So I’m led in bed thinking I really should be asleep but I’m wide awake after reading quite an interesting and quite honest blog and its really made me think about putting my own thoughts and feelings down in writing. Don’t get me wrong I’m not a writer by any stretch of anyone’s imagination in fact most of this will be grammatically wrong but sometimes that doesn’t matter, I’ll also probably waffle on as I tend to do that!
As mentioned I’m led in bed thinking I really shoud be asleep, I’m back at work tomorrow after just over 2 weeks off after another laparoscopy. 2nd gynae laparoscopy in 16 months, 3rd op if you include having an unscheduled operation to remove my appendix in April. This times op was to remove more tissue they couldn’t get to last time, simple in theory but my body doesn’t do simple, so add in the removal of 2 cysts one on each ovary plus them finding part of my back passage was actually wedged under my womb then some unexpected bleeding, it turned into something a lot more than simple. Dont get me wrong I’m getting used to the whole things are not simple thing now, I say this after being put antibiotics today for an infection in my belly button from my stitches! I know I’m not the only person things are not simple for, there’s millions of women with endometriosis, millions coping with the pain and discomfort associated with this condition but knowing this should maker it comforting but instead its actually more lonely. The way I see it there is always someone who’s in a worse position, in more pain, having more issues, going through a tougher time so I should really be grateful for what I’ve got. Don’t get me wrong I am grateful, I have a loving boyfriend who although right now I could quite easily smother him with a pillow to drown out his snoring he’s been there by my side through it all and to be fair to him he’s had to deal with a lot the last few years. I’m grateful I have a good job and an understanding boss, I have fantastic family and friends who have helped but I’m wondering when the point will come when they’re sick of hearing the same old story, another op, more doctor and hospital appointments, more scans etc etc etc. God knows I’m sick of it so I must be like a broken old record! Its this aspect of things that’s the start of the loneliness of this rubbish disease, the fact that you have pains, bloating, aching and moodiness for the majority of each month and it doesn’t get any better or go away, its always there in the background whilst you try to live a normal life, put on a brave face when most of the time you just want to stay in bed and not face the world. It would actually be easier if endometriosis gave you symptoms like a rash, spots etc as this would make it easier to show everyone how often it affects everyday life, the fact that the symptoms are inside and you can’t actually show people makes it more difficult for some people to understand. The other aspect of loneliness comes in dealing with the other crappy aspect of this disease, infertility. I’m not actually totally infertile, I have a less than 5% chance of conceiving naturally, so some slight cat in hells chance is what they’re saying. Great but you know being pregnant is actually amazing for helping endometriosis don’t you know, great if you can! If you add in that the bf has a low sperm count too, that cat in hell has turned into the chance of seeing flying purple pigs!! I know others can’t conceive I’m not stupid but its not easy to deal with. I’ve always been one where I love my independence, career, sport so I’ve always told people I’m not bothered about marriage and kids but that’d been something I’ve done to keep people off my back the older I’ve got, as soon as you’ve been in a relationship for longer than a few years and start the decent towards 30 its expected you’ll have kids, get married but I’m not good with this pressure so I’ve basically created this I’m not bothered persona to stop the questions, pressure, especially when close friends have done both but deep down its something I’ve wanted at the right time. That time came about 2.5 years ago when I came off the pill. At first it scared me but as each month passed it was less about it happening and more about being scared if it would actually happen especially as each month I got more pains. After various water infections, scans, blood tests and my first lap that severe stage 4 endometriosis was diagnosed. It was like a kick in the stomach, I was put on zoladex injections and hrt for 6 months, I lasted 5 months after putting on a stone in weight, feeling sick everyday, hot sweats and generally being the biggest moody bitch ever, I just couldn’t cope. After things didn’t really get any better month my month, after more tests, colonoscopy etc my consultant decided it was time for another operation and referral for ivf, which takes us to this very moment. A whole 896 words to gety to this moment when I’m still sat wide awake thinking, probably over thinking things, mulling over everything I’m feeling. Feeling actual pain from the infection, a sense I’m letting my bf down as each month passes when things don’t happen but at same time feeling low myself as not only am I aching and in pain in general, its not happened to me when i want it to whilst still putting on my I’m not bothered persona to keep pressure off and putting on the brave face to hide the broken record. That’s when it doesn’t matter what you’ve got around you, you can have the greatest support needed you still feel lonely, you still want to cry and that’d the worst part of this horrible disease. People with endometriosis develop what my boss says a Chinese smile, as she says they could be stabbing you in the back but they will still smile at you, whilst you go through the daily pains, anguish and low points you put on a smile because you and only you fully understand what you are feeling.