Endometriosis

Endometriosis
 Endometriosis is when normal uterine tissue is found outside of the uterus on the
peritoneal cavity
 176 million women worldwide are affected by endometriosis
o Endometriosis costs the UK economy £8.2 million a year
o Only 1/3 of women feel their current pain treatment is effective
o 40% of infertile women are affected by endometriosis
o On average it takes 7.5 years to get an endometriosis diagnosis in the UK
 Priority setting partnership- recognises the fact that different patients have different
needs and that these are different to the questions that clinicians want to answer
o Prioritising research questions helped identify the most important questions
for both patients and doctors
 Gathering of potential questions via an on-line survey from patients,
clinicians and researchers
 Also searched existing guidelines and systematic reviews
 Analysis of raw question- removed if out of scope then categorised,
formatted and merged
 Uncertainties are verified by a literature search
 Prioritisation of questions by ranking using an on-line survey of patients,
clinicians and researchers
 Top ten questions were then decided at a final priority setting workshop
of patients and clinicians




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o Findings and observations from the workshop include:
 Need for practical priorities
 Patients don’t care if it is hereditary or not, if they have it, they have it
 Clinicians wanted to relegate the questions that are too big
 Questions were driven by pain issues not pregnancy
 Clinicians want neat question, patients want the big questions

,  Top ten research priorities for endometriosis
o Can a cure be developed for endometriosis?
o What causes endometriosis?
o What are the most effective ways of educating healthcare professionals
throughout the healthcare system resulting in reduced time to diagnosis and
improved treatment and care of women with endometriosis?
o Is it possible to develop a non-invasive screening tool to aid the diagnosis of
endometriosis?
o What are the most effective ways of maximising and/or maintaining fertility in
women with confirmed or suspected endometriosis?
o How can the diagnosis of endometriosis be improved?
o What is the most effective way of managing the emotional and/or
physiological and/or fatigue impact of living with endometriosis?
o What are the outcomes and/or success rates for surgical or medical treatments
which aim to cure or treat endometriosis, rather than manage it?
o What is the most effective way of stopping endometriosis progressing and/or
spreading to other organs?
o What are the most effective non-surgical ways of managing endometriosis-
related pain and/or symptoms?
 Research papers surrounding these key questions have been published
o They have helped with gaining funding for endometriosis research
o Have also put endometriosis in the public eye more
 Not all types of endometriosis are the same
o Uterine lining can be found on different places including the peritoneal cavity,
ovaries and colon
o Ovarian type appears like cysts




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o Deep (infiltrating) endometriosis can be found in the bladder and kidneys




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 Endometriosis has many different symptoms:
o Pain