Friday, 20 May 2016

Dorset and the rain.






Last week, we went on a little holiday down to Sandford, Dorset. Although we went away with my family last year, this was our first holiday with just us and Hunter and we were very excited about it. Unfortunately, the weather didn't really live up to our expectations and we pretty much had constant rain for the 5 days we were away! Typical, eh!? Thankfully, the sun came out of hiding on the Wednesday afternoon so we took a short trip over to Bournemouth where we visited the aquarium and had a nice meal and then after another good rain, we had a beautiful day of sunshine on the Thursday so we visited a local farm which had lots of different animals to see, tractor rides and different play areas. It was such a good day out and we managed to get back just in time before a massive storm started! It was still a lovely holiday though and it was so nice to get away. I think we will probably have to go back down that way at some point though because there were a lot of things we didn't get to see and do because of the weather.

I was thankful that I had a good pain week for our holiday and apart from a few minor aches, I was able to get out and about every day without any issues. However, this week has been another story. Does anyone else who takes Amitriptyline feel like they are on a constant rollercoaster? I thought with taking a new medication I'd feel a bit off and then things would settle down, but since starting this I've had really good weeks where I've almost felt 'normal' (or, what I imagine 'normal' feels like!) and then I'll have a really bad week where I'm completely exhausted, in pain almost every day, my emotions are all over the place and I'll feel sick and groggy. Is this what should be happening? I know this medication is used for pain relief but as an anti-depressant I imagined I'd be feeling on top of the world with it and yet I'm finding it quite the opposite in reality. I'm starting to see a correlation between my sleep and pain though now. When Hunter has a bad night and I'm awake nursing him, my pain and general grogginess is much worse the next day. But, if I get to sleep early and Hunter just has his normal wake up's and settles easily then I feel quite good the next day. Same thing applies if I've been busy on one day, I'll feel worse that night and the next day so I'll have a day of rest and then I feel better again. I guess it all goes back to learning how to 'pace' but it's difficult when you have a very energetic toddler in tow!

I have to admit, I've found it quite hard to get my head around having fibromyalgia. I've lived with endometriosis for so long now - over 20 years of my life! - that I feel like I know it inside and out and I spent a lot of time blaming all my other issues on my endo. But, now I've been diagnosed with fibro also, I don't really know what is down to what anymore. I've chased this diagnosis for years and I could have jumped for joy when I finally received confirmation of it, but it settled in later on and I've been feeling a little lost ever since. Do any of you ladies have any tips for dealing with both endometriosis and fibromyalgia? How do you distinguish between the two? Does one effect the other? I just feel quite bewildered by it all so I'd love to hear from you if you have any wise words to share on the matter! It feels odd not really knowing anything about the illness you have and none of the doctors I've seen have really been able to tell me that much and definitely nothing in regards to my endometriosis also. All I really know is that, for now anyway, my borderline osteoporosis is not causing any problems so I can put the issues surrounding my periods and abdominal pains down to my endometriosis, and the pains everywhere else down to fibromyalgia and the fatigue is just a symptom of both illnesses. I'll just ignore the big blurry bit in between!

My acne is also really bad at the moment. I say really bad, but I was watching a programme the other night which featured a girl with acne and her's was terrible so when I say really bad, it's not really that bad. But it is bad to me, and painful and in general I'm just really fed up of being a spotty 30 something year old. I wish I'd made the most of having clearer skin while I was pregnant - though on the most part my skin was recovering from the bad acne and to be fair, I did have a lot of other things to focus on during this time! I think the next step is probably medication but I can't do anything until Hunter stops breastfeeding. Maybe it will magically clear up by then... There is always hope!

This week is Mental Health Awareness week 2016 and although I feel pretty stable with regards to my mind right now, I wanted to point you all in the direction of one of my old posts Self Destruction, where I spoke about my experiences with self harm and depression. You can also read through my other posts on mental health by clicking here. I've had a tough couple of years and had a lot thrown my way, but I feel at my strongest now. I have a loving and supportive partner, a lovely home and the most longed for little miracle I could have ever wished for and, although my health is still up and down and I don't have any clue as to what will happen with work/money, I really feel quite balanced - minus those days this blummin' Amitriptyline makes me want to cry all day! That's not me, that's the medication! What I really want to say, is that it's OK to feel down and sad, and everything else. But, if those feelings are tipping you over the edge and you feel like they are becoming just a little bit too much, then seek some help. Whether that be talking to a friend, someone you've never met online or a qualified doctor - it might not stop those feelings, but it will definitely make you feel a little less disconnected from the world.

Before I go, I just want to take a moment to re-introduce myself in case any of you are new to reading EMLWY. I have updated the About section and mentioned bits here and there but just to put it out there again... Hello! I'm Shireen! I'm in my early 30's and I live in a small village in the Midlands, UK, with my partner, Danny and our little boy, Hunter. I've been with Danny for 6 years now although we were friends for a few years before that. It took us two years and a very uncomfortable round of IVF treatment to conceive Hunter, but he's now a very happy and healthy 16 month old. I've had endometriosis since I was 12 but only started having obvious problems when I was 21, which, luckily, led to a very quick diagnosis. I've had 4 surgeries for it, tried various treatments and nothing has yet helped it and those treatments have only led to me being diagnosed with borderline osteoporosis as well as fibromyalgia. I haven't worked since 2012, when I had a flare up and was unable to return to my job - which I was later made redundant from. I started blogging because I needed some support and in turn found that a lot of you also needed the same thing. I've had a bit of a break and now I'm back and I've got some hopes for this small space of mine. 

By the way, I'm wanting to write a few pieces but I need your help! I want to continue with the "My Story" series which showcased your personal experiences of living with endometriosis, so if you would like me to publish your story, or I've already posted your story and you'd like me to update it, then please email me! I also want to put together a post on endometriosis after pregnancy - specifically I want to hear from you if you've been diagnosed with and had problems only since giving birth. I follow a lot of mama's on Instagram who complain of terrible periods and pains post-birth and a lot of what they are experiencing sounds exactly like endometriosis to me. So I'd like to spread the word and write an article informing those who know nothing about endo, that what they are experiencing could indeed be endo and to get checked if anything they are feeling is abnormal to them. Please get in touch if you've been in this position. Likewise, if there is anything you want to read about, want to write a guest post, want to know about me, anything - get in touch! I want to take this space to the next level and make it not just about me, but about all of you too. You can find all my contact details in the Contact section at the top of the page or you can find me by clicking on one of the buttons on the left of the page under my mugshot! I really hope to hear from you soon!

S.

Friday, 13 May 2016

The tale of Baby Blasto.

I started writing this post over a year ago now - but thank goodness I did because else I wouldn't have been able to remember all the details about our IVF! This is going to be a long one, so grab yourself a cuppa and settle down for the tale of our Baby Blasto...


The last time I posted about our treatment way back in 2014, we were three weeks in, I was waiting for my next scan and everything else was going ahead as planned. We went in for the scan on Wednesday 2nd April (2014) and it was really positive news! I found out that I had 6 follicles that were perfect size wise (meaning, that they were in double digits, so anything over 10mm in size, each), 4 that were slightly behind (but may be OK in a few days) and a few small ones that wouldn't be used. Because of this, my egg retrieval was moved forward to the Friday and I took my last dose of Menopur that evening. I also had to take my refrigerated drugs at 9:30pm that night and then that was it for the injections.


While at the hospital, we also got asked if we wanted to take part in a trial which studies the role of endogenous cannabinoids (chemicals similar to cannabis but produced in the human body) in reproduction. We decided to go ahead and take part in the trial as not only would it help others going through IVF in the future, but also the doctors would be able to look a little more in depth at when would be the best time to transfer our embryos back in to my body. Plus, it only really involved a few extra blood tests!



On Friday 4th April we went in for the egg retrieval. I had a blood test for the trial first of all but then the rest of the morning flew by, and after I'd spent some time taking selfies in my hospital gown (to be fair this one was pretty fashionable as far as hospital gowns go!) and Danny had done his part *cough cough*, I was taken in to theatre and put under general anaesthetic while the doctors fished about inside me for some eggs! The recovery was easy afterwards and while having a delicious cup of hot tea, we were given the news that they had been able to retrieve 10 eggs. We were so happy. I was a little tender afterwards but that soon passed and the next morning we had the call we had been waiting for: 8 out of 10 eggs had fertilised and we had 8 chances left. 


The embryologists kept in touch with us everyday and on the Sunday they called to say that all of our embryos had developed more but one or two were looking stronger and better than others and some weren't looking very good so they wouldn't be using those. At this point, I was on the borderline for the transfer and so the embryologist wanted to see what the doctor who was running the trial thought and so we went back to the hospital on the Monday for another blood test to see if we would be able to transfer that day or have to wait until day 5, the Wednesday. Unfortunately, after a very long wait, we found out that the blood machine had broken and so we couldn't complete the rest of the trial! It was a little frustrating but overall a good thing because that meant that the transfer would be on day 5 and by then our embryos would be classed as 'blastocysts' which are more developed and therefore much stronger, more resistant, and, most importantly, more likely to attach.



Over the next few days the embryologist kept in touch and let us know that our embryos were developing nicely, and we went back in on Wednesday 9th April for the transfer. Now, I'm not going to beat about the bush... It bloody hurt!! Before the transfer, we met the embryologist and she explained to us that the blastocyst they had chosen to transfer was the strongest and most developed and they were going to keep an eye on the other remaining embryos to see if they could be frozen. I was a nervous wreck and although Danny was in the theatre with me, I couldn't relax enough for them to complete the procedure and they had to fetch my counsellor out of an appointment so she could come in and calm me down with some breathing techniques! She was absolutely amazing and she held my hand and talked me all the way through it and eventually the doctors managed to pop our one little blastocyst in to my uterus where 'he' would be left to burrow on down in to over the next 9 days. 

The day after the transfer, we were given some devastating news: none of our other embryos had made it to the freezing process. As the embryologists had been holding out for the blastocyst, the other embryos had suffered and they had blackened and died. We had gone from having 10 chances to everything being put on our little blastocyst surviving. It was a real blow and neither me nor Danny took the news well... Wow! It's tough reliving all this again. That was such a difficult day. We had to pull ourselves together though and concentrate on keeping our tiny little 'Baby Blasto' as safe as could be.


I didn't have to bed rest after the transfer but I had to be sensible about what I was doing - nothing strenuous so no shopping, hoovering, lifting or exercise etc. I did some very light housework on one day and definitely felt like I'd over done it so after that I spent most of my time just resting on the sofa.


9 days after the transfer, on Friday 18th April, we went back to the Fertility Centre for a pregnancy test. I had a blood test and they also did a 'normal' pregnancy test with a urine sample and after what felt like forever, we were called in to a little room where they gave us the news we had been waiting over 2 years for... I WAS PREGNANT! For the very first time in my life, I saw those two lines on a test. It was real! I squealed, burst in to tears and clutched at an emotional Danny. We couldn't believe it. All the tough times of the past few years, the emotional rollercoasters and physical challenges had paid off - it had worked!!


We still had another 7 days to wait after this though until we could really trust the tests. My HCG levels on that Friday were 129 and first thing on the following Friday, the 25th April, we went back to the hospital for another blood test. We finally got the results that afternoon and my HCG levels had risen to a whopping 2123! I was 100% pregnant and could put any thoughts of chemical and ectopic pregnancies right out of my head. We were having a baby!



I had to continue using my lovely Cyclogest progesterone pessaries until I was at least 12 weeks pregnant. These were absolutely the most disgusting part of the whole process! I had to insert one pessary in the morning and one at night and they were vile! But they obviously did the job and thickened the lining of my womb up lovely because, well, Baby Blasto is here!

During this time, my hormones started to run riot. A mixture of the IVF hormones wearing off, the challenge of trying to wean myself off all my antidepressants and painkillers, and a sudden influx of pregnancy hormones all mixed with general emotions left me a complete wreck! One minute I'd be on top of the world and the next I'd be struggling to stop the tears. I'd also started to feel the effects of pregnancy fatigue and the dreaded morning sickness.



On Tuesday 6th May, we went back to the Fertility Centre for our first 'real' baby scan. The nurse reminded us that things could still happen but, on that day, everything looked perfect. We found out that I was 6 weeks + 1 day pregnant and the most important thing, that our baby was alive and healthy! The picture is a little hard to make out, but the black shape is the gestational sack, then in the middle of that, the little white blob - the right side is the yolk sack and the little bit sticking up on the left is our baby! We saw 'his' tiny little heart beating away and it was incredible. We were discharged from the centre after the scan and I was put in to the care of a community midwife as well as a specialist IMPACT clinic at the hospital which deals with twin and high risk pregnancies. 

The following weeks were really tough with the nausea and I lost around half a stone because I just couldn't face any food. After the scan, I also started to feel a lot of pain but as it coincided with me trying to come off my Tramadol (etc) there wasn't really anything I could do but wait and see - especially since I hadn't had any bleeding (which was obviously a good sign). The pain was so bad that it would have me doubled up and barely able to move and I got very stressed out and down about it. I was sure that we had lost Baby Blasto. It was an agonising wait. I spoke to my doctor regularly and she supported me fully every step of the way with the reduction in my medication and eventually I saw my midwife when I was 11 weeks pregnant - though she didn't really put me at ease because she didn't know anything about endometriosis! 



My pains eventually started to get a little easier and we finally had our follow up scan at 14 weeks. I was terrified that something would be wrong, that Baby Blasto would have disappeared. But there 'he' was, fast asleep on the screen, with 'his' little heart pumping away like crazy. No one will ever know the relief I felt. 


Blasto started moving at 15 weeks - only a few days after the scan. It really was magical to feel those tiny little 'popcorn' movements and I felt so much better about everything because every movement only confirmed that our baby was healthy and happy. I attended the IMPACT clinic every few months and found out that I would have to be induced if Blasto hadn't arrived by our due date. 


Everything seemed to be going smoothly, but at 19 weeks I started getting Braxton Hicks. They were really painful and made me feel completely exhausted with the constant tightening's. 


On 12th August we had our 20 week scan and we found out that Baby Blasto was a beautiful and very lively boy! Though the sonographer actually told us before we asked so it was a good job we wanted to know! The coming weeks were much easier. I didn't have much of a bump and I spent most of my time comparing it to other mamas-to-be bumps but I knew he was OK so deep down that's all that really mattered. 


At 29 weeks we went for a HD Live Scan and saw our perfect little fella (yes, we did double check he was a he!) moving around. It was absolutely incredible. We were given scan photos and a DVD of the entire scan and we watched it almost nightly until his arrival!


Unfortunately, I woke up early the next morning not feeling right. I couldn't really put my finger on what was wrong but I was in a lot of pain. I tried a warm bath, paracetamol, rest, moving around but nothing was easing it and in the early hours of the next morning Danny took me to the hospital. I was monitored for hours, scanned and swabbed and we were then told I had tested positive for pre-term labour. It was an odd moment really because we were both exhausted and it didn't really sink in until they told us that I had to stay in because our baby might arrive at any moment! They didn't have any beds available with the neonatal care the baby would need so I was transferred to Sheffield, 67 miles away. I was taken by ambulance with a midwife in case Blasto arrived mid-journey and I was incredibly anxious by the time we arrived. I had steroid injections to make Blasto's lungs strong, should he arrive, and was hooked up to various drips and monitors. I hadn't dilated at all so I was told it could be a false-positive and our baby was fine - even if I was in a lot of pain.

That night, with Danny sleeping on a mattress on the floor, I finished the drip that would try and hold labour at bay and I was moved to a private room (a perk of living so far away!) on an antenatal ward while we waited to see if anything happened. 



I stayed here for the next week, hooked up to drips and having all manner of examinations, tests, injections and scans. A research study we took part in showed that my fibronectin levels were negative - to test positive for pre-term labour these levels needed to be above 50 but mine were only at 3! This along with my uterus showing no sign of opening was great news. They kept me in for further monitoring because I was still in pain and I felt like I'd really achieved something when I reached 30 weeks. Though this quickly turned to disappointment when I found out the pains and general icky feelings I was having were contractions and I hadn't even realised. I was put back under threatened pre-term labour again and monitored closely but I wasn't dilating and Blasto seemed happy where he was. This was the first time my endometriosis was mentioned as being the cause of my problems. I spoke to a midwife who had gone through something similar and she told me all about how endometriosis can 'irritate' the womb and cause such issues. Though, to be honest, no one seemed to know what the heck was going on!

I needed to have a 24 hour period with no contractions before they would allow me to go home - however, they were coming in strong at 5 minute intervals and were starting to exhaust our little one. He was so sleepy that I had to have extra monitoring. A week later, still contracting and none the wiser as to why this was happening, I was allowed home. Probably only because I nagged at them so much to let me go though. I was told to take Co-codamol and to go straight back to hospital if anything else happened. I was over the moon to get back home.



Unfortunately, the next morning, the contractions took a turn for the worse. My mum rushed over to be with me because I went straight in to panic mode. I tried to relax and took extra tablets at the doctors recommendations but the pain continued to increase and by early afternoon, I was screaming the house down. Mum called for an ambulance and I had to check if I could feel Blasto's head (which I couldn't). Danny was called home from work and arrived just as the paramedics came to take me back to hospital. The pain by this point was unbearable. 

I spent the rest of the day being monitored and scanned. At one point they thought my waters had broken - they hadn't, but I did start bleeding. I was taken to a ward, high on Entinox and painkillers, only to wake the next day feeling fine. I was incredibly frustrated. They decided to keep me in as I was still bleeding. A few days later, though I was still having tightenings, everything else settled and I persuaded them to let me go home. After two weeks in hospital, all I wanted was the comfort of my home and Danny. The doctors couldn't find any reasons for the pain and tightenings and it was blamed on my uterus being irritable due to my endometriosis. 


3 days after being allowed out, I was back at hospital but this time it was for our final IMPACT clinic. I spoke to them about what had been happening but they didn't offer any further clarification on the situation. We were booked in for our induction on 23rd December and kept on the books in case of any problems. 



Over the next 7 weeks, I was in and out of hospital due to the pains. I was given some stronger painkillers to take alongside Paracetamol and these helped a lot but didn't stop the tightening's. By 35 weeks, Blasto was 4/5 engaged and by 36 weeks I was starting to lose my mucus plug. 37 weeks came and went - Blasto was full term and not budging, and at 39 weeks, I went in to hospital to be induced.


The day of the induction is a bit of a blur. I arrived at the induction suite by 9am and at midday they confirmed I was only a fingertip dilated. A pessary was inserted and I was taken down to the antenatal ward. The pessary started working straightaway and by 5pm the contractions were constant but irregular. I had a bath which didn't help at all and by 7pm the contractions were 2-3 minutes apart. The midwives couldn't do anything until I was 5cm dilated and they wouldn't examine me so I was stuck on paracetamol, panicking through every contraction with visiting time on the ward and Danny getting angry at me because I wasn't listening to him telling me how to breath.

Eventually at 9pm they moved me to a side room, I had my TENs machine on and the midwives sat with me. I was already pushing and couldn't stop myself. Finally at 10pm they examined me and found I was 5cm dilated. I was moved to the delivery suite straight away and within minutes a loud pop echoed around the room and my waters broke - everywhere! It was like sitting in a swimming pool! My waters were black with menconium and they became concerned for Blasto. I was completely spaced out by this point and just remember the pain. I couldn't focus beyond it. Entinox wasn't working and with all the pushing I ended up tearing my cervix and was bleeding heavily. I was 7cm, labouring too quickly and I later found out that Blasto's heartbeat had dropped dangerously low and wasn't registering on the monitor. 


The anaesthetist finally arrived and administered an epidural, but within minutes it was taken out again and I was rushed in to theatre. They didn't have time to put me in a gown and all I really remember is asking repeatedly where Danny was as he had to get changed and was waiting to be allowed in to theatre. In the meantime I had tubes inserted and injections of all sorts and was strapped down to the table. The spinal block started working and a flood of cool water washed over me. Staring up at the theatre lights, I was in heaven. I had no pain. Danny came in and they cut me open. I felt a lot of pressure then heard the most wonderful, yet angry, cry. 




Hunter Ace Willoughby was born at 00:46 on Christmas Eve with his cord wrapped around his neck. He was rushed straight off to be checked and have his throat cleared of the menconium. And then I met him. All 7lb 1oz of him. Danny held him near me but I was still strapped down and unable to touch him. Danny took him in to recovery while I was stitched up and then I was wheeled away too. I finally held him and I couldn't believe how perfect he was. It didn't feel real. 




I found the pregnancy and birth very hard to deal with afterwards and for quite some time I vowed I never wanted any more children. Still now, I look back at our birth and wonder if the pains I felt were the same as every mother feels during labour. Were they more intense or did I just lose all control? I try not to be hard on myself, after all we went through to get our little boy, all the embarrassing treatments and invasive procedures, the counselling and the months of pain, but it's hard not to feel disappointed in yourself when you didn't have the perfect vaginal birth - you know, the ones with no pain relief, with angels singing lullabies in your candlelit room while you are fed grapes. OK, OK, I embellished a bit there but that's how I imagine every one else's births to be, while I'm over here screaming and flooding the room with my pooey waters! I would love to go back and just focus, focus on our baby instead of the pain. But, I can't change anything now. All I can focus on now is how incredible our little one is. I would go through it all a million and one times to get Hunter. Our tiny miracle and the absolute love of our lives.

S.

Friday, 6 May 2016

Guess who's back, back again!


Hello folks! Remember me!? Yup, I'm back! It's been over 2 years since my last post and I've finally found some time and energy to get back to my beloved blog. I've had many moments over the last few years where I was determined to give up on EMLWY. I almost didn't want to share my life with anyone besides those closest to me. I received lots of messages in my time away off ladies needing to know they weren't alone and having had some set backs in my own health I eventually found that I once again needed the support of you lovely lot too. So I've spent some time updating the blog and getting my head around this whole technical malarkey once again and now I'm back with not only one post for you, but other posts in the pipeline! Go hard or go home, right!?

I probably left you all at the worst possible time, halfway through our round of IVF! A pivotal moment not only in my life but also for the blog! So, I guess the BIG thing to mention first and foremost is that I am indeed a mama! If you follow me on Instagram you'll have seen my hundreds of photos of the little man already, but for those of you who don't, I guess I should introduce our dude...


Hunter Ace burst in to the world on Christmas Eve 2014 and he is now a walking, talking/shouting 16 month old toddler! Our lives have changed so much since we became parents and this one has brought so much love and laughter to our home. I'll update you all on the rest of our IVF treatment and my pregnancy in a separate post because there is A LOT to cover! Let's just say, it didn't go quite as smoothly as I imagined it would!


Besides Hunter, I guess really not much else has changed. Me and Danny have been together for 6 years this week, living together for over half that now. We've moved house since I last posted and we now have a very nice family home in a beautiful little village. We not only became parents in 2014, but also welcomed a new nephew to the world after Danny's brother and girlfriend Lou, announced they were expecting a few days after us! I'm still in the same position with regards to work and benefits - however, now Hunter is getting a little more independent I'm able to find the time to start some little sidelines and bring in a few pennies here and there myself. Danny's had a promotion at work and his success has definitely made it easier for us. I still don't know what the future holds work wise though. I had to attend a tribunal against the Department of Work and Pensions (DWP) in October 2014 which I won and that granted me some relief from their incessant assessments - until December this year anyway. I don't know what will happen then though. Everything is a little up in the air because my health is all over the place.

After having Hunter, I decided I wanted to breastfeed. In most cases, breastfeeding means your periods shouldn't return for a good while. For some, it's years before they menstruate again. Me? 4 months. That's all I got! They started light and reasonably regular and I hoped that the pregnancy had somehow re-set everything for me. Yeah, how I was wrong! I'm still now on a period that started in November last year. Apart from the odd day here and there, I've been bleeding for over 6 months. I'm exhausted with it. On top of that, a few months after having Hunter, I started having problems with my knees. I'd be so stiff I could hardly walk down the stairs and this only developed over time. I eventually went to see a doctor who ran a long list of tests and when they all came back clear she determined I had fibromyalgia. By this point, I was having problems with not just my knees, but my entire body, and the fatigue was unreal. I was referred on to a Rheumatologist, one I'd been under the care of before, and 2 weeks ago I finally received confirmation that I do indeed have fibromyalgia, along with a new diagnosis of borderline osteoporosis (as opposed to osteopenia) and finally, a reason for my hip problems - trochanteric bursitis - for which I'll be having a steroid injection for in a few months time. I've started on some medication for the fibromyalgia and so far the 10mg dosage of Amitriptyline I take every night has greatly improved the pain. Though it's absolutely knocked me for six!! I can take up to 30mg at the moment but the 10mg dosage has left me feeling like a dry mouthed tearful zombie for the last few weeks and I've been finding it a real rollercoaster. Some days I feel fine, whereas others I'm a total spacehead, feeling so sick and poorly I have to go to bed early, only hoping it passes.

Anyway, that's a brief overview of what's been happening. I really hope you are all well. I have lots to write about and a lot of emails to reply to so keep your eyes peeled folks! I'm so looking forward to getting back in to this!

S.

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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