Endometriosis and Me

1 in 10 women (or people with uteruses) have Endometriosis. The average time for a diagnosis is 7 years, that is 7 years of pain and confusion. We are often disbelieved when we go to seek help, told our pain is normal. Things are changing and awareness of the condition is growing, but not fast enough. I posted about this on my twitter account several days ago, it received a huge response and so many people shared their stories with me. I was heartened but also saddened that this is still such a problem for so many. Here is my story.

I started my period in my first year of Secondary School. I was well prepared, the women in my family have always suffered with their menstrual cycles and I’d seen it so I knew what was going to happen. However, I found the pain really hard to handle, my mother was sympathetic and treated me with painkillers and a hot water bottle.

The first inkling something might be different about came from the length of my period. At first they were very erratic, I wouldn’t have one for ages then I’d bleed for a fortnight. Eventually it settled into routine of a two week period every, single month. I was in so much pain, often very weak and suffering from an inability to focus during it. My mother took me to the GP. The male GP told us that might be something serious, like leukaemia. There were bloodtests and diaries and several appointments. Eventually they ruled out the nasty things and settled on “Oh well, periods are just hard”. There was also some mild anemia so I upped my iron intake. He also suggested I went on the contraceptive pill to control my periods.

My mother said it was my body and my choice, she talked through it with me doing her best to give me all the information. I was so embarrassed talking about it with her and I was not yet sexually active. None of my friends had these issues and I didn’t hear anything about this stuff at school. I was worried about taking the pill as I’d heard some things about cancer, and I just didn’t understand enough. I felt messing with nature was wrong. So I opted not to take it and carried on weathering the pain. I was around 12 years old at this point. At 14 it got much worse, so I told my mother I did want the pill after all. It didn’t help the pain but it did stop me bleeding for two weeks at a time and I could control when my period came. It meant I could begin to organise my life a bit. I made sure not to plan anything during the 7 day period break in the pill cycle. If something big was coming up, like a night out or an exam, I could run the pills packets together essentially skipping the period. I would still bleed a little but I could cope with life. I had some control back.

Things settled and I coped. I was keenly aware my friends did not need to stay home when they had a period. I felt like I was weak, periods are natural, everyone has them, why am I such a baby? At university it carried on, I went back to the GP a few times but they insisted nothing was amiss. They gave me slightly stronger painkillers but that was it, I just had to learn to live with the snarling beast that lived in my womb.

In 2005/6, in my mid 20s things really kicked off. By this time something was really, very wrong. The pain was often unbearable, the periods so unbelievably heavy, the pain was not limited to cramps either, it was everywhere. Sometimes it was so intense I fainted so I often had bumps, scrapes and bruises from that. I also started to get recurrent kidney infections which also brought a world of extra pain for me. This time the GP was a woman and she thought I might have PCOS and so a consultant appointment as set. In the meantime the kidney infections kept coming, at one point the presumed PCOS was masking the kidney infection so they didn’t realise it was still there and I ended up dehydrated and hospitalised.

Image by Julio César Velásquez Mejía from Pixabay 

You might have assumed that being admitted to hospital might finally find me some answers. They treated my kidney infection and a really lovely consultant spent a lot of time drawing me diagrams and explaining what was wrong in my biology that was causing my repeated infections (leaky valves between the bladder and kidney). He also seemed very sceptical about the PCOS diagnosis. There were tests and more tests and assurances I’d be fine. I spent a majority of this year lying o a sofa, convinced I must have something seriously wrong with me and feeling frustrated no one would listen to me.

Around a year later I finally was able to see a gynaecologist, I have no idea why it took so long. She was a woman, not that it should matter, but she was so incredibly kind. She could see the toll this was all taking on me and she re ordered all the tests again. For months I kept going back (I was living in rural Wales at the time and my nearest hospital was a 45 min drive away, so if my boyfriend wasn’t able to take me I was begging lifts from friends and family) with no answers. Obviously I had been doing my own googling and proffered my suggestion of Endometriosis. I was told this seemed unlikely, but various other things like cancer were occasionally thrown around and seemed less likely to me! Eventually the gynaecologist suggested I should have a Mirena Coil or IUS to control my periods.

As I was under the care I went to hospital to have this done. I had always struggled a bit with tampons and pain during sex but I just thought that was normal. I’d never had children so she warned me this would be ‘uncomfortable’. It was one of the most horrific experiences of my life. She really fought to get it in, I was writing and screaming in pain. Actually screaming. Two nurses held me down, one was trying to be reassuring and kind, the other was dismissive and essentially told me not to make a fuss. Suddenly I went floppy, the gynaecologist realised my heart rate had dropped and I had gone into cervical shock. She quickly aborted the attempted insertion and they dipped the table so my head was very low. Once they thought I had come back round enough they attempted to help me off the table but I collapsed a little. They kept me there for hours and fed me sweet, black coffee until I was able to walk. I went back to my boyfriends house afterwards so he could keep an eye on me. And thank god I did because he found me collapsed on the bathroom floor later that night, in pain and bleeding.

The gynaecologist suggested I should have the coil inserted under anaesthetic and that’s what happened. It did infact help as, although I bled a small amount, my periods were much reduced. Over time they would go completely. I still had random pain that I was unable to explain, I still had pain during the time I should have had a period but the medical professionals assured me this was normal. I was discharged from the care of hospital.

I moved to Bristol, it was now 2012, I was still having problems but had come to believe that I was just really bad at dealing with pain. My large tattoos should be enough evidence that this is not true, but I thought this was the only explanation. I was assured it was ‘normal’ by doctors, they must know. I was also dealing my diagnosis of Obsessive Compulsive Disorder for which hypochondria can be a symptom, so I told myself my obsession with this pain was not normal.

One day I was at my new GP in Bristol talking about my OCD. I explained my mood was low and I was worried I was obsessing unhealthily over tis pain. She immediately started to question me about the pain, I told her everything, about the pain, the heavy bleeding, the brain fog, the fatigue, the fainting. I told her I often threw up from the pain and would spend at least a day a month curled up in my bathroom wanting to die. I told her the doctors at the hospital had discharged me after ruling everything out. In a moment I will never forget she reached out and touched my arm, “Fainting regularly because you are in pain and spending time curled up crying on your bathroom floor don’t sound normal to me”. I wept in relief. She suggested Endometriosis immediately, I told her I had suggested that but no one had believed me. She also suggested other things and said she would refer me to the hospital. I was so unbelievably happy to know in that moment I wasn’t mad.

I swiftly saw a consuktant, a few tests later and they were reasonably sure it was Endometriosis. To know it was real helped me process it so much better. I now knew I had soething that doesn’t just go away, is hard to treat and would likely cause me problems having a family. But I also knew that it wasn’t in my head, that the extreme pain was actually extreme pain. Far from being weak I was strong and brave to have got this far. Suddenly I felt more powerful and in control of my life again.

There was the end of one relationship and the start of a new one (with my now husband) at this point. The added complications of this condition meant I had to have uncomfortable conversations early on with him about my body and it’s problems, about my fertility. Something I didn’t really want to do in a young relationship.

Scans had convinced my consultant that it was endometriosis but the only way to accurately diagnose it is with a Laparoscopy. I have now had a lap and two surgeries so far with my endometriosis. The last one being the most successful leading to three blissfully pain free years. Unfortunately in 2018 it came back and we are now watching and waiting, because of it’s very inconvenient location, to see if more surgery is an option.

The main point in recounting my story is to impress upon people that if you feel something is wrong, keep pushing, don’t just put up and shut up. Excessive pain ruins your life and it is not normal. I have learnt from this experience to advocate for myself and my newer diagnoses of Asthma and Hashimoto’s Disease have benefitted from this and I have received help swiftly.

We deserve good care. We shouldn’t have to beg for it. Believe women in pain, don’t dismiss us.

For transgender people there are often other barriers to diagnosis and care as medical professionals may not immediately recognise it or offer it as a diagnosis.

Find out more and how you can help here: https://www.endometriosis-uk.org/understanding-endometriosis

Not giving an EXPLETIVE!

Image

I am entering my thirty second year of life this year. It’s come around pretty quick! When I was 29 I spent a majority of the time worrying about turning 30. I told anyone who asked my age that I was 30, just so I’d have time to get used to it…I know. I felt like leaving my twenties behind was some kind of death knell of not only youth but the essence of my life. I’ve always gone to gigs, had a touch of punk sensibility, had tattoos and piercings, dressed and dated inappropriately. In my late twenties however my mother took these things as signs I was having an early mid life crisis and struggling to accept my age. She was right in one way, I was struggling, but actually the only constant was my ‘alternativeness’.
There was a small period where I tried to not be these things, tried to be the image of me I thought my job and friends and status needed. But that person was not me and that made me very unhappy. Then 30 happened, I embraced it with a grim smile and an 80’s themed birthday party. It was drunken fun and my family made the night superb. Good costumes by all too!

LIFE BEGINS AT 30

It really does. Suddenly I found myself transformed. I was there, I hadn’t died and nothing massive had changed. A calm descended upon me as I finally grew in to myself. My life started to take direction, I moved away from the faltering bad choices of my youth to clear and self assured life decisions.

I decided to move away, a fresh start perhaps but also as work in my area was scarce. First came a relationship, a non toxic, safe and sensible relationship with a really nice guy. Then came the decision to move to his city, as I already have friends here. Finally I found myself in a new job, a few pay grades lower than I’d like but enough, in an entirely new industry. My health both started to improve but also was treated and diagnosed properly so now I am able to move past previous issues. New but good friends have come into my life and strong bonds have been formed, the distance has tested the bonds of older friends but those that remain I know are true and real and the people that deserve space in my life. I got engaged (something I’d previously thought I’d never do and didn’t want!) and am happily planning a wedding for next year. I guess good things come to those who wait! I am careful to remind myself every day how lucky I am. Work wise I have gained confidence again and gone from strength to strength, learning lots and being promoted until I have landed myself an excellent job. I couldn’t be any happier.

These days I find I cut a more confident swathe through a crowd. I know who I am and I don’t care what you think. When I wore ripped tights, safety pins and caked black eye liner I thought I was punk. I thought I got it. I thought I was free. But now I work for the man, technically the government, because I genuinely believe I can make a difference from within. I wear what I want to wear, some times it’s rockabilly or rock chick, sometimes I wear suits, sometimes I wear hoodies and jeans. I listen to music from every genre with an open ear and absorb art from every artform with an open eye. I’m both more selfish and yet inclusive than I have ever been. I do what is best for me and if something is making me sad or uncomfortable or angry I let it go. I realise how short life can be and I don’t want to waste it. But conversely I am more tolerant of others and accepting of their faults and quirks. I listen to every side of the story and look to compromises when there is no right or wrong. I live my life for me and I try to make it a better place for all those who come along for the ride with me.

I genuinely couldn’t care more if I tried and what could be more punk than that?!

Fairytale Friday

Poem ten- http://napowrimo.com Friday nights alright for fighting,
Cheap wrappers and spilled kebabs strewn the wet cobbles.
An aria of drunken female screeching is set off by the rhythmic shouts of the ‘lads’.
Skirts barely skimming ass cheeks over tan streaked legs,
Rain hits down on cold,goosebumped skin,
running mascara and no coats are regulation uniform here.
Staggering on scuffed cheap heels a girl screams and mourns her lost love.
Her friends pay homage to her pain, passing her some chips and holding back her hair as she vomits.
Rainbow sick that smells like aniseed and sugar splatters the pavement.
Her knight disappears around a corner, yelling his displeasure.
She sinks to the wet floor, avoiding the coloured puddle she’s left by only a whisker.
Discarding their empty wrappers her mates conclude – its time to call a taxi. 

By: BeckyBite

Work/Life Balance

Poem Three – http://www.napowrimo.net/

“Want to go out this weekend?”
Same old story, got to work my friend!
Saturday night but Boyfriends with another,
Ah well, I’ve inevitable lost my lover.

Young people everywhere playing hard & fast,
But I’m studying chapter one before last.
Socialisation chapter five page sixty nine
No that’s ‘Life Changes’ it says so third line.

Head in the books I fall into slumber,
Thinking of stress, now whats the page number?
Heads throbbing, close to a nervous breakdown.
Now what I need is a good night on the town.

“Cure for over work, whats in this glass”
Says my best friend bold as brass,
Out with the work and in with the fun,
It’s about balance when all’s said and done!

Impossibly High Heels

Poem Two – http://www.napowrimo.net/

Watching the women as they hobble and wobble

in their impossibly high heels,

Stacked skyscrapers beneath cracked dry heels.

 

See them stagger and gather

their skirts above their knees

as they avoid gleaming puddles.

 

Giggle as they sway and may

indeed stumble or fall.

All for the relentless pursuit of tall.

 

Stare as they totter and potter

through store after store

of more impossibly high heels.

 

 

Beginnings

Poem One – http://www.napowrimo.net/

Let’s begin at the beginning, a very good place to start.

I need to begin.

Somewhere, somehow, I need to find the strength.

Why is it so hard you may ask?

Because to begin I need to

Embrace the end.

The point of a beginning is that it will end.

There is no point starting 

What you won’t finish.

And there’s the rub.

I’m not sure I’m ready to end.

To let it in,

To say what I need to.

I owe you those words that catch in my throat.

I owe myself a chance

to say goodbye.

No matter how hard.

And so to get to my destination, I will need

To Begin.

How many Sunday baths

Will it take?

Soaking away the dirt

And the past.

Until I vow to be reborn, clean and baptised

Into a newer version

Of the same old story.

By: Becky Bite

Living for Today

A quick, furtive glare at the hourglass
is a must I decide as I plait my hair
and shovel on the face I keep for lunching out.
My subtly brown lips smirk as I catch myself
in the mirror. The picture of elegance…I wish.
But as I prepare to leave I consult
my hourglass and stop dead in my tracks.
Where has all the sand gone? I have just half
left but where’s the rest?
Surely I cannot have lived for so long?
Surely I would have noticed life slip by somehow?
I scan the photographic memories on the walls,
searching for an answer,
searching for a hint of time passing, something,
anything, which might make sense.
But the attempt is futile, its nowhere to be found.
No answer, no hint, just so many questions.
And I wonder why the present, which is here, now, this minute,
is all too suddenly yesterday, before, gone.
As I ponder this I notice the black writing of my past
crouching in the corner, waiting to pounce,
perhaps I should leave now say my gold shaded eyes.
I pass by the hourglass and pay it no heed.
For this is today and I live for now.

By: Becky Bite

Pretend you don’t see her

You pretend you don’t see her
when she stands there in front of you,
when she strips off her layers of dignity
and paints herself with pretence.
You just don’t see it.

You pretend you can’t hear her
as she screams her quiet protests,
and when she throws your memories off the dresser
you try to ignore it.

You pretend you won’t speak to her
so she questions her answers
and when she puts on ideals for you
you fail to notice them.

You pretend you don’t see her
when she applies sensuality and lip gloss
and as her body sings its rhythms for you
you just won’t listen.

By: Becky Bite

Virgin

There is a girl who cries herself to sleep,
There is a girl who sings and dances in the summer
rain and laughs in the winter sun.
There is a girl who slashes her wrists with daisy
chains and jumps from rose petals.
There is a girl who shoots a shot and watches her
life fall around her feet.
There is a girl who wears long flowing skirts, she’s
caked with thick black eyeliner.
There is a girl who drowns in her own mind
and flies into the moon each night.
There is a girl who stands tall and straight
and wades into the sea.
There is a girl who reads poetry and
understands the world but cannot understand herself.
There is a girl who knows how to be sad
and how to be happy but cannot feel.
There is a girl whose hands bleed with
every breath she takes.
There is a girl who slowly climbs the stairs to
womanhood but hurries towards the ever after.
There is a girl who kills herself with every
word she utters.
There is a girl who can’t see anything as
she crumbles.
There is a girl who is always on my mind,
But only in MY head.

by: Becky Bite