Monday, 31 March 2014

3 weeks in.




Well, we are now a whole 3 weeks in to our first (and hopefully, only!) round of IVF! The last time I wrote, it was the day before I had my mock transfer. Everything went well with that and it literally only took a matter of minutes... But, boy, did it hurt!! It was done in the theatre but I was fully awake (unfortunately!). I'm glad Danny was there with me, holding my hand, and the nurses were great, reassuring me and passing me tissues when I burst in to tears! I felt really rough after the procedure and spent the rest of the day curled up on the sofa eating chocolate which I thought would help, but by the evening I felt terrible. That soon passed though and on the following Sunday (2 days later) I started with the first lot of drugs.


From the start up until just after my period started, I had to inject 0.5ml Suprecur in to the top of my leg every morning before 9am. This drug shuts everything down but I have also seen that it's a treatment used for endometriosis, which I didn't know beforehand. I felt the effects a few days in and my moods were all over the place - crying one moment, fiercely furious the next. Poor Danny definitely couldn't do anything right that week... Or the week after!! I also noticed my acne got much worse, my hot flushes got much worse and my pain got much worse. And the bruises on my poor leg... Ouucchh!


When my period started, I called the fertility centre and was booked in for a scan and blood test on day 4 of my period - which was last Monday. The scan showed that I had 12 follicles (6 in each ovary - up from 4 in each last time). Something I forgot to mention is that the nurse found a few cysts on my left ovary on the scan just prior to my mock transfer, but on last weeks scan she couldn't see these and they haven't been mentioned since so I'm hoping they've just popped and gone away! With everything looking 'normal', I had my Suprecur dosage reduced to 0.25ml per day and that evening I started my wonderful (!) Menopur injections. I have to mix 4 vials of powder with one vial of water (I haven't checked the actual measurements) and then inject any time between 6pm-11pm each day. The process is really arduous as you have to mix all the vials together by filling the syringe with the water, injecting it in to a bottle of powder, fill the syringe with the mixture again and inject it in to the next powder and so on until all the vials have been mixed and you have a syringe full of fluid. Anyway, I had my first injection last Monday evening while we were getting ready to go out to a concert in Nottingham (my first night out in months and months!). Almost immediately, the pain began. It felt horrible. Like a deep kick on my ovaries. I took a load of painkillers and then we had to leave but I didn't feel great from it still. The next day I was exhausted anyway so I just rested but I still didn't feel very good. I had my second injection in the evening and an hour or so afterwards I began to feel really bad. I had terrible stomach ache, like I had an upset stomach (but I didn't), I felt incredibly sick and completely not with it. I was in the bathroom and felt like I was about to collapse so I just about made it back to the bedroom and fell on the bed in a heap of tears. I couldn't even shout down to Danny for help though he came up to find me after a while and got me in to bed with a cup of tea and some chocolate. I felt completely weak and out of it. It seemed to ease a little the next day, after a very long sleep, and I continued with the injections until I had my next scan on Friday just gone. I told the nurse about my reaction then and it seems like my endometriosis has been reacting very badly to the drugs - but I just have to put up with it because it's either put up or stop the process! 


My scan went well on Friday, though it was very painful as I was so swollen and tender. It showed that I had 9 usable follicles in total - 7 in the left ovary and 2 in the right (the nurse said it's normal to have less on one side) which means the drugs are doing what they should be doing. I had to continue as normal with the drugs and then come back in today for my next scan and blood test. Today's scan showed an even better result. I now have 8 usable follicles in my left ovary and 2 in the right still, although another follicle is there but it's not at the size it should be so it won't be used. My follicles had to be in double digits with regards to the size by now and all of the usable ones are around 10/11/12mm which is perfect. Because of that, we now know everything will be going ahead as planned - another scan and blood test on Wednesday and Friday, then I go in for my egg retrieval on Monday next week. I also had a phone call from the hospital this afternoon saying I'm able to reduce my Menopur dosage to just two powders now so I'm hoping that will help the pain I've been in. 


I've been finding the whole process really difficult, physically and mentally. There is so much involved and there are no points at which you can just take a breath and relax. There is so, so much that could go wrong, at every single step. I'm trying to stay positive and I've even been gathering things for the nursery, but sometimes I feel totally stupid for doing that. There are so many women that IVF doesn't work for - why should it work for me? I don't know. I just want this to be over with and to know the outcome. For both of us. I know I'm not the only one struggling with all of this - even if he doesn't show it like I do.


During this time my mum and my little niece have been in hospital also, which I don't think helped my stress levels at all! Mum was in agony and was rushed in after we called an ambulance for her, but, after 4 days, 3 x-rays, 1 internal scan and countless blood tests, they discharged her as they couldn't find anything wrong. She is still in a lot of pain but all she can do is take pain relief medication and wait for an MRI. Merryn, my niece, was taken in the following week, after coming home from school and having tummy ache and sickness. The hospital thought she had an appendicitis but in the end it turned out she had a virus that mimics an appendicitis and luckily she was discharged the following day... Poor little thing.

I've had a few bridesmaid dress fittings recently as my oldest friend, Hayley, who I've known since 1995 is getting married in May. I cannot wait for the wedding as her and her partner have been engaged for 12 years I think it is now! Sadly, shortly after the first fitting the other month, when we had spent a morning together, her mama collapsed and was taken in to hospital. She was diagnosed with a benign brain tumour though Hayley has since informed me that they think the tumour has grown so they don't know if it may be cancerous. I saw her at the weekend and she has been having fits, blacking out and can't think or walk straight but she is in good spirits. The trouble is, now you would expect the hospital to be pushing everything through quickly to run tests and get it removed, but no! She has an appointment mid April, then another appointment at a different hospital just before the wedding and in the mean time just has to continue with her medication and carry on fitting and collapsing. It's always the case isn't it, that when you need the help from hospitals and doctors the most, they do nothing. I can't believe she is having to wait for so long with something so major! I just pray that she will be OK but it's so, so worrying.


On top of these worries, I had some really bad news regarding my benefits. I had applied for housing benefit in February, since I'm still unable to work, and had assumed I would be granted it because I'm receiving Employment and Support Allowance. But no. Because Danny had a pay rise in January and we are now living together, we are classed as a 'partnership' and therefore, I cannot get any financial help with regards to housing. Because of this, poor Danny is having to pay all the rent on is own and I'm covering the bills which leaves me with around £40 to spare a month. It's been a huge struggle for me as I basically can't even afford to pay halves on food or buy anything else we need for the house. Danny has been great about it all but I feel so guilty that his hard earned money has to pay for me. I just feel so stuck with it all.


My appeal to get me back in to 'support group' status has officially been sent off to the tribunal service now and I received a big pack of supporting evidence to back up the DWP/ATOS' decision the other day. It was quite unbelievable reading through it and seeing their thoughts on my health. The most unbelievable point is where they state that it's 'impossible' for me to have a period that would last 3 weeks because I would have to have blood transfusions if this was the case!! That just goes to show how little they understand this illness. I've bled for 6 months before so how can 3 weeks be an impossibility!!?? Anyway, I won't go in to detail as I can feel my blood boiling already, but now I have to wait around 23 weeks for my appeal date to come through and in the mean time, just put up with them treating me like shit. This is until December 13th anyway, because then, if I've not been moved to the support group, I will lose all financial help and have to wait 6 months before being able to re-apply for ESA. I refuse to give in though. They gave a lot of valid points in their paperwork which I agree with, but it feels like they don't believe a word I'm saying basically because they cannot see 'it' and have no evidence of me bleeding or wetting.... And yes, they have stated that they haven't seen evidence of this... I'm shaking my head right now in utter disbelief. I sometimes think this must all be a massive joke. I'm so stressed out with it all but there isn't a thing I can do but wait and hope I get to put my case across to someone who will actually listen to me.


Anyway, this post has taken me all day to write and I'm very tired and in a lot of pain, so I'm going to go and snuggle in bed now. If you have any words of wisdom for me, please let me know. I always try to not listen to world but right now I need all the encouragement and prayers I can get.


S.

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.
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