Wednesday, 14 April 2010

the reasons for endo writer

raise awareness of endo, so women don't have to suffer
I wasn't diagnosed with endometriosis. My GP said chronic pelvic pain could have many causes, so we wouldn't bother looking, and the gynaecologist said painful periods (2 weeks in bed a month) were normal. I disagreed. I figured doctors learnt by reading, and I could read; I had lifelong membership of the Bodleian Library, so I could read their stuff. I read their stuff. Another story for another post, but I diagnosed endometriosis and a laparoscopy later confirmed it. Six years on, awareness is growing, but is still lacking, even amongst doctors - all the more shocking as 1 in 10 women are thought to have endo1.

This matters, because endo is treatable: you don't just gain a name for an ongoing pain, you can stop the pain. It's not a quick-fix, but there are plenty of good options. Unfortunately for some women, including me, they're mostly hormonal, so...

raise awareness of progesterone intolerance, so women don't have to suffer
Imagine the blackest PMT: despising yourself, feeling two inches tall, seeing life stretch out devoid of all hope and possibility, sobbing uncontrollably, your heart hurting like someone's stabbed it, bleak with tearless harsh despair - then imagine it doesn't end after a few days. It lasts two weeks. Or three months. Or two years. And it's completely unnecessary. All you have to do is stop taking the pill, or get your Mirena coil taken out, and return to your joyful, human, recognisable self.

Progesterone intolerance is barely on the radar, but I believe will prove to be common. At the moment, very little info's available on the internet, and almost nothing about it as a contraceptive, only post-menopausal. So I'll go find it, and get it out there, because I still have my Bodleian library card. Oh - and because I wreaked havoc on my life and nearly committed suicide, thanks to that wee white pill, so I'd quite like to spare other women that.

share & encourage new research
New discoveries and insights into endometriosis are available (notably at and - I'll join them in spreading the news, paraphrase the journal papers that not everyone has access to, and cite all my claims so you don't have to tell your doctor "this is wot I finded online" but "According to Vercillini et al, ..." I'll also hunt down good solid info on progesterone intolerance and put that in the public domain. And if I need help with the long words, I have my favourite pathologist, aka Dr Fernando Martinez-Estrada, to translate medical to English.

encourage new research
The more people are aware of endo, the more likely research is. Somewhere out there are hundreds, even thousands, of medical students looking for a research topic: here's ripe pickings. I'll also trawl through the abstracts and create reading lists of papers and research, to provide a handy reference for the field. No, I'm not a doctor, but plenty of my doctor friends, and doctors I've seen, have never even heard of endo - and I can read - so I'll throw the ball up there, for the catching. First on the list: we're not SAD, we're SORE, and IF we're sad, it's BECAUSE we're sore. 30-50% of women are misdiagnosed with depression2. More info soon...

create a full-colour picture of having endo
More than that, too little is known of women's experiences of endo, which are often ignored or dismissed by their doctors instead of recorded - we need more qualitative research, where the answers aren't limited to specific options, as well as quantitative research. As well as raising awareness for medical researchers, I want to collect responses, both free-style and with side-bar quizzes, and post results. Coming up soon (and already collected): women's responses to what's the worst aspect for them & what they've learnt. It's eye-opening stuff.

create a place to chat & share
Anyone's welcome to come join me on the sofa, yell out when they're in pain, burst into tears when it's just too damned unfair or unfaceable, pass on their hard-won advice & tips, and generally hang out. If you have topics you'd like me to write about, or pieces you'd like to contribute, please shout. It's open house.

make something beautiful & useful from the pain
When I'm stuck on the sofa feeling hot tides of pain wash through my belly and down the very marrow of my bones, I shall sing, and make pretty pictures, and find useful things to tell people.

Live with a constant passion,
Reckless with your heart.
Refuse to accept your ration.
Throw out the old and start

Again, and in your fashion,
Rebel, play your own part:
Nothing so shit can happen
That you can’t make it art.

1. Vigano P, Parazzini F, Somigliana E, Vercellini P. ‘Endometriosis: epidemiology and aetiological factors’ in Best Practice & Research Clinical Obstetrics and Gynaecology 2004;182:177–200.
2. Floyd, Bonnie J. 'Problems in Accurate Medical Diagnosis of Depression in Female Patients' in Soc. Sci. Med. 1997;44:3:403-412

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