There used to be a programme on UK TV called ‘Who do you think you are?’. I never watched it, but I think it featured a different celebrity every week, going on a journey of discovery into their ancestry.
I’m not much of a fan of that stuff, but I have to admit that there are a few relatives I would like to know more about. One is my great grandfather, who was a Danish Government Minister from 1936 to 1952. Apparently, he owned a big farm on a small island (I think) and now lies in some sort of fancy grave in Copenhagen. Cool, I guess. But what I’d most like to know is: who was he, really? He was a government Minister in Nazi occupied Denmark. Nazi. Occupied. Denmark. Was he a Nazi collaborator? The chances seem high. Did he only collaborate outwardly, to maintain his position and protect his family? Did he collaborate in every sense of the word? Did his job involve persecuting people, directly or indirectly? Maybe he aided the resistance? Maybe he just looked the other way? If I could find the answers to any of these questions, would I really want to know?
Some questions, as they say, are best left unanswered. We are who we are, in the here and now. And yet; I can’t escape the fact that, physically at least, I am a product of every generation that went before me. Endometriosis is a very small, but disproportionately troublesome, part of my physical make-up. Where did it come from?
One of my take-aways from my brief flirtation a few years back with studying a bit of Science (it was an Economics module, and there was Finance as well, and some Statistics … I had to bend my brain round some very weird squiggles … it still counts, ok?!), was: Correlation Does Not Equal Causation. So far, when it comes to endometriosis and genetic predisposition, that maxim applies. We do know that endometriosis (which, by the way, although not a form of cancer, shares some characteristics with cancer*) very often affects women with relatives who are also sufferers**. What we do not know is whether that fact points conclusively to a cause. Why don’t we know? Lack of relevant scientific data is a major factor. For example: 70% of chronic pain sufferers are females. And yet, 80% of pain research is conducted on males. Makes perfect sense.
When my GP first suggested I had endo, I really struggled to get to grips with it. Where was it coming from? Why did I have it? What was going to happen? Was it just a blind alley? Why did none of the (many) tests and scans provide any answers? Was there something psychologically wrong with me? When I eventually got the diagnostic surgery, would they find a different illness altogether? If it was endometriosis, what were the associated risks? For several months, none of my relatives on either side, despite kindly telling me as much as they knew, could provide any insight into family members who may have been sufferers, either living or dead. Then, a relative visiting from overseas gave me an incredible gift: my lightbulb moment. It turned out she had been suffering with the disease for around a decade, and had had multiple surgeries already. Suddenly, I was not alone! I was face-to-face with a blood relative, who knew the physical and mental pain I was experiencing, who understood me, who was opening up to me and offering me the benefit of her experience! But, there was more …
Another family story that floats around, she reminded me, is that of my great-grandmother, whose only child, my grandfather, was born in 1915. By the time he reached middle age, his poor mother was in constant agony, on daily morphine for an illness that was then thought to be cancer of the spine. Yet, when her only son came to visit, she refused the pain meds, so that she could be lucid enough to know he was there and try to enjoy his presence. When death at last released her from her torment, my grandfather never forgot the sound of her screaming.
It is very possible, of course, that the poor woman did indeed suffer from cancer. However, I can tell you first hand that endometriosis causes other types of pain, including back pain. I began suffering constant pain in my lower back when my other symptoms (pelvic pain, bladder and bowel problems, fatigue) first came to light. And, although I am absolutely delighted to be largely free of the latter now, the former is still an issue. Go figure.
So: my great grandmother had something that appeared to be cancer (tick), suffered agonising back pain (tick) and, despite being in a stable marriage in the Edwardian era, had only one child (infertility?? – tick??). Those facts do not (individually or collectively) prove anything, of course; but, for me, they constitute a smoking gun.
And, until modern scientific data provide a breakthrough, they’re all I’ve got.
*Torng, P.L., 2017: https://www.sciencedirect.com/science/article/pii/S2213307017300953
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