Endometriosis and what to do when you’re told pain is all in your head.

I have had a rough summer. It started with an infection, which lead to a bad side effect associated with an antibiotic, and now I have been diagnosed with endometriosis. The ups and downs (ups doesn’t really apply) have come not only from being in physical pain, but from suffering psychologically at the hands of medical professionals and those close to me.

Lets back track a bit: for years I have had bad periods. They didn’t show up that often, but when they did it would mean heavy bleeding for a few days, wanting to jump off a building for the week before it came, feeling like my boobs were being squeezed by a pair of rough hands (in an un pleasurable way) and of course bad cramps. But everyone has bad cramps, so its fine right?

Wrong. A lot of people do have bad cramps, and a lot of those people go to the doctor in search of help when after another excruciating period they think ‘This can’t be right’. So they go along to the doctors. If its the first time they are going, they will probably feel optimistic at the prospect of a doctor shedding (womb pun lolz) some light on the period pain they are experiencing and getting some help. If the doctor recognises that this woman might have a problem, they will give them some medication or, in the best case scenario, refer them to a specialist. I say in the best case scenario because normally it requires a miracle to receive any help bar a prescription for mefanamic acid or a faux-sympathetic gaze followed by a ‘I’m afraid its normal to have to put up with painful periods.’

I read an article about a woman who went to her GP eight times about excruciating period pain before getting referred to a gynaecologist. The problem is that period pain is normalised to such an extent that those who truly are incapacitated on a monthly basis are left feeling pathetic, weak and like it is all in their heads. This mantra seeps into the medical profession and the system of GP’s is such that referrals are expensive and the flawed nature of the system means only the ‘worst’ cases are seen as worthy of a referral . This would be bad if the sole issue was pain, but it isn’t.

The risk of infertility due to endometriosis increases as more scar tissues and adhesions form. Many women have no clue they have it until pregnancy doesn’t happen and the disease is then discovered. Trickier still is the relationship between endometriosis and pain: more endometrial tissue doesn’t necessarily mean more pain.

Last week I had a laparoscopic operation for diagnosis and treatment of endometriosis. They weren’t sure I had it before the operation, and surgery is the only way to know for sure you have it. An ultrasound may reveal cysts formed by clumps of tissue, but in 90% of cases it isn’t conclusive. They found endometriosis and removed it, but I will need follow up treatment most likely in the form of the pill or the coil.

Before I received real help, I was made to feel accountable for the pain I was feeling. It was insinuated that I was anxious, depressed, unstable and sensitive because blood tests revealed no cause for my pain. The more you get turned away and told you are making it up, the more you question yourself and start to think there is something wrong mentally. I have anxiety, but no amount of anxiety lies at the root of the terrible pelvic pain I have experienced and which has gotten worse over the years. My neighbour also has endometriosis and suggested that maybe I didn’t present myself well enough as a case for them to consider it as an option.

It shouldn’t be about how you present yourself. It should be about delivering help to anyone who turns up at the doctors and says their periods are distressing them and causing their lives to suffer. The main problem is, of course, a lack of belief stemming from a firmly held acceptance that the root cause of any woman’s pain is emotional.

The other problem is surgery. The test for endometriosis is invasive, expensive and carries the usual risks for surgery. Here in the UK the NHS waiting time for the procedure is up to 16 weeks. If you can afford private or have insurance, great. If you can’t or don’t, join the back of the queue.

I don’t see attitudes towards womens’ health concerns changing in the near future. Of course it is great that we have a functioning health system that has the equipment necessary to diagnose and treat such a condition, but telling a person pain is in their head doesn’t make the pain go away. If you are experiencing bad pain every month, don’t sulk away and try to convince yourself it isn’t real. Mention endometriosis and say you think you have it, ask your GP to refer you, and tell them its urgent because you hate heavy periods and think babies are cute.

Back.

It has been a long time since I posted and a lot has changed. Find below an uncompleted short story:

Every window of the right side David Hume Tower has a view over the university campus. The top floor affords the best views of the campus as a whole, with slight alterations in the ability to see certain little parts. For instance if you stood in a seminar room at the front of the building and looked out you would see Bristo Square, the Teviot student union and directly in front of you George Square park. If you were to look more closely, you would see that at one of the corners of Bristo square there is a particularly large lamppost. The seminar room one door along from the first is almost identical; in fact it may be identical in size, layout, in the number of chairs and position of the large lunar shaped desk. If you stand, however, in the same position you stood in moments before in the previous seminar room, you would look out of the window and see that the lamppost is gone.

The lamppost isn’t gone. It is just hidden, axed out of the picture by a change in position of a few metres. If you look down you can see people walking to and from class, if you look up you can usually see a cloudy sky. On that particular day, I could see the sun rolling out from behind a vast grey cloud, changing the hues of every mottled grey pillar and cobble. It did this only to recede back behind its cover. I look down at the people, seeing if there are any heads I recognise. I smile when the only thing I can see of people are the tops of those small trendy backpacks everyone wears and the partings of girls hair or the tufts of guys. I am not struck by how small people look from up here; I am more surprised by how jarringly big they look, how close they seem from the top floor.

At that moment my mum comes in and, when I don’t look round, she comes and stands beside me. I continue to look down at the people, the pavement and now a golden retriever walked by an old man. My mum stands for a minute, doing the same as me, until she laughs and shakes her head and moves away from the window.

‘Makes me feel dizzy. Are you ready to go? Did you get all your documents for later?’
‘Yep’
‘Ok’

I still haven’t seen anyone I recognise, but I get the feeling my mum is impatient to leave so I turn away from the window. The campus disappears as I turn to the wall. I take the files I had placed on the table and breathe in deeply, thinking that I can keep the smell of the room locked in a special compartment in my brain if I inhale sharply enough. Mum is already standing at the top of the stairs.

‘I don’t understand why they made you come all the way up to this floor, I mean why couldn’t they just leave them in a cubby on the first floor….’

She peters off because she knows I don’t like it when she complains, and right now at home everything is about what I like and don’t like. The staff at the university don’t know or care what I dislike, so my essays from last semester, my reading materials for the next few months and my note of authorised absence all get shoved in a cubby hole on the top floor of the tower where the language department is. The corners of my essays and reading have been bent upwards by the limited space of the cubby; only the note of absence remains in perfect condition.

Mum hurries down the stairs with light eager steps which make my steps sound like clumsy thuds. She is already at the bottom when I run into my grammar teacher from last semester. I feel as if I have been caught skiving, as if I should be in her class right at that moment even though term doesn’t start for another week. She smiles and asks how I am and how my holidays were. I tell her they were fine and tell her I am in a rush and that I’m sorry. She shakes her head and mutters, in the flustered, confused way adults do when someone younger than them says something that seems out of sorts. I move more quickly down the last two flights and even though I know she is looking at me as I walk down, when I look up she is gone.

When I get outside, my mum starts to ask me things:

‘Now you know where I’m parked, don’t you? I’ll just wait for you in the car. Make sure you show her the slip and let her know you’ve spoken to the head of department..Or is it her thats the head of department? Anyway, I’ll just be in the car round the back of Buccleuch Street.’

She smiles and gives me a little wave as she walks off as if this is it for a while. I don’t meet anyone on my way to flat 55. At Edinburgh, most of the rooms in the flats on campus are used for tutorials or offices. Flat 55 is the same as every other flat- the stairs are steep and tiresome to climb and even worse hungover. I remember grabbing onto my friend to stop myself from falling as we both made our way, ten minutes late, up these stairs to a tutorial on Madame Bovary. We wanted to go because we knew it would be interesting, more interesting than any of the classes we’d had that term on Phedre or politics in Vichy France or on the use of death imagery in Baudelaire. When we made it to the class, we pretended not to notice the looks of surprise everyone was giving us as we pushed hair behind our ears and rummaged in our bags. My friend sat calmly for the rest of the class with her book open, underlining and nodding when the teacher made what she thought was a good point. I sat staring out the window and only looked at our teacher when she said ‘not a very nice way to die.’

I was squinting. The rest of the class was laughing nervously, going along with how death by arsenic isn’t a very nice way to die. I can’t think of a worse way and, in the spur of the moment I open my mouth to say something but my friend shrieks and stops me as she makes to pull me away from the window but fails as her books clatter to the ground-

‘Imo!!!!’

I whip my head around and water lashes my face and I put my hands up in a delayed attempt to shield myself. A window cleaner looks in and mouths ‘sorry’ as I wipe water from my face, mouthing back that it is ok. The rest of the class doesn’t know whether to laugh or pretend it hasn’t happened. I wipe the water from my face and wish everyone laughed at this and not Emma Bovary’s death.

I am despondent and silent in all of my classes. This is how I predict I will be when I meet with my academic supervisor in flat 55. She tells me to take a seat when I come into her office. My sheet is already in my hand- I aimed to give it to her to sign and then leave- but she motions at me to sit down. I grind my teeth and sink into the armchair whilst putting the slip on the desk. She looks at it then looks at me, eyebrows raised. I say nothing and, in an effort to show I am in a rush, that I have somewhere else to go despite what she might think, I look down at the slip. She talks:

‘This must be very hard for you’

I dreaded this. Dreaded the thought of the cliched small talk and the long, meaningless gazes that I deliberately avoid meeting. Since silence doesn’t work, I squint and ask her what she means.

‘I mean your decision to take a year out. It isn’t an easy decision. I know it must have been difficult and I think you are very brave for deciding to do whats best for you at this time.’

When I leave the building I am the only one walking around George Square. I can’t see a single person nor can I hear the click-clack of shoes on cobble stones. This is why my own feet, as they did on the plastic covered stairs of David Hume Tower, sound so heavy, so piercing as they hit the ground. When you are alone, every little thing becomes deafening. The falling of books from a too full shelf disturbs you, the opening of your room door makes you jump and look up, the light thump-thump-thump of a headache makes you think death is coming, the whistle of a single idea about leads to the piping scream of a train of thoughts.

I call my mum:

‘Hey, I’m gonna meet someone then get the bus home instead. Sorry to keep you waiting-‘
‘Oh! No no its fine. Who are you meeting?’
‘James.’
‘Ok well have a good time, will you be back in time for tea?’
‘I’ll probably eat something with him now so no’
‘Ok, do you have a key?’
‘Yes. bye’
‘Wait how did the meeting go?’
‘Fine she signed the slip. I really have to go’
‘Ok bye then’

I make to walk straight ahead but when I look up at David Hume Tower I am stopped. There is someone standing looking out of top floor window. I only notice because the person is wearing such a bright floral dress that she stands out to such an extent that looking anywhere else is impossible. My slip of absence is still in my hand, and in a moment of panic I scrunch it up and walk as fast as I can, looking down until I get just close enough to the tower. Just close enough so that when I look up, I can see the woman with her hand on the window.

Just be yourself?

I am what people would define as the opposite to an introvert. I love people and talking to them, I like big crowds as much as I like having noone around me, I like partying, I am known as being very social here in France as well as at home in Edinburgh, and I am not shy. So far, so extrovert. But there is one problem: sometimes, I will lock the door to my room and not come out for two days.

Well, except when I have class. Or to get food. I spend a day getting ready mentally for a party, often going from class to class and keeping social encounters to a minimum. I will sit and listen to music, study, read a book or write and do strange things like pretend I am a famous dancer. Emphasis on the studying and writing. I prioritise all of these things on certain days because they are who I am and what I like to do. Unfortunately, I have trouble communicating this to people, and if I did I would probably be asked why I don’t just want to have a coffee with a group of people, or just sit on grass in the sun with people talking, instead of being a weirdo.

Its ERASMUS!!!!!! Is the echo heard throughout the streets. Just come for one drink. Just come watch a film. I would, but I don’t want to. I’m sorry. I have shit to do.

Why am I apologising? For I get tired of the sound of my own voice. I get tired of explaining myself, because that is what lots of conversations are in their essence- an explanation of your day, your moods, your motives. When I am in the mood, I love being sociable and talking about my life, but if I do not take time to have a life outside of socialising I will have nothing to talk about. Just what is it about the term sociable that makes people so keen to explain themselves, so avid to be put into the category of sociable by others?

Because the alternative is introvert. This is a term that gets slapped on people who prefer their own company to that of others, conjuring up images of someone sad, lonely and not in touch with the world around them. I do my best to ignore labels such as these and shove them aside, but what if I find myself labelled as an introvert because I didn’t go out on a Saturday night? Or because I muted the Facebook conversation so that I could stop being bothered with notifications of my more sociable peers’ meeting up plans?

Any large amount of time I spend with people is, for me, a loss of time for the self. It is a loss in the sense that I put others before myself, because I filter my ideas so as to match the general mood of the group and shut out my more controversial thoughts or ideas for the sake of impressing or keeping others happy. ‘Just being yourself’ is impossible and one of the great illusions of modern culture: I cannot ever be completely myself with a large group because there is always someone in a group who will be upset, challenged or dismissive of something I say, and I prefer my sociable times to be pleasant ones. I find myself unable to be selfish in sociable set ups, and that is where the necessity for alone time appears and binds me to a common good. The pressure to exist as a mass and to live only to go out and have a good time in quest of a projected ideal of sociability  is where our generation loses its potential.

The wiring of my brain is different to others- I know people who function best in social setups, and who truly find it conducive to happiness to spend all their time with others. This is a time where the main minefields for my future prospects and career are spending a year in denial of a future. This is where I will fall down- by devoting all my time to others to create a projected self image and completely losing myself and my personal joys in the process.

Nothing to fear but fear itself?

The translation class was flowing along nicely. Sure, I may have had to repeat my english sentence a few times so that all my French classmates could copy it word for word because it was right, but it was fine. Just fine. Until the teacher asked everyone what they wanted to do after they graduate. The girl sitting next to me outright refused to be part of the conversation; her head started shaking, the words ‘I don’t know’ (Je sais pas) were uttered and she continued to doodle on her page. The rest of the class weren’t so extreme in their reactions, but the mood suddenly turned from a bit of lighthearted Friday morning translation fun to doom and gloom, and I got the feeling that anyone who walked by the door at that moment would have been able to smell the fear emulating from our Salle. France’s economy is in crisis. Francois Hollande has promised to boost the economy and get the ball rolling, but it just isn’t happening. The unemployment figure stands at 10% and it is becoming more and more difficult for young people to secure a job. This is not a recent development: four years ago I was sitting in a similar room, this time in Scotland, talking to a french assistant who had written the topic ‘ECONOMIE’ on the board and asked us to talk about it. She gave us handouts which stated that french students are extremely pessimistic about their job opportunities and economic prospects after graduating, and many of them don’t see the point of studying at university as there is still a small chance of ending up in paid work at the end. Most students are worried about securing a job after university, but in France the fear is so widespread, so ingrained in young people’s psyche that the question ‘what are you going to do when you graduate’ feels almost like a death sentence. It is as if in that room they collectively said, without saying a word, ‘do not even go there’. In Britain, there are always people who respond enthusiastically and have some kind of plan- the cocky guy who is going to be a self made entrepreneur, the girl who somehow gets a journalism internship, the people who still, despite the economic climate, have a plan. The strong reaction of my classmates last week was echoed by an older french woman who I teach english to weekly- her exact words were ‘It is hard….Here there are no jobs for young people…There aren’t even jobs for old people.’ I had been talking to her for twenty minutes when this opinion surfaced. The state of the economy, in France, is inescapable. It is easy to criticise, less easy to empathise. The best I could do with that women was agree that things are bad and to hope that this negative disease of fear, that by no means stops at the french border, will one day give way to reason to believe again.

The beginnings of a creative piece

I wasn’t sure whether or not to post this, but it seemed natural to use this blog as a space for everything I write. So here it is: this is the start of a piece I wrote about isolation when you first move abroad.

Her head knocked against the bus window. Not too hard, but everyone heard it. They must have looked for a second, maybe even just half, with a glance of concern so minute she could barely feel it. She appreciated its tenderness, revelled in it, and then closed her eyes hard to block them all out. The tenderness was too much and it would be gone quickly.

When she opened her eyes again, she felt the words she didn’t know hit her ears like a sharp, cold wind. She was smaller than them and, as she looked out the window, felt like she was standing out there, in that cold wind she was so unaccustomed to.

‘You’ll get used to it’, they said laughing, sipping cocktails on their veranda, pale rocks and a mild breeze rapping the sea against the sand that had cooled to the perfect temperature, when she could go and wade slowly towards the sea. The grains no longer sizzled nor shocked, and on this bus she craved them even at their hottest, piercing her feet as she ran and then let out a sigh when she finally got to the darker sand, the forgiving sand.

Those journeys from veranda to sea seemed to take forever, and yet nothing felt as long as the moments here. The bus looped around the French streets and she could see only perpendicular angles- rectangular flats in a multitude of baby blues, yellows, pinks and whites. She couldn’t get used to the strange lilt of life here, nor the boxed up nature of the architecture and the university. To her it all looked as if it had come out of an IKEA box, pre packaged and ready just to be erected by men who wanted to make it for ease, not beauty.

Eyes open and a jolt back to the present. The buildings were changing, getting taller and yet those colours spread out like a disease that had touched everything but the city centre. Why did they all have to be painted these sickly tones, she wondered. She couldn’t ask anyone, they wouldn’t understand. What if she started, right here, talking about verandas and the sunset and her favourite part of the sea, and about the time they all told her she’d get used to it here?

No one would understand. She could speak English, but nobody wanted that here. They didn’t want her and her half baked attempts at French, not even when was nodding and smiling. They knew she wasn’t one of them and yet she tried to be, tried her hardest to make them see her in her three dimensions rather than reduced to a caricature of who she really was due to language.

‘Are you ok?’ She was met suddenly by the concerned glare of a tall, pale girl, and the shock of hearing english snapped her out of her dreams. In this moment she nodded and stammered a ‘yes’, and the girl looked at her like she was crazy. Maybe she was crazy, but this bus would make anyone mad. It only took two minutes for the girl to start again talking in French, and that moment like the glances of pity she had just experienced after banging her head, was over in a flash. A sprinkle of comfort, followed by a sizzling dash of bitterness.

What is Success?

I was thinking about this earlier- hilarious take on success!

Storytime with John

“What is success?”

And I know, I know…everyone has a different version of the definition – apparently...but we are all people, and for the most part this drives us to want the same things. To love, and be loved…to have a purpose, and a core motivation…to eat an entire family sized lasagna by yourself without being sick. See, that’s probably just me with that last one. But yeah, the question does confuse me – and if I don’t fully understand what it means to be successful, then how will I know when I have reached this grand milestone?

You see at the moment I feel like I have graduated from the meager caterpillar stage…wandering around aimlessly, just consuming everything – with no clear direction…and now I am in the chrysalis stage, locked away in my bedroom cocoon, beavering away…with the hope that I will somehow magically burst into life…

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Straddling two lives

Beaune, Burgundy, by night.
Beaune, Burgundy, by night.

The word straddling is funny and sexual but it is the only one I could think of to fit this context perfectly.

So, I have been back in France for just over 2 weeks now, and a lot has happened. I have finished exams for last semester, I have met lots of new people, and I have said goodbye to my best friend here. I have also gotten over coming back. One thing that nobody bothered to tell me about a year abroad is that moving between two different countries over short spaces of time is hard. Emphasis is put specifically on the getting there, and then the depression which follows the year abroad or, as people like to call it, post Erasmus depression. There is little talk about those nippy little times of traveling to and from a country, or how I would often feel very thrown, confused and disorientated as I moved between two separate lives.

Of course I only have one life. But it feels like I have two. My transition from school to university was a bit like this, but I feel that this time because I have moved countries and adapted to a new culture it is much more noticeable. On my first full day back in Scotland I went and had lunch with a friend from university in Edinburgh. I was immediately struck by how strange it felt- not because he was different, but because it was as if nothing had happened and Edinburgh had just been sitting there whilst I’d gone to Dijon. I had fantasies on the plane- vivid scenes in my head of how I’d impress my friends at home with all my new found knowledge and experiences and blow them all away. In reality, I still get made fun of because I can’t work a dishwasher and I still say stupid things all the time. C’est la vie.

The one big thing, though, that stuck out, was how differently I saw things. Coming home was more of a culture shock than going to France. I detest the way people who have gone abroad boast about how they are so much more worldly than others, or automatically assume that they have one upped everyone just because they got on a plane and ate some croissants or tapas for a year. I really did not think I would feel different on my return to Edinburgh, but I did. I felt different because I am a different person in Dijon, mainly because the people I hang out with are different, and it is the people you surround yourself with that make you. The friends I have here in Dijon are the strangest, wackiest group of people I have ever met, but they are also the most genuine and have taught me how to embrace life in a way I never have before. They are by no means a stable group- as I said before, my best friend just left France last week, but part of this experience for me is learning to adapt and enjoy who is here right now.

As well as an overwhelming feeling of relief at being back in Edinburgh because I could say ‘excuse me’ instead of ‘pardon’ all the time, I was also hit by a realisation that it wouldn’t be easy coming back every time. Edinburgh and the definition of ‘home’ won’t ever be the same again because somewhere else has become home. For now, I can’t really imagine giving up a life where I am surrounded by people who share my desire for change and upheaval.