“WHY ARE THERE DELAYS IN THE DIAGNOSIS OF ENDOMETRIOSIS?”
ROBERT L. BARBIERI, MD (EDITORIAL; MARCH 2017)
Adenomyosis increasingly is a concern
Dr. Barbieri’s article on delay in diagnosis of endometriosis is timely and important. I agree that family history is very important, but often the mother had a hysterectomy at a relatively young age for heavy bleeding that was blamed on fibroids.
Adenomyosis seems to be increasing in prevalence and may be suggested by cystic changes in the endometrium on 3D ultrasonography. The patient often reports dark brown spotting before or after periods. The second day of the period is very heavy, and cramping may precede the period. Sometimes you can note punctate lesions on the cervix that cause a very friable cervix that is likely to bleed after the patient has coitus or a Pap smear. Adenomyosis may cause much of the troublesome bleeding seen after medroxyprogesterone acetate injection, insertion of a levonorgestrel-containing intrauterine device, etonogestrel implant placement, and even birth control pills, and it is often dismissed as dysfunctional uterine bleeding. The dark brown blood may represent blood exiting the crypts of the endometrium.
It is concerning that patients who are treated aggressively for adenomyosis in order to get pregnant seem to be at increased risk for retained placenta and decreased uterine tone in the third stage of labor. Certainly this makes intuitive sense if one surmises that the endometrium is abnormally deep into the myometrium, allowing for microscopic placental invasion and myometrial dysfunction.
Most troubling is the warning from the public health community regarding endocrine disruptors. Could BPA (bisphenol A) be contaminating our plastic water bottles and be causing an epidemic of younger-onset adenomyosis? It is certainly something worth studying.
John Lewis, MD
Waterbury, Connecticut
Endometriosis patients receive delayed diagnosis, ineffective treatments
Several points came to mind reading Dr. Barbieri’s article. First, with the surge in deep infiltrating endometriosis as reported in the literature, one has to ask about treating mild disease with hormones initially. Disease can and does progress with hormonal suppression, I assume because endometriosis makes its own estrogen. Yet when the surge is noticed, the recommendation, at least in Europe, is that we should look at pollution.
Second, I have to wonder why it is not reported that older women have endometriosis. I manage a 20,000-member education board for endometriosis patients and many of those seeking help are older and often already castrated. When I can find them access to advanced surgical skill, they are found to have active endometriosis.
The patients seeking more information (gaining 300 a week) have failed all that gynecology has to offer except expert surgical excision of their disease. In my view, gynecology in general has failed this patient population. I have worked with endometriosis patients for 32 years, and 75% of them have been dismissed as neurotic, with average time to diagnosis 9 years after symptoms appear.
It seems that the symptom profile found in endometriosis patients is not well known, and once the disease is diagnosed, the treatment options are ineffective.
Nancy Petersen, RN
Portland, Oregon
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