An unkind cut: Why Katie Thorpe should not have a hysterectomy

Should the mother of Katie Thorpe, a teenager with cerebral palsy, be able to demand a hysterectomy for her? Kate Ansell, who also has CP, says such a move should not be contemplated
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Indy Lifestyle Online

I have a lot of empathy with Katie Thorpe, the disabled teenager whose mother is requesting she have a hysterectomy to spare her the "indignity" of menstruation. Like Katie, I have cerebral palsy. We both had "traumatic birth experiences" and live with the resulting brain damage. Its effects are pervasive.

However, no two people who suffer from cerebral palsy have identical experiences. The first thing people tend to notice about me is that I walk with a stick and talk with a lisp; Katie has profound physical disabilities and is thought to understand little of what is said to her.

Yet for all the differences between Katie and I, when I first heard her story I did feel more than pang of recognition. The panic over her impending menstruation reminded me of a far lower key – but mortifying – confusion in my own life, a decade ago.

I was a student. I was having more difficulty walking than usual, and I couldn't get to the laundrette. I lived in student accommodation so it was arranged that while I was recovering, the university cleaning staff would do my laundry for me, a system that worked perfectly for several weeks. Then one day the college nurse popped round to tell me there was a problem.

As it happened, I had my period that week and was bleeding fairly heavily, possibly as the result of some medication I was taking at the time. The cleaning staff, I was told, "wouldn't deal" with bloodstained laundry, so I was asked if I could "do that bit [myself]." it was an interesting request considering I had extremely limited stamina and no access to washing facilities.

As someone who paid attention in sex education lessons, I did know the one sure-fire way of preventing bleeding for nine months straight, and did suggest to the nurse that it might be easier for all concerned if I tried pregnancy instead. She suggested not.

By the time it had been politely requested that I bleed less obviously in future, I calculated that at least a dozen people around the university knew all about my troublesome monthlies. At the age of 19, I wanted to curl up and die.

It would seem I got off lightly compared to Katie Thorpe, whose menstrual cycle has become headline news. That such personal matters are being discussed on GMTV is ironic given that one of her mother's reasons for requesting the procedure is that she will be unable to be "discreet" or "private" about it if she does menstruate. I could mention that many disabled women use carers or PAs as to assist with such personal care, and that needing that assistance does not automatically result in a loss of dignity or privacy. But of course, I am not in the same position as Katie Thorpe.

Mostly I can manage my own menstruation, although I would be grateful if people would stop putting pedal-operated sanitary bins in disabled toilets, and maybe package feminine hygiene products so that women with dexterity problems can open them with hands rather than teeth. No one gives much thought to the fact that disabled women do have periods, never mind use these products. Thanks to Katie Thorpe, everyone's thinking about it now.

Of course, Katie will never have the luxury of managing her bleeding alone. Her mum – the person who knows her best – is saying that because she will never have children, her daughter would be better off without a womb. Katie herself is not in a position to offer an opinion.

I am not sentimental about menstruation. There have been times I've wished I didn't have a uterus. I have absolutely no intention of having children and, for reasons entirely coincidental to my CP, my periods have always been unpleasant and difficult.

Still, it's never occurred to me that radical surgery like Katie's might be the answer. For a start, major surgery is never risk free. Beyond that, women who have early hysterectomies are at greater risk of early menopause and the health problems associated with that. The uterus is far more than a place to grow babies. It has an impact on a woman's overall health. If it didn't, I'd have mine taken away tomorrow. For now, I'm planning on keeping it.

It's been pointed out that Katie might be at greater risk of health problems like thrombosis if she were to take the Pill or have contraceptive injections. This may be true, but many wheelchair-using women do use these methods without a problem. Personally, when I tried to take the Pill, my blood pressure rose so high I had to stop immediately. Maybe this was related to my lack of mobility, maybe I was unlucky. At any rate, my GP helped me find other ways of managing my tricksy cycle without resorting to the surgeon's knife.

For now, though, no one knows how Katie's periods will affect her. Just like CP, menstruation affects everyone in different ways. For me, the combination of the two is an odd one: I do tend to get a little more achy and tired before my period, but I've also discovered that the medication I take to prevent severe muscular spasms also reduces menstrual cramps, which isn't surprising when you consider the mechanisms involved. My friends consider me to be at a significant advantage here. At any rate, any menstrual pains I experience are slight in comparison to the disability-related ones: these symptoms will not necessarily represent a huge change for Katie.

So Alison Thorpe might be right. Periods could be a trial for her daughter. But it's possible that they won't. I don't believe she is wrong to suggest a hysterectomy, but I'm perplexed as to why it's being considered before Katie's periods have started, before anyone knows how they affect her, before other, less invasive methods of management have been tried.

When Katie's periods start – an occasion which may yet become a national event if current speculation continues – her family and doctors will be able to observe the impact they have. Any decision made before that point will be nothing more than guesswork.

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