I’ve mentioned a couple of times I suffer from a condition called Endometriosis. It’s not a pleasant condition, and because it’s not really one of the more ‘trendy’ conditions, it’s not particularly well known. When I’m having an Endo attack, I’m not very pleasant either. In fact, I turn into a bitch from hell.
When I say it’s not one of the ‘trendy’ conditions, I don’t really know how to express what I mean without potentially upsetting a lot of people. No condition is pleasant – and I wouldn’t ever wish any condition on anyone. But the ‘hidden illnesses’ (regularly making the rounds on Facebook in various status updates and photos etc), often miss out Endo. Mainly because not a lot of people understand how horrible this particular condition can be.
Endo is mainly thought to affect women of a ‘certain age’ – you’re generally looking at women aged 35+. At one point it was practically impossible to get a diagnosis if you were younger than that. It was also widely thought that the condition goes away after you’ve had children. My so called ‘Specialist’ actually discharged me when I was pregnant with the female shaped monster. Another common misconception is that the condition is only painful while you’re ‘on’.
What a load of bollocks.
I have always had horrible periods. To the point where I was removed from a GCSE exam aged 16 because I was bent double with huge tears sloshing down onto the exam paper because of the amount of pain I was in. They have always been irregular. Both classic symptoms of Endo. When I’m due on my period and during it, my belly swells up so much, I look around four months pregnant.
I was diagnosed as having Endometriosis Adenomyosis when I was 24. Just before I received the results of the laparoscopy, my then (male) boss asked me if I had considered a hysterectomy so that I could attend work daily (It was a dead end job in a nasty call centre which I hated. Needless to say I didn’t stay working there much longer). The adenomyosis part of the diagnosis means that I have Endometriotial scarring inside my womb lining as well as on it (it’s more complicated than that, but that’s the easiest way I can express it. More info here).
Moving on almost 10 years since my diagnosis and two babies later, I’m in constant agony with the endo. I know it’s endo because the pain is very specific. Not something I can really describe, apart from it’s a burning sensation that gets deeper and more intense the longer it stays to play. An attack can start with a short stab of pain just below my right hip. It will then go away for a short while before coming back a little bit stronger. Then, in an almost playful way like hide and seek, the pain will come into my back, just below my kidneys, and intensify to something akin to somebody kneading that spot – but they’ve been doing it for too long and too hard. While that’s going on, I’ll get a spasm of sharp pain in my stomach that’s strong enough to make my eyes water along with the burning sensation on my right hip again.
This fun little cycle has been known to continue for around two weeks. It will start a couple of days before my period, last right through the bleeding and end a couple of days after. When the pain’s really really bad, I start throwing up. At the moment, it’s bad enough that the painkillers my GP has prescribed aren’t working anymore. I’m on tramadol (known in my house hold as tramalamadol for it’s slightly wappy making effect) and amitryptaline. Tonight, they’re succeeding in numbing the pain to a richter scale of seven, when normally the pain is off the scale. When I first started taking them, I was almost catatonic with the numbing effect. Now, you wouldn’t be able to tell that I’d had any.
I’m back at the hospital on Thursday to become re-acquainted with the Specialists, as everything else I’ve tried hasn’t worked. I had a coil fitted, which was supposed to stop the periods all together and make my life a happy, pain free one. It worked for one month. Ever since then, the endo’s got worse. Not better. My periods are as irregular as they ever were, my PMT can be explosive and the periods themselves are evil, long lasting and heavy. I got put on the pill to try to combat it. I forgot to take it. I tried to remember to take it, I really did, but when your morning routine is made up of trying to stop your autistic son from going into overload mode, it becomes a somewhat less priority. By the time I’ve remembered to take it, my next period is about to start and whole cycle starts again. I’m not even sure if lazering the endo is an option because it’s endo adeno. All I can do is wait and see what the consultants say – but rest assured if they say I should be cured because I have kids, there is every chance my crutches will end up wrapped in a knot somewhere they shouldn’t be.
Why am I writing this somewhat long, gory and graphic post of me at my worst? Well, March is Endometriosis Awareness Month – world wide. In the UK we’re concentrating on the 4th – 10th of March. Endo doesn’t just give women pain around their cycle and bad tempers – it causes sever depression (tick), pain when having sex (I’ll be honest here, I can’t remember the last time the hubby and I had sex when I wasn’t in complete and utter agony. Don’t blame him, I hide it from him well), infertility (I’m one of the lucky ones, and I count my blessings for my monsters hourly), bowl issues (tick), cystitis (cranberry juice is my best friend) and can lead to other conditions such as ovarian cancer in the worst cases. Endo scarring can also occur on the bowels, kidneys, lungs, intestines and pancreas.
So, next time you have your period (or your partner, wife, female colleague), spare a thought for what might be happening behind the painted smile. A hell of a lot of women with endo grin and bear it, believe me, I know. But, inside, they’re screaming.
Diary Of A Faker 