If we can’t get better treatment of Endometriosis, can we at least treat people with Endometriosis better?

This piece in NZ Herald is about a young mother who struggled for many years to get a hysterectomy despite crippling pain. Although you may guess from my byline that I lack a crucial qualification to write this story, not being in possession at any stage in my life of a uterus, I have called on the experiences of friends and colleagues to put together these notes. If you do not want to read the rest, please read this: trust women to make decisions about their uterus.

Many people are squeamish about permanent decisions, whether it is a tattoo or other cosmetic body modification, right down to the big ones – like a permanent decision never to have children. I get that these are major. But consider the facts of the story linked above. Tash Stokes had two children, ran her own business, and knew what she wanted: freedom from the constant pain of recurrent endometriosis. She was denied out of hand by her gynaecologist. I even feel embarrassed that I had to state her circumstances – to reassure you that she could make her own decision. The pain alone should be enough.

I happen to know three people who have lived with the pain of Endo for years. Two experienced the pain of Endo very early in life – one found it an increasing burden in their 40s. The sharp stabs that come either at random or with any twist or stretch of the body reduce your function. They prevent you from chasing after young children, they limit your ability to enjoy everyday life. They frequently limit the ability to enjoy a normal sex life. My wife tells me that the best description of the impact of severe endometriosis she has ever read was in Theory of Bastards by Audrey Schulman. I read that too - it is awful.

The pain is real, personal and debilitating. Yet the pain is also frequently dismissed. My wife had the least trouble with medical people. Perhaps because she was older when she first started reporting symptoms. Perhaps because she is a determined person. Perhaps because we have decent doctors who never doubt us. I wish more doctors were like that.  

Two other friends, and I have seen the pain hit them, were both in the first instance not believed. Making statements to people along the lines of ‘it’s all in your head’ – which was effectively said to both - is an appalling way to treat people. Just don’t do that. I know that medical people need to convey certainty and make decisions even on limited information – but dismissing the information given by a patient is surely not a valid strategy. Both were given the run around of being told to wait or see if it is something else before endo was diagnosed. I am sure that they would rather it had been one of the alternatives, but they were far less likely to be the cause.

One, finally, after many consultations, was given a laparoscopy and told that should they find endo it would be removed. The surgeon looked, found masses and masses, and decided the job was simply too big and closed her up and referred her to someone else – a failed treatment because it took too long to get a diagnosis and reach that point. Another friend, a young woman, has taken five years to get to that point. It is not fair to have to wait years for diagnosis and treatment.

As a good analyst in the life and health insurance sector I know about disability adjusted life years and wonder at the priorities of our health system that makes these women wait years for diagnosis and treatment and then may deny a solution – such as hysterectomy – for a decade or so. Compared to many cancer sufferers these women will have twenty or thirty or forty productive years ahead of them – in which they deserve to be free from debilitating pain. Private medical insurance can help - but only where endo is not a pre-existing condition. For those where diagnosis is in their teens, they need to be added to a policy as children, probably from birth, to qualify. But surely everyone should be eligible for better care - there is a lot of benefit to society from providing it.

I have questions. Questions largely for the medical profession. Who is the doctor to say she can’t get a hysterectomy until she reaches an arbitrary age? What about a woman’s autonomy over her own body? I know of two people who have been a given tubal ligation after just two meetings with a specialist. The decision was quick and simple. Does the difficulty in obtaining a hysterectomy stem from deep-seated views about women’s role in society? What are these weird prejudices about how many children is enough? Each process seems to be some personal prejudice of the doctor, surgeon or specialist involved – surely some best practice, designed in consultation with people who have endometriosis, should be the standard guideline.