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.
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