Tuesday 7 April 2009

No title? Um...

My time at home seems to be split three ways, between being asleep, being on the sofa with both legs up on a foot stool (very comfortable) and being on the floor. The long-awaited hospital appointment is next week. And I still haven't had a letter from them regarding a pelvic scan. That I've already had one at a different - and my local - hospital, surely isn't the point. Is it? I'm not particularly looking forward to it. If it's anything like the last one, I'll get no definitive answer. I'll likely be another patient, who'll be seen in another 4-6 weeks, to give it a chance to "settle down". I shall, at this point, reiterate that I am not doing this blog to complain. In this instance, however, I am. This is because the times I've been told to [sic] "give it more time" would make me rich, if only the ones saying it had given me a pound each time they said it... I'm not, because they haven't but... the point is this: Mirena is not going to settle down. These pains are not going to stop in a few weeks.

Today, I ended up on the floor (as an attractive lump of person, huffing and puffing, groaning and moaning - and really not in a good way... - on the floor, cats walking by giving me shifty "what's she doing?" looks) a total of 5 times, each for at least 2 minutes. I only got up 4 times. OK, that's not true, but the rest is. It was 5 times.
The thing is... I understand people - family, friends and indeed strangers who take time to type and send comments and I do appreciate what they say and that they've said it - saying "chin up" and encouraging me to be confident about myself and to be more positive about things... but, as far as I'm aware, they don't understand what happens to me (and indeed, other women and girls), regarding the pain. Very few people have seen how I am when the pain hits. Pain is starting to annoy me now, the word, I mean. It's just not even close to the..... ugh, "pain".

What makes me particularly angry, is that I have had no definitive answer or proper explanation for what I feel each day, period or no period.
And the kidney pains? Something to do with blood going "the wrong way", therefore causing minor blockages in the tract, therefore causing pain.

Double you tee eff? I'm not bleeding, currently, so WHAT?

I've been patronised and had doctors condescend me, ignore me when I've asked them questions, been called "darling" by one. I didn't like her. Actually, she was the one who did all the aforementioned in the first sentence of this paragraph.
Another ignored me: nice doctor at the first appointment; mean doctor at the second appointment.

Sometimes, the way some doctors speak to you is so insulting, so very offensive. They assume you have no idea what you're talking about, that when you tell them how you feel, they're just words being spoken and you're just a name on a list. You go there, go to them because you need help, sometimes desperate for even a slight improvement but often, you get nothing. It's rude, insensitive and demeaning.

I shan't accept an "urgent" appointment, because that means waiting four weeks, potentially.

I shan't accept "Leave it a bit longer" because I can't do this anymore. I shall insist on Mirena being removed, forthwith. But not there, and then, in the room, because that isn't going to happen. So, not really forthwith. But, y'know... soon.

I want to know what's going on in there. Surely - and DO please correct me if I am wrong - something must be happening which shouldn't on account of all these feelings I get. I can feel the Mirena when I move, I can feel the agony (genuinely agony, not just a dramatic word for effect, I promise you) of it pressing on something in there. I need to know what's wrong with me. Tablets and painkillers can only do so much. I don't want more painkillers, I want to know what's wrong. I don't want to take all these codeine tablets for days and months on end.
To unavoidably use that horrid cliche, "for all I know", my innards could be badly damaged already and could be getting worse. I might be wrong, I understand that but if I am, TELL ME WHAT IS WRONG because, so far, it's NOT. GOOD. ENOUGH.

*Deep breath*

I think I have mastered the prune-to-codeine ratio. I'm currently at two prunes per dose, which is, effectively, a prune per tablet. Once opened, the prunes must be eaten within seven days. And have to be refrigerated once opened. I shall try. And they are.
My Mum got two MORE lots of flowers yesterday, another one today. In all, she has received 9 lots of "get well" bundles of kindness. And a good supply of cards. Between us, we're quite useless. She can't vacuum for stretching her wound, I can't do it for the movement causes immense ARGHHH. I can sort the dishwasher, though... plates are cheap to replace, aren't they? Matalan, Sainsbury's, other places, they do cheap plain kitchenalia. That's an eBay category. Ooh, eBay...


  1. I'm back reading your blog as a friend of LL. I just wanted to say you really are not alone; i know the curled up codeine, mefanamic acid, transexamic acid, wheat bag, hot water bottle, not wanting to move days all too well. I also know consultants who say to just get on with it, that some women have a low pain threshold (yes, I nearly punched him) and that we just need to 'deal with it' all too well. I hope you find some answers, some comfort, and some relief from somewhere.
    Diagnosis is difficult but is something you have to push and push for, and is worth it in the end.
    Comforting, warming, unknotting thoughts,
    Suze xxxx

  2. Ohh Suze, you sweet lady. Thank-you for your kind words. It angers me that so many girls and women aren't listened to like we should be. Bah.

    Low pain threshold? Ooh that's so insulting, isn't it?
    I'm so sorry you've had trouble and pain and hope you're OK with whatever you have to deal with, too.


  3. I am good, at the moment. Am fortunate enough to have fallen pregnant so a good 9 month break from pain.
    FYI I did, after shitty consultants, ultrasounds etc etc finally get a diagnosis of endometriosis and adenomyosis. Not that a diagnosis helps much but at least I'm no longer told it's in my head (I too was given the perhaps you should see a psychologist/psychiatrist line. They are like broken records).
    Just started following you on Twitter... I'm Sbry...
    Many soothing hugs xxx

  4. Ohh that you are pregnant with endometriosis AND adenomyosis makes me smile, even though I don't know you. I know one of those can make conception *really tough but having both? Huzzah for you!! :D


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