Hope & Hopscotch

IVF#4

Sae's IVF Timeline

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It's such a crazy thing, infertility. I felt like there was this epic sense of urgency and boy, was the learning curve steep. A lot of the posts here are information based - it's all the research I've done for myself and my journey. With that in mind, I thought it might be helpful to share the raw emotional stuff as well as the informational. 


IVF Round #1 - Jan 2015. Ovulated early.
IVF Round #2 - Feb 2015. 2 Frozen embryos.
IVF Round #3 - Aug 2015. 3 Frozen embryos.
IVF Round #4 - Oct 2015. 1 Frozen embryos.


Happy New Year

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The break has been nice, the downtime of eating whatever and finally, what feels like the first time in forever relaxing. Proper relaxing.

That doesn't mean not worrying about TTC, though. Zee and I have being fast and free with contraception. We're in that weird spot of trying not to worry, but worrying at the same time. That epic rollercoaster that happens month to month. We're not trying very hard. It's like we're giving ttc the side eye - I know ish when I'm ovulation. I don't say anything when we BD around that mark, and I know when AF is meant to show. 

We're not trying, but still have that weird moment of both relief and disappointment when AF shows up. 

Relief because our doctor wants to do another round of IVF. At some point. Some point this year. Maybe. Maybe we'll change some things. Maybe we won't. Maybe we'll transfer instead of freezing. Maybe maybe maybe.

Relief because there are so many things to do, and I'm still on the am I ready? Am I not? IVF originally was a back up plan, a just in case. I prepare for the future, but at this point, we've been on this journey for so long that the end goal seems less scary than it did a year ago. 

Disappointment because at the end of it, I want children. It's hard to see the single line on the test. 

We'll see. I'm trying to plan for other things this year, IVF occupied a large portion of my 2015. This year, I'd like to do more, see more. Create more.

Fingers crossed that this year is our year, right? 

Sharing is Caring

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I was asked to talk at my clinics open day. I wasn't sure, exactly what would be helpful. It seems so long ago that I was at that point - not really sure what the next steps were. Still, I had lots to say, so I went. Talked.  It went well, a few couples came up after to pick my brain and ask questions. It was good.


Hi, I'm Sae. I'm a patient here, and have been for the last year or so. Last October I was diagnosed with diminished ovarian reserve. My AMH, which is my Anti-Mullerian hormone was low. It means that I have less eggs in my reserve than I should at my age. My FSH, my follicle stimulating hormone was high - meaning of what eggs I did have weren't of great quality. Essentially, I'd just turned 30 and I was already at the end of my fertility season. 

I won't lie, it was pretty hard hearing that. I felt all sorts of things. I felt like my body had betrayed me, like my right to be a mother was threatened. I felt guilty - I may not ever be able to give my partner the family he wants. I felt broken. Infertility is hard.

I'm not sure where you are in your journey. I found out about mine with a blood test with my GP. When I found out my results, I essentially called her a liar and started looking for a second opinion. 

I'm a UX designer by trade - which means that it's my job to design applications that meet the user need as well as the business needs, and I do that with data and research. Essentially, I used those skills to find myself the best clinic in London. I did three things.

1. Scoured the Internet for data. Most clinics post their success rates, and I was able to verify rates with what HFEA - the fertility authority in the UK posted. I looked at everything in detail, how many transfers they'd done, for what age bracket, for what kind of infertility. I found my top three - here, lister and ARGC.

2. I then looked for reviews independent of the clinics. This felt a little less scientific. I visited a million forums, reached out on Instagram and looked in half a dozen Facebook groups. You can be sure that all the horror stories you've ever heard are on the internet somewhere, right along with the clinic and the name of the doctor.

3. Lastly, I went and I sat in the waiting rooms of my top three, usually in my lunch hour on a Friday, which ironically was when almost all of the clinics were under pressure. This was the most revealing for me, I knew I'd be spending hours in whichever waiting room I chose. And in person, you can see how the clinic supports it staff. If the front of house and the nurses are frazzled, surely that trickles down to behind the scenes. Did they greet patients by name? Were they polite, friends with their patients? Could you hear private information that perhaps you shouldn't be able to hear? Some waiting rooms were better than others.

Needless to say I ended up here. As you can see this particular waiting room is quite nice. And the front of house staff is pretty amazing. 

I don't know what your story is, or why you're checking out clinics, so it's a bit hard to know what to tell you. In the last year I've been through four rounds of IVF, and I'm hopeful. My hope takes the form of 6 frozen embryos waiting in a freezer downstairs. I'm so hopeful.

In the meantime, I thought it would helpful to share five things I wish I'd known this time last year. 

1. Do your research.
Get your numbers and test results, and then read everything you can. Books, research papers. Do more than Google, or hang out in forums, there is so much more than that out there. You'll get more out of your rounds if you do. First, I'd suggest you read It Starts With the Egg, by Rebecca Fett. Also, check out NCBI PubMed - It's a place where all the research and studies are consolidated with an excerpt. It's an easy way to discover research studies. 

As each round is super expensive - you want to do everything you possibly can to make it successful. From your diet, to what chemicals you're exposing yourself to in paper receipts or perfume. There's a lot out there that affects fertility, it's important to educate yourself on more than just the medical processes, but your lifestyle choices too. 

2. Ask questions.
This follows on from the research. I'm not a doctor, or a scientist. For everything I learnt I'd come back to my doctor with a list of questions to ask. Sometimes Nurse Izzy would roll her eyes at me and ask why I didn't email them ahead of time, but I found It was helpful to talk things out and I was lucky that my doctor always made time for me. You also learn from each round you do, about how your body reacts to the drugs and what you can expect, so asking questions helps dig up other things to try. My first round looked nothing like my fourth round.

3. Find support.
This was the hardest for me, because I didn't know anyone going through it. My friends told me to relax, or just adopt, or did I ever consider not being a Mum and that was hard. I felt well and truly alone until I looked up #ivf on Instagram. There are blogs, forums and a ridiculous number of people going through what you are. I found it infinitely more helpful to message someone who truly understood. It got me through. 

4. Make friends with nursing stuff and receptionists. 
It won't get you special treatment, but it will make your time here easier. Truth is, they're all caught up in our journeys just as much as we are, and you'll find it much easier if you feel like you're among friends.

It's not hard to start conversation either, Nurse R is from NZ and almost always brings up the rugby. Nurse I is a massive frozen fan, and Nurse M is the nicest conversationalist. The front of house staff are equally lovely - J has a great fashion sense, and S and K are the nicest. Even behind the scenes - the anaesthetist T will let you change the location of the drip, and the embryologist will show you the embryoscope where your embyos will be incubated. It makes a different.

5. Be gracious.
Infertility is hard, and it hurts. Sometimes the clinic is busy, and you'll wait longer than you expected. Sidenote: don't try fit appointments into your lunch break - you'll always be late. Often the reason is because something has happened to another patient and the staff are dealing with it. At the time it's frustrating, but then it happened to me. In my very first round, after about a week and a half of stims I ovulated when I shouldn't have. No one could have known and instead of shunting me out at the end of my appointment I was looked after. I was so grateful for their compassion. So when I've had to wait longer than expected I've tried to be gracious. 

So, just a quick recap. Do your research, Ask Questions, Find Support, Make friends with the staff and be gracious. 

That's me done, if you have any questions feel free to come chat.  My name is Sae, you can find me at hopeandhopscotch.com - thanks for listening. 

OHSS + Watching our Embryos Grow/Die

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A few days after my retrieval I expected to be up and about. The previous two retrievals I recovered quick smart and figured it would be the same again. Oh, infertility. I should have realised that any expectations are there to be dashed.

I got mild OHSS (Ovarian hyperstimulation syndrome) and let me tell you - that shit is not fun. Urgh. At the clinic I rushed through the boxes I know I needed to tick to get home: drink something, eat something and pee. No problem.

After I'd got home and slept off the meds it was a different story - I was in so much pain. Even more when I tried to go to the bathroom. I read somewhere once the muscles you use to stop peeing are the same muscles you use to push a baby out of your body. Turns out those particular muscles hurt like a mo-fo if you have OHSS. So much so that I fainted. On the toilet. I woke up with a massive bump on my shoulder where I'd hit the tub and a bigger lump on my head where I'd hit the wall. I felt indignant when I came to - as if I hadn't had a bad enough time with infertility, now I had to pass out from pain on the toilet too? Siiigh.

It took me a while to figure out it was OHSS and not just my body being slow to recover. There were a few key ah-ha symptoms:

- Weird bloating and tenderness. I looked like I was pregnant. Really pregnant.
- I couldn't breathe deep. It felt weird to take a big breath.
- I couldn't lie on my side comfortably - I'd almost always roll onto my back.

I did some reading (expect a proper research laden post coming soon) but realised that as we weren't transferring I'm not at risk of it getting worse. As soon as my body realised I'd ovulated, wasn't pregnant and my levels of hCG went down it'll reverse itself and I'd cover.

Which meant that the biggest part of the week was me hanging out in bed, waiting for the daily calls about our embryos.

Of six retrieved, five were mature. Of the five that were mature, four fertilised. 

They cleaved into four cells. And then eight cells. One went off early and became ten cells. We got daily calls, we got pictures. There was that feeling of relief and then I'd get all worked up thinking about the next call. There is just so much hope - so very much hope. 

On Day 5, when we were hoping for 4 beautiful blastocysts - we had 4 compacted morulas. 

Oh. We know that embryos that don't grow to plan aren't always viable, but to have none of embryos make it to blastocyst level is terrifying. The embryologists are as keen as we are for them to grow and gave us another day.

We had one blastocyst (one beautiful, hatching, blastocyst). They said they'd give the other three another day - just in case. Sadly none of them survived.

It's pretty heartbreaking to go through the IVF process. All the drugs, stims, retrieval and OHSS and then spend the week watching all your hard work drop off one little miracle at a time. 

I feel guilty. Like I could have done more. I could have taken the weeks pre-IVF off. I could have stuck to the diet, rather than relaxing it. I could have been more diligent with the morning supplements, and excercised and avoided BPA laden bottled water. Watching my little embyos stop evolving, I feel guilty. 

Because it's my fault - all development at this point is powered by mitochondria found in the egg - the egg quality is all on me. So when they stop developing... that's on me. 

One blastocyst. Oh. I know we only need one, but heartbroken doesn't even cover it. Diminished ovarian reserve - it's horrid. I'm still hopeful, though. That this little guy will be chromosonally normal and it'll all work out. I'm so, so hopeful.

Egg Collection

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October 2015.

It's easier this time - I know everyone, I know how it goes and whats expected of me. This familiarity makes it easier to ask questions and I was surprised to find out how much power I had.

I was terrified that I'd ovulated my eggs away before we could retrieve them. Everyone told me they were still there but I wanted to see for myself. So, with some bargaining I was allowed to stay awake for the first part of the procedure, while they cleaned me up and scanned everything. Sure enough, my follicles were still there. I relaxed, and they sedated me.

There's a new anaesthetist who let me ask questions, and surprisingly, responded with such reassurance and compassion. Unlike previous rounds, I was allowed to move the central line from my hand into my inner elbow (which is why I'm so grateful for the new anaesthetist). I hate having it in my hand, it almost always hurts and swells up and is horrid. I have nice veins on my inner elbow, and as long as they strap my arm down there's no fuss. 

I also managed to negotiate a different form of pain relief - one through my veins rather than up my behind. I'm not sure this was a great idea, actually. The collection went fine, and I rushed through the checklist (Eat something, drink something and pee) that they do before you're allowed to leave. I always prefer to recover at home, so I downed loads of water and forced my body through it so we could go.

Not so clever once we were home. I crashed out in bed almost immediately and was in a lot more pain than the previous rounds. I felt like I couldn't use my abdominal muscles at all. This got even worse when I stood up to go to the bathroom - I made it across the hall, but blacked out while in the bathroom. I now have massive lumps on my head and my shoulder where I hit the tub. I don't know how long I was out for, but when I came around I was super hot, dizzy and nauseous. I made it back to bed but oh, I felt horrid.

There's a six on my hand, from where Zee wrote the number of eggs collected so I could see it when I woke. Six. It's not the twelve from last round, or the three from the first. Six is okay. I am disappointed, though. I feel like if I'd done more - stuck to the diet and been a bit more strict with my lifestyle choices we could have got more. We'll see. They say at least four are mature, so that's helpful for setting expectations. 

We'll see. I'm hopeful all four come through fertilisation and grow into healthy blastocysts. Fingers crossed! 

Counting Down - Four days to go!

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October 2015.

We're on the tail end of this round and everything is getting really hard. I'm super tired (though I've been reassured this is a good thing). The shots are becoming a massive hurdle now - my belly is so sore and tender that it's uncomfortable (more than usual!) to do them. It's often three or four a night and I have to psych myself up and push through - definitely not like at the beginning of the round where you just get on with it. 

I worry that I've overdone myself and planned too many things (we're going away for a 6oth, and I'm doing a favour for my hairdresser), but feel obliged to push through. Zee says I'm handling this round better than the last two - I'm less hormonal, I think? I'm not sure. I'm definitely sleeping more, anyway.

My biggest fear going into egg collection is that I've ovulated all my eggs away. We've been a bit fast and loose this round, and I know, I know we had two cetrocide shotes on the last day but.... I still can't share the fear.

I hate this bit, where everything just gets so hard. Eye on the prize through - we're only a few more days out. We've set a date for egg collection. Only four days from now. Only four more days!

Kick Off - Costs of IVF

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October 2015.

The kick off for this round was tonight. It wasn't so bad, really. Zee and I are pro's at this now. Zee mixed everything up like it was no big deal and we did shots just like we've always done them.

The hard part this time was the cost.  The cost of this is heart breaking - we’re on our fourth round which just feels crazy. I hate worrying about money like this, but this is the first round where I haven’t been able to wave off the cost like it was no big deal. I’m feeling the pinch and I hate this. I’m weighing up the treatments that might give us a better chance (like IMSI with it’s improved fertilisation options) and the cost of it (an extra £1700 on top of already a £6600 price tag).

I just… feel like it’s unfair to have to choose between whats best and what we can afford. We had to borrow from family to cover this round. I won’t lie - my pride has taken a hit. I’m unbearably grateful that we have such generous people in our lives but as an independent asking for money because my body is broken is hard. I hate being in this position. I hate asking for hand outs, but I also feel like this is our only shot at a family.

I’m between a rock and a hard place. Infertility - it’s hard. So many tears.

I asked friends to pray for us today. If this is our last round (which is likely because we can't afford another round) then I feel like we should do all we can, really.

Oh infertility. You're the worst. 

CD2 - Bloods, chaos and practicing patience

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October 2015

Pre-round bloods today. The clinic was chaos. I hate going during my lunch break - everyone else is trying to squeeze whatever they need into that free hour too. 

The receptionist I liked is gone (she’s moved upstairs to behind the scenes) and the replacement is stressed and full of disdain, rather than smiles and gossipy stories. Most of my favourite nurses have left. The nurses that are there are stressed out with too many patients. There was too much going on and the waiting room was struggling with extended waiting times and oh. It was not a fun visit. 

I feel terrible about it now, but at the time I made a bit of a fuss because I ended up waiting over an hour for bloods. I’d forgotten that the only reason a clinic is backed up like this is because something has happened to another patient. A patient that could essentially be me - if anything ever happened I’d hope they’d look after me rather than shunting me out the door to deal with the long line of other patients. I’d like to be better at practicing patience.

My nurse was new, I liked her. She was lovely but very very new. I think it helped that I knew what bloods we were taking - LH, FSH, E2 + AMH, where to go and what coloured vials she needed. I even went as far as tourniquetting myself up and sterilising my inner elbow for her. I was glad that there was no drama, just bloods. She was pretty amazing, the best blood taker I’ve had! Didn’t even feel it.

Truth: I’m not sure that my FSH will be low enough to move forward. It’s been such a stressful month. We’ll see. I’ll find out tonight, anyway.

——

My FSH levels are low (hurrah!), but heartbreakingly my AMH has dropped 5 points since I got it done last December. My AMH is getting lower and lower and lower, and my odds with them. Oh. Sadness. The ups and downs of infertility, hey?

Round 4 - CD1

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Oh. It's always an odd moment, while you're sitting on the toilet having discovered that your cycle has come. That pause when you know that from here, time will shrink into moments. It will be counted out in days, slowing itself down to lots of waiting interspersed with scans, bloods and medication. That the next 15 days till egg collection (fingers crossed I get that far) will be quite emotional ones.

Oh hope. I feel like I'm hoping for a miracle, and I'm scared to hope.  I'm scared to hope that I'll respond well to the meds and will produce many mature eggs. That a large number of them will fertilise well and grow into chromosomal normal blastocysts that survive sampling and freeze well. That's the happy days plan. Fingers crossed. 

If this round goes well, it will be our last round of IVF. After a year of this I'm hopeful that we'll be done, that we can go back to living and happiness and life.  

So, CD1. I've emailed the clinic to organise bloods to make sure that my FSH isn't too high, and then we'll start. We'll see, the next few days will let us know if we're moving ahead, or not. 

Fingers Crossed.