Characteristics of women with endometriosis from the USA and Puerto Rico.

PURPOSE: To describe lifetime differences in clinical characteristics of women with endometriosis between the USA and Puerto Rico. METHODS: A descriptive study using self-administered demographic and clinical questionnaires was undertaken. Women with self-reported surgically diagnosed endometriosis who completed questionnaires from the Endometriosis Association (EA), Wisconsin, USA (n = 4358) and the Endometriosis Research Program (ERP) in Puerto Rico (n = 878), were included in this study. We compared demographic, gynecological and clinical history, frequency of endometriosis-associated symptoms and co-morbidities. RESULTS: Although both groups have similar symptomatology, EA respondents had significantly higher rates of chronic pelvic pain and incapacitating pain than ERP participants. EA respondents were significantly more likely to report a history of problems getting pregnant, heavy bleeding, and hysterectomy than ERP respondents. Miscarriages were more frequently reported by the ERP group. Co-morbidities such as allergies, chronic fatigue syndrome, and fibromyalgia were more prevalent in EA respondents, whereas asthma was significantly more frequent in participants from ERP. CONCLUSIONS: Overall, women with endometriosis from the USA and Puerto Rico reported high rates of pain and infertility and a similar spectrum of symptoms. Those from the EA reported longer time to diagnosis, and diagnostic delays than those from the ERP, which may explain the observed increased in rates of endometriosis-related symptoms and co-morbidities in EA as compared to ERP.

Treating endometriosis in adolescents: does it matter?

Endometriosis has major physical and psychosocial impacts on teens, as well as long-term implications for their health. The hidden suffering of millions of adolescents worldwide calls on the medical profession to respond, despite the challenges. Given the increasing understanding of adolescent endometriosis, treating adolescents with endometriosis can be a most rewarding experience. Moreover, diagnosing and treating the disease early could prevent more complicated disease later, as well as comorbidities. Helping these girls may save them, their families, and their communities much physical and emotional pain, as well as lessen the huge burden on our health care systems and society.

Cancers, infections, and endocrine diseases in women with endometriosis.

OBJECTIVE: To assess the prevalence of patient-reported, physician-diagnosed comorbid conditions in women with endometriosis. DESIGN: Cross-sectional study of self-reported survey data. SETTING: Academic research. PATIENT(S): Four thousand three hundred thirty-one Endometriosis Association (EA) members reporting surgically diagnosed endometriosis. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Self-reported, physician-diagnosed infectious diseases, cancers, and endocrine diseases. RESULT(S): Nearly two-thirds of women reported one or more of the assessed conditions. Recurrent upper respiratory infections and recurrent vaginal infections were common and more likely in women responding to the EA survey. Melanoma was reported by 0.7% (n=29), breast cancer by 0.4% (n=16), and ovarian cancer by 0.2% (n=10). While ovarian cancer and melanoma were significantly more common than in the general population, breast cancer was surprisingly less common. Addison's disease and Cushing's syndrome were rare (0.2% and 0.1%, respectively). CONCLUSION(S): Respondents reported a higher prevalence of recurrent upper respiratory or vaginal infections, melanoma, and ovarian cancer than the general population. These findings document other potential associations related to the immune system, which may help focus future research into this disease.

Diagnostic experience among 4,334 women reporting surgically diagnosed endometriosis.

OBJECTIVE: To determine whether first physician seen and symptoms beginning in adolescence have an impact on the diagnostic experience of endometriosis. DESIGN: Cross-sectional study of self-reported survey data. SETTING: Academic research. PATIENT(S): Four thousand three hundred thirty-four Endometriosis Association Survey respondents reporting surgical diagnosis of endometriosis. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Specialty of first physician seen, timing of onset of symptoms, time to seeking medical care and to diagnosis, number of physicians seen, and satisfaction with care. RESULT(S): Almost all respondents reported pelvic pain. Fifty percent first saw a gynecologist and 45% saw a generalist for symptoms related to endometriosis. Two thirds reported symptoms beginning during adolescence; they waited longer to seek medical care than adults did. Those seeing a generalist first took longest to get diagnosed; those seeing a gynecologist first saw fewer physicians. Sometime before diagnosis, 63% were told nothing was wrong with them. CONCLUSION(S): Women and girls who reported seeing a gynecologist first for symptoms related to endometriosis were more likely to have a shorter time to diagnosis, to see fewer physicians, and to report a better experience overall with their physicians. The majority reported symptoms beginning during adolescence, also reporting a longer time and worse experience while obtaining a diagnosis.

Treatment utilization for endometriosis symptoms: a cross-sectional survey study of lifetime experience.

OBJECTIVE: To examine the lifetime utilization and perceived benefit of medical treatments and surgical procedures for endometriosis-related symptoms. DESIGN: Cross-sectional study of self-reported survey data. SETTING: Academic research setting. PATIENT(S): Self-reported surgically diagnosed endometriosis by 1,160 women responding to the 1998 Endometriosis Association survey. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Use, perceived helpfulness, and outcomes of medical treatments and surgical procedures. RESULT(S): Ninety-five percent of respondents reported pelvic pain, had endured symptoms on average of 16 years, and were young (mean: 36 years), white, and educated. Many women (46%) had tried three or more medical treatments, and almost 20% took them for 10+ years. Many reported medical treatments as helpful for symptoms (range, 36.4%-61.9%), but some reported stopping because of ineffectiveness (range, 15.6%-26.1%) or side effects (range, 10.0%-43.5%). Danazol or medroxyprogesterone acetate (MPA) was most commonly stopped because of side effects (range, 40.7%-43.5%). Surgical procedures were performed at least three times on 42%. Nearly 20% had a hysterectomy or oophorectomy; these procedures were reported as most successful in improving symptoms (45.9% and 37.8%, respectively). CONCLUSION(S): Despite reporting various treatments as helpful, women used many different types and endured symptoms for an average of almost two decades, indicating the profound effect of endometriosis on women's health.

Impact of endometriosis on women's health: comparative historical data show that the earlier the onset, the more severe the disease.

Looking at endometriosis from the bigger picture -- as a systemic endocrine, immunological, and gastrointestinal disease -- opens the door to broader treatments. The bigger-picture understanding of the disease also makes clear a variety of patterns of presenting symptoms, again clarifying the diagnosis. Data from over 7000 confirmed cases clearly show that delay in diagnosis (the average time to diagnosis is >9 years) is a major problem and that current treatments are far from satisfactory. In conclusion, the impact of endometriosis, a disease that already produces intense symptoms, is worsened by a current lack of understanding of the disease beyond its pelvic definition.