Thursday, 6 March 2014

I WILL stay off pinterest and get this post written.


Wow, it's been a while!... I think I always start my posts with an apology for my absence so screw it, you're not getting one this time! Joking aside, life has just gotten in the way of blogging over the last few months, and, in all honesty, I really couldn't be arsed with writing about everything when I was already living it! That's a good start isn't it!?

Right, let's see... What has happened since my last post!?...

It's been almost two years of trying for our little bambino now, and sadly, we are still baby-less. It's still, and as long as we are without-child, will always be, a gigantic difficulty to come to terms with. I struggle every single day with the fact my body will not do what it is supposed to do. I cannot conceive naturally. My left fallopian tube is blocked, it's still majorly all 'stuck up' on the left side, and I'm not ovulating. But, on the positive side, everything is working as it should be. My ovaries, though covered with endometriosis, scarring and adhesions, are working as they should be and my womb is healthy, which is fantastic news. It's just the rest of it that isn't. I've been seeing a counsellor over the last few months, through the fertility centre, and she has been fantastic. But, until I have that baby in my arms, my mind isn't going to clear. Even writing this, my heart breaks. You will never be able to understand the feeling inside me unless you have been in this position. It's indescribable... A longing, aching void that yearns for this one thing it can't have. I am empty. Just a dark space where nothing but hatred and bitterness grows. I've worked hard with my counsellor and psychologist to try and overcome this feeling, and I'm pretty proud to say that, on the most part, things have been much easier. I've been able to go and visit our friends babies over the last few months and I've managed to escape a lot of the bitterness I previously felt towards anyone with a baby. In a way though, I feel like I've kind of come 360 and now, sometimes, I feel a little obsessed with all things pregnancy. It's hard to put it in to words... I guess all I'm trying to say is that I want a baby. And right now, it's the be all and end all of everything.

We have been super lucky to be granted the chance of IVF and we've both been having various tests leading up to our first (and, hopefully, only) round of IVF over the last few months. I've had 2 follicle - HANG ON! Just in case you are like me and have no idea what a follicle is, follicles are like little sacks in the ovaries which produce eggs each month and basically you want good sized follicles and the more you have the better - unless you have a ridiculous amount because that's bad! I think they grow and then disintegrate because you get new follicles every month... Right, so I've had 2 follicle counts: the first showed I had 12 (6 in each ovary) and our doctor said this is quite low but she was expecting it would be much lower and that 12 is pretty good for someone with severe endometriosis. My second count showed that this had gone down and now I only have 4 in each ovary. I know it can fluctuate but I'd be lying if I said this hadn't bothered me - even if the nurse told me not to worry! Anyway, tomorrow is the first big day in our IVF journey. I go in for a 'mock embryo transfer' to basically see if I can get through the real thing. I haven't read in to it too much but this is where they will be inserting a catheter in to my womb, while I lay there panicking and trying not to pass out!! I'm dreading it. I even asked the boy Danny if he would go in for me, but (in his words) he hasn't "got the right holes"! We then start with all our injections on Sunday so we also have an injection lesson tomorrow too! The whole process takes around a month so by mid April, we shall know - one way or another. I've been really focused on the goal - getting pregnant - and haven't really thought about anything past this or what would happen if we are unsuccessful... I'm not sure I want to think about that. Scrub that, I don't want to think about that.

It's a crazy thought that in just over a month, I could be a mama to a tiny, tiny, weenie, little baby. And what feels strangest, is that this little baby won't be conceived in an intimate, loving moment between us. This process is so public. Even without me writing about it, there are so many people involved. Other people, 'normal' people, get to make a baby by having this mad, passionate, intimate sex... And we don't have that because it doesn't work for us. We have doctors and science helping us to produce this baby. I know it's not meant to matter how we get a baby, as long as we get one, but I wanted so badly for it to just be us, for it just to be a product of our everlasting love and commitment to one another. And, yes, in one way it is, but it seems so cold and harsh an environment, a hospital laboratory. It doesn't matter in the grand scheme of things, but it's all I can think about. Just another thing to kick myself about. To blame my useless body for. And, I don't think any amount of counselling will ever stop me from feeling so guilty for not being able to do something which, as a woman, should be natural. How are you ever supposed to stop feeling that?

Ugh. The tears are here! I knew that getting back to my writing would upset me, because it brings everything to the forefront of the mind again and I think that's why I've neglected the blog for so long. But I can't hide forever.

In other news (some exciting and happy news now!), me and Danny finally have our own house!! We moved in to a beautiful end of terrace house, in a lovely little village not far from where we were previously, around 3 weeks ago now and we are really happy here. It had become a huge struggle living on top of each other everyday in one room, walking around like crabs because there was so much stuff in the room and being so dependent on others to get me anywhere - not mentioning all the belongings we had in storage at 4 different houses! It finally dawned on us that my situation isn't changing and if we were to wait for me to get back to work then we would be waiting a very long time. It all became too much, and in December we made the decision to start looking at our options. Initially we looked in to council housing but we discovered that was as easy an option as finding a private rental so, two weeks after starting the search, we found our perfect house. We were all set on buying a place a few years back but obviously, in this situation, that's not even an option for us right now, so we are renting. It's going to be a struggle for me financially, and as you've probably gathered, it will be done on benefits (on my side). Danny had finally been given his promotion at work in January and was given a hefty salary increase which meant he could live more than comfortably, but there was no way he could support the both of us - not that I would have ever, ever, ever asked him to! - and since I'm still in no position to return to work, it was the only option. Think of that what you will. Thankfully, and extremely luckily, we had already bought the main bulk of the items we needed for the house and had our savings put aside for everything else, so buying the remainder of the items has been somewhat easy. I moan about having had to wait all these years for our house, but at least that time was spent productively. It would have cost an absolute fortune to start from scratch!! So, here we are. Daisy moved in last week and she's settled in really quickly. We also have friends in the village, there are a few necessary shops here and it's got great access to public transport for me so I've already managed to gain a little independence. 

As for the benefits, I've had to apply to the courts for a tribunal because my last assessment moved me from 'support group' status to the 'work related activity group' again! I appealed against this decision, since my situation has not changed at all, but they ruled against me and now I'm trying to live on a lower amount of money each week which is proving rather difficult. My problem isn't with the money though, it's the fact I just cannot go out to work yet. I'm so fed up of having to go through this every 6 months when I have a disease that will be here for the rest of my life! I'm not going to say anything else on the matter because it makes me angry so, please just keep your fingers crossed for me because the last thing I need right now is their mandatory work making my health matters worse than they already are.

As for my endometriosis, well, things have been really all over the place. When I last posted, I'd recently started taking 30mg Duloxetine (Cymbalta) for my depression. I had a rather big break down, and I found myself at my lowest point. I wanted to end everything. My psychologist actually called my doctor while I was with her and got me seen first thing the next morning and my prescription was then upped to 60mg a day. After that episode, and with the help of the tablets, my mind levelled out again and I felt pretty good. Unfortunately, the tablets made my endometriosis flare up and by October/November time, I was in a really bad way with the pain. I came off the tablets and went back to Citalopram 40mg and the pain subsided again to a 'normal' level (for me anyway!). 

My periods have continued to be very up and down, some months 2 weeks early, some 2 weeks late, others barely anything, while another time heavy as anything and now I'm left not having a clue what to expect - though, strangely, they seem to have levelled out more recently and I'm back to a rough 28 day cycle, give or take a day or two. Rough being the operative word! I really never know where I am with them though and my pain levels have been as up and down as my periods have. With moving house, I think I've pushed through a lot of the pain and had things to focus on, but that soon caught up with me and over the past week things have been difficult again. 

I've been finding that my pain has developed somewhat and I now struggle in a lot more ways than I once did. Little things like my hips hurting more, my hands not working how hey should with not being able to grip properly, aching all over, this everlasting exhaustion and aches and pains everywhere all the time. I've been looking in to Fibromyalgia a lot over the last few months and I really do think that this is could be the answer to my developing problems. I have every symptom of it and it would explain a lot of the things that I've been putting down to tablets or my endometriosis, like my twitching. My hips have been the biggest problem though. The burning in them is often unbearable, with or without any pressure on them they feel like they are on fire internally. I brought this up with my physiotherapist and she believes I have a problem with my sciatic nerve. I also mentioned it at my most recent pain management appointment and my doctor said it was all because of the way I was sitting during the appointment. Ridiculous. Anyway, I'm back to square one now because no one will help me. They just think it's muscle problems because of how little exercise I'm able to do. It's so frustrating and I'm left just following their instructions and getting on as best as I can in the mean time. The 'problem' really is that while we are trying for a baby, my endometriosis and every other ache and pain has had to be put aside because I can't start any new medication and therefore cannot be treated for anything. But then, you know what they say - pregnancy can help endometriosis!

Anyway, that's the big update! A bit of a jumble of rants but at least you get an idea of what's happening.

It's Endometriosis Awareness week this week (3rd-9th March) - have you been doing anything to help get awareness of this disease out there? I watched a wonderful interview on (UK) television the other day by the young ambassador for Endometriosis UK, Alice Smith, who was talking about her experiences with the disease on 'This Morning'. In case you missed it, or you're not in the UK, you can catch her interview here (although I'm not 100% certain this will work outside of the UK). 

Also folks, you should have now heard about the Million Women March and if you haven't, well, listen up!

Image courtesy of http://endometriosis-uk.org/civicrm/event/info?reset=1&id=54#.UxibXD80FKp
On 13th March 2014, millions of women will be taking part in a worldwide march to raise awareness of endometriosis. In a bid to turn back the tides of misinformation and let the world know that endometriosis is a serious disease with severe medical consequences if left untreated, these wonderful people, our endo-sisters, will be marching for awareness. The official UK Million Woman March will take place in Kensington Gardens, London on Thursday 13th March 2014 between 12:00-15:00pm but if, like me, you cannot attend the event but would still like to help, you can find out more information at Endometriosis UK or at the official Endometriosis Worldwide March sites.

Anyway, I better go and make myself pretty for Danny... I've been sat on the sofa all day in my pyjamas writing this and haven't gotten anything else done! Will update you all as soon as possible but thank you for reading!

S xxx

6 comments:

  1. Hi Shireen Welcome Back ! I was diagnosed with Endo when I was 18 now 26 and married ! We haven't been "trying" yet but when the time comes or even the thought of it I go into shock of what might happen and if the journey will be rough. It's hard to read your struggle but you sound like a fighter =) and I wish you the best =)
    You have endo but you are not the endo you are much more =)
    M
    Simply Sutter

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  2. Great to see you back, and congratulations on your new home, a new space that's all your own will make a huge difference.

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  3. All of those emotions you are feeling about not being able to get pregnant I felt and still feel. I had a hyster a year ago in April and it was absolutely the hardest decision I have ever had to make. I'm relieved and happy that I don't have to live with the pain, physical and emotional, of the endo anymore, but there are times that I sit and wonder if I made the right decision, especially after my sister told me she was prego the natural way after drs told her it would never happen. Hoping for the best for you!!

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  4. Welcome back, and good luck. I too have endo(stage 4) and will being getting ready for my first IVF cycle with in the next couple of months. I know exactly how you are feeling but keep your head up:)

    xo
    LesliMarie
    www.linenandtulle.com

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  5. Shreen,
    I'll say this next time I see you anyway but just wanted to say I love reading your blog, every post has brought me to tears at some poiny and you are so brave to share your story with people, so many people would bury their head and hide but you speak out to raise peoples awarness and understanding of what you and many other women go through.
    im so glad I know you and cant wait for the day I get to give yours and dannys little prince or princess a cuddle and until that day you can borrow mine for as many hugs and kisses as you need.

    Much love from me.

    Tsunami xxxx

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  6. Hi Shireen,
    I just started reading your blog and while reading it I am just like - oh my god, so it is all related in the endometriosis world. I was diagnosed yonks ago when I was 14/15 and had it whipped out the first time when I was 16. I'm now almost 21 and it is a b****. I get the same pains you describe, the burning feeling in your muscles. Sometimes it feels like it's radiating down your bones right? I get mine in my hips and it feels like the burning pain runs down my thighs and my knees and ankles burn like crazy. My mother and I have ton a ton of digging and other women have commented on the same shitty feeling and there isn't much that can be done about it - shit I know. I did take a muscle relaxant for a while which sometimes helped when it was in my back or up around my shoulders and arms but nothing really helps with the hips. I hope you and your partner are successful with your IVF, having a baby can sometimes help get rid of endometriosis (so weird but apparently true) :D So I hope it all works out for you too.

    Catney/Courtney
    xo

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