Tuesday, 20 December 2016

Healthline's best endometriosis blogs 2016

The Best Endometriosis Blogs
Image courtesy of https://www.healthline.com

I received an email today from the folks over at Healthline, informing me that EMLWY had made it on to their list of the Best Endometriosis Blogs of 2016 alongside some other amazing endometriosis blogs. You can view the list here but the other blogs also feature in the Endometriosis Library which can be found at the top of the page.

I've been taking a little time away from the blog recently, mainly due to health reasons, but also because this time of year is just crazy with my birthday, Hunters 2nd birthday on Christmas Eve and then of course Christmas! There doesn't seem to be enough time in the day for anything at the moment! But, I am itching to get writing again and I have lots planned for the blog in the new year so once 2016 is over and done with, I will be back!

In the mean time, I hope you all have a lovely Christmas and New Year and I just want to thank you for following EMLWY and all my ramblings. I appreciate your support more than you could ever know!


Wednesday, 14 September 2016

Sunshine, Suffolk and a pain free week away

If you follow me on Instagram (or any of the other social networks on the left), you might have already seen that we went on holiday the other week, down to my parents caravan in Lowestoft. Thankfully, the weather was hot, sunny and dry every day which is just what we needed after our very rainy trip to Dorset earlier this year! It was lovely to spend some proper time together and not worry about anything. My parents came down a few days after we got there to stay for the remainder of the week and it gave them some time with Hunter as well.

I'd been worried about my pain levels while away this time but, for the first time in a long time, I felt fantastic - all week!! I don't know whether it was just coincidence and I was just having a good week, or whether it was the heat, sunshine or being by the sea (maybe even a combination of everything!), but besides the odd twinges in the ovary area and my hip aching a little towards the end of the week, I felt normal and not fatigued in the slightest! Of course, it didn't last for long and I feel like I'm back to my normal again now we are home. But, I can't complain too much after my health giving me a much needed break for once!

In my last post, I mentioned about how my period had felt easier to handle due to the length of it. Well, last month my period started a day before it was due, however, it only lasted 6 days and although I was in the same amount of pain (agony!) it again made it much easier because of the length of it. This month, my period again started one day early but has, so far, been a bit odd! I was getting a lot of aches last week but I've not felt too bad whilst I've been on my actual period - probably because it's a bit all over the place. It was heavy for part of the day on Sunday and Monday, but apart from that it's just been like old blood and reasonably light - and the pain has been minimal because of it being so light. I don't know what's going on with it. I was hoping my body was getting in to some sort of pattern but, obviously not! I've also noticed that over the last few months, I've started getting hot flushes all the time again. I've not suffered with them for a few years now and the last time I got them was when we were going through IVF, but now they are back and I had forgotten how draining they can be! Seriously, if anyone has any tips on how to deal with them or if you've found anything to help ease them a little then please, let me know!

After my last period finished and my body had started calming down again from it, I discovered for the first time what it means to have a fibro 'flare'. Up until then I've had pretty constant low pain, sometimes it's worse, sometimes it's barely there, but never anything I couldn't handle and I could usually predict to some degree when my pain was going to worsen. Anyway, this one night, I was just getting cleared up after dinner and I started getting sharp pains down my left side and then it felt like it was creeping across my body. I took my Amitriptyline before bed and hoped that the pain would wear off while I slept. However, I was getting sharp little electrical like bolts of pain all over my body when I lay down and it just got worse and worse until I was in tears. I couldn't sleep and had to take some painkillers and then I eventually drifted off. I was pretty exhausted from it the next day and I was still getting sharp pains shooting down my body but it got easier and by the next day I felt absolutely fine again. Since then I've not had any pain really apart from when it came up to period time and my hands and legs have started aching but nothing major. It was odd and quite scary really because it was so unexpected. I'm hoping that this won't be a regular occurrence after my periods but we'll have to see what happens in a few days with that one.

I said above that my hip had been a little painful towards the end of our holiday. Well, I mentioned in a previous post that I had to go for a steroid injection for the trochanteric bursitis in my left hip, and that happened the day before we went on holiday. This pain has been ongoing for years and I've been given exercises from the physio as well as lots of different explanations for the pain. I mentioned it in passing to my Rheumatologist when I saw him earlier this year and after a quick examination he said it was trochanteric bursitis. Basically, around your joints you have little cushions and when one of those cushions goes it causes the bone to rub on bone and thus cause pain and inflammation. I had steroid injections when I was 29 weeks pregnant and they thought I had gone in to pre-term labour, so I knew it wasn't going to be the nicest thing in the world. Those were in my bum cheek though and I was pretty worried as this one was straight in to my joint. I expected to be taken in to a side room at the hospital and be given the injection by a nurse then shown out as quickly as I arrived, but instead, I was shown to a ward and had my own bed and cubicle and Danny and Hunter were able to stay with me which was nice (and definitely helped to ease my nerves since the nurses were cooing over Hunter!). The injection was given by a consultant and this time the steroids were mixed with an anaesthetic so I didn't really feel much besides pressure. Probably a good job because Danny said she was yanking the very large needle all over the place! My hip was a little sore immediately afterwards but I thought it was just from the injection and it would wear off. However, about 15 minutes later it started getting really painful and it just got worse. The pain spread all down my leg and it was making me feel really sick. Luckily though, I woke up the next day feeling fine. I was supposed to rest it for 24 hours (still moving around but nothing too strenuous) and then be sensible for the next 4-5 days and not do too much exercise but that went straight out the window when we got on holiday and did a 5 mile walk on the second day! Hey, I was making the most of having a few almost zero pain days! I can't say I've noticed a great deal of difference since the injection. The consultant did warn me that it might not help and it still aches in bed and if I've been sat/stood for too long. It's an odd one really because it's not constant pain so I've just become used to living with it. But I guess I'll just have to live with it a little bit longer!

My acne has been much better and if you follow me on Instagram then you might have seen me talking about it in the 'Stories' bit over the last few days. I'm in the middle of writing a post about what I've been doing to improve it so I won't say too much here but I'm hoping it continues to clear because it's really been getting me down again.

Oh, and I just wanted to touch on how I'm feeling anxiety wise at the moment since I was feeling riddled with it last time I posted. I don't know what was going on to effect it so much then but I've felt fine again since. Obviously, those issues that I spoke about are still underlying, but they are not the be all and end all right now. I know it was either my tablets or hormones making me feel that way but either way, hopefully it will all stay level again now.

Anyway, I'm hoping you are all well - or as well as can be! I've finally found my creative head and I've got quite a few posts planned now so keep checking this space!


Sunday, 14 August 2016

Feeling depleted

Ugh. I. AM. TIRED. That about sums up everything for me for the past few weeks! I am just completely exhausted every single day at the moment - even more than usual and I'm finding it a real struggle. This is probably the worst fatigue I've ever been through (and that includes my normal endo fatigue - and pregnancy fatigue with endo fatigue on top!) but seriously, this is something else! I've even noticed myself slurring my words and dragging myself around - everything has felt like such an effort. I've also been really tearful and down - more than likely due to being so tired I'm sure because it's not like me to just feel like crying for no reason at all.

I've been in a lot of pain with my fibromyalgia recently and I've started to get a lot of random symptoms happening more often like pins and needles in my fingers, swollen knuckles and fingers, itches that won't go away for days even though there is nothing there and twitches in my face and other areas.

My period is due this week and I've not had any bleeding yet. In fact, I've not bled for what feels like ages! It's great. I'm so glad I decided to come off the pill! My period last month was 5 days long and apart from the obvious pain, it felt a lot easier to handle because of the length of it. I know it's not going to stay this way so I'm revelling in it while I still can.

My acne, however, has been really bad and my face at the moment is one constant giant breakout. It doesn't really seem to have had a break this month so I'm not overjoyed about that. The photo above was taken at the end of last month and it's not gotten any better, in fact it's a lot worse around my mouth and chin area now. I think the time has finally come where I need to start looking at my diet and cutting things out again. The main thing I want to start cutting back on again is caffeine. Before having Hunter, I had been caffeine free for a few years but I cannot function without a cup of coffee in the morning and one at night now. Sometimes I have to have a third cup in the middle of the day too! It's not good. I don't feel healthy in the slightest at the moment. Though, over the last few weeks we have been pretty good with our dinners. We are having healthier meals, better portion sizes and every meal is crammed full of vegetables. In fact, sadly, I'm finding it quite fun to get as many vegetables in to a dish as I possibly can! I guess there is nothing wrong with that! I now need to work on my snacking and cut out the breakfast crumpets!

I've been having pretty bad anxiety over a few things - sometimes for no reason at all, just things in my head, but the main thing being my benefits. I suddenly realised earlier this week that we are now well in to the second half of the year, and with that another step closer to December when my 'safe zone' comes to an end. In my last post from 2014, March to be exact, titled "3 weeks in", I was waiting for a tribunal date for my appeal against the DWP after they revoked my 'support group' status. I mentioned in my first post this year, "Guess who's back, back again!", that I had to attend a tribunal in October 2014 and that I had won it but didn't go in to any further detail. Well, 2014 - in that 7 month wait I had to send the Tribunal Services all my evidence - I actually had to write to them while I was in hospital and wasn't sure at that point whether I would be out in time for the actual hearing! I literally sent them everything from the past 2 or so years to back up my case, including all my appeal letters stating every minute detail of what I was going through and how I had been treated by the DWP. I even went through all of their ridiculous paperwork where they were basically calling me a liar and saying it was impossible to bleed for 3 weeks (hello!? 7 month period!) and noted everything I could. Well, a few days after coming out of hospital, and 32 weeks pregnant, I waddled off to the hearing and I was so, so, so nervous. I met with a judge and a doctor, who, thankfully, seemed to know a lot about endometriosis and about what I was telling him (which was refreshing to say the least!). But, guess who couldn't be bothered to turn up and represent their side. Yup, the DWP. I actually felt quite at ease during the hearing because the judge and doctor came across as pretty understanding. I had to base everything on the time period in hand (not the circumstances I was under at the time). I had to explain how far I could walk before needing a rest and show them exactly on a map. I talked about the pain, what medication I was on and the incontinence issues I had at the time as well as the depression I had been suffering. When they called me back in, the judge explained that I had won my case and not only would I be put back under 'support group' status but that he was also granting me a 2 year break where the DWP couldn't reassess me. Anyway, that 2 year break finishes in December this year and I'm really starting to worry about it. I've heard that some people get left alone after winning a tribunal case against the DWP but will I be that lucky!? I reckon they are going to pounce on me and reassess me at the first opportunity they get! Nothing much I can do about it all just yet really. It's just a case of seeing what happens in December, but the worry - I can't stop thinking about it right now. I would absolutely love to get back to work and to not have to worry about the DWP stopping my benefits or have to worry about money anymore, but I don't know whether I'm coming or going at the moment with my health and then there is weighing up childcare options for Hunter along with how much money I get on benefits versus how many hours I would have to work to make the same amount. Would my health allow me to work those hours? Would I be able to find a job after being out of work due to my health and still have to take a lot of sick days? And there is the anxiety. I didn't realise I suffered with anxiety until my Phychologist pointed it out a few years back and then doctors since, but it feels all consuming at the moment. I'm definitely not depressed and I feel blessed with what we have, even with the big question marks over my health situation, but this is different. I'm struggling with leaving the house unless someone is with me, I'm constantly questioning myself over everything, thinking I'm boring people, thinking people don't like me, thinking, thinking, overthinking everything. I hate it. It's silly. But can I stop? No.

While I've not been posting, I have been working on things in the background and you may notice a few new things knocking around the old blog, including a new Glossary. It's a work in process and I keep finding new terms to add all the time but it's definitely useful to look at if you don't know what something means. I've also been adding to the Endometriosis Library and there are lots of new blog and resource links on it - hopefully they can be of some use to you all, and the About page has had an update and now also has the FAQ's section it in too. If there is something you are wondering about me then you might just find it there! I'm currently working on the Endo-What!? page and trying to write some new sections for that. I'll let you know when I eventually get that done!

I've also been trying to post daily on EMLWY's Facebook and Twitter and if you have messaged me on Facebook over the last few years, you will have now received a reply (yes, I was really that far behind!). It's nice to be up to date with everything but I do still have a mountain of emails to tackle. That's definitely my next job/challenge!

What else have we been up to?...

The weather has been lovely recently, bar the odd few days where it's poured! But it's meant we've been able to spend a lot of time outside and Hunter's been loving it. I really hate when the weather is nice and I don't feel well enough to get out though.

We had a fun day out at Twycross Zoo a few weeks ago. I'd had a tough weekend on my own with a little boy who had just discovered the 'terrible two's'. Danny had been out on both the Saturday and Sunday and Hunter didn't like having a slightly different routine (or one that didn't involve his daddy) and boy did he show it! I was pretty exhausted with it so Danny took the Monday off work and we went out for the day. It was a lovely day and Hunter had great fun. We went in to the lemur enclosure and the lemur's ran across Hunter's path as he was toddling along and he wasn't phased in the slightest! I guess though that they are just as unusual as a cat or dog at this age!

We also went out for lunch with my mum and dad last week to celebrate mama's birthday which was nice. Unfortunately, Danny couldn't join us as he was working so I took lots of photos of my food to show him instead!

... Here I was feeling like I didn't have much to tell you all about recently, but this has ended up being a pretty long post considering! I did have a little writers block though - hence the silence. That and every single time I've picked up my laptop, little man has somehow distracted me!

Anyway, I'm off for now folks. Hope you are all as well as can be and having relatively 'good-pain' days!


Wednesday, 29 June 2016

Blankety blank

Apologies for being a little MIA on my posts recently. I tend to sit down and write at night time when Hunter has gone to sleep but my hands have been so painful that I've not been able to do any typing. In fact my pain levels have been pretty high all over my body recently and I've been waking up in pain which hasn't happened for a while. I'm just hoping that my body isn't getting used to the Amitriptyline because I really don't want to have to up the dosage this soon. Along with the pain, I've also been feeling completely exhausted and I can't think straight most of the time. Even writing this, I'm having trouble thinking what the next word should be!

On the plus side, my ridiculously long period seems to have stopped (HURRAH!) and because of this my skin has had some time to breath and has cleared a little (BIG HURRAH!). I had what I think is a 'normal' period, time wise, however it was really painful and very heavy. I'm still waiting to see how everything goes now I'm off my pill but so far, so... OK! It has only been 1 month so I'm not going to shout about anything just yet!

The weather was beautiful recently so we've been out and about quite a bit which has been really nice. I'm really appreciating the outdoors at the moment. I hate days where I'm in too much pain to leave the house and, on those days, I really have to wrestle hard with the 'mama guilt' and try and find some way of making it up to Hunter. I think it's only going to get harder as he gets older and wants to do more and more.

Talking of our little man, he turned 18 months last week and with that we reached 18 months of breastfeeding. I'm so proud of our teamwork. With every month that passes, I can't believe how much he has grown and the new things he is learning. He absolutely amazes us every day. Last week we went to his playgroup and I was talking to a lady with an 8 week old baby boy. I thought Hunter was going to jump on him but instead he went over and stroked the babies face in the sweetest way. My ovaries absolutely flipped out and ever since then I've been thinking of babies. Not so much that I want one as such, but it seems to be the time of year where everyone is announcing their pregnancies and ladies who had babies at the same time as me are pregnant again. I don't know whether we would be able to have another baby or not and I've been feeling a little - not really sure what word to use to describe it, just a bit 'blah' over it all. I don't think I want another baby really but I sometimes feel that's just my head thinking that, while my heart cries out for another. Sometimes I can feel the same sadness I felt during our pre-IVF days creeping in. It's a really odd place this in-between. Give it another year though and I'm sure I'll know where I stand with these feelings, because this time last year I was adamant I never wanted another baby ever ever again.

Whilst I've been a bit quiet on the posting front, I've been doing little bits and bobs in the background: The Celebrities with Endometriosis post has had yet another update since Daisy Ridley recently opened up about her battle with endometriosis. The Endometriosis Library is also being updated almost constantly at the moment so be sure to check that out should you want to find any other endo blogs or support resources. I've also been updating the sites pins on Pinterest and it's Bloglovin' profile, where you can follow not only EMLWY, but lot's of other blogs.

Anyway, hopefully I'll find some clarity soon and be able to get some more writing done.

Take care in the meantime.


Friday, 3 June 2016


Image courtesy of http://www.lennyletter.com/health/a160/the-sickest-girl/
I've been busy updating EMLWY this week: clearing out irrelevant posts, updating old posts, adding/removing links in the Endometriosis Library and creating the 'Endo-what!?' tab. But, most importantly, I've been majorly updating the Celebrities with Endometriosis post from 2013. Go on over, and take a look!

While updating the celebrity post, I found this amazing artwork over on Lena Dunham's Lenny Letter site. I just had to feature it here! It's so powerful!

Anyway, as always, if you see anything on EMLWY that you think needs to be updated or changed in anyway, if you want your blog or any other links you find helpful adding to the library, if you want to feature in any way or if you have any suggestions, please don't hesitate to contact me using one of the buttons on the left or by clicking here!

In the meantime, Hunter decided he wanted a little go at blogging...

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 uz\                      sgfhfg xg ewy3qje6juyyu  n ng gf


He's a cutie! <3


Friday, 27 May 2016

Sunshine, Skegvegas and the pill

You might have seen on my Instagram already, but we went away last weekend to stay with Danny's parents while they were on holiday in Skegness. It was really nice to get away again and the weather actually stayed dry for us - which was nice after our very rainy holiday in Dorset! We visited a few local attractions and fed the ducks and geese who would congregate throughout the day outside the patio doors of where we stayed and Hunter loved spending some more time with his nanny and grandad!

Unfortunately, my endo decided to play up big time and I was in terrible pain with it. I haven't really had pains like this for a long time so I wasn't prepared for it at all and I had almost forgotten how poorly it makes me feel.

I've kind of been in limbo for the past few years with it because of not having periods while I was pregnant and then them being so sporadic post-birth. I didn't know what would happen with my endo and I had always secretly hoped it would be like all the doctors say: you know, one of those magical stories you hear where women with endometriosis are miraculously cured because of the pregnancy. I know, I know, it was a long shot, but a girl can dream can't she!?

After having Hunter, I started on a progesterone-only contraceptive pill (POP) called Cerazette. I don't know if it's the same with every woman post-birth, but the doctors and midwives kind of jumped on me and wouldn't leave me alone until I agreed to it in case I got pregnant again - no matter how many times I told them I wasn't able to have children naturally and had been through IVF! But then, on the flip side, I was really frightened of getting pregnant again - it was such an odd feeling after wanting a baby for so long. But, anyway, after much deliberation, I started on the pill and had to have a POP because I was breastfeeding. This is the first POP I've ever been on and you take it everyday without a 7 day break in between packs. I remember the doctor saying that I most likely wouldn't have any bleeding at all, not only because of the pill but also because of the breastfeeding. But, as I mentioned before, my periods returned when Hunter was around 4 months old. They were always very light and at first were more like the odd bit of spotting here and there, however they soon increased in duration and flow. They were also completely irregular from the outset - though I expected this since that's how they had always been. November came around and I started a period as usual, but this time, it didn't stop. It's been over 6 months now and I've only had the odd day here and there where I've not bled. It's been very tiring and frustrating and after a few months of thinking about it I've decided to try going pill free again. I spoke to my doctor about it who said there wouldn't be any point in starting another POP because it would only act in the same way. She also mentioned that my milk would have changed when Hunter started on food at 6 months so this would also have an effect on my periods. Whether that's true or not, who knows. But she fully supported me stopping it (which surprised me!) and so I've now been pill free for one whole day. I'm not expecting great things - nothing miraculous happened last time - but I am hoping my hormones might level out slightly with not having any drugs messing them up. And it'd be nice if my skin cleared up a little because I know the pill can make that worse (or better!)... We'll see anyway!

It's not been a great week with the pain my period has caused and I've been super fatigued because of it all so I've been like a zombie again. Another bad week on the Amitriptyline rollercoaster.

You know, for so long I was relatively pain free and now I feel like I'm back to my old self again - just this time around I'm a mama and I have a few more grey hairs! It just feels like it's suddenly been piled back on me again. I thought pregnancy would give me a break from it all but it didn't. At least when I eventually go back to see the Prof. again (which I now know will happen at some point) I can throw his stupid suggestion of getting pregnant (though, not the so stupid amazing little gift we got out of it all!) to cure me back at him. But then, he'll probably just sit back in his chair, scratch his head and ask me what I want because he doesn't know what to do!

Sorry for the lack of positivity this week. I'm so tired of it all.


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 right of the page under my mugshot! I really hope to hear from you soon!


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.