Blog #8: What Are the Consequences of Delaying the Diagnosis of Endometriosis?


Retrospectively, most endometriosis (‘endo’) patients tell me that their symptoms began in their teenage years. Yet, most gynecology practitioners believe that a surgical diagnosis and treatment of endo during the teenage years should be avoided if possible and considered only as a last resort. I have outlined the reasons for their hesitancy to treat using Laparoscopic Excision – or what I have coined ‘LAPEX‘ – in detail in Blog #5. Fears of disease recurrence and adhesion formation are particularly strong motivating factors in young girls.

BUT…the consequences of delaying diagnosis and treatment of endometriosis can be enormous. Let me start with the consequences I believe are the most overlooked:

Personal embarrassment leading to a declining self-esteem and loss of self-confidence

  • When the professional evaluation of pelvic pain does not reveal a diagnosis and diagnostic Laparoscopy is not done, a patient’s hope in feeling better is diminished and over time self-esteem suffers. Young girls in this situation often believe that they must be ‘wimps’ because they hurt and nothing really seems to be the matter. Parents begin to wonder the same thing and ultimately communicate this to their child even though they are not intending to. School nurses can add kind words but no solutions, and girlfriends (who are not troubled by any similar issues) further magnify the psychological impact of the disease. Anxiety and depression are not uncommonly diagnosed and treated as time goes by in these undiagnosed individuals.
  • I have seen many practitioners resort to treating anxiety/depression with medication in young girls that really only need an accurate diagnosis and treatment of their endometriosis.

Narcotic Dependence

  • Chronic pain from endometriosis may be intense and relentless. Narcotic use in endo patients is understandably common. In our studies, a well done LAPEX has an over 80% chance of resulting a significant improvement in quality of life.

Disease Progression

  • The rate at which endo advances is extremely variable. I have observed many patients over years with no clinical evidence that known endo progressed. However, the slow march of increasing disease severity occurs all too often in untreated patients.

Progressive Adhesion Formation

  • The presence of untreated endo often results in progressively increasing adhesion formation around the lesions and/or endometriosis cysts. As adhesions increase, it is not unexpected that pain will increase – and then pain control subsequently becomes more and more difficult.

Increased Infertility

  • Establishing when a patient became infertile is almost impossible, but we know that infertility rates increase as the stage of the disease progresses. I believe that our best chance to preserve fertility is to diagnose and remove endo as soon as other diagnoses have been ruled out.

Life Change

  • The failure to diagnose and treat endo can result in life change. Pain from endo may require curtailing physical exercise. It may impact study habits secondary to the reduced ability to concentrate. Gastrointestinal symptoms may alter dietary habits impacting a healthy nutritional status. Pain during sex can destroy relationships and marriages. These are just a few examples of life changes that I have observed.

My conclusion is of no surprise to anyone. We need to train more gynecologic surgeons dedicated to patients with endometriosis and skilled in LAPEX.

Stay tuned! Meanwhile, be sure to also check out:
Is Endometriosis All in your Head?

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.