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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Theme Park Etiquette, Continental Differences and a Question of Rucksacks

Day 11

You know by now that I’m in Disneyland Paris, and that I’m having a whale of a time, so I’m not going to go into the minutae of my experiences today – essentially, if you love Disney, you’ll love Disneyland, and if you don’t, well – then, you won’t!

So, even though today included Peter Pan, a trolley bus ride, the sleeping dragon,  Animagique, Armageddon FX, The Backlot Tour, Stitch Live, Ratatouille, Crush’s Coaster, RC Racer, Slinky Dog, Monsters Inc, The Tower of Terror and Phantom Manor, I’m going to focus on other things…namely, theme park survival and bloody Europeans.

(Disclaimer: I realise that I am English and from Great Britain, and am, therefore, European, but this is about continental Europe, and “celebrating” the difference.)

(Disclaimer 2: I am possibly being a tad xenophobic here. Please don’t be offended. Some British people are terribly shitty too… It’s just that mainly, it was Europeans that I came across today.)

Having been to various parts of France several times, and visited, amongst other places, Germany, Italy, Spain, Greece, Hungary and Corsica, I don’t feel as though I’m a complete stranger to being amongst Europeans. Equally, I have been to Disneyland in California, Disney World Resort in  Florida, and am currently on my 5th visit to Disneyland Paris, so I am fairly well versed in the art of a Disney survival.

However, I still get just a little hacked off at the bloody rudeness that seems par for the course in a Disney Paris day.

Look, I know that Europeans don’t have a concept of queuing in the way that we stoic English people do, and I can tolerate the pushing in and the laissez-faire attitude that prevails, to some extent, but after almost two weeks in France ( and three days in Disney) it is starting to, frankly, get on my jolly well nerves.

Thing is, you can forget all about the concept of “personal space” when you’re here, as it doesn’t bloody well exist. That piece of the universe that you are (albeit temporarily) occupying? It’s not yours. It’s, basically, fair game. And just because your actual body is in that actual space, don’t for one single second assume that you are entitled to remain in it, because you’re not. People can, and will, attempt to occupy that same space at any and all times (and here’s the mind blowing bit to an English person like myself) whether you are in it already, or not. So you can either vacate it, or share it (physics notwithstanding), the latter option usually requiring some kind of time travel, or quantum leaping or something. Because these people will mow you down if you don’t move. And they won’t give a shiny shite. 

And, quite honestly, I have moved on from my ever-so-polite “excuse moi” requests to strangers, to a full-blown “fekkin move” demand.

So, just in case any of the continental Europeans who I met today are reading this, here’s some advice for you from the black-haired, quite angry looking, middle aged woman with the passive-aggressive muttering:

1) If you want to get past me, just say “excuse me” or “pardon” or whatever it is in your language, and I will happily, gladly and even joyfully skip out of your way, and allow you to pass. You will smile, I will smile and the world will seem that little bit lighter. Don’t, however, walk into me and keep on moving, as though you haven’t just barreled me over; don’t knock me out of the way with your bloody rucksack/balloon/bag/other; don’t – ever – run over my feet with your pushchair and continue to roll, as though it were a tank or similar; and don’t flick your fekkin fag ash over any part of me.  For these things, in any and all combinations, only serve to piss me off, to piss you off and to increase exponentially the headache-to-Brit quota in the park. The world is nicer if we simply acknowledge each other

Addendum to point 1: if you have done any of those things accidentally, simply say “sorry” or equivalent, and don’t just storm off as though it was me that was in the wrong simply by existing/breathing.

2) If you are waiting to go into the toilet cubicle, then please stand away from the frigging door. That way,  I can get out and you can go in and the earth will continue to turn. If you don’t move away from the frigging door then we have a bottleneck situation, where I can’t leave, you can’t enter and there’s just no point in either of us existing any more. This also goes for all of you people who want to board the trolley buses while I am exiting, and anyone standing in a doorway or exit. FRIGGING MOVE, YOU MORONS.

3) There is a special place in hell reserved for you people who are walking along, contributing to the healthy flow of pedestrian traffic, and who suddenly stop. If you’re going to stop, either take a cursory glance around to make sure there isn’t someone directly behind you (there usually is), or move to the side, safe in the assumption that in Europe’s busiest theme park, there is a small likelihood that you will not be on your own.

Either way, if you suddenly stop to look in your bag/talk to someone/take a selfie/other, then do not look at me as though I am the devil incarnate, when I walk into you. It’s going to happen, isn’t it, you twat?

4) if you want to photograph fekkin everything something, then just make sure that you’re not walking across and in front of someone (see points 1 & 3). Especially don’t take videos by criss-crossing and weaving your way sideways to the flow of traffic. This makes you a bellend, and I am likely to photobomb you, in a very British way.

5) And, in its own special category: rucksacks.

Right, I have a question for you. This is for anyone who it applies to, and specifically to the many people I saw today. What the hell is in your rucksack?

Seriously, though? I’m not talking abou small rucksacks, or bags – obviously it’s sensible to have a bag. I’m talking about full-on, luggage-style rucksacks. What’s in them? It’s not food. Bags are X-rayed before they come into the parks, and I’ve seen several people forced to throw picnics away at the gate. It’s not jackets, caps, sunglasses or cameras, because serial rucksack offenders usually have those as well.

What is in them? Are you people setting up tents or something?

On this holiday, there are 3 of us -I have a small handbag with the tickets, sunglasses and a camera. The husband carries Smallboy’s tiny rucksack. It has wet wipes, sun cream and water. We carry money on our persons. We wear our hats.

What else do people need, in such vast quantities?

Some families have several rucksacks. Look:

  Three rucksacks. Three adults and two children. Cameras, hats and jackets stored separately. What is in these beasts?

  

Two adults. Two rucksacks. No kids. Wtf?

 

What is this guy hauling? 

Genuinely interested in finding out.

The other thing about rucksacks is that they virtually double your body mass (I’m sorry for going on about this, but it has really become something of a mission.) People don’t seem to realise that they are manoeuvring around as wide-loads, with the rucksack. You can’t just be swinging round willy nilly – you’re going to smack someone in the chops. And in a queue situation, your rucksack is literally increasing thg queue time for the normal people. Not to mention the fact that you people can’t get though the barriers within the queue, without a massive amount of fuss, and getting on the ride and sodding storing the thing takes an extra 30 seconds per rucksacker. Multiply this up and the 70 minute queue time becomes 85.

So, be prepared to provide me with a detailed inventory of contents, or leave the frigger at home.

6) Queueing. Yes, these European Theme Parker’s queue jump. Yes, we knew this in advance. Yes, we realise it’s cultural. But, frankly, I cannot get my head around the fact that it’s anything other than bloody rudeness. If you see someone standing in front of you, who has been waiting for longer than you, then it’s their turn first, you ignorant shite bag. This goes for rides, toilet queues, parades….anything. Simply seeing a teeny weeny space in front of someone, and assuming you are entitled to fill it (see point 1) makes you a knob.

Quite honestly, the melee of people waiting for the entrance turnstiles to open, was akin to some kind of battle field or Black Friday sale. If we all wait our turns, life is smoother.

7) And, while I’m at it, there are more than two speeds. Slower-than-a-snail and Lightning-McQueen’s-faster-brother are not the only options. It is perfectly acceptable to walk at a tolerable pace. The afore mentioned two speeds, are largely to blame for points 1 and 3 above.

8) PDAs

Look – I like a bit of love, me. I’m not a cynic. But there is a time and a place, people, for gratuitous displays of carnal desire. The queue for the Tower of Terror at 4:20pm is neither of those things.

I was queuing on my own (the husband stayed with Smallboy, who was categorically NOT going to go anywhere near that ride) and had a French couple with three kids in front of me, and a Spanish couple with one child behind me. Those two couples were constantly going at it with the full-on tonsil tennis. Twice I had to move the couple in front on, and how the couple behind me managed to hold off without booking themselves a room, I just don’t know. I’m happy they were in love. Really. But, I don’t need to see the bulge of a guy’s tongue from the outside of his wife’s cheek. And as for the roaming hands – I felt like I was in some 18 movie audience, with a row of horny teenagers. But the worse part of it was, the French couple’s youngest daughter (presumably in the absence of any parental attention) felt the need to entertain me throughout the queue. She danced, she sang, she jumped up and down, she span, she swang, she chatted in French… It was hugely annoying, particularly as I’d managed to bag half an hour off from my own little bundle of firecrackers.

So – PDAs? Non!

And now I have resolved all of the issues that have been weighing down heavily on me in the 28 degree heat, I feel as though we are all closer as a continent.

Bon Nuit, Europe…

Threading. It’s the future.

photo

Well, everybody – big news on the Bectora front – I had my eyebrows threaded this week for the first time in a while.

If you don’t know what eyebrow threading is, let me bring you up to speed…

Threading is an alternative to plucking, where a length of cotton is doubled over and sort-of twisted, and then you pay another person to use this cotton to grab a whole bunch of hairs from your eyelid, and yank them out at break-neck speed.

Truth is that it’s quick and effective. It hurts less than waxing, and takes much less time than tweezing, but good lord, we do some things to ourselves in the name of vanity.

I’ve had mine threaded about half a dozen times, and each time, my eyelid and the surrounding areas are a little sore and a little tender for about 12 hours afterwards, and my eyes water like I’ve been peeling onions while watching Blood Brothers – but here’s the thing:

I kinda like the pain.

It gets addictive. It’s over in moments, and when it’s finished, your whole face changes. The little specks of blood that persist are merely testament to your commitment to the art, and because you have been sitting in a salon chair under some treatment lights, you almost feel that you’ve been pampered and earned it.

So, I wholeheartedly recommend threading. I almost look forward to the hairs growing back, so I can have another go, and I have a rather sadistic desire to watch someone with really bushy brows go through it.

But I draw the line at upper lip and chinny-chin-chin.

 

I’m not an idiot!