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
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
o Deep (infiltrating) endometriosis can be found in the bladder and kidneys
Endometriosis has many different symptoms:
o Pain
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
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
o Deep (infiltrating) endometriosis can be found in the bladder and kidneys
Endometriosis has many different symptoms:
o Pain
