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

https://doi.org/10.1016/j.bpobgyn.2004.01.003Get rights and content

Abstract

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.

Section snippets

Age of first pelvic symptoms

Compared to our first data registry, the 1998 data showed a huge jump in those experiencing their first symptoms before age 15—a leap from 15% in the 1980s to 38% in the 1998 registry (Figure 1). Fully two-thirds of those responding to the 1998 survey had experienced their first pelvic symptoms before age 20! This huge increase confirmed what we had been experiencing for some years at the Association: the disease is starting younger.

Recent studies done in the US indicate that the age of the

Endometriosis has many symptoms

Although pain is now widely recognized as a key symptom of endometriosis, other symptoms identified in our first data registry—especially fatigue, gastrointestinal problems, abdominal bloating, and a range of allergic diseases—are still not widely recognized as part of endometriosis. Again, in our second data registry, women identified ‘fatigue, exhaustion, low energy’ as the second most common symptom after menstrual pain: 87% in our second registry, 82% in our first (Figure 3).

The third most

Diagnosis

We first identified long delays in diagnosis as a major problem for women and girls with endometriosis in the early 1980s13., 14.: 96% of the 4000 women in the 1998 sample have been diagnosed with endometriosis, most by laparoscopy or laparotomy; 64% were diagnosed in the l990s.

Most of the women—over 70%—visited obstetricians/gynecologists when they first sought help; 19% first visited family or general practitioners. Because of the long delay in diagnosis experienced by so many women with

Treatment results

Generally, medical treatment helped at most 56–57% of women (Figure 14). Laparoscopic surgery for removal of endometriosis was at least partly helpful for 66% (Figure 15). But surgery made no difference for some; laparotomy in particular resulted in additional problems for 14%; hysterectomy was successful in 41% (Figure 16).

Many had tried alternative approaches to treatment with some success. Most successful, according to respondents, was candidiasis treatment at 65% (Figure 17). Candidiasis

Summary

It is clear that we have a long way to go in the diagnosis and treatment of endometriosis. It is also clear that the problems of delayed diagnosis and poor treatment of this disease are the result of more than medical uncertainties. The frequent repetition of cultural myths about women and pain—and many other aspects of the disease—make it clear that those involved in medical training must work much harder to overcome deep-seated (and probably often unconscious) belief systems that allow women

Patients’ comments and Experiences

‘Now I can ride my bike again.’ (13-year-old after her third surgery for endometriosis, Ontario, Canada)

‘As a woman with endo, I have tried to become as informed as possible, primarily through the Association newsletters and medical journal articles, in seeking treatment options. Even though I felt myself to be well informed, most of my experiences with physicians have been frustrating due to their lack of knowledge about the disease, unwillingness to listen, and their focus on infertility as

Acknowledgements

We would like to acknowledge the help of Karen Lamb PhD, and others formerly with the Medical College of Wisconsin, for their invaluable assistance in developing Registry I. André Lemay MD, PhD and Rodolphe Maheux MD—organizers of the VIth World Congress on Endometriosis, for inviting us to develop the diagnostic and treatment data in Registry II and helping obtain a generous grant from Zeneca Pharmaceuticals to make that possible. Pamela Stratton MD, Ninet Sinaii MPH, and others at the

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Copyright © 2004 M. L. Ballweg. Published by Elsevier Ltd. All rights reserved.