The beautiful calm of intense pain

You'd have to be Sherlock Holmes - or the primary care-giver, parent or partner - to spot the tells.  The unnatural smoothing of the forehead.  The thousand-mile stare.  The gracious, unexpected freeze.  The slight smile, even, because smiling releases serotonin, a natural pain killer.  And this is what indicates that the invisible leopard is eating your stomach, tearing out strips of flesh, gnawing inwards, snuffling deeper for the tasty organs.

"You look well!" or, more disconcertingly, "But you look so well!" or worst of all, "You don't look sick!"  Few illnesses come with handy suppurating sores.  But even so, fair enough: punch someone in the stomach and they'll groan, yelp, scowl, grimace, their face crumples, they double over.  That's what pain looks like.  With chronic pain, though, eventually you just stop displaying pain.  You can't scream and scowl your whole damn life, you know.

I'd forgotten all this, so I'd forgotten to take ibuprofen before I left the house, even though my period had started. The pain only really hit when I reached the coffee shop.  Today's plans: coffee-shop planning of my week; shop for presents; pop over to my friend B's to deliver presents to her kids; clean house; dinner out.  Today's metaphors: two large millstones slowly grinding my stomach between them; an invisible leopard eating my belly; a hot tide rushing up and down my leg marrow.  It's immensely distracting: brain, interrupted.
"Coffee?" says the waitress.
One, two, three. Why's she asking? I'm here every Sunday, and often in between, they all know me, I only ever have coffee.  One, two, three.  "Yes."  One, two, three. "Please."  One, two, three.  Smile.
She gives me a quizzical look, but I can't see how to explain that the invisible leopard eating my stomach is responsible for the odd delays.

I sit, very still, and wait.  I've taken the ibuprofen, now.  It will start working soon.  The beautiful calm of intense pain, I think.  How it interrupts one's thinking, every natural chain of thoughts and flowing intellectual flight cut into snippets, processing power swamped by overwhelming sensory stimulation, attentional blink - my esoteric musings are cut short: fuck!  That bloody hurts!

My coffee arrives.  I can't lean forward to reach it.  Shift my chair? Pain level: 8.  Duration: 3.  Visibility: 1.  Nah.  Shift the table instead.  Pain level: 5.  Duration: 3.  Visibility: 1.  I shift the table, but coffee slops into my saucer.  Shit.  Now I have to cross the restaurant to get a napkin.  Pain level: 7.  Duration: 30.  Visibility: 10.  It's like the bloody shipping forecast in here.  Poor; losing identity later.

I can now reach my coffee.  Each time I lift it, carry it through the air to my lips, and return it, I'm quietly screaming inside.  Stuff it, not worth it.  I'll drink it in half an hour, when the pain killers set in.  I also can't lean over the table to start my planning.  I reach into my mental timetable to start adjusting my already crammed schedule by half an hour... Ah.  Right.  Revised plan for the day: sit still for half an hour, then plan.  Apologise to B re visit, presents, kids, etc.  Aplogise to partner re house.  Dinner out?

So I sit.  A smooth forehead, a dreamy gaze, a Mona Lisa smile.  (Plus invisible leopard.)

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Progesterone intolerance spotlight: depression

• affects 1 in 5 women • likely if you get bad PMS • damaging & avoidable Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing Progestogens are in... • the contraceptive pill • the contraceptive injection • the contraceptive implant • the Mirena coil • some HRT It's a key treatment for endometriosis. Read more...

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice. Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do. If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.

sorrow •  hopelessness •  total perspective vortex

Sorrow
When someone close to you dies, or when someone you love deeply breaks your heart, the sorrow comes wherever you turn. You open your eyelids to your loss in the morning. It's waiting in the mirror when you raise your face from the basin. You open your wardrobe and it stops you dead, staring into the folds of clothes, numb with sadness. You lift your tea and tears clog in your throat, stopping you drinking. You rest your fork, you put down your pen, you turn to cross a road, and another wave of grief and loss floods you.

The sorrow of depression is the same.  Waves of sorrow, grief, and loss hiding in all the folds of your day.  But sorrow about what?  Like the anxiety of paranoia, it finds something to attach itself to - and in my experience, with more success than the anxiety. Few human hearts have no secret griefs. And grief is proportional only to itself.

If you already get severe PMT (and that's likely, because it correlates with progesterone intolerance), you're probably experienced at separating out the actual issue and the massive sorrow.  I use PMT as an emotional audit: okay, those things are clearly the issues, so I shall deal with them - after the PMT has gone. Jot it in my diary for three days' time, emotional to-do list. But what if the feeling doesn't go for three weeks? Two months? Years?  And you know that it's not going to get better. Ever.

Hopelessness
Alongside the sorrow, comes a feeling that the lights have been switched off in your life. Your job - an empty pursuit, an endless repetition on the way to retirement and death. Your relationship - loveless, an enactment of norms. Your finances - desperate, because what you have now is not enough and there will never be more. This day - hollow and scraped clean of meaning, only a list of things you need to do, or that you're supposed to "need" to do; you can see from this moment, walking alongside iron railings, to the moment you get home, and the kettle put on, and tea made, and then you will drink the tea, and then you will have finished the tea, and then you will do something else. Make supper, perhaps. So you will make the supper, and then eat the supper, ash in your mouth, and then you will have eaten the supper. Perhaps you will watch something on TV. It will make no difference to your life, but you will watch it, and then you will have watched it, and then you will go to bed. Perhaps you will go out for a drink; the putting on of the make-up, the buying of the drinks, the drinking of the drinks, the drinks are now drunk, and you go all the way back home and take the make-up back off and you are where you started, and nothing has changed.  And nothing will change; nothing will ever get better.  Your heart will never hurt less than it does now.  Your dreams will stay the dead seaweed they are today; no waves will wash in to bring them back to life.  Your every hope for the future, for the home or the love or the job or the book, is cut dead.  The lights won't come back on.  And what's more, this isn't some depressive mood, some momentary gloom: this is the absolute truth about life.

Total perspective vortex

2 “Meaningless! Meaningless!”    says the Teacher. “Utterly meaningless!    Everything is meaningless.”   3 What do people gain from all their labors    at which they toil under the sun? 4 Generations come and generations go,    but the earth remains forever. 5 The sun rises and the sun sets,    and hurries back to where it rises. 6 The wind blows to the south    and turns to the north; round and round it goes,    ever returning on its course. 7 All streams flow into the sea,    yet the sea is never full. To the place the streams come from,    there they return again. 8 All things are wearisome,    more than one can say. The eye never has enough of seeing,    nor the ear its fill of hearing. 9 What has been will be again,    what has been done will be done again;    there is nothing new under the sun. 10 Is there anything of which one can say,    “Look! This is something new”? It was here already, long ago;    it was here before our time. Ecclesiastes 1:2-10

"For when you are put into the Vortex you are given just one momentary glimpse of the entire unimaginable infinity of creation, and somewhere in it a tiny little marker, a microscopic dot on a microscopic dot, which says 'You are here.'" - Douglas Adams, The Restaurant at the End of the Universe

Alongside depression comes this unshakeable, absolute conviction that, finally, you are seeing clearly.  The scales have fallen from your eyes.  The fundamental meaningless of everything is revealed; the total perspective vortex shows you the universe and says, "You are here."  The hollow futility of ads blasting fashion and must-haves, the pointlessness of all contemporary pursuits, the emptiness of days which fill themselves with these copied ruts - anyone who denies the truth of this is suffering wild delusions.  You are seeing the true heart of being.

I don't know if there's any way to shake that conviction, besides the experience of having been there before, and come out the other side, and watched life take back on its lifeblood of light, meaning, beauty, and purpose. Again, the seaweed: lying so blackened and dead, a wasteland, but when the tides come back, it will dance in the sparkling water among shining churning grains of sand, the magical underwater world of moving fronds and fish returns.  The dead seaweed isn't the truth of the sea or the coast.  But by God, at the time, it feels like it.

The sorrow made me want to take the knife and hold it to my wrist.  The hopelessness stripped my future of any option beyond that stark choice.  But it was the the total perspective vortex that made me press down, because I believed that what I saw was the truth of the world, that all the happiness and joy I'd ever had was just an illusion.  But actually, of the whole wonder of the sea, all I was seeing, all I was able to see, was the dead seaweed.

'Cheer up!'
Cheer up! Buck up! Pull yourself together. Get a grip! Stop feeling sorry for yourself. Have I ever told you how lucky you are?

Anyone who's suffered depression will recognise how unhelpful these sayings are. It's worth remembering that people are trying to help, mostly - but certainly with chemical depression or hormonally-induced depression, that simply doesn't work. It's like telling a person with a broken leg to go for a jog.  And it needs to be recognised as that: it is the hormones creating this state. Like the paranoia, like the sorrow, it is a hormonal, chemical reaction. It is not circumstantial depression.  Circumstantial depression may react to a change in circumstances.  Hormonal depression is being pumped in by the hormones, and all the good will and positive thinking in the world is no good while the source, the hormones, are still pumping away.   You don't try to stop a flood by imagining things dry; you find the source and stop that.

I have list upon list upon list, from the dark days, of How To Be Happy and Happy Things To Do and Things That Make Me Cheerful.  I painstakingly recorded, through crippling grief, things that I remembered used to bring me pleasure, and tried to do them, to fix myself.  I couldn't fix myself - because I wasn't broken.  My attempts only brought me fresh grief, because the things I most loved brought no happiness, and as I ticked off my lists, I crossed off one by one the things I used to love - until even writing, even reading, my two greatest joys, were as helpless to help me as the rest.  When you are trying that hard to be happy and people tell you to just be happy, how lucky you are, how you just need to pull yourself together, yes, that is difficult.  You can't.  Broken legs can't jog.  One of the posts still to come will talk about how you can help yourself cope with progesterone intolerance, in more detail, but for now, rest on this: it will pass; it is no more the truth about the world than dead seaweed is the truth about the sea; it is not your fault, your weakness, or your lack - you are strong.

Depression is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

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Music: Hello by Evanescence

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Progesterone intolerance: Loss of enjoyment

• affects 1 in 5 women • likely if you get bad PMS • damaging & avoidable Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing Progestogens are in... • the contraceptive pill • the contraceptive injection • the contraceptive implant • the Mirena coil • some HRT It's a key treatment for endometriosis. Read more...

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice. Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do. If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.

Loss of enjoyment. It sounds like nothing. An "Oh, dear" at most. For me, this is by far the worst effect of progesterone intolerance – and the most destructive.   Progesterone inhibits reward responses, which give us a sense of pleasure or enjoyment.  Without that, making decisions is extremely difficult (not to mention risky) and life loses its purpose.  Trying to 'fix' that, without knowing what's actually wrong, can destroy one's life.

Progesterone and oestrogen are effectively the two halves of a woman's cycle – oestrogen builds in the first half, up to ovulation, and then progesterone takes over from ovulation to your period. Research into rewards and the menstrual cycle found that progesterone lowers women's reward responses, the "yes!" we get from doing something we like or are addicted to. 'Woohoo!' cried the researchers. 'We can use it to stop women shopping and taking drugs!' But as Emily Anthes's article notes,

If progesterone is blunting the effects of rewards, it could spur women to engage in more pleasurable activities–such as impulse shopping–just to generate the same 'high''.

Amidst the compulsion to see women as compulsive shoppers and beings whose behaviour can and should be controlled, an intensely important issue is entirely overlooked: progesterone lowers women's abilities to experience neurological rewards.  When you are progesterone intolerant, this can become severe and turn into total loss of enjoyment, or "anhedonia".

The reward response is the interior "yes!"   How much one relies on that interior "yes!"  To know you're enjoying an evening.  To know you're full.  To know the caffeine's hitting the spot.  To know the wine is having an effect.  To know you like your friends.  To know an idea's good, to know a plan is worth pursuing and should work.  Meanwhile, the interior "NO", that note of warning, is unreliable: sounding more and more often, more and more loudly, ringing the bells of anxiety, guilt, fear, but could be, probably is, paranoia.

It's astonishing how little can be objectively decided, how reliant we are on that interior "yes" and "no". Perhaps it should not be so astonishing, because whether we like it or not, emotions are how we make decisions:

The limbic system forms an emotional core of the human nervous system ... The limbic brain has retained its function as the decider of valence [during the evolutionary process]. What the cortex does is provide more detailed analysis about what is going on in the world so that the limbic brain can decide what is important and what to do. (Cytowic, 1994: 157, 168)

It's so strange to try function without that interior guidance, without the "yes!" and closing your ears to the constant misfiring "no", like being a computer trying to pass the Turing test, constantly needing to check in with real human beings, who have access to proper feelings, to check you're doing it right.  I need it right now, writing this, to know which personal painful excerpts to include to best illustrate this ("yes") and which are too personal ("no").  And some are exceptionally painful and personal: lacking access to that "yes!" can be disastrous, because that's how we judge things are working.

The food's not working, so you have some more. The wine's not working, so you try another.  The coffee's not working, so you try another.  The relationship's not working, so...  The degree isn't working, so...  The house isn't working, so...  The job isn't working, so...  The natural human response, if something isn't working and is bringing you no enjoyment and no reward, is to change it – but it's working just fine.  It's you that's not "working".  The natural human response, if you are without enjoyment and reward, is to look for it – but it is nowhere to be found, nothing brings it, and you're not yet ready to give up on life, not quite, so you keep trying.  The fruitless pursuit of pleasure can be immensely damaging.

The fact is, the food won't make you satisfied, just full.  The coffee won't make you excited, just jittery.  The wine won't make you happy, just drunk.  The music won't swell your soul, the scenery won't lift your spirits, the hug won't make you feel loved, the evening out won't bring you fun, the joke won't make you laugh, your work won't bring you satisfaction.  That sounds like a desolate list.  It may be horrible to experience, but it is good to know.  Nothing is actually broke, so don't fix it – don't break everything, trying to fix it.

This is easier to do when you know what you're experiencing. If you don't know nothing's broke, if you don't know you're progesterone intolerant, if you don't know your reward responses are being blocked, you think it's all real.  From the age of 19 to the age of 25, that was my reality.  I broke things.  I remember the university coffee shop, sitting in coffee steam and cigarette smoke, trying to piece my reality together out of the fragments of everything I'd broken, trying to make sense of it and stitch my thoughts and myself back together word by word in my notebook.  I was so, so unhappy then.  And it breaks my heart to think it was all so unnecessary, just down to the pill, which I wasn't even taking for contraception, but because my doctor had convinced me it was keeping me stable and that without it I would be even crazier, more manic, more chaotic, instead of magically restored to my sane, calm, happy self within a month.  Instead, I flailed my way through hell, a hell increasingly of my own making, breaking everything in an increasingly desperate attempt to fix it.

You see, when you're anhedonic, you can't feel anything good.  Positive emotions just don't make it through.  But you can feel negative emotions.  And eventually, it's a relief to feel anything at all.

A year ago, I was in the grip of the same loss of enjoyment, anhedonia, but this time with the benefit of knowledge.  I drove to work with the wintery sunlight glistening through mist to gleam on water and catching on twigs, and looked it without response, numb.  The traffic crawled through perfect beauty and stopped; I looked at it and saw a field, a tree, some water.  The car in front would start moving and I would still sit, trying to find the will to put the car back in gear.  I had no reason to.  But I knew, this time, how to live like this: I knew how to stitch myself together with words in my notebook:

So here's the plan.  Hard-won experience tells me that however devoid of purpose life may feel, it does regain meaning at some point, so the thing is to keep the home fires burning – keep things in order & not contribute to any destruction.  So right now I can't imagine being able to write my novel, and plans for a holiday feel remote and blank, and the idea of wanting to earn money for anything in the future is utterly lacklustre because all the pull the future held seems to have vanished, snipped off.
I can't see or feel any purpose.  But I have to believe there is purpose.  And keep working towards my goals so that when meaning comes back, there's a well-kept, well-running, bright life waiting for it, in better condition than before.
There are things I can do by rote.  If this feels a bit like dot-to-dot of How To Live – well, that knowledge was damn hard won, so I'm not going to scorn it.

I wrote myself lists on how to live and followed them.  Lists of work, lists of housework, lists of how to rest, lists of how to socialise.  I put my head down, bereft and purposeless in a life devoid of meaning, and followed the lists.  After a few months, I had the Mirena coil taken out.  I remember the exact moment I first experienced enjoyment again.  I was walking into town to meet a friend, with the same dull list-following sense of duty that had characterised the last five months, and walked past All Soul's College in Radcliffe Square.  The golden gate caught the last of the sunlight, the green lawn of the quad glowing behind it, and my heart gave a tiny flutter, a butterfly twitch, no more.  "That's beauty," I thought, dumbfounded.  "And I responded.  I actually felt it.  I felt enjoyment."

Loss of enjoyment (anhedonia) is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

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Cytowic, Richard E. 1994. The Man Who Tasted Shapes. London: Abacus.
Thanks to Emily Anthes on Wonderland for reporting progesterone reward research
Music: Into the West, Annie Lennox
Painting: Melancholy of a Beautiful Day, Giorgio de Chirico

Progesterone intolerance spotlight: paranoia

• affects 1 in 5 women • likely if you get bad PMS • damaging & avoidable Effects include depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing Progestogens are in... • the contraceptive pill • the contraceptive injection • the contraceptive implant • the Mirena coil • some HRT It's a key treatment for endometriosis.

This series of posts highlights the effects of progesterone intolerance, from my personal experience. They are not medical advice. Medical professionals: it's important to understand the severity of progesterone intolerance and the damage it can do. If you think you are progesterone intolerant: avoid taking progestogens if possible and find a sympathetic doctor. If your doctor dismisses your symptoms, change doctor.

Paranoia is my early warning system that the progesterone side-effects are starting to kick in. It starts as a feeling of vague intuition - I shouldn't be using this soap, I should be using the other one. I should turn down that road, not this one.  In the coffee shop, a quiet conversation between the manager and the waiter alarms me: are they talking about me? Don't they like that I sit here scribbling and drinking coffee, have I done something wrong? I don't have my computer. I haven't checked my email. Something might be wrong, something important, with work, am I in trouble, have I done something wrong?

Sourceless anxiety hunts around looking for something to pin itself onto. Each time it does, I try - quite rationally - to refute that specific anxiety. But that doesn't get rid of the anxiety itself, because that's not where the anxiety's coming from - it's coming from a reaction to an artificial hormone, progestogen, which is still there. I remind myself, instead, that it's not to do with anything, not the waiters, not work, it's just paranoia.

Ironically, paranoia's recursive. When I try to face it directly, it feeds on itself: am I whipping myself into a frenzy of paranoia? Am I actually feeling paranoid or am I just being paranoid about being paranoid? Is it my fault?? HAVE I DONE SOMETHING WRONG? Goblin guilt.

It can be anxiety and guilt; it can be worse. Years ago, in a quiet pub, I began to panic that the door would open - and then it did. My panic would rise - oh god, please don't let them approach me - no, no, they're coming straight for me... Of course they were. I was the bloody barmaid. I had to take anti-depressants just to cope with the terror of serving customers. It would've been better to stop the damn pill, but I didn't know that then.

Years later: living in a shared house, a huge old three-storey thing by the canal, shabby and plain and clean. Late evening. All the housemates were out. My room overlooked the street outside, a busy thoroughfare from the station to the centre of town, safe enough, sometimes a bit iffy-feeling. I grew anxious. I closed the curtains. I sat, trembling. Now I could no longer see if someone were poised to smash their way in. The single-pane shutter windows were fragile. I was being ridiculous; no-one would break in. Frightened, I left the room and went into the corridor, but that was worse - stairs leading up, disappearing into the dark and a houseful of darkened rooms; okay, staying calm - F's room then, same floor, at the back of the house, overlooking the garden, besides, he's a good friend, it's a safe-feeling space. I enter his room. I can't shut the door, because then I wouldn't be able to see into the corridor to be sure it's empty. The staircase dwindling into the dark still unnerves me, but I can't walk up into the house switching on all the lights because to do that I'd have to walk into the dark. Here, I'm standing in full electric light. The curtains are open. I can see myself white-faced and dressing-gowned in the glass. And then I realise - I was wrong all along. There's no-one outside my window, there's no-one upstairs in the house, they're in the garden. Standing there, in the dark, looking in at me illuminated, seeing my terror and seeing that I'm alone. I try to tell myself that there's no-one in the garden but I know they're there. And any moment now... Weeping with fear, I rush back to my room, struggle into my jeans, fumble with buttons, I can't move fast enough, I'm taut with terror waiting for the glass to splinter, I'm yanking on a t-shirt - I bolt into the corridor, out the house, onto the pavement. Trembling. Sordid orange lamplight, people - none of whom are safe. I start to run. The wind is whipping and a giant spider scuttles at me - but it's a leaf - and the next leaf is a spider, or a leaf, and they're chasing me - I run up Walton Street, frightened of shadows and frightened of empty deserted pavements and frightened of the sudden looming shapes of people, I run over the gratings of basement flats sick with fear of what hands are reaching up and grasping for my feet, I run all the way to the bar my boyfriend works at and walk in shaking, trying very hard to act normal.
"I had a panic attack," I say, when he approaches, as if I'm not still having one. He gets me a table and brings me a glass of wine. There are pillars wound with roses, and behind the pillars, there are things hiding. I know there's nothing hiding behind the pillars, that this is a restaurant not a monster den, the same way I knew they were leaves not spiders, that nothing was creeping through the gratings, that there was no-one in the garden, but the fear's still raging and all my evolutionary history demands that I identify the source and fight it or flee it. I convince myself instead that he will fight any monsters that appear and sip my wine until the shaking stops.

That was the last time I took the oral pill. But to control my endometriosis, I use the much lower dose of the Mirena coil, and over the course of six to eight months, the side-effects creep up. This is my advice to myself.

If you think you're being paranoid, you are. If you fear you might not really be paranoid, you're just being paranoid about it, that's paranoia. If you're paranoid that it might not be as bad as you think and you're causing it yourself, that's paranoia. Once you've identified it as paranoia, ignore everything it says, including everything it says about the paranoia. Don't listen to the goblins.

Hard as it is to talk about (paranoia will try to stop you saying its name), it's worth having a few people who know the situation: saying what's happening helps neutralise it, and you can check in with them to get a more accurate perception of things. (Having someone like that at work as well is invaluable.) Plus, then you don't need to be paranoid about what they might think of your paranoid behaviour.

Paranoia is an effect of progesterone intolerance. The effects of progesterone intolerance can damage lives, completely pointlessly. This affects 1 in 5 women, so please help raise awareness by sharing this post - and please feel free to share your own experiences.

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Can't stand the pill? A brief introduction to progesterone intolerance

Depression, weeping fits, irritability, aggression, paranoia, guilt, panic attacks, loss of enjoyment, loss of inhibition, self-loathing... If the pill drives you crazy, you're not crazy: you're probably progesterone-intolerant. This isn't rare: 1 in 5 of women are progesterone intolerant.¹ Nor is this "moodiness" or "negative affect". It can destroy relationships, cripple academic performance, damage careers, and turn otherwise mentally healthy women suicidal. It can be misdiagnosed as chronic depression and bipolar disorder², leading to years of inappropriate treatment. It shouldn't be news, either: this kind of bad reaction to the pill has been known about for at least forty years.³ 

It's incredibly common, it's well-established, and it destroys lives. 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. In the inaugural post for endowriter, I said I expected it to be common - but I didn't expect it to be so common, or the information to have been available for so long, and when I found that out, I wept. Because, as I also said in the first post, I wreaked havoc on my life and nearly committed suicide; the damage that I listed above is my own experience as well as cited sources; and it was all unnecessary. So here's the basics.

progesterone and progestogens
Progesterone is natural; progestogens are artificial.  Progestogens are in the combined pill (along with oestrogen), the mini-pill (progestogen only), the Mirena coil, the hormone implant, the contraceptive injection, and some HRT. The intolerance, however, seems to be the same:

Cullberg (1972) showed that women who had previously suffered from PMS reacted badly when taking oral contraceptives. This suggests that women with PMS are more sensitive to hormonal provocation than women without.¹ 

In other words, if you react badly to your own progesterone, you'll react just as badly (or worse) to the artificial kind. If you get bad PMS, the pill will be worse.

PMS and progesterone-intolerance
PMS is actually a form of progesterone-intolerance. Progesterone is released in the second half of your cycle, from when you ovulate to your period. (This is the luteal phase, usually 10-13 days long. It varies from woman to woman, but is very consistent for each woman.) Contrary to popular belief, it's not caused by your approaching period - it's caused by the progesterone released after you ovulate. That's also why symptoms ease within a day or two of your period starting. The symptoms for PMS and progesterone-intolerance are the same:

This hormone can produce depression, tiredness, loss of libido, irritability, breast discomfort, and in fact all the symptoms of PMS, particularly in women with a history of PMS.⁴ 

The symptoms are often described in articles as "negative moods" or "negative affect". As mentioned at the beginning, this doesn't begin to describe the emotional and mental hell that women go through, never mind the severe repercussions on their lives.

Symptoms of progesterone-intolerance
The symptoms of PMS (which are also the symptoms of progesterone intolerance) are described by the American Psychiatric Association as follows.⁵  The first four symptoms are the strongest indicators.

1. Markedly depressed mood, feelings of hopelessness, or self-deprecating thoughts

2. Marked anxiety, tension, feelings of being ‘keyed up,’ or ‘on edge’

3. Marked affective lability (e.g. feeling suddenly sad or tearful or increased sensitivity to rejection)

4. Persistent and marked anger or irritability or increased interpersonal conflicts

5. Decreased interest in usual activities (e.g. work, school, friends, hobbies)

6. Subjective sense of difficulty in concentrating

7. Lethargy, easy fatigability or marked lack of energy

8. Marked change in appetite, overeating or specific food cravings

9. Hypersomnia or insomnia

10. A subjective sense of being overwhelmed or out of control

11. Other physical symptoms, such as breast tenderness or swelling, headaches, joint or muscle pain, a sensation of bloating, weight gain. 

That's a terrifying list, but it's also a highly medicalised list. It's an accurate list of symptoms, yet it doesn't give any idea what progesterone intolerance is actually like. I believe it's useful for medical professionals to understand the severity, so that side-effects are not dismissed; I believe that it's helpful for women to read experiences that reflect their own; and I believe that my writing can explain what it's like. Over the next few posts, then, I will write about the worst symptoms in turn, from my own experience: paranoia and panic attacks; loss of enjoyment; depression and weeping fits. For now, the best I can describe the worst of it is as - bereft.

Bereft My words aren’t spells, my virtue is no guard. The music’s lies and hopes die at their birth. The truth is barren; fantasies are ash. Through hours like this, I age and trudge the earth. I put my lips to sweetness, but it’s gone. I put my lips to wine, but what’s the point. I put the wine away, the kettle on And put away the pain no hopes anoint. I sleep so I can wake for work, I wake – I work so I can live, and so I live. I live, but if I feel it’s just an ache, And even dreams have nothing more to give. The music still has meaning, but it’s gone To worlds where we might meet, and you might care. And I’m too wise to say I can’t go on While I can sleep and work, though nothing’s there. — Megan Kerr

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SOURCES
¹ Panay, Nicolas and Studd, John. (1997) "Progestogen intolerance and compliance with hormone replacement therapy in menopausal women" in Human Reproduction Update, Vol. 3, No. 2 pp.159–171.
² Studd, John (2010) (DSc, MD, FRCOG) www.studd.co.uk
³ Cullberg, J. (1972) "Mood changes and menstrual symptoms with different gestagen/estrogen combinations. A double blind comparison with placebo" in Acta Psychiatr. Scand. Suppl., 236, 1–46.
⁴ Studd, John (2005) "Women, hormones, and depression" in The Management of the Menopause (3rd edition) Studd, John (ed.) New York, London: The Parthenon Publishing Group. (146-161)

⁵ Diagnostic and Statistical Manual of Mental Disorders, 4th ed. Washington: American Psychiatric Association, 1994.

Alone in the library

dyschezia. n. /dIs-ˈki:-zi:-ə/ A sharp pain, often described as a sword up the spine or bottom, associated with bowel movements and also characteristic of endometriosis.

Alone in the library: a story

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I fight this.

I woke this morning, on the second day of my period, before my alarm, trying to roll around in pain but pinned by it like a butterfly impaled. I had a dream-vision of a capital A in my belly, all sharp serifs jutting into me. As the alarm went, the A dissolved back into its dream; the pain remained. I couldn't get out of bed. I couldn't stand, never mind shower. I took ibuprofen. If I'd been more awake, I'd have taken 2 paracetamol, less effective but faster - I should've taken paracetamol - but now I couldn't, too much on an empty stomach is bad - I lay for half an hour, processing the pain as it rolled and stabbed, waiting to get up and shower and munch oatcakes and hurtle out the house.

I could've phoned in ill, at that point. Any other class, and I would've - but they're my exam class - I adore them - I wanted to teach them the lesson I'd planned for them. But not so selfless, in the end: grim determination - come hell or high water, I will teach. I will go to my job; I will be normal.

It eased, enough. I showered, rushed, dressed, munched oatcakes, hurtled out the house and into the car (I prefer to walk, but hey, I've given that up some time back, can't walk and work). Swooping through Oxford, sun fluttering on lime trees and birches, the pain's still rolling - check the time: 8:30, an hour and a half since the ibuprofen. I shouldn't be feeling this. This is painkiller-peak-time. Never mind, at 9:30 I can layer on some paracetamol. Blast the car with the overture to Tannhauser, somewhere in its Teutonic grandeur the pain finds voice and makes sense.

Into the school, grand old building, once-upon-a-time a house, and in summer the teachers lie on the lawn gazing up at its welcoming windows, swapping plans for if it were their house and tales of its hauntings. I'm teaching landscapes - I want pictures - the "library", a tranquil stately room at the front of the building has coffee-table books with landscapes and mountainscapes and desertscapes. I remind myself to teach the suffix "-scapes". I remind myself the books are heavy - if I want more than 2 or 3, I should ask a student's help. I could carry them myself, but that would be an abuse of painkillers. Ow... Step into the library's blue and wood quiet, check the clock; 8:45 - more painkillers in 45 minutes, enough time to grab the books then a coffee -

I bend down, knowing I shouldn't, but the books are on the bottom shelf.

It hits.

This isn't the inflammation pain, worsened by bending down, jolting, carrying heavy things, standing in a shower, crouching over to shave legs, striding too hard, the kind I keep down with no wheat and graceful gliding and an appearance of princess-laziness. This is the other kind.

It's like a spear up my spine, from the coxix. It traps me half crouched over. It's paralysing. This one knocks all thought, breath, movement. One would scream, if one could move that much. I know this pain like heroes know swords: with respect. I wait it out, wild-eyed and frozen. It lasts 2, maybe 3 seconds usually. But this time, it doesn't go. Cold steel stabs through my bowels, right up my spine - pauses, twists, withdraws - and comes again, from another angle. And another.

At some point I sink to the ground, hands and knees, swaying like a woman giving labour, except you can't open up to this pain, you just have to submit to it, meekly. It goes on. I measure this pain in seconds, usually; it makes hours of seconds. This is turning to minutes. Days. It comes from another angle. Tears are rolling down my face, I want to scream but I'm only making a breathless strangled sound. The doors to the library are thick. I claw myself back up to the table; the clock says 8:50. I desperately need to tell the office I can't teach, I can't be in my class standing upright in ten minutes' time, I can't stand upright at all - and so I can't move to those heavy doors, or be heard through them. I can't actually even crawl over to them.  The bay windows give on to the drive way, and I stare crazily for students, hopefully mine, whose attention I can grab - I need someone to tell the office to arrange cover. I desperately need someone to help me. I don't want anyone to see me in this state.

It continues. I make attempts, in my mind, to make for the doors, but fresh waves of pain are ahead of me, even before I can contemplate how to get something so heavy open again. 8:55. Class is in five minutes. My cheeks are wet. The next wave of pain sweeps across me and recedes. Another one doesn't come. I stand up, shaking, and wipe my face. No-one's walked past the window, no-one's come into the library; no-one has seen. And I don't actually want anyone to know. I walk upstairs, gliding, wondering if my cheeks glisten; I pour a big mug of coffee from a nice full pot; I go outside, to the teacher's bench in the many-leafed garden and sit in flickering sunlight for a few minutes, idly chatting. It's time, I go up to teach, I teach.

Later I say I can't do an extra afternoon class. I apologise and say I'm not well enough. They understand that I'm not well, but could I not just push myself a bit?

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Three months after writing this, I had to quit my teaching job - two hours a day was no longer manageable. On the bright side, the oncoming train is a slow-moving and very familiar one, and I'd been stepping up my freelance work for several months, knowing I'd soon be back on my sofa and needed to make a living from my laptop - and on the very bright side, I'm able to do that. A month after quitting, I had a new Mirena coil put in. Five months down the line, I'm strong enough to cook, clean my house, go walking, and it's paradise. I'll have it out again in four months' time, before the progesterone intolerance drives me over the edge of sanity. Swings and roundabouts.

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BMJ on endo: a patient's rapid response

On 26 June this year, the British Medical Journal ran an article on endometriosis as part of their Easily missed series: a review of what it is, why it's missed, and how to diagnose it. Full credit to the authors, Samuel Engemise, Cerys Gordon, and Justin C Konje, for raising awareness in the medical profession. The full article is here, together with 'A Patient's Journey', Julie Harvey's story of her experiences.

Lucy Palmer wrote to the BMJ to contribute her own experiences and question what they said about painkillers. She wanted to write, she said, because, "I know how it feels to fear your own body and to, at times, know there is nothing you can do to stop or at least ease the pain. When you've been given all the medication you're allowed, and it still isn't enough, something has to change. The changes I feel are necessary aren't radical and they aren't unachievable; they're merely what needs to happen." She runs a blog on art, depression, and endometriosis, Pop goes the feasible, as well as a Facebook group, Endo Unite, to encourage people to raise awareness. 

This is her experience, reproduced from the BMJ Rapid Response page:

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Dear Samuel Engemise, Cerys Gordon, and Justin C Konje,

I thank each of you so very much for your fascinating article about endometriosis being missed. To read those words from medical professionals gave me back some faith that was lost; some doctors do understand that endometriosis is a remarkably troubling, baffling and highly distressing disease to have to live with. From the age of 12, I have had to suffer agonising periods, fatigue, and depression. These symptoms have worsened in the 16 years since my periods started and I now have chronic pelvic pain and sharp, breathtakingly sharp pains around my right ovary, as well as depression lingering in the background.

I was diagnosed with extensive endometriosis in March 2010, and am now (end of September 2010) at the end of 6 months' treatment of GnRH agonists and HRT. I have felt terrible on too many of these days, with severe nausea, migraines, and oft-unbearable pelvic and ovary pain, along with the severe pain of post-operative recovery.

From a patient's perspective, dealing with almost constant pain, seeking help for it, and being told it is nothing to do with one's reproductive system but, perhaps, a bowel or problem is insulting, to say the least. Several women have expressed this opinion to me. We know our bodies, and we know the pain we feel. I have forgotten the amount of times I have been to see a doctor, of whatever level, about my "bad periods" and been stopped mid-sentence while trying to explain how and what I feel, or the times I have felt ignored and belittled by those meant to help me. This is not true for every doctor, I know; my GP is excellent and is the only one who believed in me, and that my pain was not, perhaps, psychological or a mere hormone imbalance.

The Royal College of Obstetricians and Gynaecologists states in its publication "The Investigation and Management of Endometriosis", released in October 2006:

"5.3 What is the 'gold standard' diagnostic test? For a definitive diagnosis of endometriosis, visual inspection of the pelvis at laparoscopy is the gold standard investigation, unless disease is visible in the posterior vaginal fornix or elsewhere."

It also states, "A normal scan does not rule out endometriosis." Indeed, not seeing something on an ultrasound does not mean it is not there. Again, several women and I have had countless ultrasound scans and been told all is normal. Perhaps it was not "normal", but simply unable to detect the endometriosis? For example, just 3 months before my laparoscopy, my pelvic cavity was apparently "normal" after an ultrasound scan, and yet on the day of my operation, endometriosis was found on the posterior uterine wall, and pelvic side wall, along with endometriomas in both ovaries. I don't believe that kind of damage occurs after 3 months.

In my opinion, using these methods to rule out endometriosis after it is simply not detected is a way of ensuring thousands of women and girls suffer perhaps not just pain, but untold internal damage, including depression. As said by Geraldine O'Sullivan-Hogan in reply to the article, "A Patient's Journey: Endometriosis" published 10th June 2010 in the British Medical Journal, some doctors are "confusing late diagnosis with late onset". That is certainly the way for so many women I have spoken to about their experiences, as well as me.

From first seeking help with my periods until a diagnosis that was (in my opinion) finally true and very, very late, there were 10 years. TEN long, painful years. I think endometriosis is underestimated and belittled in so many ways. It is assumed sometimes to be only "there" with periods, that the pain is actually manageable, or that a laparoscopy will cure endometriosis or that we want attention. We just want to be well. That is all.

According to Sobia Ashraf Sand - a doctor, "any pain killer will do", which was also in response to "A Patient's Journey: Endometriosis". This is a very unhelpful comment to make, I think. There are many painkillers that I, for example, can not take, as they clash with other medication I am on. There are also several I have tried which do not work any more, such is the tolerance built up in my system over years of taking them. Again, this is not unique to me.

I seek to ensure changes occur regarding diagnoses of endometriosis; I believe doctors and other medical staff ought to be more aware (if not already) of what it is, and that they ought to realise how gravely it can affect women, and girls, and their families.

So any people do not know what endometriosis is, or have even heard the word "endometriosis". For a health condition which affects roughly 2 million people in the United Kingdom, I think this is a damning reflection on the unwillingness of some people to publicise and talk about ovaries, vaginas, wombs, tubes, cervices and other women's bits and pieces. How are women and girls to know anything is wrong if they don't know that they ought to feel different, to feel "normal"? If they don't know what endometriosis is, why would they visit a related website? Information is not there, often, to help them find out there might be something that can be done to help them. This is one of the reasons I think all hospitals, clinics and GPs' surgeries should provide the excellent leaflets and posters from Endometriosis UK.

Endometriosis must not continue to be the "hidden" or "missed" disease it has been for so long.

Yours painfully,

Lucy Palmer

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Letter © Lucy Palmer 2010 and reproduced here by the author's permission