On womb linings and associated detritus

At the end of last month, the Guardian seemed to have its own endometriosis week. I wasn't quite sure where the 'news hook' for this came from, and initially I wondered why it was making headlines in a week when surely we should have been talking about socialism. But then my endometrial tissue has taken up far more of my evenings over the last 30 years, so I figured I'd ride the wave while it lasts. 

I quite possibly have endometriosis. I certainly have, or used to have, the level of period pain that would indicate it. For years, I would hide away for hours every month, writhing, sobbing, furious and terrified, waiting for the codeine to bite me, the whisky to dull me, and my sanity to return. Few people ever got to see that, and the ones who did often didn't quite believe it. For each of my university exam terms, I went on the Pill, despite the side effects (weight gain, spots, tits like grapefruit) so I wouldn't be bleeding during the wrong week. Later, it affected my choice of job, the hours I could work, and the length of commute I could contemplate. I can tell if you are experiencing the kind of pain I used to experience. It turns you grey, you can't think straight, and you would genuinely lose a tooth, or a toe, or a family member of medium significance, if it would only just go away. 

The first time I "did something about it" I was 30, and it was because for a year I had a job with private health cover. I felt that the cover meant they could demand more of me, so I should demand more too. I had a vaginal ultrasound and then an investigative laparoscopy in a v swanky hospital in Oxford. I ordered a smoked trout salad which they brought me at 3 am. I remember the genuinely lovely gynaecologist who told me that my uterus was retroverted (no big deal except when it is) and there were a few 'possible endometrial spots' but he couldn't be sure without more invasive investigation and he didn't think it was necessary unless I did. Which I didn't, as I'd handed in my notice because I'd got my job at NGO X and my private health cover was about to cease. 

But it was useful information, and I looked after myself a bit better after that: watch how much you drink when you're premenstrual, watch how you plan your holidays, never make any major life decisions when you're within a week of bleeding (when you're actually bleeding, major life decisions are the least of it, so no worries). If you have to go home, go home. 

Which saw me through, mostly, until I hit my 40s, when shit totally went pear shaped. One of the few good things about my dreadful awful periods was that they were pretty reliable, timing-wise, and they were never that heavy (though of course that could be because the bleeding was happening in other places). I could tell the instant they started, often before anything had appeared. I wasn't one of those people who randomly bled through their clothes. Until I was. They used to come, nearly kill me, then go. Then they started coming, going, then coming back for more. They were slower and darker and heavier and bleaker and, while not so acute, generally just a whole lot worse. 

This coincided with the beginning of our Great Move North, so I would regularly (but not predictably) find myself sobbing in train toilets, improvising san pro from wodges of cheap-as-possible paper towel. There was one long, dark bike ride in the rain, back to a slightly damp room in a house with no warmth, that I will never forget. I took to carrying supplies - pads and drugs and my little microwaveable heat bag, a long-ago present from a long-ago boyfriend - up and down the country, just in case. It wasn't life threatening, but it was unutterably miserable. I can't remember what sent me to my GP, the changes were incremental but something must have tipped me over. She was marvellous - she was always marvellous - but she said that she wasn't the practice expert on 40+ hormones, and I should speak to Doctor Claire. 

Doctor Claire rang me a couple of days later. I was sitting on a bench at Radley station, waiting for a train. Can you talk? she said. Sure, I said. M was sitting next to me. Later, he told me (and he only heard half the conversation), wow, I had no idea. And he had been living with me for over 10 years. Doctor Claire recommended a Mirena coil, but I wasn't keen on that. I have heard about how they get those things in, I said, and let's just say I'm not going there without sedation. I haven't had children, remember. Well, fair enough, she said. We can do that (the sedation, not the children), but maybe we should check out your tolerance to the hormones first. Try this mini-pill for three months. If you have any problems you can stop, and if it helps then we can either knock you out and stick a Mirena up you (I paraphrase), or give you an implant. 

The next week, I went to pick up my prescription. The advice I'd had from Doctor Claire was that this particular pill had a transformative effect in around a third of cases, made naff all difference for another third, and for the final third, would only make things worse. You do not want to read the list of possible side effects. I thought myself a person who did not want to take hormones, having felt the combined Pill's side effects a huge price to pay for admittedly manageable periods. I knew myself to be unlucky in blood. I was not expecting to be in the magical third. But hats off to Doctor Claire, who at that point I had not actually met. By the time I did meet her, I had taken to singing 'Wo-oh, it's only Cerazette but I like it, like it, yes I do'. 

This drug CHANGED MY LIFE. Since I started taking it, over three years ago now, I have not had a period. Not a one. Not even a little bit of one. Not a twinge. No PMS. No pain. This is like being a child. Or a woman without a womb. Or a woman who's had the menopause. Or maybe a man. Someone who feels the same, every day of the month. Who doesn't get taken out of circulation three or four days at a time, and who can trust her own judgement from week to week. I don't shout at people. I don't sob. I don't think 'tonight, I will walk down the middle of the road and see if I get hit by a bus, and if I do get hit by a bus, I will see if it hurts more than this'. 

Full disclosure: I rarely got through my PMS and period pain without accessing other mind-altering substances, mainly alcohol and prescription painkillers, and usually both. If I'd been all about the flower remedies and the homeopathy, I might have handled it differently, but there is still no way on this sweet earth that I would have actively enjoyed riding that crimson, latterly sepia, wave. I made many efforts to accentuate the positives of the emotional rollercoaster (to be fair, I have done some excellent ranting, some of which can be accessed via the anger and hormones tags below), and gained meaningful awareness that one's mental state can be affected by things produced by one's body as well as things one has consumed. But with hindsight that was all set against a feeling that the alternative was weight gain, spots, and tits like grapefruit. And the slightly lobotomised dullness that came with all of that. I thought that this pain was part of the female experience. It was part of the miracle of life. It should, as far as possible, when it's not making you want to cut out your own uterus with a carving knife, be embraced. We're feminists, remember? This is WOMANHOOD. Not long after we met, M bought me a patchouli-scented second-hand copy of The Wise Wound. He meant well, but after much reflection I concluded that the hidden energies of my own moon cycle can basically do one.  

For realz. As one of the lucky third of Cerazetters, what I feel now is only the absence of bad things*. I have to struggle to remember them. I only remembered during the writing of this post what it was that first took me to the GP. I'd had three dreadful periods on the trot and I was beginning to think that I could only wear black pants and trousers and should have some kind of ceremonial bonfire for all the others. I was also getting through so many of those little packs of tissues (mostly for the crying, but also for the emergency san pro improvisation) that I'd started buying the shoebox-sized multi-packs. So I went to the doctor, the excellent doctor, and she said 'how can I help today Jo?' and I said 'I'd like a hysterectomy please, can I get one on the NHS or if not how much does it cost?'. 

So she did her excellent job, and Doctor Claire prescribed the Cerazette, and three months later I went to see her. She said, how are you getting on with it then? I said 'I think this may be the best thing that has ever happened to me in the whole of my life'. She said, well let's not mess with it then. 

And three-plus years later, here I am. I've kept all the empty blister packs as souvenirs (yes, really). Every six months I ask for a new prescription at my new GPs, and they book me in for a check up. My blood pressure is always a bit high the first time they take it, and I explain that it's because I'm worried that it will be too high and they won't give me a new prescription. How are you getting on with it? they say. It's the best thing that ever happened to me in the whole of my life, I say. And they write me a new prescription, and my blood pressure drops. 

joella

*I do sometimes think I may be a little harder than I used to be. But then stopping bleeding is not the only thing that's happened to me in the last three years. 

Here be dragons

They ask me sometimes what PMS is like, those people who don't have it. I never quite know how to describe it, though I can tell stories of skidding across a kitchen floor on the half a kilo of dried penne I had just thrown on it, of sobbing on a swing surrounded by a shredded loaf of bread, of spending an hour crouched on the floor cleaning the gunk out of the bit of the dishwasher you only see when the door is open, of learning the hard way never, ever to make major life decisions when the moon is swelling.

Basically, it's a random mixture of big horror and fixation with tiny details. You don't look forward to it, but hey, it's not boring. Yesterday I was down at the allotment by myself. There are a million things that need doing at the moment... digging, watering, hoeing, hacking at nettles, more digging... but the only thing I wanted to do was squat by the rocket patch and thin out the seedlings.

I'd left this a tiny bit late and it was a delicate job, stroking the leaves apart and feeling down underneath the little clumps to tease a stem away and pull it out without disturbing any of the others. It was hot and the soil was almost steamy (I worked out it was easier to pull out damp seedlings than dry ones) and it was kind of mesmerising. I was fascinated by my own fingertips and the things they can feel. It was restful to be focusing on a little patch of earth and not having to think about the rest of the big scary world.

And then I had a flash of a TV programme about hand transplants that I saw many years ago. It was disturbing, these men with someone else's hand sewn on the end of their arm, learning how to pick up coffee cups. One of them went all purple and had to be taken off again. Big, clumpy dead men's hands.

And then I couldn't thin the rocket anymore. An hour or so later, there was the little dark stab of pain that let me know it was ok to put my pyjamas on and curl up in a ball. No more dead men's hands for another month, hooray!

joella

Modern gender relations

"If I stab you with *this*," she said, holding up her paring knife to the light, "will it go in very far?"

"Yes," he said. "Hurry up and have your period."

I think of this as back to basics communication. And I put the knife down.

joella

Exemplary premenstrual eBaying

So three pairs of bright red socks arrived in the post this morning. Can't you, like, stop me? I asked M. It seems not, he said.

Still. You can't have too may boot socks this time of year. I'm already wearing the third pair, though they clash like mad with my orange pyjamas.

joella

The darkest part of the night

The pain wakes me up in the darkest part of the night. It used to do that when I was younger, but the last few years have been easier. I don't know why it's started doing it again.

I lie there for a few minutes, breathing carefully, adjusting, then slip out of bed to the bathroom. I can do this in the dark, open cupboards and wrappers, find drugs, take drugs. I slip back into bed, to wait for the codeine wave to break over me.

When this happens in the darkest part of the night it is scary. I am vulnerable and disoriented. I try to focus on the breathing, I lie on my balled fists. I try and keep still. But my mind always races. Into it this month comes Burma and Darfur, and the newly discovered photos of guards at Auschwitz. I am reading The Kite Runner (which I highly recommend, but which will not cheer you up much).

The veneer of civilisation is very thin, and these are the times I feel it might splinter at any moment. They come for you in the darkest part of the night, when you are alone and when you are already bleeding.

But I am not alone. After a few minutes M stirs. 'Would you like me to warm up your pink sack?' he says sleepily. My pink sack is a little corduroy bean bag that you can heat in the microwave. It used to smell of something comforting, like lavender, but that faded years ago. It was a gift, and I can't remember who from, but I am sure it was a man. It is the best thing in the world for this pain, but the microwave is two flights of stairs away and I can barely move.

Would you? I say, and he does. It is so hot that I need to wrap it in layers, which I unwrap gradually until it is next to my skin. The heat is bliss, it hurts, but in a sharp way, near the surface, tangible, movable. He goes back to sleep. I lie there until the light appears in the corners of the skylight, the birds are awake, and the codeine has dulled all my senses. Then I curl up round him, with the pink sack between us, and I sleep too.

I know when I wake up the world will feel more benign. And it does.

joella

The painters are consulting their colour charts

I was feeling verrry spiky last night. Usual reasons. I had dot to dot spots, churning innards and a sense of impending doom. M kept out of my way, though did furnish me with a big heap of spaghetti in the hope that it might help. And it did. A bit.

It's been a murky, fuzzy, unproductive month, and I want it to be over. It was tempting to head out for something strong enough to blunt my razor sharp edges, but when it gets to be like this, that's the shortest of short term solutions. Safer to retreat inwards and avoid major life decisions. Safer, in fact, to avoid most things.

I went to my CD collection in search of spiky music. I have tons of it, obviously. But then I couldn't find the box for the CD that was already in the player. I looked all over, I swore a lot and then I thought well fuck it, I'll just listen to that instead.

It was Tim Buckley's Happy Sad, which is about as unspiky as things get. I curled up in my big red chair and got myself lost in his big, big voice. It was like being wrapped in a blanket and told that it will all be all right, in the days when you believed 'all right' existed somewhere.

Onwards.

joella

Learning curves like sine waves

I'll be honest, there are moments when I'm plumbing when I think what the fuck am I doing here? I had a seriously big one this morning when I was stuck, short of sleep and battling period pain, in an overheated house in Kidlington completely failing to take a bath tap apart. I hung off it till my neck bulged, but all that happened was that the whole tap lurched round. This is bad news as it can loosen the connection under the tap. I dragged it back to its original position, but I was sure I could hear something gurgling.

I tried to check under the bath but the bath side was tiled in. Shit, shit, shit. I rang J the plumber in a bit of a state. Go downstairs! he said. Can you hear dripping? Um, I think so, I said. Shit, shit, shit, he said. Have you got a chisel?

No, I said in a small voice.

Right, he said, get the water off, I'll get someone over to get that panel off for you, and you'll have to change those taps.

OK, I said in an even smaller voice, panicking wildly about a) changing bath taps, which is a seriously evil job, b) consequently having no time to revise for, or possibly even sit, my final plumbing theory exam, which was tonight, and c) the fact that as well as no chisel I had no food and no tampons with me, and was getting to the point where I would be sorely in need of both.

I stood hugging myself in the bathroom, telling myself it would all be ok, just get this done and then you can go home and cry and never do it again.

And then it occurred to me to check if the cold tap, which was not dripping and which I hadn't touched, could be turned off any harder. It could. The gurgling noise stopped.

I rang J back and left a message telling him that I am an idiot. I left the tenants a note saying that the basin tap was done but the bath tap wasn't and would need to be changed at some point. I dropped the keys off with the letting agent, drove home to eat Lebanese food with M and ex-housemate S and baby Tungsten, and sat in the garden to revise for my exam (which I went on pass convincingly, which might not have happened without those two hours of fact cramming). I remembered how I felt fitting N&D's bathroom in Manchester this weekend -- miserable on Saturday evening when all the waste outlets leaked, euphoric on Sunday afternoon when D and I had fixed them all with generous application of silicone and Plumbers Mait and you could see what a lovely room it was going to be.

It's not a job you can fudge, basically. When it goes wrong it's terrifying, but when it goes right it makes you grin from ear to ear and sing along to Alison Moyet all the way home. To paraphrase Billy Bragg, you need to have the crunchy so you can have the smooth. And that's why it's worth it.

joella