An update on where we’re up to on our IVF journey
I’m back at work after they confirmed that the miscarriage completed. In fact it did take pretty much most of the two weeks to complete. (The more horrible two week wait, as I’ve christened it.) I learned a lot about miscarriage that I never wanted to know. I told some people and dealt with the universally sympathetic reactions and the usual platitudes. I grabbed happiness where I could. I generally feel pretty good in myself… Like someone who’s come through something difficult and sad, but I feel like I’ve been through the worst and it’s got to get better from here.
They confirmed in my final scan this week (yet another TV scan) that I have a significant fibroid right smack bang in the centre of my uterus. It’s something like 1.5cm across, so it’s larger than our little Pizza Baby was before we lost him. The nurse practitioner and the doctor at the Emergency Gynaecology Unit (EGU, where you have to go when you’re having a miscarriage) both said that they thought this would affect both the success rate of implantation (as it’s right in the middle of the womb) and the chances of developing a successful pregnancy.
We were kind of surprised that they hadn’t done anything about this beforehand. We are in the UK and treated on the NHS (National Health Service), which means that a lot of the time the treatment is not hugely diagnostic before the first cycle. I think the NHS is amazing and I am so grateful that we don’t have to pay for this. (NB We do pay indirectly through taxation, and we have to pay for prescriptions but this is nothing compared to other countries or going private.) Our NHS catchment area means we are eligible for 3 cycles before we’d have to go private. However it does seem that private clinics and overseas does more testing than we experienced – I guess this happens when the patient is directly paying for treatment, and I’m sure that they’ve worked out the optimal success rates for going straight to IVF.
We’re not sure how long the fibroid’s been hanging around for. In my previous op for endometriosis (my second version of this op which happened last year before we started IVF this year) it was mentioned that there was “something” that looked like a fibroid, but that it wasn’t in the womb lining and wouldn’t affect pregnancy and we should just go ahead with IVF. So I don’t know if this fibroid is the previous “something” that has grown, or if it was always there (as the endo op I had doesn’t look inside the uterus apparently), or if maybe it’s been there for years and years and affecting my many years of infertility. I can’t imagine that it has… but I’m not an ultrasound expert so I don’t know if I had it before. I certainly don’t remember having this big black blob in the middle of my uterus.
So the good news is – the nurse called me from the EGU and said that their doctor will see me within 6 weeks. I was mainly worried that we would not be able to go back on the waiting list for IVF (Cycle #2) until this has happened. Also the NHS waiting list for GP referral is 18 weeks, so I’m lucky that they can see me within 6. I am hoping that it is quite straightforward and gets resolved quite quickly and then we can get back to trying.
Some observations and feelings
I wanted to explain how I’m feeling right now because it is all part of the IVF experience, which I’m trying to document on this blog. And there are so many thoughts and feelings, and they change on a pretty much hourly basis!
Other people’s reactions: platitudes or downsizing your loss
The first thing I think that is very noticeable is how it feels when you tell someone about the miscarriage. I think people just don’t know what to say. They are universally sympathetic and offer condolences – this, selfishly, I feel is a great get out of jail free card for when I couldn’t face social occasions. Nobody’s going to force you to go to their birthday or come to their baby shower if you mention the M word.
However: the platitudes are hard to deal with. The most common in my experience have been “It happens really often” and “It was really early” and “I knew someone who had a miscarriage and they got pregnant afterwards and it was all fine”. The problem with these platitudes is that it feels like they’re diminishing your loss.
I really don’t care if you think “It wasn’t really a baby” – he was a long awaited baby for us*. We had been going through this process (TTC and then IVF) for years and months so we can’t “Just try again because it’s your best chance after a miscarriage and isn’t it great you now know you can get pregnant…”. We are not like those people who just got pregnant without trying. It took ages and ages and we have to process that loss, and it’s big. (*I don’t know what gender our baby was, but I use the pronoun because we thought of him as a person, a not-yet-born baby, not an it.)
I don’t think people understand just how horrific a miscarriage is – in my experience it was not like a heavy period. It was contractions and pain and bleeding and passing a very small dead baby and clots, unpredictably, over two weeks. I don’t have periods like that. I fully understand that a lot of people don’t have direct experience of miscarriage so can’t be expected to know that – I didn’t beforehand. But it definitely has felt to me that people have thought it was somehow easier to deal with because it was “early”.
I also think this not talking about pregnancy for 12 weeks is weird. I still wouldn’t, because it would be difficult for me at work, but I find this culture of not talking about pregnancy/miscarriage is so strange when you are going through one of the most significant experiences of your life. And you’re just expected to move on and forget about it afterwards.
How it affects me vs how it affects my partner
I have really noticed that we manifest our feelings in different ways. T is naturally a very positive person. He is pretty much the best man in the world, and he is considerate and kind. He is also an optimist and and action planner. I am a bit of a loose cannon, direct but up and down and all over the place emotional, and I had a physical attachment to the baby that he didn’t have, and a painful physical experience that he didn’t experience. When I was in pain, he looked after me and was sympathetic. He held me when I cried. (I rarely cry and only cried once but got all kind of snotty and hysterical – before it happened, before the final scan of doom – after the ambiguous “Come back in a week” scan.) But at times I’ve just felt that it didn’t affect him very much.
From T’s point of view the miscarriage was confirmed and then had to happen, but now it’s over, he’s all about trying again! And he looks at it like we were an outside bet from the get go, and he just sees this as one opportunity loss from a larger set of opportunities – his optimism means he thinks we just need to move on to the next opportunity. From one point of view this is nice because I am good when I’m chivvied not to wallow. It is also nice just to be a couple, and he is being great about making me feel wanted physically – at a time when my body confidence (weight gain through IVF and pregnancy) is at an all time low. During the uncertain time of possible pregnancy loss and IVF side effects, I just wasn’t in the mood – but now it’s like he just wants to go for it because he thinks in his optimistic T way that we might be able to conceive naturally. Plus it just means we can enjoy what we like about being a couple, a physical closeness and just having fun without worrying about all the IVF and TTC stress.
I’ve talked about feeling sad a lot and T has tried to cheer me up. He’s cooked for me and he’s been nurturing and nice and given me lots of cuddles. He’s also left me to wallow when I was at home off work and just wanted to sit on the sofa all day and eat rubbish. So I’m not complaining – I’ve just noticed we’ve reacted differently. I feel like I think about what happened pretty much constantly and I feel like T thinks about it once in a while. He’s looking forward more and encouraging me to do that. I’m okay with it; we just both have understandably different experiences, even though it was a shared experience. If that makes sense!
Anger/frustration at failure/loss compared to others
I’ve found myself in the past couple of weeks feeling a sort of insane jealousy-anger-frustration-madness whenever I see pregnant women. I see them all the time. It’s summer in London; it’s hot and pregnant people appear to be omnipresent. It’s like I see their gigantic baby bumps and I just have a millisecond of wanting to scream it’s not fair!! I feel like I’m a failure – I’m bloody late 30s and I have never managed to sustain a successful pregnancy. Yeah, I eventually got pregnant but where did that get me? Nowhere!
I’m jealous of their buggies. I see them and I look at what make it is and I mentally compare it with the one that I was going to get, that I’d already picked out in my head. I see them smoking whilst pushing the pram and I want to knock them out. (All these emotions last like less than a second. It’s like this sudden flash of anger-pain-resentment and then it’s gone. Please be assured I would never act on these thoughts. The best way I can describe them is like that millisecond thought you have when you’re standing somewhere high and you wonder what it would be like to just let yourself fall. Or is that just me?)
I had to sit in the EGU on several occasions whilst pregnant women waddled past or sat there waiting with their toddlers running around screaming and I want to scream too.
I’m sure these feelings will pass. But I really found myself having them a lot lately.
My sibling (who already has a young child, the first grandchild) has passed his Golden Child baton to his child. The grandparents were overjoyed when grandchild #1 was born and I found it very difficult as I was going through my marriage breakdown and infertility problems (ops etc) within the context of that. I also had compex feelings about having been adopted and my insecurities around that when I would go to the family home for family gatherings. I found it hard to react well; although I did make the effort, we didn’t see each other that much as I was going through the separation and moving out, and I tried to avoid those situations. It also caused lots of arguments with the family and my relationship which were probably more driven by me and my inability to deal with the situation and emotions it was throwing up for me.
Fast forward to now, and our relationship is much improved within the family, and we all dote on the little one. Then they announced earlier this year that they were expecting #2. I felt the old feelings return, but things have changed for me – I’m in a different, great relationship and we knew we were on course to do IVF. I started having fantasies that I’d be able to bond with SIL when she was on her maternity leave as when I found out that the cycle had worked, it would have meant that our maternity leave overlapped. As we know now, that didn’t happen.
I think I always felt resentment that things came so easy for them. That stuff was simple. And that nobody acknowledged my pain. But I never really stopped to think that they couldn’t have known. I didn’t discuss infertility with them. My folks had an inkling but my sib is not that thoughtful at the best of times. When the miscarriage happened, I couldn’t face telling them so I asked my parents to tell them. They did… and the level of support and outpouring of love I received from them was amazing. They all sent loving messages. My parents told me that when they told my brother over Skype, he started crying. My tough brother. It showed me that they did care after all. We are a British, stiff upper lip, “get on with it you wuss” family and yet they all showed me they cared. My pain was their loss too. My brother who cried lost a nephew or niece. And of course my parents understood the pain of infertility because they adopted some of their children when they thought they couldn’t have any naturally.
I don’t know how I will cope seeing my heavily pregnant SIL, which I’ll have to do in the next few days as we have a family event. I am the sort of person who finds it most hard to deal with sympathy – and I know they’ll be sympathetic. I suppose I’ll have to cross that bridge when I come to it.
Re-entering the social scene
When we were going through IVF, I just dropped out of the social scene. I’m very social (some might say borderline alcoholic – joke) and so I didn’t want to have to answer questions about not drinking. In my circle of friends, if someone makes an excuse not to drink then everyone starts going “wooooooo she must be pregnant!” – I didn’t want to have to deal with that. I missed a lot of socials. People started asking why I was so busy all the time. (I was at work, too.)
I’ve told a few friends what happened – very few. And they’ll help me re-enter the scene. I went to one party before the miscarriage started, because I’d been commissioned to make the cake. But it’s a slow process to get back out there. I half feel like I don’t want to yet. I’m doing one or two things with my BFF. I’ll gradually ramp it up again. I guess it just takes time.
Trying again and complications
So for us, the next steps are that we will be waiting until the next time… and before that, the operation… and in the meantime, we get back to our normal lives and we just – get on with it.
It’s a very British way to be. Stoic. Uncowed in the face of adversity. And I’m really quite okay in many aspects of my life… I sort of stop myself and pull myself up now and again, and I tell myself that I’m very lucky to have the life I have. It has its little complications but I’m lucky and fortunate. I live in a developed country and my government gives me the opportunity to try and address my fertility issues without incurring huge personal debt or having to raise large sums of money to make it happen. I have at least two more chances (for IVF cycles) and could then probably go private if we wanted to.
And apart from that – gosh, my life is pretty cushy apart from that. Apart from the fact that our baby died, and apart from the fact that I’ve had infertility for as long as I’ve been potentially able to have a child, I have a roof over my head, a job, my health, a relationship I treasure and a dog that’s the best dog in the world and a loving family – none of which I had when I was born into deprivation on the other side of the world. Bloody hell. I’m doing okay. I remind myself of this daily – when I have those flashes of anger, when I have those suckerpunches of pain.
I will be fine.
I am lucky.
I am okay.
Everything will be okay in the end. If it’s not okay, it’s not the end.
(*My favourite quote)
Live laugh love.
What’s weird for me is that I feel like I’m back to normal life, but I’ve been irrevocably changed. It’s like I have this invisible costume that nobody can see. I sort of look the same, but I’m different. #IHadAMiscarriage