symptoms associated with uterine fibroids, certain synthetic or naturally derived hormone therapies may be suggested by your doctor. Hysterectomy – A form of surgery that removes the uterus but results in loss of fertility. It is considered the definitive treatment for uterine fibroids because it eliminates existing fibroids.
Hysterosalpingography – A special x-ray procedure in which a small amount of special fluid is injected into the uterus and fallopian tubes to detect changes in their size and shape or to determine if the tubes are blocked. This test is recommended when infertility is a concern.
Hysterosonography – Also called a saline infusion sonogram, this imaging test uses sterile saline (salt water) to expand the uterine cavity, making it easier to get images of submucosal fibroids and the endometrium.
Hysteroscopy – A procedure to see inside the uterus (the womb) using a viewing scope. A scope is a flexible tube with light.
Incidence – Incidence refers to the occurrence of new cases of disease or injury in a population over a specified period of time. Although some epidemiologists use incidence to mean the number of new cases in a community, others use incidence to mean the number of new cases per unit of population. Incision – A cut through skin or other tissue performed by a health care professional. Infertility – The inability to become pregnant and bear children. Intramural Fibroids – One of four types of fibroids that are located within the muscular walls of the uterus. Intrauterine Device (IUD) –Shaped like a "T" and a bit bigger than a quarter, an IUD is a very small piece of plastic placed inside a woman’s uterus to prevent pregnancy by stopping sperm from reaching and fertilizing eggs.
Laparoscopy – A procedure in which a slender, light-transmitting flexible tube called a laparoscope is inserted into the pelvic cavity through small incisions, either to view the pelvic organs or to perform surgery.
Leiomyoma – Also known as a uterine fibroid, this is a benign tumor that arises from the overgrowth of smooth muscle and connective tissue in the uterus.
Malignancy – A term for diseases in which abnormal cells divide without control and can invade nearby tissues.
Magnetic Resonance Guided Focused Ultrasound (MRgFUS) – A noninvasive technique to treat symptomatic fibroids. MRgFUS (also known as “focused ultrasound surgery ” or “focused ultrasound ablation”) is performed by a radiologist to deliver a series of targeted ultrasonic pulses that heat up and destroy the fibroid. The procedure is conducted under magnetic resonance imaging (MRI) to more accurately target a fibroid and avoid causing harm to nearby healthy tissue. MRgFUS may not be ideal for women with many or very large fibroids.
Magnetic Resonance Imaging (MRI) – A non-invasive imaging method using magnetic fields and radio waves to create images of the internal structure of the body.
Menorrhagia – Excessive uterine bleeding occurring during menstruation.
Menopause – The natural ending of menstrual periods occurring usually between 45 and 55; the time in a woman’s life when this occurs and ovarian function decreases; menopause may also caused by surgical removal of the ovaries.
Menstruation – The monthly discharge of blood and tissue from the lining of the uterus that occurs when the woman is not pregnant.
Minimally-Invasive – A medical treatment or procedure requiring a small incision, resulting in minimal damage of body tissue.
Miscarriage – Spontaneous abortion, or miscarriage, is defined as a clinically recognized pregnancy loss before the 20th week of gestation.
Morbidity –Any departure, subjective or objective, from a state of physiological or psychological well-being. In practice, morbidity encompasses disease, injury, and disability. Can refer to the number of persons who are ill, or it can be used to describe the periods of illness that these persons experienced, or the duration of these illnesses. Myomectomy – A surgical procedure to remove uterine fibroids without removing the uterus. Depending on the location of the fibroids, the myomectomy can be done through the lower abdomen or through the vagina.
Myolysis – A laparoscopic procedure for treating uterine fibroids that involves coagulation (via electric current) of blood vessels supplying the fibroid with subsequent shrinkage of the fibroid.
Myometrium – The muscle tissue of the uterus.
Noninvasive – A medical test or procedure that does not require an incision for entry into the body.
Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) – A class of drugs, including aspirin and ibuprofen, which reduce inflammation and relieve fever and pain by blocking enzymes and proteins made in the body.
Nonsurgical – A procedure or treatment not involving surgery.
Oophorectomy – The removal of one or both ovaries by surgery.
Oral Contraceptive –Birth control pills.
Ovary – One of the essential female reproductive organs. It produces eggs.
Ovulation – The release of the ripe egg (ovum) from the ovary.
Pedunculated Fibroid – One of four types of fibroids. It grows on or is attached to the uterus by a narrow stalk.
Pelvis – The lower part of the abdomen that is located between the hip bones in a female.
Postmenopausal – Occurring after menopause.
Prevalence – Sometimes referred to as prevalence rate, is the proportion of persons in a population who have a particular disease or attribute at a specified point in time or over a specified period of time. Prevalence differs from incidence in that prevalence includes all cases, both new and preexisting, in the population at the specified time, whereas incidence is limited to new cases only.
Proctoscopy – An exam to determine whether uterine sarcoma has spread to the rectum. A lighted flexible or rigid tube is used to look inside the rectum.
Progestin – A synthetic form of progesterone that is similar to the hormone naturally produced by the body.
Progestin-Releasing Intrauterine Device (IUD) – A highly effective type of birth control that is inserted into the uterus. This type of IUD can also be used to reduce heavy and painful bleeding in some women with fibroids. The device, however, does not treat the fibroids themselves.
Progesterone – A female steroid hormone that prepares the uterine lining for pregnancy and maintains pregnancy when it occurs.
Prognosis – The forecast of the probable outcome or course of a disease; the patient's chance of recovery.
Reproductive potential – The ability to conceive and bear children.
Scope – A small tube with a light and camera lens for observation.
Selective Progesterone Receptor Modulators (SPRMs) – A class of drugs that block progesterone production and are used to treat hormone dependent conditions, such as uterine fibroids.
Smooth muscle – Type of muscle tissue found in thin sheets in hollow organs and structures like blood vessels, the small intestine, bladder, or uterus; smooth muscle is not under voluntary control.
Sonohysterography – A procedure in which sterile fluid is injected into the uterus through the cervix while ultrasound images are taken of the inside of the uterus.
Submucosal Fibroid – One of four types of fibroids. It develops underneath the uterine lining within the uterine cavity and may be a cause of excessive and prolonged menstrual bleeding.
Subserosal Fibroid – One of four types of fibroids. It develops in the outer portion of the uterus and continues to grow outward.
Symptomatic – Experiencing symptoms of a disease or condition.
Symptom – A physical or mental feature that is regarded as indicating a condition of disease.
Tranexamic Acid (antifibrinolytic) – A non-hormonal medication to ease heavy menstrual periods. It is taken only on heavy bleeding days.
Transvaginal Ultrasound – A test using high frequency sound waves to get an image of a woman’s reproductive organs including the uterus, ovaries and cervix.
Tumor – An abnormal growth of tissue that can either be benign or malignant (cancerous).
Ultrasound – A common tool used by physicians such as gynecologists and radiologists that uses sound waves to view internal structures, organs, or tumors such as the uterus and fibroids.
Ureter – A tube that carries urine from the kidney to the bladder.
Uterine Fibroids – Also called leiomyomas or myomas, uterine fibroids are non-cancerous growths that develop from the muscle tissue of the uterus. They can cause painful, heavy periods and other symptoms as well as infertility in some situations. Uterine fibroids can form inside the uterus, on its outer surface, within its wall, or be attached to the uterus by a stem-like structure.
Uterine Fibroid Embolization (UFE) – This is an image-guided, minimally invasive procedure that uses a high-definition x-ray camera to guide a trained specialist, most commonly an interventional radiologist to introduce a catheter into the uterine arteries to deliver the particles. The goal is to block the fibroid blood vessels, starving the fibroids and causing them to shrink and die.
Uterine – Related to, occurring in, or part of the uterus.
Uterine Leiomysarcoma (LMS) – A rare (less than one in 1,000 diagnosis in the U.S. annually) cancerous fibroid. The average age of a woman diagnosed is 51 years and the vast majority of women diagnosed with LMS have no identifiable genetic risk factor. Uterine LMS is most often discovered by chance when a woman has a hysterectomy performed for fibroids but does not arise from an already-existing fibroid. Uterus – A muscular organ located in a woman’s pelvis that contains the developing fetus during pregnancy. Also called the womb.
Vagina – The muscular passage that connects the uterus and cervix with the outside of the body.
Womb – The muscular organ located in a woman’s pelvis that contains the developing fetus during pregnancy. Also called the uterus.