The Long Awaited Update

Sunday, 15 September 2013. It’s five days since that disappointing fertility clinic appointment, and I’m in Oxford on business. The meeting yesterday went smoothly, but I wake up feeling panicky. I try sitting mindfully with my emotions for a minute and immediately I find it – that lake of tears just below the surface. It feels like a good few hours’ worth of sobbing, but now isn’t an option because I have to check out of the B&B by ten. I text a friend and arrange to meet for Mass. Church is something I both long for and dread, because I need God but I’m very angry and upset with him. I hate how every service has become an exercise in not crying rather than an opportunity to worship.

Later, my friend gives me a tour of Merton College. In the distance, I see the turreted tower that has been calling to me all weekend – that seems somehow familiar and deeply meaningful. I ask my friend about it and she says it’s Magdalen, C. S. Lewis’ college. She shows me the stone table where Lewis and Tolkien used to sit and drink on summer nights, followed by Tolkien’s old bedroom (which is now her office).

The stone table and bench where C. S. Lewis and J. R. R. Tolkien used to sit and drink. Merton College, Oxford.

The stone table and bench where C. S. Lewis and J. R. R. Tolkien used to sit. Merton College, Oxford.

Back home, I scan my bookshelves for something to read and The Problem of Pain catches my eye. Maybe that’s what Magdalen Tower was trying to tell me.

Saturday, 21 September 2013. I stand on the road leading off Holy Island with the sea swirling around my feet. This is what I’ve been waiting for, after over two hours of watching the tide creep across the mudflats.  Thirty minutes ago, OH and I held our breath as a car tried to leave Lindisfarne, only to be forced back at the causeway. The locals are full of stories about tourists who think the safe crossing times don’t apply to them, or who ask, “Where’s the other road off the island? The one I came in by seems to be flooded.” But the tide stops for no one – no matter how hard they pray or how good their reasons for needing to get to the mainland – and nature won’t rearrange itself for me either. The retreat I’m attending at the Open Gate feels very healing, a chance for me to grieve my losses and come to terms with the path I am now on.

The road leaving the Holy Island of Lindisfarne, Northumberland, flooded at high tide.

The road leaving the Holy Island of Lindisfarne, Northumberland, flooded at high tide.

Wednesday, 23 October 2013. We are back at the clinic for our IVF “consent” appointment. I find myself tearing up when the nurse says we can start down regulation today, if we wish. In the end, for practical reasons, we opt for a date in a week’s time.

Wednesday, 4 December 2013. I stare at the ultrasound screen in disbelief. Egg collection is supposed to be on Friday, but I only have one mature follicle. The nurse leads us into a side room to discuss the findings, and I hear the words “two more days” and “IUI”. At first I think she’s offering us a choice, that we can either delay egg collection or switch to IUI if we don’t want to wait. But no: if my ovaries do not respond in two more days, this cycle of IVF will be cancelled and converted to IUI, the treatment that has never worked for us, and it will still count as one of our three NHS-funded attempts. All I can do is cry.

Later, I research my predicament online and it’s not good. Even if I manage to get three eggs – the maximum the nurse thinks is possible – I will be classed as a “poor responder” with a reduced chance of conceiving. The fewer eggs you have, the less likely it is that one of them will be good enough quality to create a baby. Some poor responders do better on a higher dose of meds, a different drug or a shorter protocol, and it could be that Menopur after down regulation just isn’t right for me. But equally, this could be a sign that my ovaries are on their last legs, and for some women the only options are egg donation (thank God OH is a woman) or adoption. “In conclusion”, states the article I am reading, “patients who are labeled as poor responders certainly face a formidable challenge in achieving a pregnancy.”

Monday, 9 December 2013. Egg collection is the most beautiful thing that has ever happened to me. I couldn’t care less about the needles through my vagina and the catheter used to drain my bladder, which was stubbornly blocking my left ovary – I would go through it all again any day for fentanyl and midazolam. The nurse comes to see me in my blissed out state and tells me they got three eggs. Three! The very best we could have hoped for, and apparently a 100% retrieval rate is quite rare. Of course, I’m too stoned to take in this good news and I have to be told again later.

Tuesday, 10 December 2013. The embryologist phones to say two of my eggs have fertilised. It’s the oddest feeling. I have two potential children, but they’re in a lab somewhere and I must trust someone else to take care of them. I feel strongly that I want them back inside me where they belong.

Thursday, 12 December 2013. I attend for embryo transfer with a full bladder, as Junior Doctor suggested, and it seems to work. The nurse reports that there is only a slight bend in my cervix, although for some strange reason it doesn’t want to be prodded with a catheter, and keeps shrinking back out of the way. Still, our two six-celled embryos are transferred without any major issues. I am slightly surprised not to be given The Talk on the dangers of twins, nor to be asked to consider transferring only one, but I push the likely reasons for this out of my mind.

As we’re leaving theatre, the nurse pats me on the shoulder and says, “They will not, under any circumstances, fall out.” Well, duh, I think, I know that. Then I realise that I am walking in a slightly odd way, as though I want to keep my legs as close together as possible. I put off going for a wee for an hour just in case.

Monday, 23 December 2013. I wake up with trepidation. I’m fairly certain I’m not pregnant, and I can’t put off facing the facts any longer: today is the day I have to pee on a stick and phone the clinic with the results. “Shall we get this over with, then?” I say to OH.

An hour or so later, I’m put through to what must be the only nurse in the clinic who doesn’t know who I am. I tell her our news in disbelief. “Congratulations!” she says. “Is this a spontaneous pregnancy?”

Monday, 13 January 2014. “I can tell you right away,” the nurse says as she inserts the probe, “you have one baby in the right place.” After carrying out the necessary checks (Sprout is measuring as s/he should, and I’m not having twins) she turns around the screen to show me. I watch in wonder as this little blob pulsates. Our baby has a heartbeat! Once I’ve got my clothes back on, I find the consultant we know from church waiting for us in the corridor. She gives us both a hug as she tells us the likelihood of a live birth is now about 95%, and we have as much chance as anyone.

Our baby 5 weeks after egg collection (making me 7 weeks pregnant). The large black oval is my uterus, and Sprout is the white blob in the corner.

Our baby 5 weeks after egg collection (making me 7 weeks pregnant). The large black oval is my uterus, and Sprout is the little white blob in the corner.

I ask the receptionist for an envelope for our scan picture, and am amazed when she and her colleague squeal over the photo and make us promise to come back after the birth. Everyone is so excited. I feel bad for the other patients in the waiting room – my attempts at discretion have been foiled – and I wish I could hold up a sign saying, “This was our seventh cycle of treatment and it was almost cancelled.” Later, my GP asks to see the picture and laughs. She thinks Sprout looks like a bundle of white cloth, the baby Jesus in a nativity play.

Saturday, 25 January 2013. Which brings us to today. It has not been an easy pregnancy so far: the sickness and fatigue are bad enough that I haven’t been able to work. And I don’t think I dare believe that we will actually be getting a baby at the end of it until at least the point where I can feel Sprout kicking. But I know I am incredibly blessed. From the girl who conceived first time (from IUI), to the poor responder at risk of needing an egg donor, to the woman who conceived first time (from IVF) against the odds – I have come full circle.

Moving Forwards Slowly?

Yesterday morning I woke up excited and a little terrified. It was the 10th of September, our long-awaited IVF appointment. I imagined seeing one of the warm and caring doctors that we know well, asking our two A4 pages of questions, and feeling encouraged and supported. I imagined coming up with a concrete plan and knowing what the road ahead might hold.

Today I woke up flat and dejected. The consultation was disappointing. It wasn’t that we got any bad news as such, just that it wasn’t the appointment we had thought it would be.

Things didn’t get off to a good start when another couple arrived in the fertility clinic with their two small children in tow. Although there were plenty of seats in the waiting room, they sat right next to us (perhaps they were attracted by the fellow lesbians?) and right by the door where everyone else would have to walk past them. They hadn’t brought any toys or books to keep the kids occupied, so they were running riot all over the waiting room. It was impossible to shut them out. To make matters worse, the parents periodically made comments along the lines of “you’re a nightmare, you are” or “getting some peace without you two”. Rationally, I know that parenting is difficult no matter how long it’s taken you to get there, and that all mums (and dads) forget to bring toys sometimes, or get frustrated and make disparaging remarks, but I felt the whole thing was very insensitive in a room full of infertile couples. I couldn’t know what their situation was, but I imagined they must have conceived those kids very easily if they were coming back for a third, and the unfairness of it all brought me to the verge of tears. Here was I, waiting to see a doctor who would tell me I was infertile, and they were rubbing it in my face.

Then we were called through by one of the more junior doctors, the one who isn’t particularly warm or empathetic, and my heart sank. He opened our appointment by saying that because I’ve only had two superovulated IUI cycles, I need one more before proceeding to IVF. I explained that I had asked about this when we opted for a fourth natural cycle, and we were told that although the usual protocol is three natural cycles plus three superovulated, we would be eligible for IVF after six IUIs of any sort. The doctor then decided that since we’d been told that by someone more senior, we could go ahead.

Then he scared us by saying that we might need to go back on the sperm donor waiting list before we could have IVF. My first thought was, “That sounds very unlikely, I’m sure he’s wrong,” then, “Oh my God, if I have to wait for another two years I’ll die,” then, “Don’t be silly, if the worst comes to the worst we’ll import the stuff from Denmark again.” I love how I can go from logical to melodramatic to practical all inside the space of two seconds. Luckily, he went out to check and confirmed that our donor is approved for IVF with ICSI*, so there won’t be any issues there.

I didn’t feel comfortable asking all of my questions – the clinic was about to close, and it felt as though at most two or three were expected. (I had around forty.) We were told the next step was to make an appointment at the IVF consent clinic, where the treatment would be discussed in detail, so I tried to focus on the most important ones. I asked why he felt IUI hadn’t worked for me, and he said there probably wasn’t anything medically wrong, that the most likely explanation is simply that we haven’t been trying for long enough. So reading between the lines, although our local NHS criteria make reference to testing my fertility through six IUIs, it seems the cutoff point has been set for reasons that are mostly practical rather than medical. Fine by me. 🙂

I also asked about my cervix causing problems at embryo transfer, and he said they will do a mock transfer first, and that having a full bladder should help. Basically, my cervix is a nightmare to navigate because my uterus is tilted far forwards, and having a full bladder will help push it into a straighter position. That might explain why our first three IUIs were easier: I always go to the loo when I arrive at the clinic, but on those first three occasions they were running late, so there was more in there! I’m a little frustrated that a full bladder was never suggested sooner – I’d thought I was making IUI easier for myself (who wants to need a wee while someone shoves a catheter through their cervix?) – and I don’t understand why I was previously told my uterus was tilted backwards, so kudos to junior doctor for correctly diagnosing the problem with ultrasound and coming up with a solution.

He gave us an IVF leaflet, which answered some of our questions, and I was especially pleased to see they offer 5-day transfers (it’s easier to spot the highest quality embryos if you wait until they’re five days old, although there is also an increased risk of them dying in the lab). I had a scan which showed a normal antral follicle count of eight, and some screening bloods, then we went to reception to book our next appointment. The nurse had said there isn’t usually a long wait for the consent clinic, so we stood there optimistically with our calendars on the September page.

The next available appointment isn’t until 23 October, six weeks today.

I know six weeks might not sound that long to some people, and I’m sure I’ll get through it somehow. I’m just so sick of being in limbo. I want our IVF, all our IVFs, to be over so I can know whether I’m going to have children or not and move on with my life. I’ve spent the past year in a kind of no man’s land where I can’t plan any trips away without worrying about them clashing with treatment, and where our house is cluttered with baby stuff that we might or might not need, and I think that’s the hardest part. The thought of over a month where nothing is happening, for no good reason other than available appointments, is hard to come to terms with. Worse, I forgot to ask any questions about funding. The doctor didn’t seem like the best person to know – and in fact, that’s part of the problem: I’m scared we’ll get to that appointment in late October and find out he was right all along and we can’t have NHS-funded IVF because we didn’t have the right sort of IUI. But even assuming the previous advice was correct, I don’t know how many cycles the NHS will pay for, so I don’t know whether we should be sticking to an extremely tight budget to save up for future treatments. I would be gutted if IVF didn’t work first time (which is about 60% likely) and then we had to give up our dream due to a lack of funds, but ICSI is very expensive.

I guess I know what I need to do: ring the fertility clinic (or look for the answer on the internet) and find out. I also have the contact details for the clinic’s counsellor, and I’m going to make an appointment with her too. I’ve been feeling close to breaking point for a long time, but hopefully with the right support and reassurance, I can get through the next six weeks. One day at a time…

* ICSI is where each egg is directly injected with one sperm, as opposed to being left in a Petri dish to fertilise naturally. This technique is often used to overcome male infertility problems, but in my case, it’s probably been recommended because the sperm has been frozen.

IVF Questions

I promised On Fecund Thought that I would share our list of questions with her, so here they are! It’s proving to be quite a long list already and our appointment isn’t until 10 September.

  • How many fresh and/or frozen cycles will be funded by the NHS? How much do you charge for private IVF and FET?
  • Why do you think IUI hasn’t worked for me? What percentage of apparently fertile women using donor sperm will end up needing IVF?
  • Should we be concerned about the miscarriages, or are they just ‘one of those things’? Does the fact that I have been pregnant still increase my chances?
  • Is there an increased risk of miscarriage with IVF? I’m aware that IVF pregnancies are more likely to miscarry than natural ones, but I believe this is thought to be because infertile women are more likely to have miscarriages rather than because of the IVF itself – is that correct? Is there any chance that selecting the healthiest embryos will actually reduce my risk of an early miscarriage?
  • What do you think our chances of success are, and what can we do to maximise these? What is the likelihood of no viable pregnancy after several IVF cycles?
  • I’m concerned about my cervix making embryo transfer difficult and reducing our chances. How do you plan to address this? Do you do a mock transfer? Should I be concerned about my tilted uterus for any other reason?
  • What’s my AMH and antral follicle count? (I remember being told my AMH was fine, but I’m starting to worry about my age…)
  • Do I need any further investigations? If not, how soon can we start?
  • Is it safe for me to take a prenatal vitamin, magnesium and omega 3s? Are there any supplements you would or wouldn’t recommend?
  • Do you use the long protocol or the short protocol? I’m concerned about down-regulation – since I have a history of depression, would the short protocol be better?
  • How often would I need to come in for scans?
  • Do you use sedation or GA for egg collection, and can OH be in theatre with me?
  • Do you intend to use standard IVF or ICSI, or does it depend on the quality of the sperm once defrosted?
  • At what stage of development do you transfer the embryos, and do we get a choice in how many are transferred?
  • Is it OK for me to use the progesterone pessaries PR?
  • If a cycle is unsuccessful, how long are we likely to have to wait for a review appointment, and how long before we can try again?
  • If a cycle is cancelled, does it still ‘count’ as an NHS cycle? If a privately funded cycle is cancelled, what are the charges?
  • What are the contact details for your counselling service?
  • How much would it cost to store any remaining embryos for a sibling? Would it be feasible to use these embryos in OH?
  • Is it possible to donate any spare embryos to another couple?

I feel rather sorry for whichever doctor will be on the receiving end of these!