Is This The Reason Why Endometriosis Treatments Are So Ineffective?

We’re heading towards Endometriosis Awareness Week, and my original plan for this post was a ‘listicle’ outlining some of the prevailing myths around this debilitating illness.  The first ‘myth’ I was planning to bust was to be what I perceived as confusion surrounding the diagnostic tools that are currently in use.  I was constantly hearing from other sufferers that the only definitive way to diagnosed this illness was via laprascopic surgery.  Nonetheless, my diagnosis was first floated after an abdominal ultrasound (the type used to view a foetus) and every last one of my adhesions was clearly visible on my MRI.  In fact, the MRI showed more than the surgeons had been able to see during my various procedures.

I began to wonder if this was due to some kind of cultural disparity between the United Kingdom and the United Sates.  It does take an age to get diagnosed in both countries but British women fair a little better, waiting, on average, eight years for the condition to be spotted in comparison to the twelve years that American women face.  I believed that maybe the UK was simply more likely to use imaging tools, initially; moving on to surgery if the symptoms persisted despite the scans coming back clear.  While researching the reason for what I believed was a state of wildly differing diagnostic methods, I stumbled upon a medical paper (The Endometriosis Syndromes: a clinical classification in the presence of etiological confusion and therapeutic anarchy), written in 2003, by Professor Ray Garry.  Reading this paper I came to understand why those different approaches exist.

Imagine for a moment that you unknowingly broke a bone in your forearm, and every specialist told you that what you were really experiencing was a sprained wrist and, as such, geared all of their treatments towards treating a sprain rather than a break. Ice and a compression bandage get applied which does reduce some of the swelling, and numbs the nerves to the actual pain, but underneath all of that is a bone trying to heal without much real help or support.  Eventually the bone sets itself, in any which way it can, but it’s incredibly obvious that something is still wrong.  So you go back to the specialists and they tell you that they are going to try a different cold compress and bandage combination, and that doing so will rectify the problem.  Sceptical but desperate, you agree to this new treatment.  After some months of using the new Tubigrip and Koolpak therapy the original break is still causing all of the earlier symptoms, with no signs of change or respite.  After several visits to the experts, and many more rounds of ice packs and tight bandage treatments you give up, assuming that a poorly healed arm is simply what you have to live with; completely unaware that you should have been treated for a broken bone, in the first instance.  That is essentially the crux of what Professor Garry was stating – Endometriosis is a broken arm in a world where doctors only believe in sprained wrists.

Over ninety (yes, nine zero) years ago a Dr Thomas Cullen outlined the very clear distinction between the type of Endometriosis that can only be discovered through surgery and the type that shows up very clearly on modern imaging equipment.  The first kind is what is often recognised as classic Endometriosis, with surface deposits scattered around the peritoneum creating the ‘black and red’ lesions that have become synonymous with the illness.  The second, (the one I suffer from) is, according to Prof Garry, mislabelled as deep pelvic Endometriosis. It creates lesions with marked fibrosis in areas such as the Pouch Of Douglas and the bowel, in addition to the classic lesions and symptoms.  In order to separate the conditions by language, Professor Garry labels the second condition Cullen’s Syndrome.

As the cause of Endometriosis is still shrouded in mystery, and hindered by limited resources for meaningful research, it may well be that both the diseases have the same origin: but how they are subsequently treated can mean the difference between  long term remission and long term disability.  This is not to say that one syndrome is worse than the other: it is well documented that the amount of deposits is not in direct proportion to the pain levels and symptoms of the sufferer.  Be that as it may, according to both Cullen and Garry, Cullen’s Syndrome will always create an internal fibrosis that can, and often does, lead to permanent damage of non-reproductive internal organs.

“…many will have undoubtedly seen these lesions, but may not have recognized them. They are of unusual importance, and if overlooked will, in time, cause the patient to become a chronic invalid.” Thomas Cullen

But when both illnesses are treated as the same one (a broken arm as a sprained wrist) it not only creates a problem for current patients, but for the future of how the illnesses are classified and treated.  The first syndrome usually responds well to hormonal treatment in conjunction with laser ablation, but with Cullen’s Syndrome hormone treatments are highly ineffective, leaving surgical intervention as the only true treatment option – hopefully before it strangles the bowel, bladder and kidneys.

“Thus we appear to have one phenotype of endometriosis that is superficial in location, is associated with relatively minor symptoms and is amenable to simple treatments and a second phenotype associated with deep lesions, more severe symptoms and potentially serious complications…” Garry 2003

If the physicians themselves are not making the distinction between the two diseases, then is it any wonder that so many women are experiencing years of ineffective treatment?  As I mentioned earlier, my lesions clearly show up on external scans, making it quite obvious which syndrome I was actually suffering from.  Despite this, for the majority of my years of treatment, with the exception of the surgical removal of cysts and fibroids, every regimen I was offered was hormonal in nature.  I’ve been on pretty much every contraceptive pill available in the UK, progesterone only pills, PROSTAP (which I still have side effects from, seven years down the line) as well as a truly distressing few months with the horrendous Mirena Coil.

The only time surgery was offered as a remedy was in 2012 when I was told, by a rather excited gynaecologist, that I would probably have to have two surgical teams working in tandem to remove a piece of my bowel.  Bear in mind, that through all my years under various doctors, no one had ever told me that I was really suffering from Cullen’s Syndrome (or whichever name they would have chosen to describe it), so the idea of cutting away healthy tissue to remove some endometrial deposits did not sit well with me.  Risking potential gastrointestinal damage, alongside whatever the gynaecological surgeon was doing, just seemed so illogical, at the time.  Being able to make an informed choice could have made all the difference, as I am now wondering what further damage I’ve allowed this fibrosis to do, while I was so convinced that I could control the disease by avoiding ‘trigger’ foods and keeping my oestrogen levels in check.

“…some aggressive forms…may be potentially life threatening. This occurs when it involves the bowel, ureter and bladder or when the lesions undergo malignant transformation.” (Garry, 2001)

If it was only Professor Garry’s paper that was illustrating that Endometriosis is actually two separate diseases, I could understand how the medical community might be a little slow in catching up; but this information has been around for almost one hundred years.  Would this seemingly wilful misunderstanding be acceptable in any other field of medicine?  Or perhaps a more pertinent question would be: how is that the experts in the field aren’t joining the very obvious dots laid out by their patients’ responses to various treatments?

“The goal is to differentiate ‘endometriosis’ into clinically important categories to ensure that many patients with mild disease are not over‐investigated or over‐treated while patients with potentially serious disease are not subject to prolonged delays and the use of multiple ineffective therapies…Patients with Cullen’s syndrome…are unlikely to respond to medical therapy and may require extensive and at times potentially dangerous surgery.”  Garry 2003

I know that, in my personal situation, I can simply start another round of referrals to the clinics I discharged myself from, but that is neither the point nor the issue.  The true heart of the matter is that I, like so many others was told, for years, that I had a sprained wrist when I really had a broken arm.