Endometriosis. How I hate thee…

Here’s a challenge I’ve set myself; write a blog about living with endometriosis, and make it funny, inspirational and try not to moan too much about it.

Before I start, I just want to say that I acknowledge that there are lots of people who have medical issues that are far, far worse than my own. This is not a competition in misery (I’m far too laid back to win that one) this is merely a reaction to this stupid, horrible and unfair condition.

For those who don’t know, endometriosis is a gynaecological condition which affects women of child-bearing age. Essentially, bits of stuff that should be inside the womb, are set free by your treacherous body, and make their home outside of the womb, and cause you more pain than you want, by doing so.

But it’s a weird one. Some people have very mild cases of endo, and some experience the other side. And even though it is estimated to affect around 2 million women, diagnosis is tricky because symptoms are similar to a plethora of other things, and because it exhibits so differently in different women. The only definite way to confirm it, is by having minor surgery in a laparoscopy. Which hurts.

I was diagnosed with endometriosis when I was 31, and it was a relief to have a name to put to the pain I was experiencing. It’s likely that I had endo for a good ten years before diagnosis, but because symptoms include pain, bleeding, tiredness, pain, discomfort, infertility, pain, exhaustion and pain, very often women are dismissed with a curt “it’s time of the month related” diagnoses and told to take 2 paracetamol and have a duvet day with a hot water bottle.

I spent years assuming that I was just a massive wimp when it came to pain, and that all the other women I knew didn’t seem to let their periods affect them like I did. I remember walking to 6th form when I was about 17, and collapsing on the street with agony. I was bent double on the floor, completely unable to get up. I assumed I was going to die. A kindly motorist stopped, picked me up and drove me home. I went to my (male) GP who informed me that it was just a period pain, and who told my mother that teenage girls are prone to over-dramatizing, in order to get a day off school.

So, I carried on throughout my twenties, experiencing serious pain every month, and putting it down to my general wimpishness. I mainlined cocodamol, made best friends with a hot water bottle, and spent around 3 days of every month crying.

So, when I was diagnosed, the first thing I felt was complete relief. It wasn’t my fault. It did hurt!

So, I joined a couple of societies to get some tips and advice, and share stories. What I found was that lots of women – just like me – had gone years being dismissed. Often by other women. My co-endos have been told to “man-up” (nice), “grow a pair” (nicer) and just get on with it, because all women go through it.

It’s NOT like period pain. It’s just not.

Here are some of the things that endo sufferers go through. Some are my experiences, some are others, some are both, but all are real:

  • Waking up and being unable to put your feet on the floor to support your weight, as you are temporarily paralysed by pain
  • Being unable to go out of the house due to blood clot passing. Frequent and heavy
  • Marking off the dates on your calendar and not making any plans for around 3-5 days every month, because it’s doubtful you’ll be leaving the house
  • Being pathetically thrilled when it starts on a weekend, because you know that you probably won’t have to phone in sick to work. Again.
  • Going to the toilet at 1am, and still being there at around 3:30am. Every night for 4-5 nights. Because it’s the only place you feel you can safely not make a mess, and because your stomach feels strangely relaxed when you’re bent over in a crouching/seated position
  • Crying. Solidly. For hours. Because even though you know it will pass, you also know how much it will hurt before it passes.
  • Feeling pain in your shoulder, kidneys, back, calves, stomach and lower arms. Because these are somehow linked to the lining of your womb. Don’t ask me. I’m not a doctor
  • Not allowing anyone to touch your skin, because it burns
  • Nosebleeds. Frequent nosebleeds
  • Hoping that the dog won’t run off his lead, because the act of raising your voice might make you throw up
  • Throwing up. Suddenly and without feeling sick first. Then feeling sick after.
  • The agonising, doubling-up pain, which can last for days as it comes in waves. Making it untenable to walk, sit, lie or be still comfortably
  • The fear that you will pass out, due to blood loss, anaemia, or just queasiness
  • Lack of appetite
  • Acne
  • Infertility
  • Pain during sex
  • Burning sensations in your stomach
  • Longer and more frequent periods
  • Dizziness
  • Realising that endo can strike twice a month – as you menstruate and as you ovulate. Bonus

For me, I have tried to describe it to my nearest and dearest, as I sit in the corner of a room, with my face pressed against the wall to try and cool me down because I’m burning up. I find the foetal position helps with the cramps, but not the clotting. It feels like someone has reached inside me with a fistful of razor blades and lit matches, with the sole intention of twisting and pulling my insides out of my body. At the same time, someone else is punching me in the kidneys and pressing my forehead on both sides. Nothing works to ease the pain, and so – coupled with the hormones of menstruating as well – I either cry or shout or both, knowing how unreasonable I sound, but being powerless to stop. I can’t read the story of “The Wolf and the Seven Little Kids” where a wolf has several large boulders sewn into its stomach, because that is how I feel for around 5 days of every month; that there are boulders inside me, pushing down, accompanied by a burning, cutting feeling that affects every facet of my body. In bed at night, my body is freezing, but my face burns up, so I cannot get comfortable. I sleep on two towels. I don’t really eat or drink much, because I feel like I’m going to throw it all back up. I often do. There is no cure, so I know that this is going to happen at least 12 times every year. Some months are worse than others but I never know which ones in advance. In the last fifteen months, I have been hospitalised twice.

And then there is the elephant in the room, and the bit that makes my (already boiling) blood boil.

Infertility.

Endometriosis sufferers often have primary or secondary infertility. Me? Full blown infertility, no chance of conceiving. I know. I’ve tried.

Which makes me so angry, because the sole point of sodding periods is that they prepare your uterus to receive a fertilised egg. That is the whole point. So why on earth should there be a condition which makes these periods so painful and debilitating on such a regular basis, and make the sufferer feel the pain far, far worse than most people, and yet have no actual purpose, reason or function, because the uterus in question doesn’t bloody handle the fertilised egg at all. There is no fertilised egg. Pregnancy doesn’t actually occur. Why give endo sufferers shitty horrible painful periods that have absolutely no use or end product?

I do realise that I am pissing into the wind here, by the way. I know there’s not a clinician sitting on a cloud, handing out illnesses and conditions, and consulting medical committees on the best way to screw earthlings over. Although, it would be better if there was, because then there might be a complaints division, and I’m quite good at complaints.

But, no. Endo sufferers are generally left to it. Diagnosis remains unclear for many, and usually only an eventual concession. Even after diagnosis, the treatment still seems to be “invest in a good hot water bottle, and shares in Nurofen, and batten down the hatches” for a (sometimes) pre-determined period of time each month. I say “sometimes” because another jolly symptom can be irregular periods. Which is bloody lovely when you’re trying to conceive. The only relief that can be offered is more laparoscopies, to remove the patches of endometriosis and scar tissue. But this is only temporary, because after it is removed, it is likely to start building up again.

So, it’s a kind of lonely condition. Partly because of the issues with diagnosis, partly because other women have period pains and so the consensus is that it can’t be all that bad, and partly because there is still a taboo when it comes to talking about “wimmin’s ishoos.” People are weirdly coy about the “down there” stuff. I know women who hide tampons in their shopping basket so other people can’t see, and who select checkout cashiers who are mainly older women, as opposed to teenage boys. I’ve seen teenage boys smirk at girls who have sanitary protection in their school bags, and I’ve seen and heard parents whispering about their daughter’s periods as though she’s got a detention. We might as well walk around with someone ringing a bell in front of us shouting “unclean…unclean…”

Periods are a fact of life, and they involve blood and bleeding, clotting and cramps. For some of us they involve an awful lot more, and if I’ve got to go through all of the above every shitting month until Mother Nature decides I’ve paid enough penance for sins I must have committed in a previous life, then I’m damn well not going to shy away from talking about it.

Fellow endo sufferers everywhere…I (very literally) feel your pain.

Now…bring on the menopause (YIPPEE)

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You Should Vote. Here’s Why

If you read me a lot, here is my disclaimer. This one isn’t funny.

If you live in the UK, you might have noticed that there is a General Election this week.

I don’t wear my political affiliation on my sleeve; although people who know me may be able to make an educated guess at my allegiances. However, I don’t seek to endorse particular parties, and I have opinions on policies and ideals, rather than parties and leaders. When it comes to election time, I weigh up all of the alternatives and pick the best fit.

I don’t expect other people to tell me who they are voting for either, although obviously many people are loud and proud in their choices. What I do expect, however, is that everyone who is eligible to vote, uses the opportunity to do so. And whilst I think I am fairly balanced and reasonable on most issues, on this one I will judge the shit out of you if you can’t be bothered.

I don’t know all of the reasons why someone wouldn’t vote, and I certainly don’t understand them. I assume that the biggest one is apathy, or a general “can’t be arsed-ness” and I have heard lots of people say things like “I know who’ll get in, so it’s a wasted vote” or “they’re all crap so it doesn’t matter who gets in.”

Here are the reasons why those people are wrong:

Firstly, you don’t know who will get in. You may be able to make a well-judged assessment of the situation, and in some areas of the country, you will no doubt be right. But that is not a reason not to vote. If it is a safe seat for “Party A” and you like “Party A” then bloody vote for them. Because if all of their supporters chose to believe that they would get in anyway and not bother, then they won’t. Will they?

Secondly, if you live in a “Party A” safe seat and you disagree with them – then go and register that opinion.  You may not alter that result, but your vote will be registered and counted within your age group. You may contribute to a surge of opposition voting. The candidate you favour may be favoured by others, and so your vote could contribute towards that candidate being moved to a more winnable seat in the future.  If everyone who felt like you voted, then the “party A” safe seat candidate may win with a much reduced margin, which could potentially give credence to altering our first-past-the-post system,  and make Westminster take notice of  the correlation between %age of the votes and %age of the seats. 

Thirdly, if there is no overall majority, then this time round, the party with the most votes will likely have the better claim on forming a government. And suddenly, your vote looks important.

Fourthly, if ALL the undecided or floating voters voted, we may see that safe seats are not that safe.

Fifthly, only 65% of eligible voters actually voted in the last election. There were over 45, 000, 000 registered voters and around 29,000,000 actual votes. No party achieved the 326 seats required for a majority which is why we ended up with the coalition. Imagine what could have been the outcome if the other 35% of the voting populations had bothered. Over 16 million people.

There are a plethora of online quizzes to take, if you are undecided. You read the policies and then mark which ones you like the best. At the end of the quiz, it will tell you which parties you agreed with. If you want, you could vote for that one!

https://voteforpolicies.org.uk

Don’t be misled by the weird political persona campaign we have going on. In the uk, we vote for the party and policies. In America, they vote for the person. Admittedly an awful lot of emphasis is placed on the current leaders, but to me, this is just celebrity culture at its weirdest. We aren’t voting for personalities, great orators or charming men – we are voting for what they represent. After all, everyone who jubilantly voted for Blair in 1997 didn’t realise that he’d made a deal with his mate Brown to divide the rule. And he didnt do anything illegal either. (In the leadership thing. Not the war thing. That’s a different blog)

And if you are a woman who isn’t voting, then I really have no time for you. In the last General Election over 9 MILLION WOMEN did not vote. I’ll let that sink in. NINE MILLION

It was only 100 years ago that women were deemed too silly, too hormonal and not intelligent enough to vote. It has only been 87 years since  electoral equality has been established. Childcare, domestic violence, the public image of women, the gender pay divide, maternity welfare – all of these issues hugely important to women everywhere, and yet more than 9 million women did not take their hard-fought-for rights to register their opinions. 9.1 million women literally hold the power – they could have changed the result. 

Passionate, eloquent women sacrificed everything so that their daughters’ daughters could have democracy. We owe them this. And women everywhere. We owe them.

You could argue, of course, that it is a democratic right not to vote. And technically you’d be right. But if that’s the case, then go and register your disdain by turning up at the polling booth and spoiling your ballot paper. Because if you don’t, then no one will ever know or care.

If you don’t vote, then you really have no grounds to complain about… Well anything really.  About waiting lists, the NHS, bus services, the state of the roads, the price of petrol, education, the tv licence, tax on tampons, strikes, cuts, nurses wages, child benefit, nursery places…etc…etc…

I recall the last GE. I’d been working all day, and out all evening, and I rocked up at the polling station at about 9:30pm. I walked into a darkened room, peopled with two napping old women and an old guy stirring a cup of cold tea. They all jumped up with a start and brushed off the cobwebs as I presented my polling card. They turned over the sheets of paper with lists of names and addresses on, armed with their ruler and pencil, so they could cross out my name. Apart from my husband’s name (he’d been there earlier) not one other name on that sheet had been crossed off. Or on the two before it.

Apathy rules in my home town, I’m afraid, and in direct correlation, the complain level is through the roof. Don’t be one of those people. Use your vote, whoever you vote for. Use it and be part of democracy.

Unless you’re voting UKIP.*

*joke**

**sort of

Here’s what I think about the Royal Baby

Alright. I’m not a royalist. Nor am I a republican. I vaguely enjoy the pomp and ceremony of pageantry and I enjoy the heritage and history of Britain. I like old buildings, and I think that the monarchy through the ages has contributed towards the rich and fascinating, often bloodthirsty, and sometimes terrifying, story of our ancestry.

It doesn’t really bother me that we still have a royal family. I quite like them, really, and I think that the benefits and privilege that they experience must be offset by the boring, mundane and tedious role that they continually fulfil.


So I cannot understand either extreme of opinion when it comes to this new royal baby. I struggle to have any kind of empathy with those people who camp outside the maternity wing and wave little royal flags at passing cameras. And I think that those people who respond with “another scrounging kid to be raised on taxpayers’ money” are knobbish.

Prince William is an RAF helicopter pilot. He works.

He has access to trust funds left to him by his late mother, and I’m assuming that the Crown Estate contributes towards the familial income. 


You know? The Crown Estate that raises millions of pounds of revenue a year?


I think I read somewhere that the Queen receives around 15% of that revenue to dish out to the rest of the family and that the royal family cost the country less than a pound a year per taxpayer.


Also, both the Queen and the Duke of Cambridge pay substantial taxes on their incomes, not to mention the fact that the Middletons also work and pay taxes. So, if you’re moaning about the Royals being no better than benefits scroungers (an abhorrent term for anybody by the way) may I offer you directions to the grip shop, and suggest you go and get one?


There is the school of thought that suggests the Crown Estate belongs to us all, so why should they reap the benefits..bla….bla….bla… 

It’s tedious. We are all born into something, and we all experience a life which is a combination of work, geography, family, circumstance, judgement and luck. Some are better off than others. That’s life away from communism. What would the anti monarchists have them do? Leave the palace and “get jobs”? And if they didn’t live in those buildings, and employ those people, and run those estates – who would? It would still cost “us” money. Probably more, and these historical buildings could well just turn into dusty relics. At least this way, there is tourist relevance and interest.


And don’t get me started on all this “heir and a spare” crap.

 Firstly, she is a baby. A little girl. Not a “spare” anything.

Secondly, I don’t think there is really any shortage of people in line to the throne. This conspiracy theory bullshit drives me batshit!


Yes, they live in grandeur and opulence. But if it were me,  I couldn’t  imagine anything worse than the entire world following my pregnancy; commenting on my bloated face and cankles and then having a go if I happened to get someone to style my hair nicely; preceding me to my own labour suite; camping outside alongside the full glare of the world’s media; and every tom, dick and prince Harry commenting on what might be going on as I go through an intensely private experience.

Then, having to display my public property baby, to that same onslaught of press and busybody-ness, and having fekkin Kay Burley sticking her dickhead nose in.


I tell you what… Nice one, Kate and Wills. Congrats on your second baby, particularly after an SPD pregnancy. Now, take my 56p with my best wishes, and go and enjoy your little family. I won’t bother you… You won’t bother me… And the world turns.