endo writer

The beautiful calm of intense pain

2011-07-13T15:27:00.000-07:00

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.)

Progesterone intolerance spotlight: depression

2011-04-04T15:03:00.000-07:00

• 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.

Progesterone intolerance: Loss of enjoyment

2011-02-26T12:57:00.000-08:00

Progesterone intolerance spotlight: paranoia

2011-02-04T13:15:00.000-08:00

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

2011-01-23T14:20:00.000-08:00

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:

Thishormone can produce depression, tiredness, loss of libido, irritability, breastdiscomfort, and in fact all the symptoms of PMS, particularly in women with a historyof 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

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

2010-11-25T09:00:00.000-08:00

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

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?

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.

BMJ on endo: a patient's rapid response

2010-10-01T00:00:00.000-07:00

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:

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

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

My worst, I've learnt ~ quotes from women with endo

2010-09-08T12:00:00.000-07:00

If you want to know what endo is like, read this. If you want to know you're not alone with it, read this.

For the Filament article on endometriosis, I emailed endometriosis groups to get feedback from women on their own experiences. I asked what the worst aspect for them was and one thing they'd learnt that they could pass on to other women. The responses flooded in; reading them is devastating, sometimes uplifting, and very eye-opening. As they couldn't all be included in the article, and they are incredibly valuable information, I asked for permission to post them here as well. Here are 63 of the responses, edited down for length & proofread but otherwise unchanged.

my worst: Being surprised by the pain every month.
i’ve learnt: I am responsible for my own health.
— Anon

my worst: Being treated like I was making it all up
i’ve learnt: Don't get fobbed off: be assertive and persistent with the doctors
— Jenny 29 Hull

my worst: Infertility
i’ve learnt: Life goes on.
— Anon, 50, Cornwall

my worst: Having to give up a fulfilling career.
i’ve learnt: Sometimes having to give up the thing that you think defines you, enables you to discover new (and interesting) things about yourself.
— Anon

my worst: The lack of understanding: ‘Endo what?’
i’ve learnt: Things do get better!
— Holly Wadsworth-Hill, 27, Essex

my worst: The unpredictability
i’ve learnt: Yoga and Pilates help
— Rachel, 27, Hove

my worst: The pain, exhaustion and massive emotional impact
i’ve learnt: I'm not alone
— Jo Greenbank, 33, St Albans

my worst: Not always having the energy to be a young and active mum for my children
i’ve learnt: Knowledge really is power
— Michelle Middleton, 32, Silsden

my worst: Explaining to my partner that sex is too painful
i’ve learnt: Don’t believe what your GP tells you - do your own research
— Shelly, 34, Oxford

my worst: The pain – down on my hands and knees.
i’ve learnt: Don’t suffer in silence.
— Jayne, 38, Eaglescliffe, Stockton-on-Tees

my worst: Pain after I orgasm
i’ve learnt: Maca alleviated my symptoms
— Meredith, 37, London

my worst: Chronic-fatigue-like symptoms.
i’ve learnt: Women should know this is not something you should just have to suffer with.
— Eleanor Bland, 23, Lincoln

my worst: Being made to feel I was exaggerating my symptoms.
i’ve learnt: The contraceptive pill helps
— Kelly Davidson, 34, Cannock

my worst: Fertility, pain, constant hormonal roller coaster
i’ve learnt: Take one day at a time
— Lucy Harvey, 23, Burton on Trent

my worst: The unpredictability of when & how bad the pain will be
i’ve learnt: To count my blessings - other endo sufferers can feel worse
— Jami, 33, London

my worst: My employer being unsympathetic
i’ve learnt: Not from my doctor... how much impact diet has
— Luci, 26, Leeds

my worst: Being told I couldn't have children
i’ve learnt: Life is full of possibilities - I had a beautiful baby boy 18 months later.
— Delphi Ellis, 35, Milton Keynes

my worst: Pain. And not being believed.
i’ve learnt: If YOU KNOW you're not well, NEVER give up.
— Lucy Palmer, 28, Hadleigh, Essex

my worst: The fear of infertility and the “ticking clock” that I now have
i’ve learnt: Let family, friends and colleagues know when you’ll have a bad week
— Rebecca Simpson, 31, Thame in Oxfordshire

my worst: Pain and the tiredness from dealing with pain
i’ve learnt: Speaking to a counsellor really does help
— Anon

my worst: The pain and emotional distress
i’ve learnt: To have a positive attitude and not feel sorry for myself
— Rachel, 26, Manchester

my worst: Heavy bleeding and bloatedness made it difficult to plan social outings - I never knew how bad I was going to be.
i’ve learnt: To follow a healthy balanced diet
— Anon

my worst: Lack of understanding from friends & family
i’ve learnt: To let go of the life you wanted (fertility) and be happy with your altered future
— Sarah Murtagh, 39, Tring, Herts

my worst: The heartache – seeing people who don’t even want babies get pregnant, and you can’t get pregnant yourself.
i’ve learnt: A great doctor makes it more bearable and gives you hope, in a place where you think hope is non-existent.
— Abbey, West Yorkshire

my worst: Not being diagnosed for 4 years and made to believe I was making it up
i’ve learnt: How important it is to listen to your own body and take action.
— Dawn Hartley,28, Nottingham

my worst: Pain, bloating and emotions
i’ve learnt: Laser surgery does not last; a no-wheat diet helps
— Claire Smith, 42, Burnham, Bucks

my worst: Fatigue, pain, rollercoaster emotions.
i’ve learnt: Nutrition and cognitive behaviour therapy have helped me greatly.
— Olive, 31, Leighton Buzzard.

my worst: Laughter. I once laughed a lot, but fear of pain has made me weary.
i’ve learnt: Never let pain become you.
— Ginny, 28, Maidenhead

my worst: The dismissive nature of many health professionals – especially as I’m a nurse myself
i’ve learnt: To change my diet & use some conventional medications.
— Anon, 36

my worst: Not knowing which is worse, physical pain or mental torment
i’ve learnt: Motherhood has never seemed so precious or elusive
— Charlotte Ball, 26, Tamworth

my worst: Opening your eyes in the morning and waiting because the first 30 seconds will tell you what the rest of your day will be like.
i’ve learnt: Be positive! Lots of surgery scars and no children, but it is not going to kill me.
— Jennie, Grays

my worst: Feeling like no-one understands what I go through, because awareness is so limited
i’ve learnt: Be persistent in trying to get a diagnosis when you know something isn’t right
— Anon, 30, Hinckley. Leicestershire

my worst: Trying to get reasonable adjustments in my job - every day's a fight.
i’ve learnt: Refuse to leave the doctor's surgery until they refer you to a gynaecologist
— Linda, Norwich

my worst: Unrelenting pain, hospital visits and the impact that had on my children.
i’ve learnt: Stay positive - there is light at the end of the tunnel!
— Beverley Glynn, 46, Sheffield.

my worst: Infertility
i’ve learnt: Listen to your body
— Mrs Steffan Squire, 41, Andover, Hampshire

my worst: Delay in diagnosis
i’ve learnt: If controlled with medication, you can lead a normal life
— Lisa Anderson, 35, Southsea

my worst: A pain I can barely describe that takes my breath away
i’ve learnt: Endo doesn't control me, I decide my life
— Cara T, 23, Leeds

my worst: The lack of understanding from others, including medical professionals
i’ve learnt: what's important to me in life (because something has to give)
— Nicola McAteer, 36, Leeds

my worst: 'Trying to go about daily life with a smile on my face' when I'm sad inside and in pain.
i’ve learnt: I couldn't have got through the last 8 years of suffering with endometriosis if it wasn't for my wonderful husband.
— Mrs Sandie Savage, 42, Selsey, West Sussex

my worst: The unknown - never knowing if it will get better or worse
i’ve learnt: To never give up and never doubt myself
— Sarai, 25, Sheffield

my worst: Pain, constant in varying degrees
i’ve learnt: Take charge of your own health and wellbeing
— Kathleen, 33, Donegal, Ireland

my worst: The words ' but you don’t look ill ' when you’re in constant pain
i’ve learnt: To always push your gynae consultant and GP to get the help you need
— Anon

my worst: Having high career aspirations and not being able to achieve them.
i’ve learnt: Give yourself space and time to grieve for what you have lost through endometriosis.
— Fiona, 34, London

my worst: Pain, all the time
i’ve learnt: Give into the pain, when it is maddeningly bad
— Joanna S

my worst: Knowing something was wrong but being undiagnosed for 20 years.
i’ve learnt: Speak to different GPs - one of them will know what's going on
— Kerry Booker, 33, Chandlers Ford, Hampshire

my worst: Society's lack of understanding and knowledge of this crippling disease
i’ve learnt: Never give up. I am now 7 months pregnant
— Siobhan O'Shea, 36, Sutton Coldfield

my worst: Unbelievable pain
i’ve learnt: Keep pushing for answers from GP, gynaecologist, etc – don’t give up
— Louise, 22, Fife

my worst: It takes on average 8 years to diagnose the illness, during which time you tend to try everything suggested and doubt your sanity.
i’ve learnt: If you have an instinct that there is something wrong, do not give up
— Esther, 35 Essex

my worst: Cyclical sciatica (back pain) and intense pain every month.
i’ve learnt: Hysterectomy is not a guaranteed cure
— Jackie Thomson, 42, Windsor

my worst: The effect on my fertility
i’ve learnt: Be open with those around you and join support groups
— Tracy, Suffolk

my worst: The horrific pain and disabling effect on normal life
i’ve learnt: To know my body and be in tune with myself
— Jo Gifford, 33, St Ives, Cambridgeshire.

my worst: Not being able to live a 'normal' life
i’ve learnt: You are not suffering alone
— Beki, 26, Coventry

my worst: 24-hour, 7-day- a-week, 365-days-a-year crippling pain
i’ve learnt: Try a TENS machine & a wheat bag with lavender oil - I'm on strong morphine and those alternatives really do help me. Every woman’s endo is different.
— Emma, 35, Kent.

my worst: Being infertile, horrendous debilitating pain, not feeling like a women
i’ve learnt: Devils Claw, Rose Weed & meditation are excellent for pain management
— Joanne Williams, 36, Huercal-Overa, Spain

my worst: The agonising pain, despite being on the pill
i’ve learnt: It's a common disease that should be treated & investigated
— Claire Reid, 29, London

my worst: Not knowing if it will affect me conceiving
i’ve learnt: Never give up hope and never let it defeat you!
— Lauren Roberts, 23, Newbury Park, Ilford, Essex

my worst: The pain I suffer every day and the lowered fertility
i’ve learnt: You know your body better than anyone else
— Jayne Skudder, 28, Southend on sea, Essex

my worst: The way it can consume your entire life
i’ve learnt: Bikram Yoga helps me stay in the moment and release the frustrations and fear
— Frances Benjamin, 26, Manchester

my worst: Being in such pain that I wanted to slit my wrists but being in so much pain that I couldn’t
i’ve learnt: Self-hypnosis, to manage the pain
— Joanne Burrell, 36, Portsmouth.

my worst: Many needless years of suffering
i’ve learnt: I will never trust a GP – only a specialist.
— Anon

my worst: Seeming infertility and having to start IVF this Spring
i’ve learnt: Trust my instincts and listen to my body
— Colette Todd, 32, Stourport-on-Severn

my worst: The 'hibernation' you put yourself into.
i’ve learnt: To look after myself, my diet and my health
— Elizabeth Jones, 40, Rossett Wrexham, North Wales

Thanks to the women who contributed their answers, and to Endometriosis-UK and the Oxford Endometriosis Support Group for making the survey possible. All quotes are used on this blog by permission and the copyright remains with the original author.
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New article in Filament

2010-08-28T12:00:00.000-07:00

Filament magazine has just published my article on endometriosis in their latest issue, September 2010. It gives the low-down on what endometriosis is, what it's like, how to get diagnosed, the bad doctors and the great doctors, the treatment options, and – most excitingly, for me – a selection of women's experiences with endometriosis.

As well as raising awareness, I wanted the article to help women find out if they have endometriosis and be solid enough to take to their doctor. That means accurate, comprehensive, and well-cited information. Filament's the perfect magazine for this. Subtitled "the thinking woman's crumpet", it's an international magazine based in the UK, aimed at women, and mixes serious articles with stunning pictures of men. (The editor, Suraya Singh, argues strongly for the female gaze and that magazines for women shouldn't be crammed with images of women.)

But I also know that our current information on endo isn't the whole picture, and one of the missing pieces is women's experiences of it. I passionately want to collect that information and make it available. I also believe we can't do quantitiative research (tick-boxes) without more qualitative research (open questions). We need to know the categories before we create tick-boxes. Thanks to Endometriosis-UK and the Oxford Endometriosis Support Group, I was able to survey a huge group of women: what was the worst aspect for them, and what had they learnt which could help other women? Over 80 women responded: their answers were striking, brave, and moving.

Even with a generous 5-page spread, we couldn't print all of them. The full list of responses will be published on this blog next week. (If you want a reminder, you can subscribe via email on the right-hand bar or below this post.) In the meantime, you can...

• preview the article in Filament
• order a copy of the magazine

• share this post and spread awareness of endo

This is NOT in my head

2010-07-18T00:00:00.000-07:00

Summary

Endometriosis is not hard to diagnose, but often missed. Why? Women are twice as likely as men to have their pain diagnosed as psychogenic (in their head), their illnesses are rated as less serious, they’re less likely to be sent for tests, and up to 50% are misdiagnosed with depression. The gender bias in medicine starts right in the lab, meaning women’s illnesses are little researched, making accurate diagnoses and good treatments more difficult. The psychological test scores for psychogenic pain and chronic pain are identical – so there’s no reason to choose psychogenic pain, except preference. Both doctors and women with endo need to be aware of this baggage, to avoid it, and of the valid emotional toll of endometriosis.

Endo is not hard to diagnose

The British Medical Journal has just put endometriosis on their front cover: “Endometriosis: How to spot a condition that is easily missed” (26 June 2010). But why is it easily missed?

Endometriosis isn’t actually hard to diagnose. For all the elaborate table of symptoms, those symptoms are predominantly cyclical – a dead giveaway. It’s incredibly common – 1 in 10 women have it, so you’re hardly dealing with some arcane rarity. (Vigano, 2004) And you don’t have to wait for a laparoscopy – most endo symptoms respond to progesterone treatment (the oral pill or Mirena coil, both easily available) within 3-6 months. That’s a bit shorter than the average diagnosis delay of 8 years. (Ballard, 2006.) So why’s it missed?

In their research on diagnosis delays, Ballard et al found five main reasons: at the patient’s level, normalising symptoms and embarrassment; at the medical level, doctors normalising symptoms, symptoms being suppressed sometimes by hormones, and diagnostic investigations that don’t actually diagnose endo (for example, ultrasounds). For patients, the biggest issue was doctors normalising their symptoms:

Indeed, when asked to identify the least helpful aspects of their treatment of pelvic pain, the majority of women cited their perception of doctors’ disbelief surrounding the genuineness or severity of their symptoms. Many recalled being told by the family doctor that because their pains were “just normal period pains” this was something they had to cope with. They reported being advised to make lifestyle changes, such as increasing exercise levels, and being prescribed nonsteroidal antiinflammatory medication and analgesia. The impact of this advice, when considered alongside the women’s lack of knowledge about “normal period pain,” led many to question their experiences of symptoms, with the majority stating that at some point they had felt that they were “going mad” or that the “pain was in my head”.

These women’s “perception of doctors’ disbelief” might not be so wrong. Women are routinely disbelieved about their pain – and the stats are scandalous.

Women are twice as likely to be diagnosed with psychogenic pain

Psychogenic pain has a mental cause,
not a physical cause; somatic pain has a physical cause.

Bernstein and Kane’s 1981 research took 8 simulated cases and varied the complaint, the gender, and whether or not the patient mentioned a personal problem. 253 primary-care doctors were given 2 different cases each to diagnose. The results were striking.

Of the phsycians, 25 per cent believed women were likely to make excessive demands on physicians’ time, although only 14 per cent believed this likely of men (p<0.01); women’s complaints were judged more likely to be influenced by emotional factors (65 per cent versus 51 per cent in men, p<0.01), and were identified as psychosomatic more frequently than men’s (21 per cent versus 9 per cent).

In other words, as a woman, you’re almost twice as likely to be thought a time-waster and more than twice as likely to be told the problem’s in your head – with no difference in the medical information that the doctor’s given. Keeping mum about your personal life won’t help, either:

Although non-expressive women [those who don’t mention a personal problem] were more likely to receive a psychosomatic diagnosis than non-expressive men (14 per cent versus 2 per cent, p<0.01), expressive men and women were almost equally likely to receive psychosomatic diagnoses.

If you take a man and a woman with an identical complaint and neither mention personal problems, the woman’s nine times more likely to be told it’s in her head. “The effects of these differences on quality of care remain to be determined.” – well, quite. And all this was with complaints that both genders could have – not “women’s troubles”. Illness in women is routinely rated as less serious than illness in men.

Women are rated less seriously ill

In 1992, eleven years later, Wilcox ran a similar study on the effects of patient age, gender, and depression, on 88 advanced medical students, this time on audiotape. The “patients” all reported the exact same symptoms. The three variations were their age (32 or 67), their gender, and whether they also presented symptoms of depression. The medical students then filled in questionnaires about these “patients”. The researchers expected an age bias, which didn’t appear – but again, the results split dramatically over gender:

Females were rated less seriously ill, less likely to require laboratory tests, and more likely to receive medication than males. Among depressed patients, counseling and reassurance were more likely for females, and a nonpsychiatric consult was more likely for males.

30-50% of women are misdiagnosed with depression

In 1981, the research showed that women were twice as likely to be diagnosed with psychogenic pain – ie. nothing physically wrong, but some psychological cause. Seventeen years later, little seems to have changed. Floyd’s 1998 paper in Social Science and Medicine draws on a range of research and suggests that up to 50% of women are misdiagnosed with depression.

This difficulty, it says, “is considerably enhanced when women have physical diseases characterized by symptoms that resemble a major depressive disorder.” For example, changes in sleep patterns, appetite, energy, and interest in sex are all symptoms of depression – but are also side-effects most women with endometriosis would recognise. This is compounded by treatment: “In addition, medical treatments may induce symptoms that are misdiagnosed as affective distress.” Most of the treatments for endometriosis are hormonal and almost all include, in their list of side-effects, depression, mood swings, and weeping fits.

So the symptoms may overlap with depression and the treatment may make it look like depression, but why especially so for women? “Multiple causes contribute to an enhanced likelihood of misdiagnoses in women, including physicians' androcentrically orientated medical training and the two-to-one female-to-male ratio of depression treatment.” This two-to-one ratio is often seen as proof that women are more prone to psychological issues. That’s not true: “if all types of mental disorders are collapsed into one broad category” writes Floyd, “men and women display similar rates.” And finally, “medical misdiagnoses of physical conditions may induce depressive reactions in female patients.” Chronic pain and being told it’s all in your head is, unsurprisingly, an unhappy combination.

Gender bias in medicine

This “androcentrically oriented medical training” – ie. oriented towards men – is still rife, according to Hamberg’s 2008 paper. According to Nature (18 March 2010), it runs through every stage of the medical process, right from the labs. Females, whether mice or women, are simply not studied.

The lack of female participation, which extends from basic research in animals to clinical trials in humans, has obvious consequences for women, not least a paucity of effective drug treatments for diseases that predominantly affect them.

It’s often assumed that females are “just too complicated”, but when that’s examined, it doesn’t hold true: “in common tests used to measure responses to pain, data from female mice are no more variable than those from males”. But the variability that does exist is essential; it simply cannot be brushed under the carpet as “inconvenient”. The importance of this can’t be underestimated: some treatments ‘have severe side effects in women that are not seen in men’ and it leads to ‘a paucity of effective drug treatments for diseases that predominantly affect [women]’ – or only affect women, such as endometriosis.

As an exceptionally common and extremely debilitating condition, endometriosis has been barely researched and is still little known, even among medical professionals. Discredited myths stay in circulation (like the “have a baby and it’ll get better” nonsense), few new treatments are developed, and physically ill women are told they’re probably just depressed.

Psychogenic pain and chronic pain look identical

So how would a doctor tell if it’s chronic pain or psychogenic pain? The 1981 collection of papers, Chronic Pelvic Pain in Women, addresses Chronic Pelvic Pain Without Pathology (CPPWOP) – ie. without a known cause – and discusses how to tell if this is psychogenic.

Its description of psychogenic indicators and psychogenic patients are strikingly hostile. Even more startling, the irritated descriptions correspond one-for-one with chronic pain factors, as outlined by Steege (1998). As the latter was writing in 1998 and Chronic Pelvic Pain in Women was published in 1981, its authors could have been forgiven for not knowing this – but in the opening pages, Renaer quotes Merksey:

If it is assumed by definition that the group with chronic pain not due to organic causes is neurotic – and this is confirmed by the psychological test scores – then the similar scores of the patients with organic lesions suggest that they are indistinguishable from the psychiatric group in this respect. (15)

In other words, the test scores of people with psychogenic pain are identical to the test scores of people with chronic pain. The test scores tell you nothing. There is no reason to choose a diagnosis of psychogenic pain except bias or the insane belief that medical knowledge is somehow complete. Leave aside my rage that this knowledge didn’t find its way into the rest of the book. This has more important implications.

First, psychological test scores are not a reliable indicator for psychogenic pain: they don’t distinguish between psychogenic and chronic pain. Second, chronic pain has therefore not been “ruled out” until all possible causes of chronic pain have been investigated. And as we’ve seen, women are less likely to be sent for medical tests. Even then, medical knowledge is incomplete – so what is shown is that no known cause of chronic pain has been identified. It does not necessarily follow that it is psychogenic pain. Third, it demonstrates the massive emotional toll of being in chronic pain – that your test scores would show up as if you were neurotic, and yet this is only the effect of unremitting pain. The affect, in fact, of unremitting pain.

Implications

• Women are much more likely to be diagnosed with psychogenic pain or depression, so both doctors and women should be suspicious of these diagnoses.

• Women are more likely to have their illness treated lightly and less likely to be sent for tests, so both doctors and women should push for thorough investigations.

• No doctor and no woman should accept a diagnosis of “psychogenic pain” until every physical cause has been ruled out.

• Even then, a psychogenic diagnosis has to remain provisional. Little research is done into diseases that affect only or predominantly women, so medical knowledge is more than usually incomplete here.

• Chronic pain takes a massive psychological toll. Getting professional help to deal with that does not imply your pain is in your head.

• Panic, stress, and anxiety are known to increase the amount of pain someone feels – managing these is an effective form of pain management. Managing these does not imply that your pain is down to your being stressed or anxious!

• Some anti-depressants also act as pain relief. When a doctor prescribes anti-depressants as pain relief, this can be misinterpreted or not properly explained. Doctors – explain; patients – ask.

• Most endometriosis treatments are hormonal and the side-effects are typically hormonal. They can include depression, paranoia, irritability, low self-worth, loss of enjoyment, weeping fits, and suicidal thoughts. It is very difficult, but nonetheless important, to distinguish hormonal side-effects from your own feelings, and to not blame the pain on either. If you usually have severe PMT, you might have more experience of distinguishing hormones from your own emotions. Try to keep records so you can see the cycle, ask good friends to help you work out the difference, and remember what you’re like when you’re not on treatment.

And remember: it’s endo. It’s NOT in your head.

Bibliography

Ballard, Karen; Lowton, Karen; Wright, Jeremy. “What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis” in Fertility and Sterility. 86:5, November 2006.

Bernstein, Barbara; Kane, Robert. “Physicians' Attitudes Toward Female Patients” in Medical Care. 19(6):600-608, June 1981.

Engemise, Samuel; Gordon, Cerys; Konje, Justin C. “Endometriosis: How to spot a condition that is easily missed” in British Medical Journal. 26 June 2010: 1414–1415. (BMJ 2010;340:c2168)

Floyd, Bonnie J. “Problems in accurate medical diagnosis of depression in female patients” in Social Science and Medicine. 44:3, 1997: pp. 403–412. (PMID: 9004374)

Hamberg, Katarina. “Gender bias in medicine” in Women's Health. 4:3, May 2008: pp 237–243.

Hayden, Erika Check. “Sex bias blights drug studies” in Nature. 464, 18 March 2010: pp 332–333.

Renaer, M. (Ed.) Chronic Pelvic Pain in Women. Berlin, Heidelberg, New York: Springer-Verlag. 1981.

Steege J.F., Metzeter D.A., Levy B.S. Chronic Pelvic Pain: An Integrated Approach. Philadelphia, London, Toronto, Montreal, Sydney, Tokyo: W.B. Saunders Company. 1998.

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.

Wilcox, Victoria L. “Effects of Patients' Age, Gender, and Depression on Medical Students' Beliefs, Attitudes, Intentions, and Behavior” in Journal of Applied Social Psychology, 22:14, July 1992: 1093–1110

Pain management ~ "The rules"

2010-05-24T12:00:00.000-07:00

Progesterone works very well on treating endometriosis, for me - but because I'm progesterone-intolerant, I can't use it for too long (usually 9 months max). It's a delicate balance between physical pain and emotional pain, and each kind is hard to remember, especially when the other is bad. I wrote this list to remind myself of the physical pain. But as you'll see, it's not exactly pain.
"Most of the time, I'm not in pain, provided I follow the rules. These are the rules...

• don't bend down to pick anything up
• don't lift anything heavier than a kettle (be careful with a full kettle)
• don't sit unsupported - in a dining-room chair, use a cushion; on a kitchen stool, lean against the wall & on the table and don't stay there too long
• don't lean forward
• step on the ground very carefully
• walk nowhere - not even to the corner shop
• drive, but don't lean forward
• avoid the bus except for special occasions: it jolts
• don't clean the house - no vacuuming, no dusting; too much bending and moving about
• only tidy away things at waist height
• don't have sex
• don't play guitar (you have to crunch over it)
• wear slip-on shoes only
• put on and take off tights with great care: it hurts
• don't shake potatoes in a pot to fluff them for roasting
• don't push, pull, or lift anything - don't even push a thumb-tack into a board
• don't crush pepper in a mortar and pestle: it hurts your stomach
• don't take the coach
• don't take the tube
• avoid taxis: they jolt
• park as close to the entrance as possible (without a disabled sticker)
• don't go grocery shopping - or if you must, don't reach down to the bottom shelves
• don't lie on your stomach
• don't lie on your side
• don't scrub the bath
• don't wear anything with a waistband, a fitted waist, or even close-fitting
• don't let anyone touch your stomach
• don't let anyone jolt you
• don't carry heavy bags - and a shopping bag is heavy
• the moment you need to pee, go - or the pain increases until you'll be crawling to the loo
• don't lift children or babies, or let them crawl over or near you - they kick
• don't stay standing for more than a minute, if you can help it
• try not to shave your legs too often - too much bending
• exert no strength - it all, ultimately, uses stomach muscles
• be careful how you hug people
• be careful how you dry yourself

If you break the rules, you will hurt. With careful planning, you can break 1-2 rules a day, and just hurt a bit.
If you take painkillers in order to break the rules, you will hurt twice as much afterwards. If you then take painkillers again, you will break other rules (like sitting up, stepping normally) and need more painkillers, and so on, until your kidneys hurt. The hurt is mostly a slow, hot burn, and pinching. Of course there's still some pain, but this keeps most of it at bay."
Even though the pain is currently returning, and I am starting to follow those rules again by instinct, I find that list hard to credit - but I have it in my handwriting and I remember trying to be as factual and exact as possible. GPs, consultants, and nurses have all expressed astonishment that I don't just take painkillers - but as I said, if I do, then I don't get feedback on what hurts, and the pain rapidly outstrips the standard painkillers - and then come the opiates, and then liquid morphine. My way works best for me.

And when that way becomes unbearable, and I can't face another month without the prospect of my long walks through parks and beneath trees, suddenly the prospect of emotional pain doesn't seem so bad - and so the pendulum swings.

Important note: this is not advice - I am not a doctor and everyone's experience of endometriosis is different. My own endometriosis is thin and widespread across my peritoneum, and not at all on any of my organs. This is a list I wrote for my own reference, which I am posting to share my personal experience of endometriosis and pain management.

the reasons for endo writer

2010-04-14T20:00:00.000-07:00

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 endometriosis.org and endometriosis.co.uk) - 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

Coming soon

2010-03-23T05:26:00.001-07:00

"Lorem ipsum... Neque porro quisquam est qui dolorem ipsum quia dolor sit amet, consectetur, adipisci velit..."
"Nor again... There is no one who loves pain itself, who seeks after it and wants to have it, simply because it is pain..."

Lorem ipsum dolor sit amet...