Becoming knowledgeable about endometriosis was
described as the turning point for many women from
being controlled by endometriosis to being able to live
with it with some degree of equanimity. Information from
health professionals was stressed by the women as of critical
importance. Yet many women stated that information
from doctors was problematic in many instances because
of information gaps and not having the time to work
through the strengths and weaknesses of various alternatives.
Nurses were mentioned only in terms of their nonprovision
of information.
Endometriosis support groups and information provided
by the other women and guest speakers were key
resources along with books, Internet health information
and chat rooms. Suggestions from the women about how
to improve health professional input were more information
in preparation for surgery including advice to ‘build
up fitness’ (Helen), nurses going though the written
information helping women with the pertinent facts,
and providing more information about the strengths
and problems with various treatments to assists with
decision-making.