What is evidence-based information in relation to endometriosis?

This really should be a straightforward question to which the answer should be 'information that is confirmed as reliable by the application of accepted evidence.' But what is accepted evidence?

For evidence to be considered reliable it must be such that it can be definitively proven by science or has been reviewed by a sufficient number of peers - other experts in the field – who agree that it accurately represents what it seeks to suggest or prove. One of the most researched medical topics is likely to be the pathogenesis of endometriosis which is evolving as a complex multifactorial disease involving impaired immune and endocrine systems. Understanding is being gained in parts that are gradually being fitted together in the hope that ultimately the connecting piece of the jigsaw will be revealed. But at this moment in time no one, however learned they may be, knows the answer to the pathogenesis of endometriosis.

There are many theories as to the possible sources of potential tissue that becomes modified into endometriosis but none has yet been proven. Many factors and processes have now been identified as involved in the pathogenesis of endometriosis and our understanding is based on what is considered most likely in the light of such findings by the experts who study the disease. Like the balance of probabilities in a legal case in the absence of concrete proof. Once peer-reviewed and accepted for publication the many recent papers on the pathogenesis of endometriosis stand as accepted evidence-based information until proven otherwise and such papers are always careful to refer to what ‘might’ be the case or what is considered ‘likely’ to be the case. There will not be one accepted paper that claims a definitive answer to the pathogenesis of endometriosis because, as yet, none exists.

It is therefore alarming to find sources that are not evidence-based making claims to definitive facts about the pathogenesis of endometriosis. This seems to be especially prevalent on Facebook with such claims being made that endometriosis does not progress, we are born with all our endometriosis, retrograde menstruation is now outdated and once removed endometriosis cannot recur. The fact is that no one in the world is qualified to make these statements, not even a true expert working at the forefront of the field and, most importantly, such a person would not attempt to do so. In addressing these particular claims by reference to the many published evidence-based articles on the pathogenesis of endometriosis as at 2014, all are contrary to current expert understanding.

in my view the most important qualities of a true scientist are an insatiable thirst for knowledge born out of genuine curiosity, an ability to consider all point of view objectively, to accept that others might be right and they might be wrong and, most importantly, the humility to recognise their place in the scheme of things. I am not a religious person but I came across a wonderful book called 'Look at your world' by an American reverend called Paul H Dunn. Here are some of my favourite quotes:

'So what is this thing called humility? It's the realisation - not with pain, but with joy - that all virtues and abilities are not lodged in yourself; it's that sudden insight that every soul in this world can be your teacher no matter how low his light burns.'

'The job of humility is not to make us feel small, but to expand our capacities for appreciation, awe, delight; to stand silent before all we do not know - and then get on with the work of finding out.'

The purpose of this post is to warn people to be careful as to what they believe posted in endometriosis groups. If a definitive claim is made about the pathogenesis of endometriosis such as those above then they will necessarily be unfounded since no one yet has the understanding to make such claims. Question what you are told and ask for references to published evidence-based peer-reviewed information in order to come to your own conclusions. Don't accept references to articles written by individuals (even professionals) who might have made such claims on their own private website reflecting their own personal opinion, since such personal opinion is not reliable evidence.

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10 Replies

  • Your preamble to your post reminded me of a book that I think you would enjoy....Doctoring Data by Malcolm Kendrick. Hilarious and horrendous in equal measure.

    Your post also reminded me of this article collective-evolution.com/20...

    Some extracts:


    1. Here is another great example of a hard hitting quote when it comes to scientific fraud and manipulation. It comes from Dr. Marcia Angell, a physician and long time Editor in Chief of the New England Medical Journal (NEMJ), which is considered to be one of the most prestigious peer-reviewed medical journals in the world. I apologize if you have seen it before in my articles, but it is quite the statement.

    “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of the New England Journal of Medicine”

    2. In the April 15th, 2015 edition of Lancet, the UK’s leading medical journal, editor in chief Richard Horton stated:

    “The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue. Science has taken a turn toward darkness.”


    I am not familiar with the online groups you allude to but I have learnt not to believe everything I read in the newspapers, the internet, PubMed, my own diary!!! etc. or even what my doctors say!

  • I am currently (although on leave of absense due to medical grounds at the moment) studying for a PhD and cannot agree more with this statement. Unfortunately people are all too willing to believe anything they hear without questioning it.

  • Gosh aren't they just, not just regarding this disease but in all areas of life! My mum would never question or doubt a doctor, to her they are demi gods!! Tried to tell her and she is better than she was but so many people are just so naive. I think I was and thats why this bloody disease has caused havoc for over a decade!

    Good luck with your PHD :)

  • When the doctor says so little is known doesn't exactly fill me with confidence! I think your words would probably cover most of medicine Linda!!

  • Ultimately I think the message is that we must take control of our own life and most importantly respect our own intelligence and ability to make choices that affect that life and not to just soak up what is dished out to us from any source just because that source claims to be some sort of expert and holder of definitive and valid information without having to back it with evidence that we can then consider for ourselves as intelligent individuals. I think those who will know the least are likely to be those who claim to know the most.

  • Absolutely. The only person to trust is yourself. This approach has served me very well.

  • This is an interesting statement, yet also baffling, and rather amusing. It's incredibly ironic, considering how contradictory to this your own actions often are! You regularly state your own personal opinions "as fact" on this forum, without having any definitive research to point to.....

    How is it even possible to say this about Facebook (where there are 100's of endo groups) as a whole? "This seems to be especially prevalent on Facebook" - it's clear what you are insinuating here. However if you had actually read posts yourself (correctly) in the context they were meant, during the time you were on there, and paid attention to detail during your discussions with experts in the field (who kindly shared their time with you.) Then you wouldn't have drawn those conclusions - or you have just chosen to twist things?

    On the above post that you wrote yesterday, you state:

    "One of the most researched medical topics is likely to be the pathogenesis of endometriosis which is evolving as a complex multifactorial disease involving impaired immune and endocrine systems."

    Yet in reply to my post earlier today here you said: (I have a screenshot of it!)


    "Endometriosis is now established as a highly complex multifactorial condition underpinned by abnormal immune and endocrine function (this much can be proven in laboratories) with what is thought to be complex cross-talk between these systems."

    So it's gone from evolving, to established in 24 hours! Wow! Really??

    I definitely think you need to practice what you are preaching here, on every level!

  • Many people on here know me well and know that I only ever make reference to fact if it is truly warranted. They also know Arcadia and can make their own comparisons. It is true as Brownlow has referenced that many published papers may not be true but I wasn't really referring to papers in medical literature. I do feel that most researchers who publish papers will be working on accepted evidence at the time and will write what they do in good faith on the basis of evidence available at that time. But science evolves and with it so does understanding and inevitably with the passage of time some published literature will turn out to be true and some not. I feel that this must be accepted as part of the ongoing process on the path to understanding. We will all be familiar with the quote that all greats stand on the shoulders of the greats that went before them and perhaps this could not be truer that when talking of the progress of scientific discovery. Even if the findings of a scientist at a given point in time that were published with honesty turn out to be unfounded then those findings will have provided a springboard for discussion and will have opened the way to greater understanding. What I refer to are claims to definitive evidence that is not based on anything other than the personal opinion of perhaps one individual, perhaps one doctor, that are not backed by the general scientific community in peer-reviewed literature or proven scientific findings. And unfortunately these are being circulated.

    I have been careful not to name any such groups and there may be many. I apologise to Arcadia if I have confused her and will confirm that endometriosis is now established as a multifactorial disease underpinned by abnormal immune and endocrine function that has been proved in the laboratory. It is being ever more established as such as understanding evolves and a distinction was not intended. This can be confirmed by the excellent book 'Endometriosis - pathogenesis and treatment' published in 2014 by Tasuku Harada which brings together the current understanding of the pathogenesis of endometriosis with multiple contributors and reference to hundreds of published papers, including that of Redwine entitled 'Was Sampson wrong' published in 2002.

    This is a very interesting paper. In dismissing Sampson's proposition that endometriosis represents a direct autotransplant of eutopic endometrium (a view that all experts would agree with since endometriotic tissue is different from eutopic endometrium) he was careful not to dismiss the possibility that retrograde menstruation may turn out to be a source of host tissue for endometriosis and added many caveats to ensure his views were taken at face value only. He did fail to identify the many differences now established between the eutopic endometrium of women with endometriosis and that of normal women that is pivotal to modern understanding of the pathogenesis of endometriosis and the role of refluxed menstrual fluid that is now considered the most likely source of host tissue for peritoneal endometriosis. For example, the critical significance of aromatase expression and apoptosis in endometriosis is now well understood and he reported that eutopic endometruim does not express aromatase and apoptosis is not altered. He did not distinguish between the endometrium of women with endometriosis and those without and just compared endometriotic tissue with 'endometrium'. It is now proven that the eutopic endometrium of women with endometriosis is quite different to that of normal women and, crucially, that of women with endometriosis does express aromatase and displays reduced apoptosis, a crucial factor in the proliferation of diseases such as cancer as well. But this paper was written 13 years ago and will have been produced in good faith at the time.

    I am grateful to Arcadia for providing the opportunity to use this as an ideal example of how scientific literature published in good faith at a given time can become outdated by subsequent research, but this should nonetheless not be dismissed as no longer having value as it caused a great deal of discussion and may have helped the scientists that followed to move science on to the understanding that now exists.

    This is an example of an entry on Facebook that is backed by scientific evidence:


    Mary Lou Ballweg's book 'Endometriosis - the complete reference for taking charge of your health', although written as long ago as 2003, is a great book which was ahead of its time in predicting the immune/endocrine implications of endometriosis and is well worth purchasing.

  • Healthy debate among the scientific community is a positive and constructive thing. It is the reason humans have made so many amazing advances in medicine and in other fields. The side I am less keen on is when this becomes personal. There are areas of science that are less well understood and often people's opinions are expressed as a way of bridging these gaps in our knowledge. Consequently there will be several groups of people who fall into these varying camps. This should be respected and advocates of each should not be subject to personal attacks.

    You all supposedly advocate the freedom of people to make up their own minds so please respect that and refrain from turning things into an online slanging match.

  • approx 10% of women are thought to have endo........ i would hazard a guess (just a guess mind you - no sources or research) that less than 0.1% of them have a phd. Which brings me to why I have replied to your post.

    We don't care about your sanctimonious clap trap - your wittering on about how unbelievable it is that people haven't researched their info correctly or have had it reviewed by peers.....

    what we care about, is that most doctors talk crap (if you would like an example read your post back) and belittle our very real pain and worry. We care that no one really understands the disease, or what causes it, or what cures it.

    We care that when we find forums like this, we find other women who have the same issues as us. We find women that can say "hey don't worry so much, we have been through that too".

    What we don't want is women like you, looking down their snooty noses because we aren't half as clever as you are.......

    so please do us all a favour, if you want to post comments that are not about support or info, but more about one upmanship with other sanctimonious "we know everything" women, could you do it somewhere else?

    thank you

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