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Naming the problem

Ramblings on the difficulty of naming things

After several attempts at starting a blog of my thoughts and experiences during IVF I’ve finally beaten the hurdle that has been stopping me – I’ve come up with a name.

Welcome to My IVF Ramblings.

I like the word rambling, it reminds me of beautiful roses or uplifting country walks. When you’re packed full of extra hormones all your thoughts can feel quite rambling, threading off in lots of different directions, looking for positives and hope everywhere, finding negatives more easily, often winding round to the more bizarre and irrational but, surprisingly, with lots of laughs along the way. I’ve been writing a diary during this latest IVF cycle and now I’ve found a name I’m ready to start sharing it.

If I struggled to think of a name for my blog how on earth am I going to name the child we’re trying to have?!

Most of the baby names I liked ten years ago have been used now by friends and family who breezed through this procreation lark to get first dibs on the best choices. We chose names for our children during the 2012 Paralympics, we’d been trying for over a year and were coming up to our first IVF and felt full of positivity and child naming was good escapism. So we chose Ellie for a girl, after being inspired by amazing swimmer Ellie Simmonds. And Oscar for a boy, after incredible twin blade sprinter Oscar Pistorius.

I like to look for the positives in life and I often reflect that one of the upsides of not having conceived (yet) is that we didn’t name our child after a murderer.

 

* if you’re new to this, all the following posts are ordered with the newest at the top. So to follow my latest IVF journey in chronological order you need to start with the post at the bottom of the page and read up

Thank you

Rambling on and on about how great our support network is!

People are so kind, we’ve both felt really supported through this latest cycle. 

I’ve had daily messages from so many friends and family checking in, asking how I am that day, that hour, acknowledging the regularly changing nature of my moods, answering questions about what miscarriage is like, providing reassurance, telling me what a brave girl I am (I like being told I’m brave, it’s like being little and your mum says it and it makes you more brave) and always sending massive hugs and lots and lots of love.

Here are just a few examples.

We’ve had cheery flowers from my godparents: 


A beautiful bouquet from my team at work:

A bright orchid from Husband’s sister & mum: 

This perfectly chosen gift from our friends who know us too well! They also sent us both cards, including a Spider-Man card for Husband “because even male super heroes need a bit of tlc from time to time” ❤️


A friend brought round a yummy cream tea to share while we cried together:

My lovely neighbour gave me a wonderful aromatherapy massage to help me rebalance and relax.

My family let me cuddle their babies for comfort:


Thank you everyone. We couldn’t get through this without you xxx

Back to reality

Ramblings in a week of getting back to normal life

Wednesday 21st June

As instructed by the hospital I did another pregnancy test to rule out ectopic pregnancy, but I did it on Monday – sooner than instructed so I can get on with life. 


The result was as expected but a relief to know once and for all that ectopic is not going to be part of my story. Phew!

So now I’m back to work. I’ve had two days working from home, trawling through 1112 emails (I have 209 important ones left now) and catching up on the phone.

The first day was hard. I expected it to be mentally difficult as I’m never good at getting my head back into it after a break. What I didn’t expect was the physical pain – I haven’t sat at a computer for a few weeks now and I soon got aches in my legs and hip creases. I was glad I’d done my pregnancy test that morning or I would have started to worry about my insides again. By the afternoon I had to give up my desk and lie on the settee with my laptop on a cushion on my lap. 

The second day was better. I got my head into it so I was well distracted and only noticed some aches at the end of the day.

 

Now I’m on the train to Oxford for my first day in the office since the Wednesday two months ago when the clinic called to send me into a spin and Husband on a viagra hunt. It feels like a lifetime away. 

Physically I’ve got some aches and I’m not looking forward to a day on the hard conference room chairs.  I’m happy to be moving around a bit more than I do at home, I’ll have a good sunny walk through beautiful Oxford to the bus to the office. 

I’m feeling emotionally stable, but not particularly clever just yet. I think it’ll take a few more days to get my brain working properly as it’s currently focused on getting me through normal life without remembering the past few weeks. I don’t feel ready for any pressure yet, I need to feel in control of my own thoughts. My big project has been delayed by my absence and I think that will be my touchy subject if people are stressed that they need things from me in a hurry. Fingers crossed and deep breaths.

I’ve got a bazillion healthy snacks in my bag to keep my blood sugars under control which should keep the tears at bay. Last time I remember holding it together so well for my two days away from home but bursting into tears the minute I got in the car with Husband who was waiting for me at the station, I was nearly home and able to let go. I’ve had a bit more time to recover so hopefully it won’t happen this time. (Note to self: eat lots on train home tomorrow).

I have a lot of supportive friends in the office who I know will be looking out for me, ready for a pep talk or to listen to me moan if I need them. And I’m reallllllllly looking forward to this evening as I’m staying with a lovely friend and we’re planning to spend the evening of the longest day sitting in her garden drinking cava and talking until way after sunset. Hooray for friends!

Recovery week

Ramblings on why I needed a week off

Saturday 17 June

I’m at the end of the three weeks that the doctor signed me off work. For the first two weeks I was definitely ‘not fit for work’. I was in and out of hospital, wracked with anxiety or pain, resting on the settee with my hot water bottle was the most I could manage. 

But this week there were no more appointments, the diagnosis was certain and the worst had passed. I’m so glad I was advised to take another week off, so many people have told me they went back too soon after their miscarriages. The doctor knew his stuff, I was still not fit for work this week.

Physically I’ve been exhausted, with not getting enough sleep and my body working overtime dealing with all the various drugs and hormones I haven’t moved much during the past 8 weeks other than some walking.

I have had headaches and abdominal cramps throughout the week. When I thought they’d cleared up enough for me to brave a trip to Tesco they surprised me with stabbing pains in my womb that left me leaning on my trolley and grimacing like an eejit all round the store. (Sorry Ocado, I’ll never cheat on you again.)

For weeks people have been telling me I look really well, but that’s no longer the case now the steroids and hormones have worn off. I’ve got loads of spots, grey bags under my eyes and my hair is doing a good impression of Worzel Gummidge

 

Mentally I’m struggling to focus on anything, I found myself drifting in conversations and I’m not following the plot as well as I usually do when watching a TV drama! And emotionally I’m up and down. I might feel strong, practical and capable (strong and stable?!) when I wake up, then four hours later I just want to sit and cry. Though the crying sessions are really short lived now, hardly worth the effort! 

I know this is all part of the change process and it will pass. I’m definitely much much better now at the end of the week than I was last weekend. 

 

The biggest boost I’ve had this week has been to have control over my own time. For about 4 months now I’ve been told what to do by doctors. Starting as weekly appointments in London at non-negotiable often unsociable hours, through the intense two weeks living near the clinic and then ending up with days spent in the local hospital. So much waiting. Waiting for instructions. Waiting for results. Waiting for the opinions of experts. All the various drugs to take at specific times each day, dictating when I eat and when I need to be home. 

Soon I’ll have my days mapped out again by meetings and projects as I go back to work, by train and bus timetables as I restart my commute. It has been therapeutic to be able to go at my own slow pace and mooch through the week without phone alerts reminding me of a drug dose, no pressure to fit in three hot chocolates and lots of protein every day, to sit in the sun without worrying about my core body temperature rising too high.

 

A highlight of this week was an afternoon spent with Husband – we needed distraction, exercise and food (I was craving meat to get my iron levels back up). So we walked into town to a new restaurant (Cote) where we sat outside watching the world go by. 

I had a kir royale and felt immediately tipsy, the good kind where your arms feel wobbly and things seem funny. We were amazed at the couple at the table next to us who had a bottle of wine each with their lunch and managed to walk away normally, as I merrily bounced off all the chairs on my way past. We ordered steak frites followed by pot au chocolat – hooray I can eat puddings and cakes again! 

We followed up with a good mooch around some charity shops, one of our favourite pastimes, then a walk along the river towards home via a sunny beer garden (I stuck to soft drinks, not ready for a hangover just yet). It was bliss to just take time out together, relaxing. 

I know I have to go back to reality sometime so I’m getting ready to ease into work next week. We’ve decided to book a holiday in about four weeks so there’s something to look forward to. Nowhere exotic just yet, I’m still paying off the clinic fees. Maybe this heatwave will continue and the British coast will feel exotic anyway!  

‘At least’

Ramblings on the worst thing to say to someone after a miscarriage

Friday 16th June

I read a blog post and all its comments yesterday about how people sometimes respond in an overly optimistic way when you say you’ve had a miscarriage – ‘at least’ you know you can get pregnant.

One commenter mentioned a quote they had seen “there’s no ‘at least’ in pregnancy loss”. But last time I had a miscarriage that was exactly how I felt. We had miraculously conceived naturally which we never thought would happen – so it gave me hope more than it depressed me. I thought at last I know we can actually get pregnant, all the trying is worth it if we can just get lucky again.

We had only known for four days that I was pregnant so it was more like a late period. Of course in that short time we had allowed ourselves to dream, I hadn’t stopped grinning and had already gone to the doctor so I was in the system which meant an awkward conversation when the midwife called 2 weeks later to make my first appointment. 

The miscarriage itself was more painful than a period but it was over quickly. So whenever I looked back on that time I still felt the joy that at least I can actually get pregnant. It gave me the hope to try the extremely intense IVF treatment we’ve done twice since then.

 

This time there’s no ‘at least’. It hasn’t given me hope for the future, it feels quite final. We’d decided beforehand that we couldn’t afford to do another cycle so this was our last one. In truth, if you could 100% guarantee success then we could find the money for it, but there has to be a time when you say enough to throwing your hard earned savings down the toilet (literally). I don’t see any of the cheaper clinics as suitable alternatives and really couldn’t imagine organising ourselves to go abroad, London was hard enough. I won’t say I’ll definitely never do IVF again but that’s not the plan we have for now.

Another reason it hasn’t filled me with hope is because it seems to confirm that my body doesn’t want me to be pregnant. I’ve had plenty of embryos in my womb over the years but even when they stick my body sees them off. It feels like it’ll be hard work to keep one there longer than a few weeks. 

When you’re doing IVF you take one stage at a time and you can’t help but imagine that all it takes is that one positive pregnancy test then it’ll be plain sailing right through to changing nappies and sleepless nights. But that’s just the first hurdle when your immune system doesn’t want foreign objects in your body or your eggs are so old they just create dodgy embryos that aren’t built to last. 

 

Most people I talk to know what we’ve been through, because they’ve read my blog or we’ve spoken over the years. So I haven’t heard many people use the ‘at least you can get pregnant’ line, thankfully. 

I’m not saying pregnancy might never happen, but what I am saying is that it’s not helpful when people say things like “don’t give up hope, your time will come”. No one can possibly know that our time will come, for millions of people it doesn’t. I’m not being sad and sorry-for-myself when I think this, it just feels like a practical, realistic response. 

I know it must be soooooo hard to know what to say to someone in my situation, especially if you’ve been lucky enough to have no personal experience of it. So I tend not to be offended when people say the wrong thing, but despite myself and this forgiving rational approach, I find that things people say will stick in my head and play over and over with ‘I can’t believe they said that’ on a loop. 

But even these accidental mis-speakings help because by highlighting what I don’t agree with it helps me work out what I really do think. And it was one of those awkward questions about my last cycle that really spurred me on to write this blog to help people around me understand more about what it really entails when I’m ‘just taking a few drugs every day’. 

Fading memories

Ramblings in the week after miscarrying

Tuesday 13th June

It’s almost a week since I last wrote, things are gradually beginning to calm down. I haven’t cried for two days now. I have a constant headache which paracetamol and ibuprofen do little to shift. I haven’t had any bleeding since Saturday. I get stabbing pains in my womb area and aches in my left ovary side still, but the painkillers help with that. It’s a couple of nights now that I haven’t been bent double with cramps after a wee which feels like progress. 

My mouth feels raw, I describe it as ‘shredded’, which I’ve experienced in the past when I took ibuprofen for a week so I’m only using it in emergencies now. (I dread to think what it does to my stomach if it’s affecting my mouth so much).

My bum lumps (from the progesterone injections) are still there, hard round bumps. When I ran to get out of the rain the other day every step felt like a jolt in my buttocks in exactly the spot where the intramuscular injections went. My tummy bruises (from the blood thinner injections) are fading to shadows, with little pea-like lumps under the skin which is tender to touch.

I don’t want everything to return to normal yet. It feels like it would deny what has happened. I still need to experience it all, feel the pain and feel sorry for myself. As the world moves on and gets used to the idea of our news, I’m not quite ready yet.

 

But my body already feels like the real me is coming back. I’m sleeping much better – getting my usual 8-9 hours a night rather than feeling wired and alert after just 6 hours. I don’t get so breathless or have to slow down when I’m walking, I feel ready to build up to more exercise. And my anxiety has totally disappeared. Even when I get a twinge of pain in my left hip crease/ovary I’m no longer paranoid that it’s going to lead to extreme pain and disaster. 

Mentally, I’m keeping distracted, not allowing myself to think too much about the big themes, just taking it day by day. We spent lots of this weekend with my family, especially my nieces and nephews as my siblings are fertile (bastards 😜) – my brother has 3 kids including a 4 month old girl, and my sister has 2 including an 8 month old boy. With all my hormones and emotions I’ve felt the need to be hugged all week and found that cuddling a baby was extremely comforting. And there were plenty to go round!

When the big family group photo was taken I don’t think the irony was lost on any of us that Husband and I were the ones holding the babies, with big smiles on our faces. But it was good to be with my family, people who feel as sad as we do at our news and who talk the same way as me, who seem to know what to say or not to say. It was just the comfort I needed, and Husband very patiently joined in.

For the next few days I’m going to try venturing away from the settee and TV comfort bubble. Gradually releasing myself back into the wild (I’ve been watching a lot of Springwatch lately).

Our final scan

Ramblings on the day we saw my empty womb again

Friday 9th June
We’d stayed up until 1am to watch the election and had to drag ourselves out of bed before we were ready to get up. I had an upset tummy and lots of cramps. Not ideal conditions for spending the morning at the hospital, but my anxiety levels were much better than earlier in the week. I was prepared for the appointment to tell me what I already knew and my extreme fear of ectopic pregnancy had passed as my period had progressed. I felt like a different person to the one who nervously trembled on the way through the big glass hospital doors the week before. 

The scan confirmed that there was nothing left to see in my womb. It didn’t look like the familiar oval sliver that we’ve seen on screen during the IVF treatment, it’s still stretched out of shape, like a deflating balloon. This feels reassuring. Confirmation that there really was something in there, I didn’t imagine it. Though sadly I wasn’t allowed to take a photo for my blog of the screen with my empty womb on it, “for legal reasons”. 

The sonographer had a good look around and confirmed there are no ‘retained products’. Just as I had hoped, my body had done its job of flushing out everything without the need for medical intervention. She also looked around for signs of ectopic pregnancy but found none, no fluid in my pelvis. 

It was a rather entertaining scan as she managed to ask several questions that someone going through a miscarriage doesn’t want to hear – all the while with a magic wand waggling about up my foof. Is this your first IVF? Wow eight! Are you going to do it again? Have you thought of going abroad, it’s cheaper? What about adopting?

I found myself responding as if I was reading out the correct polite answers to all these questions and caught Husband with a surprised look on his face as if to say ‘is that what you really think’ – a small shrug told him I was on autopilot making shit up just to fill the air with an answer!

We didn’t mind though, she wasn’t breaking bad news to us as we already knew, and with my anxiety levels back to normal we were both quite relaxed for the scan, so she was just making cheerful conversation and obviously didn’t know what to say. We asked lots of questions to get as much information out of our last scan as possible.

She told us there was a ‘collapsing corpus’ on my left ovary and when I said a previous scan had identified a corpus luteum on the right she then found that one collapsing too. So I had one on each ovary all along. Corpus luteum is the remains of a follicle which originally housed an egg pre-ovulation (or pre-egg collection in IVF). It stays on your ovary to pump out the hormones when you’re pregnant. Her scanning machine changed the colours on the screen to show blood flow in a halo around each corpus which proved they’re collapsing rather than cystic. Again, reassurance that my body is doing what it’s meant to do.

My blood tests were the final piece of the jigsaw that confirmed we’re no longer pregnant – my HCG was right back down to 86 and progesterone 4.8. Any HCG reading over 25 is a positive pregnancy result – so I need to do another pregnancy test in 2 weeks just to confirm that my levels have fully dropped, to rule out ectopic once and for all.

We had a good chat with the nurse in the Early Pregnancy Unit. She admitted she was just curious but wanted to know how much our IVF had cost, she was shocked when I told her. 

When I mentioned I’d had a natural pregnancy that miscarried she gave me the little bit of positivity that my subconscious needed to get up and on with it – “you’ve got another 7 years yet”. She assumed that if I’m ovulating until I’m 50 then there’s still a chance I can conceive. In theory that’s true, though I wouldn’t recommend putting money on it with our track record. We’ve been ‘trying naturally’ every month in between IVFs for the past 6 years. Still, fertility is all about hope and that’s what we all need to get us out of bed in the morning.

For now I’m appalled at the thought of being pregnant ever again. I found the whole experience uncomfortable, traumatic and stressful but I know I’ll be able to rationalise and handle that with time. Our minds and bodies are amazing at rolling with the punches and getting back up and on with it.

As we left the hospital it felt quite final and exhausting. A migraine soon set in for the afternoon so it was back to the settee and TV routine. My GP signed me off work for the next week so I have some time to recover physically and begin to feel more mentally composed too. As Husband put it – I need to be able to not burst into tears if someone accidentally says the wrong thing at work. Hopefully my falling hormone levels will help with that!

Crying

Ramblings on the day the hormones come out of my eyes

Wednesday 7th June

I can’t stop crying today. Husband has had to go back to work for his own sanity and bank balance. I couldn’t hold a steady thought or make a proper decision so I’m signed off work until I feel normal again. So I’m on my own at home. 

A friend came round and cried with me for a bit which was comforting and funny. She brought cake and conversation for a few hours which is just what I needed. But the crying keeps coming. I think it’s the hormone changes. I’m not thinking any particular thoughts before or while I cry. It’s just an overwhelming sense of sadness and ‘it’s not fair’ sorry-for-myself sobbing. It feels good and bad in equal measure. 

I’ve also got lots of cramps today. The lumps on my bum from the injections which finished a week ago are sore to touch or sit on. My tummy, still bruised a week after the last blood thinner injection, is tender and swollen. The ache in my left hip crease is still there. If I don’t keep my paracetamol and ibuprofen topped up every 4 hours I ache all over and cry even more.

Hormones are bastards.