NEW YORK – High rates of endometriosis and symptoms indicative of possible future endometriosis have been noted in adolescents and young women based on prevalence data from the United States.
Stacey A. Missmer, Sc.D., reported results from the prospective GUTS (Growing Up Today Study), which includes 15,000 daughters of enrollees of the second Nurses’ Health Study.
GUTS participants were enrolled at 9-15 years of age, and the study was started in 1996 as a long-term prospective investigation of factors that influence weight change, she said at the annual congress of the Endometriosis Foundation of America.
So far, there have been 250 incident cases of endometriosis in GUTS enrollees, and 3,000 others (20%) have reported symptoms indicative of possible future endometriosis, including moderate to severe dysmenorrhea, chronic pelvic pain resistant to analgesics, and lower back pain, according to Dr. Missmer, director of epidemiologic research in reproductive medicine at Brigham and Women’s Hospital in Boston and senior endometriosis investigator for the Nurses’ Health Study.
Also at the meeting, Dr. Thomas D’Hooghe, a professor at the Catholic University of Leuven and director of the Leuven (Belgium) University Fertility Center, presented the results of a systematic literature review of 1,014 publications over a 30-year span, with 15 studies found to examine the prevalence of endometriosis in adolescents.
Of 893 girls who presented for laparoscopy with chronic pelvic pain or dysmenorrhea and were resistant to treatment with oral contraceptives or NSAIDS, 62% were diagnosed with endometriosis. In the subpopulation of those with chronic pelvic pain alone, the prevalence of endometriosis was 49%, he reported.
In the studies that evaluated disease severity, 32% (82 of 249) of adolescent patients had moderate to severe endometriosis. Laparoscopic findings included rectal lesions and tubo-ovarian adhesions, extensive disease of the peritoneum, ovaries and surrounding structures, and rectovaginal, bowel and ureteric endometriosis.
Not much data are available on endometriosis in adolescents. A common thread of adult endometriosis patient testimonials during the conference was the dismissal of their severe menstrual pain as "normal" by family members and health professionals. Many said that they were not diagnosed until 12 years or more after the onset of symptoms.
Dr. D’Hooghe additionally reported unpublished findings from a survey. Among 12-year-olds (n = 792) who completed a semistructured questionnaire, 363 had achieved menarche and 42% of them reported painful menstruation that correlated with duration of menstrual flow and the amount of blood loss. Among girls with painful menstruation, 41% said that it had a negative toll on social activities. Among girls without menstrual-related pain, 14% said menstruation impaired their social activities (P <.001).
Among the 13- to 16-year-olds (n = 172), 40% reported menstrual pain and 17% reported severe menstrual pain. In the 17- to 21-year-olds (n = 1,028), 52% reported menstrual pain and 16% reported severe menstrual pain. Over 40% in each age group used hormonal contraception for analgesia.
Menstrually related nongynecologic complaints included lower back pain reported by 26% of the 13- to 16-year-olds and by 38% of the 17- to 21-year-olds; urological symptoms reported by 26% and 23%, respectively; and gastrointestinal problems reported by 14% and 24% respectively.
"This group of girls who not only present with typical gynecological problems but also with lower back pain, urological symptoms, and gastrointestinal problems are the girls we want to see in our clinics for early diagnosis and treatment," said Dr. D’Hooghe.
Known factors that are linked to the risk of endometriosis include early dysmenorrhea, family history of endometriosis, high frequency and long duration of oral contraceptive use for severe dysmenorrhea, and frequent absences from school during menstruation. Reaching menarche after the age of 14 years is associated with a decreased risk of endometriosis, he said.
Dr. Missmer and Dr. D’Hooghe had no relevant financial disclosures.