endomuze

A confederation of dunces

The scandal of endometriosis care. In no other discipline ‘messing about’ seems to be a generally accepted standard of care

Diagnostic delay

Yet this what we are doing with endometriosis. Exceptions and excellent care aside, the average trouble starts with the diagnostics process. Normalization of pain, heavy bleeding and functional impairments, and ‘psychosomatizion’1 of physical symptoms lead to girls and women being left to their own vices (thank you , Freud). The younger you are, the bigger the chance your symptoms are downplayed. And complexity/co-morbidities2 makes dismissal even more likely.

Lack of help

Besides hormonal birth control with unacceptable side effects for some (which are still denied or downplayed eg. depression, loss of libido), they get offered no pain relief, no guidance with bowel symptoms such as diarrhea, colicky pain, constipation, or debilitating bladder inflammation.

As the years go on, it impairs life and work more. The average diagnostic delay3 is supposed to be ±10 years and even longer for adenomyosis. But the real life number is much higher as this does not include undiagnosed women in their 30s, 40s and beyond. So, while advances have shortened the gap for younger women, they have a dramatically longer diagnostic delay. Who suffer in silence, because they cannot stomach being sent away without help anymore. And when this leads to mental issues, it is a self reinforcing phenomenon of being treated as psychiatric patient.

Knowledge of endometriosis

The knowledge of a lot of non specialised gynaecologists in endometriosis is abysmal and often non existent for gastro-enterologists, urologists and pulmonologists.4

Dr. Kyriakopoulos, endometriosis specialist, calls endo patients “the most educated in the world”, and indeed I get asked by doctors if I studied medicine. This is the sad reality of having to be your own doctor to get diagnosis and effective treatment.

One cause is the lack of endometriosis in medical training. Epidemiogically5, this cannot be explained, as up to 10% of women are estimated to have endometriosis.

Imaging

It seems that women with an endometrioma6, are diagnosed more quickly, because of its visibility. Adhesions and deep infiltration disease (including adenomyosis) are often poorly recognised on scans. There is just no priority. What does not kill you makes you stronger?

Diagnostic surgery

“Diagnostic laparoscopies”, where a surgery is performed, but without endo removal, are still being performed, eg. in the US, Belgium, Ireland. Not treating disease and reoperating unnecessarily, is unethical and harmful to the patient. A purely diagnostic laparoscopy is redundant when imaging has become advanced and endometriosis can be predicted by symptom pattern alone. High volume, top endometriosis centres rarely find no endometriosis in surgery.

The whole term needs to be abolished as it also frees hospitals to say ‘this is all we could do for now.’

It does take surgical planning of the right multidisplinary team available or on call, as there can always be ‘surprise finds.’ You can never assume ‘mild’ endometriosis stage, so surgery should always be planned as if deep infiltrating disease is present as it can be missed on imaging.

Surgery technique, visibility

David Redwine established 40 years ago that excision is the best available technique for endometriosis treatment. Yet no clinical guideline had adopted this as a standard. Until this month, with an update in the Canadian endo guideline, that seems revolutionary after decades of debate.

Patients are routinely being ablated7, or having deep infiltrating growth cut out by surgeons who lack the right skill. The result is persistent endometriosis, nerve damage, women having worse pain after surgery and complications.

If endometriosis is extremely superficial and local, ablation might be effective. But disease can be deeper, more widespread than seen on first glance. Excision allows for removal of a clean border, just to be sure. And ablation causes scar tissue. It leaves 8-20% (!) of endometriosis tissue behind on operated spots alone, based on biopsy study.

Endometriosis can also be ‘subtle’ and small, be black, yellow, red, white, or even transparent, and often missed. Many surgeons focus on obvious black, more mature lesions, but they might be the least painful. ‘Young’ lesions may be very painful, because of nerve tissue growth and a strong inflammatory reaction from the peritoneum, with its goal to protect underlying organs. Older and deeper lesions are often full of fibrosis (scar tissue) and can be in a more ‘quiet’ phase. Ironically, hormonal suppression can make lesions less visible, even on pathology.

Recurrence/persistence

A lot of women see a relief after surgery, only for the pain and symptoms to start returning a few months after surgery again. Mentally this is extremely cruel. You felt what it was like to have a substantially decreased disease burden, only for it to come back with a vengeance. As some practitioners argue, this is mostly the result of persistence, disease that was never removed , rather than new growth.

Studies on ‘recurrence’ are not reliable/reproducable, as it depends either on a subjective, indirect measure of pain, or surgeon skill. Definitions and measures are not uniform. Truly new growth or missed disease is often not distinguished. The only way for sure is to re-operate patients after precise mapping of endometriosis/video and multiple observers.

Studies that attempt to quantify, see about a 10-50 times lower rate of recurrence for excision of both deep endometriosis (<5%) and superficial disease (<1%), than estimated rates in practice (20-70%). Persistence is caused by missed lesions or diseased left behind due to surgeon experience, microscopic disease or feasibility. Advanced DIE and endometriomas seem to have and cause higher recurrence, while persistence is common in superficial endo. It is not known how new lesions occur. Better patient follow up and data collection is needed.

Repeat surgery

Especially in the US, it does not seem to be exceptional to operate on women more than three times. There are women who report having up to 14(!) surgeries even in the EU, with ‘free’ public health care, that has less financial incentive to operate. Yet their team is not wondering if they are the right people for the job and don’t seek patient referral. But it is a nice pay day.

It makes my stomach sink, whatever happened to: “First, do no harm.”

Quality assurance

Besides independent certification providers trying to push for change, there is little standard of care. There is no agreement on who should treat a woman with pelvic pain, what knowledge and what skill level they should have. Some nation wide standards are lagging behind. There is no integral team of dermatologists, vascular specialist, gynae’s, gastro’s etc to run an effective diagnostic algorithm on the cause of pelvic pain. No one tracks the efficacy and outcome of endometriosis surgery and other treatment per provider.

A band aid on a festering wound

Hormonal suppression is still first in line care, and accepted as scientifically sound, while it is not properly studied. The issue here is that we are not good in separating beginning stages of disease versus more widespread, superficial versus deep endometriosis. So, we do not know what form and stage we are not treating. Deep endometriosis carries more risk, and is not something you want have festering. You could also argue an early intervention in minimal or superficial endometriosis is better than waiting for advancement of disease. This should be an informed patient choice, and available to all. Not using hormonal suppression can lead to cessation of treatment, with discrimination between patients wanting to conceive, where this is an accepted choice, and those who don’t.

Women have little say in treatment plans as this is decided by patient influx, availability of surgeons , healthcare cost and willingness to pay by insurances. In many European countries, patients are denied surgery, and waiting lists are horribly long. Excellent private surgeons in countries with private healthcare tend to ask astronomical fees which only select people can afford.

We also do not know the rate of progression of the disease, and hormonal treatment can reduce pain, whilst the disease still advances. There is little awareness about this and no appropriate monitoring. For women above 35 , migraine patients, the risk of birth control also increases, but it rarely discussed in the treatment room. Even more extreme is inducing ‘chemical menopause’ for years, which can lead to osteoporosis (bone loss), and emotional lability, a complete personality change. Even then, it is no guarantee at all it halts endometriosis.

The lack of advancement

We are still treating endometriosis largely the same as decades ago and with little imagination. Hormonal suppression is presented as the golden solution for endo, and because status quo is accepted, and myths pertained, unfunded opinions and rickety and dated guidelines, the pressure to do differently has long been absent. It is not evidence based, but opinion based medicine.

There are hardly trials comparing treatment outcomes with and without suppression , progression, before and after surgery that go beyond pain scoring, which is not a measure for severity or progression. Anecdotally, there are women with frozen pelvis8 who have been on hormonal treatment ‘all’ their life.

In fact, studies find that comparing complete vs incomplete excision, hormonal suppression made no difference in recurrence; and for complete excision it made no difference in pain scores. Are we merely ineffectively treating the result of diagnostic delay, lack of surgical skills and targeted medication?

We have highly advanced cancer treatment, can surgically remove complex and life threatening tumours, while endometriosis acts a lot like a non deadly neuroendocrine cancer (another post coming) there does not even seem to be a goal of complete eradication of endometriosis. There is not a SINGLE drug or technique developed for endometriosis specifically. Chemical menopause was designed for prostate cancer (yes for men). The painful truth is that suffering for women is accepted.

Current hormonal suppression is like throwing a nuke on a bug.

We are human beings, we want to live.

We deserve knowing what is wrong, a diagnosis.

We deserve the best treatment, and choosing on our own treatment.

We have bodily integrity and autonomy , no insurance, no doctor should take that away from us.

We deserve progession of science

Footnotes:

  1. saying that physical symptoms are caused by the mind ↩︎
  2. diseases that often occur together ↩︎
  3. the time it takes from first symptoms or doctor visit to a getting a diagnosis ↩︎
  4. specialists connecting to places where endometriosis is found ↩︎
  5. the statistics of how widespread a disease is in a population ↩︎
  6. endometriosis cyst on the ovary ↩︎
  7. burning away of endometriosis lesions, this only destroys superficial and local disease ↩︎
  8. very advanced form of endometriosis where pelvic organs have glued together in one mass ↩︎

Sources:

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