I recently had follow up with my consultant Prof Bunkheila after an MRI and he reiterated the same phrase he had stated at our initial consultation that "endometriosis is progressive" explicitly implying that it will get worse without treatment though his recommended treatment is surgery and I have to wait a minimum of 2 years on the NHS waiting list. Of course he also works at the local private hospital and I imagine if I applied to be treated there as a paying customer I would have the surgery sooner.
On principle I think this is an absolute scandal and am considering going to the press and my local politicians again(I have complained about my treatment by a non-specialist gynaecologist before, which led to me being seen by the specialist). But more importantly I wanted to check whether the statement that endometriosis is a progressive condition actually has the weight of the scientific consensus behind it or is this scaremongering to get me to pay for private surgery (which I can't afford as NHS staff)!
Where is the evidence that without surgery or other medical intervention endometriosis pain and adhesions would get worse? I'm not saying it doesn't for some,but my understanding is that the mechanism for the disease is not definitively established and that means that all the contributing factors underlying the development of the disease are also not understood.
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MalachiteAli
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Ultimately surgery for endo is based on pain and/or infertility so that should be the basis on which a decision is made - quality of life now versus surgical risks. The potential for the endo to get worse would potentially be a consideration if say an MRI shows infiltration into a vital organ/structure that might result in serious damage/malfunction. An example might be ureteral endo that is threatening loss of kidney function. The balance then would be between potential organ failure due to endo fibrosis progressing and infiltrating further plus potential risks of surgery against retention of what might be a manageable quality of life.
But we are in the realms of 'potential' and 'likelihood' and not definitive fact. Your last para is absolutely correct in that the mechanism for the disease is not definitively established and that means that all the contributing factors underlying the development of the disease are also not understood. It is not possible to say 'endo is progressive' in so far as at any point in time it will for sure continue to grow and get worse without treatment.
Whether or not this is scaremongering in an attempt to get you to pay for private surgery or whether he truly believes this is a separate issue.
As you say for some it does progress and this can be each time after every medical or surgical intervention not matter what is tried to control it. There are so many factors we know are involved in the pathogenesis of endo and probably many times more that we don't. But it is likely that every single woman's endo is different based on her individual DNA and how that plays out in immune/endocrine dysfunction and the many other abnormalities that are likely involved with endo. For someone with severe endo, such as it sounds like you have for it to be shown on MRI, it clearly has been progressive historically to have become severe in the first place but there are several documented references to a frozen pelvis, for example (so severe RV endo),reaching an end stage of non-progression. As endo becomes more and more fibrotic the endo cells become less present within the tissue and it does seem that in some cases it effectively burns out. As said previously in some it doesn't seem to do that and remains very progressive no matter what.
In any individual case it would require repeat MRI to monitor progression (or not) using exactly the same MRI protocol. There are many women who, given the high risk of surgery for severe endo, make decisions about the severity of their symptoms and whether or not they consider them manageable who choose to monitor it this way.
For the purposes of the evidence you want it needs to be from sources that a surgeon is required to take notice of. So the following will suffice:
NICE, Context, page 25:
Women may also have endometriosis without symptoms, so it is difficult to know how
common the disease is in the population. It is also unclear whether endometriosis is
always progressive or can remain stable or improve with time.
ESHRE (page 20):
I. Diagnosis of endometriosis
The diagnostic delay of endometriosis is a hallmark of a disease that can have at times crippling effects on individuals suffering from its associated symptoms and impact on their lives. However, the growth rate and potential progression pattern of endometriotic lesions, cysts and nodules remain unclear. This is partially the result of a lack of sufficient understanding of the underlying pathophysiology, non-standardised clinical outcome measures and not-fit-for-purpose staging systems. For example, data from women in the placebo arm of medical trials or from those in the sham operation arm of surgical trials suggest that within six to twelve months endometriosis may progress in about one-third of
patients whilst similar fractions are seen in non-progressive or even regressive disease (Evers, 2013). However, these reports have to be addressed carefully as the numbers are small and because they do not take into account the biological activity of individual lesions.
Thanks so much for your detailed answer Lindle. I was half hoping you would reply as you are always very knowledgeable. So the surgeon basically oversimplified. He seems pretty compassionate and honest, so I'm glad this supports that. It's not surprising that he does private work as well as NHS and he clearly hasn't offered that as it would be unethical. It is a bit more than oversimplification really as the guidance says it's not clear if it's progressive and he has said it is progressive quite definitively to me twice. Hmmmm. I don't want to be operated on by someone I don't trust.
I had already read these pieces of guidance, but hadn't been able to discuss them with anyone knowledgeable as medical professionals are always so pressed for time during appointments. I will discuss this with the endo nurse when I next see her as I think my mental attitude towards endo affects things as stress and anxiety are clearly factors in physical health. Also being eternally optimistic is unrealistic, whilst it's partly a protective measure against a deterioration in my mental health. I think it's probably time to reassess. You've given me much to reflect on.
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