Monday, 28 January 2008

Facing the future

Reading other peoples' blogs, I am struck by how many of you feel that infertility has brought you closer to your partner. Our difficulties in conceiving have, I think, ultimately strengthened our relationship, but they have also at times stretched it to breaking point. We have very different ways of coping - where I search for a reason as to why this had to happen to us, Mr H has somehow managed to achieve what seems to me a zen-like level of acceptance.

Over dinner last night, we had a variation on a conversation that we've already had several times before, and which neatly encapsulates our different approaches.

Me: Do you think that we will ever have a baby?

Mr H: I can't answer that question. We'll have to wait and see.

Me: But what happens if we don't? What happens if a different protocol doesn't work? What happens if IVF isn't an option for us? What happens if we go through this whole process, and we don't end up with a baby at the end of it all?

Mr H: Then our lives will follow a different path from the one we had originally envisaged.

Me: But won't you regret not having had a child? Don't you feel that something will always be missing from our lives?

Mr H: That's a difficult question to answer. How can I know if I'll miss having something I never had in the first place?

When I was nineteen, my mother died of breast cancer. Over the past sixteen years, I have grieved deeply for her. It was a shock to realise that last year would have been her sixtieth birthday. I realised that I had very little sense of what she might have been like as a sixty-year-old woman; in my imagination, she is forever frozen at 44. I do not know what kind of relationship I might have had with her as an adult woman. But I do know that I miss her. I missed the fact that she was not there to help me plan my wedding. I miss the fact that, if I have a child, she will not be there to hold her grandchild, or to offer me advice, or to tell me that I used to do the same thing as a baby.

And in the same way I know that, even if I never fall pregnant again, I will still miss not having a child. Watching other people's children grow up, I will always be reminded of the baby I lost, of the children I might have had. I'm not sure whether it is ever possible fully to come to terms with involuntary childlessness. I may learn to live with it, but I know that I will always carry a certain sense of loss with me, in much the same way as my grief at my mother's premature death has become woven into the very fabric of my being. Like that other, earlier loss, it will shift and change as I shift and change.

Loribeth recently wrote a courageous post about finding her voice as a childless/free woman. She spoke about the social stigma attached to involuntary childlessness:
Society at the moment is so fixated on pregnancy & parenthood that a baby is seen as the only outcome of fertility treatment that can be considered a success. Childfree living just doesn't provide the requisite happy, fairytale ending - even though most of us (eventually) go on to lead happy & productive lives after we abandon treatment - & our dreams of having a family.

Loribeth went on to suggest - and here I hope that I am not putting words into her mouth - that the discomfort that surrounds those living childless/free after loss and infertility is sometimes particularly marked here within the IF community. 'I'm not always entirely sure,' she writes, 'that fellow infertiles want to hear what we have to say about life beyond infertility treatment (and there IS one out there!!). I can remember, on one of the boards I post on, that someone once wryly referred to us as "the black sheep of the infertility community."'

My own recent experiences have brought home the fact that, where infertility is concerned, there are no guarantees. A life without children suddenly seems a far more vivid possibility.

And this is precisely why I am grateful to women such as Loribeth and Pamela Jeanne, who tell their stories with such honesty and courage. This post has perhaps been a rather roundabout way of saying that, although I may lurk more often than I comment on their blogs, I think that they are a very important part of the IF community - as Melissa said in her comment on Loribeth's post, maybe if more people spoke positively about their childlessness, and if there was more support available for those who decided to stop treatment, then maybe it would become easier to accept childless/free living as a potentially creative way out of the pain of infertility.

Sunday, 27 January 2008

On not counting your eggs before they're retrieved

Over at Just One Bean, the lovely Katarina recently shared a story about a woman she had encountered on a message board. This woman was due to start an IVF cycle in March, and wanted to know if it would be OK to take a trip to Disneyland the following month, since by then she would be six weeks' pregnant. My own obsessive Googling has recently unearthed a similar post from a woman who was just beginning her first cycle of IVF here in the UK. She was overjoyed to report that she had managed to get all of her maternity wear for less than half price in the January sales.

I've been thinking a lot about these women over the past ten days or so. When I read Katarina's post, I prided myself in not sharing what I considered to be the Disneyland woman's misplaced optimism. I was not nearly so naive, I told myself. I was not jumping ahead of myself and making plans that very probably would not come to fruition. When I started IVF, I was daunted by the enormity of what I was about to put myself through, physically and emotionally. The only way I could make sense of it all was by breaking the cycle down into a series of smaller stages. I was, I wrote on Katarina's blog, focusing on getting to the next stage - on making it through the next injection, the next scan. I could not, I suggested, project myself forward even to the point where I might take a pregnancy test, let alone imagine myself six weeks' pregnant.

Yet now I wonder, am I really so different from those women on the message boards? It never crossed my mind that this first cycle would have to be cancelled because I did not respond to the drugs. All the tests I had had led me to believe that everything was OK - my FSH levels were good, I ovulate regularly. There was no sign of any underlying problem. And so I presumed that IVF was an option for us. I presumed that, if I did not get pregnant this time round, we would be able to try again - perhaps initially with a FET, and then with a second, or even a third, cycle. I suppose that, deep down, I was presuming that this would all work out for us and that we would one day have a child.

But now I realise that there may not be a happy ending. Maybe the IUI will work. If it doesn't, then maybe I will have a better response on a different protocol. But maybe I won't. Maybe, just maybe, this could be it.

Tuesday, 22 January 2008

On being a 'good' patient

Thank you all for your supportive comments about my difficulties with Dr Abrupt - his ears must have been burning over the weekend!

Hekateris mentioned that she had had similar problems at another UK clinic, but didn't say whether she was being treated as a private or an NHS (National Health Service - i.e. state funded) patient. We are paying to have private treatment in an NHS clinic, which I think may go at least some way to explaining Dr Abrupt's attitude. I don't want this to turn into a lengthy post about the shortcomings of the NHS, so will only say that there is huge pressure on resources, and the impetus seems to be to get people in and out as quickly as possible. We were aware of this when we chose this particular clinic, as opposed to the fancy private one fifty miles further away; we decided that it was more important to be treated in a research-led clinic, rather than somewhere that offered fluffy dressing gowns and up to date magazines in the waiting room.

This does not, however, entirely excuse Dr Abrupt's behaviour on Saturday. I left the clinic feeling profoundly infantilised. Obviously, this may say rather more about me than it does Dr Abrupt - I was, after all, brought up to be a good little girl, and not to bother the grown ups. And yet it also says something about the authority patterns that continue to subtend our dealings with our doctors: however well-informed we may be, we are still led to believe that the Doctor Knows Best. As many others have already stated far more eloquently than I ever could, one of the most difficult things about infertility is the loss of control. In our bid to have a child, we hand our bodies over to the medical profession; we obediently take the drugs they prescribe, drugs which disrupt the cycles we have so painstakingly learnt to chart (one of the most difficult things about the last few weeks has been the feeling that I no longer understand what is going on inside my own body). We are rendered not only emotionally but also physically vulnerable, as we lie on their couches with our most intimate parts exposed. One of the ways in which I have tried to claw back some control is by finding out as much as I can about my own condition. I am an academic, and I approach infertility in the same way as I do any other unfamiliar topic: I read around the subject, and then I ask what I hope are intelligent and informed questions. And that is precisely why I do not like being patronised and dismissed.

We returned to the clinic yesterday for the IUI, still prickling with resentment towards Dr Abrupt. Despite some anxieties in the car on the way over, Mr H rose to the occasion and came up with the goods, and then at 1pm sharp we were called in for the treatment itself.

The whole thing felt a little perfunctory. I thought that they might do another scan to confirm that we were all ready to go, but no-one even asked if I had done the trigger shot on Saturday evening. We were both asked to confirm our full names and dates of birth, then Dr Abrupt got busy with the speculum. The procedure itself was over really quickly, and was far less uncomfortable than a smear test. From behind the curtain, I heard the sound of Dr Abrupt removing his latex gloves. I should lie there for about five minutes, and then I could leave, he said. I then heard the door opening. 'Dr Abrupt?' I called. He stuck his head round the curtain. I took a deep breath. 'I feel that our appointment on Saturday raised more questions than it answered, and I just wanted to make sure that we would have chance to talk through some of those issues in more detail before we started another cycle of IVF.'

'If the IUI doesn't work, then of course we will arrange a longer appointment in a few weeks time to talk about what we learnt from this cycle, and to think about what we'll do differently next time. But for the time being, try and think positively.' He even managed a reassuring smile.

Obviously, he does have something resembling a bedside manner!

Five minutes later the nurse came in. If I hadn't had a period in a couple of weeks, I should probably do a home pregnancy test, she informed me. Would I not have to come into the clinic for a beta, I asked. 'Oh no,' she replied, 'that's only if you were doing IVF.' Should I start using the progesterone pessaries, I asked. She did not know, but would go and ask Dr Abrupt. She returned a few minutes later. 'Oh no,' she answered - you've guessed it - 'those are only if you're doing IVF.'

So now we wait.

Saturday, 19 January 2008

Fourth appointment - at which more questions are asked than answered

We got up early this morning, and reluctantly drove the 25 miles to the Great Big Fertility Clinic for our appointment with Dr Abrupt.

Afterwards, we conducted a lengthy postmortem over lunch. Was I being unnecessarily pushy and demanding, I asked Mr H. 'No,' he replied, 'but Dr Abrupt did a pretty good job of making you feel that you were.'

Mr H has up to this point been a major apologist for Dr Abrupt. Dr Abrupt has, Mr H has consistently pointed out, an excellent reputation. He runs one of the largest and most successful IVF units in the UK outside London. For those who set store by such things, he was last year listed as one of the seven best fertility experts in the country by Tatler magazine. More importantly, Mr H recognises in Dr Abrupt a fellow man of science. Like Dr Abrupt, Mr H does not deal in what ifs or maybes; he prefers cold, hard statistics.

But today, Mr H came away from our appointment feeling as non plussed as I did.

The dildo cam revealed that three of the follicles on my right ovary had grown to 19mm, 14mm and 13mm respectively. The remaining two follicles hadn't grown beyond the 10mm stage. 'We have seen this sort of thing before,' Dr Abrupt blithely commented. 'Some couples like to go ahead with egg retrieval, but others prefer to cancel and start treatment again in a few months. What would you like to do?' 'What would you recommend we do?' I asked. He did look pretty shocked to have been asked such a direct question, but eventually conceded that it would probably be best to cancel, given that I only had one fully mature follicle. At this point, I raised the possibility of an IUI. He went along with the suggestion, but does feel that the chances of success are pretty slim given Mr H's swim up analysis. Dr Abrupt would, we decided over lunch, have made an excellent politician, given his seeming inability to respond to any question directly, but instead to quote statistics or to else draw graphs on the back of patients' charts.

'Can you give me some reason as to why this might have happened?' I persisted. 'Is a poor response always indicative of a diminished ovarian reserve?' He replied that a first cycle of IVF was as much a test as a treatment, that they had gained some important information about our fertility levels as a couple, that they had put me on a standard protocol based on my Day 3 FSH levels, that they could safely increase the dose of the stimulant drugs next time, and that they had many different protocols they could use. At this point, I saw my chance and asked him whether those different protocols included a shorter, 'flare' one.

By this stage, it was becoming apparent that I was beginning to get on his nerves. Dr Abrupt, I think, looks at his patients and sees only a set of reproductive organs which will or will not do what they are supposed to. He does not realise that those organs are housed in an individual, an individual who has endured years of heartache before she winds up in his clinic and who will, in all likelihood, have spent some of that time finding out as much as she possibly can about her own condition. He retorted that he had a waiting room full of other couples and so was not willing at this stage to get into discussions about my next cycle, that we would have to wait a couple of months at least before resuming treatment, and that he would explain the short protocol to me nearer the time.

My many questions will evidently have to wait until Dr Abrupt is ready to answer them. But I am not going to be intimidated: I will store them up, and keep asking until I get a satisfactory response. You've all been so helpful with your comments and suggestions, and I'm reassured to learn that several of you have bounced back from a similar situation. Based on some of your comnments, I'm quite reluctant simply to go with an increased dose of Menopur next time round, and will be pushing for a different stimulant.

In the meantime, however, we are going ahead with an IUI - I will do the trigger shot at 10pm this evening, and then we will return to the clinic on Monday morning.

Friday, 18 January 2008

Thank you

After spending much of yesterday crying, and cursing my lousy fucking ovaries & the lousy fucking doctors, I went to bed at 10pm with a splitting headache. I logged on this morning to find all your fantastic messages of support. I want to thank each and every one of you for your kind words - it means a great deal to know that there are so many of you out there rooting for me.

Luna asked about Mr H's SA. Based on the tests we've had done so far, his count ranges from between 17 & 19 million, and motility between 54% & 76%. The main problem seems to be with morphology (the results have consistently showed around 75% abnormal forms). They also do not appear to hang around for that long - when we switched to this particular clinic, they performed a swim up test which showed that, two hours later, most of them are dead in the water.

And yet, in spite of Mr H's wonky sperm and my now seemingly recalcitrant ovaries, we did manage to conceive without medical assistance (I then lost the baby at seven weeks) - which is what led me to think that IUI might be a way of salvaging something from this cycle.

I've spent the morning obsessively googling such cheering phrases as 'IVF poor response' and 'diminished ovarian reserve', and have come up with a list of questions ready to ask Dr Abrupt tomorrow:

Is it possible for us to convert this cycle into an IUI? And secondly, what are the costs involved in doing this? As Claire so rightly acknowledges, money is an issue in all of this. If we cancel this cycle prior to retrieval, we still have to pay £1,000 plus £500 for the drugs (the bulk of which I have now taken). If we go ahead, we are looking at £3,000 for a complete cycle plus the £500 for the drugs. Working on the assumption that we are unlikely to get a positive result with this first cycle, then it makes financial sense to cancel & focus our efforts on the next cycle, rather than paying out for something that probably will not work.

Other questions for Dr Abrupt:

Why did I have such a poor response to the Menopur? Is this an indication that my eggs are in fact past their sell by date, or do they simply need to adjust the meds?

And finally, leading on from this last one, do they have a protocol in mind for next time? As both Mel and Luna asked, is there a particular reason why they seem so intent on Menopur? Would a shorter, 'flare' protocol perhaps produce better results?

From what I read, it seemed that acupuncture may help - does anyone have any thoughts, positive or negative, on this one?

Dr Approachable said that I should in the meantime carry on with the Menopur injections, which I have been doing. But all we can do now is to wait - tomorrow's appointment will presumably resolve things one way or another.

Thursday, 17 January 2008

Third appointment - at which I am proved right, shit does happen

This morning, I headed back to the Great Big Fertility Clinic for another scan.

After a full week on the Menopur injections, I have managed to produce a sum total of five follicles. On my right ovary, I have two follicles measuring 10-13mm, plus another two measuring 8-10mm. On my left ovary, I have one follicle that is well under 10mm.

We are to go back to the clinic on Saturday morning for another scan, however at the moment our options - as outlined by Dr Approachable, who was wielding the dildo cam this morning - are as follows:

1. They go ahead and retrieve the eggs from the two largest follicles early next week. Given that we were scheduled to do ICSI, which requires fully mature eggs, and there is a further chance that the ICSI process may itself damage a certain percentage of those eggs, the chances of fertilisation look fairly slim.

2. We cancel this cycle owing to my poor response to the stims, and start all over again with a more aggressive protocol in a couple of months.

I did suggest a third option, that we turn this cycle into an IUI, but Dr Approachable pretty much ruled this out owing to Mr H's poor swimmers.

While I sobbed into a tissue, he made all sorts of reassuring noises - my most recent bloodwork showed that my FSH levels were 5.6, which he considers good for my age (I've just turned 36). Based on those results, he told me that there was no need for me to panic about having a diminished ovarian reserve. It was, he suggested, by no means the end of the road for us; next time round, they would simply increase the dose of Menopur.

But I still don't understand why this has happened. Did I do something wrong? Did I administer the injections incorrectly? I've spent the last three and a half weeks pumping myself full of drugs - why didn't my stupid, fucking ovaries respond?

I thought that starting IVF would take us one step closer to having a baby, but that now seems further away than ever. Before today, our problems never seemed insurmountable. I checked out fine; all our difficulties seemed to lie in Mr H's wonky sperm. ICSI would, we thought, enable us to bypass that particular problem. We weren't naive enough to think that it would work first time round, but we did think that eventually it would. 'Maybe it'll take us two or three cycles,' we told ourselves, 'but we'll get there in the end.'

But now we're facing an entirely new and unexpected problem. The door hasn't exactly been slammed in our face, but I do have a sense that it's drawing slowly shut, and right now it seems that there is very little I can do to stop it.

Tuesday, 15 January 2008

Caring and sharing

In bed this morning, Mr H had the temerity to complain that I had not shaved my legs. 'Please don't cuddle me,' he implored. 'When you wrap your legs around mine, it feels like you're stabbing me with hundreds of tiny needles.'

I managed to resist the temptation to load up a syringe of saline solution and stick him there and then. Instead, I brandished my IVF goody bag at him and shrieked, 'How would you like to find out how it REALLY feels to be stabbed with hundreds of tiny needles?'

I guess I can now add irritability to the list of side effects from which I am suffering.

Friday, 11 January 2008

Over the next hurdle...

This morning, I got all psyched up to inject myself for the first time. I unpacked my IVF goody bag, assembled my sharps bin (just the IKEA bookcase to go, then), read through Melissa's fabulous advice, snapped the top of the little vial, drew up the solution, mixed it with the powder, switched needles, got rid of the air in the syringe, loaded up the Autoinject pen, took a deep breath... and fired!

Using the Autoinject pen made the process a lot easier: I'm sure I would have been even more freaked out had I actually had to watch the needle going in...

But that first injection really did feel like a rite of passage - I'm half hoping that I may now be invited to join some secret IF society that no one has told me about before!

Thursday, 10 January 2008

Second appointment

This morning saw our second visit to the Great Big Fertility Clinic. Dr Abrupt wasn't on duty this time, so we got to see Dr Approachable instead, which meant that I had a chance to raise some of the questions I didn't feel able to ask during our last appointment. The scan confirmed that I was ready to start the stims, and the nurse taught us how to administer the Menopur injections. Having shown us how to prepare the shots, she then did the first one for me, so I have still to get over the hurdle of injecting myself - I'm sure tomorrow morning will find me dithering anxiously in the bathroom, syringe in hand!

Our next scan is scheduled for a week today, with the retrieval tentatively planned for 21 January - gulp!

We were done at the clinic by just after 9am, and I then popped into work to collect a pile of marking. Because Mr H had taken the whole morning off work to come with me, we decided that we had time for a quick trip to IKEA to purchase an extra bookcase to house our ever-burgeoning book collection. Two years ago, we bought a new kitchen from IKEA. I will not re-hash the whole sorry tale again, but suffice it so say that I made so many trips backwards and forwards from IKEA at that time to choose the kitchen, order the kitchen, pick up extra pieces of the kitchen that were not delivered at the time, and to return bits of the kitchen that we did not order, that I am now like Pavlov's dog - as soon as I draw into the carpark, I start salivating because I think I am going to get a hotdog soon!

My aim is to get my marking done before I go back for my next scan. Am now accordingly eyeing up the pile of essays with trepidation - did I actually manage to teach the students anything at all last semester?

Tuesday, 8 January 2008

Forward planning

Normally, when I get to the end of a box of tampons, I buy another box – that way, I won’t get caught short the following month.

This month, however, I paused and thought about it some more. If I get a period next month, it will be because this cycle of IVF has failed. Should I remain optimistic, and work on the assumption that I may not need said tampons? If I buy the tampons, am I admitting to myself that I won’t get pregnant as a result of the treatment? Will this then become a self-fulfilling prophecy?

I want – no, I need – to believe that this will work. I do not want to think about how I will feel if I get a negative result. I am terrified by the thought that I could put myself through all this, and still be left with nothing at the end of it. And yet I know that, statistically speaking, a negative is a more likely outcome than a positive. Obviously, there are plenty of stories with a happy ending out there. But there are lots of others that don’t end so well: I am not na├»ve enough to think that this will definitely work out for me.

Mr H tells me that I am a born pessimist - that I could make Eeyore look cheerful. But experience has taught me that shit does happen, and that it’s best to be prepared. And so I bought the box of tampons.

Thursday, 3 January 2008

Is it me, or is it hot in here?

I am now - hopefully - past the half-way point in the down regulation phase. I've been taking the Nafarelin spray for ten days now, and the side effects seem to be kicking in nicely.

I'm getting a lot of headaches and hot flushes (hence the title of this post!). I also feel terribly depressed, and I cry at the least thing. I don't know whether this is because I AM depressed, or whether it's because of the meds - somehow I feel horribly out of control, both of my body and my emotions.

This first phase of the treatment seems to be really dragging - I still have another week to go before our next appointment at the clinic. Hopefully then they will confirm that it's OK to start the stims - maybe then I will start to feel like a bit more is happening.