The much needed calm…

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After the raging emotions of the last few weeks I have finally managed nearly two days in a row without any sort of anger or crying fit. This could be because I currently have a cold which has filled my head with cotton wool and is preventing my mind from thinking about anything else apart from how much it hurts. But whatever…I’m calling it progress anyway.

Yesterday S and I visited the psychologist at our fertility clinic. We only had to pay 20 euros and so we thought it can’t hurt so why not give it a go. I was sceptical about the appointment, not because I don’t believe in psychology (I studied psychology at university in fact), but because doing the session in a foreign language was not an enjoyable prospect.

As soon as we got into the room with the kindly looking man we asked him if he spoke English and he looked a bit sheepish and mumbled that he wasn’t very confident in it, so we had to push on through in Italian. My husband, who is totally fluent in Italian, began recounting our long story. He had to hand over to me after only a couple of minutes to explain the IVF procedures in detail (I always think that it’s strange that his brain is able to accommodate 4 foreign languages perfectly but seems to flatly refuse to store any knowledge relating to IVF procedures…haha…oh well).

I managed to bumble on through the rest of explanation of the three failed IVFs in Italian. The psychologist then asked me about my emotions and I attempted to explain as best I could. I tried to feel sad and angry (which represents my overriding emotions for the past 10 days) but found it rather challenging as my brain was actually enjoying the intellectual challenge of speaking at length in Italian to a new person. Afterwards S said that I smiled too much…but I couldn’t help it, a stranger was being kind and patiently listening to our problems in my bad Italian and I couldn’t help feeling a wave of gratitude towards him.

We explained the treatment by my employer: the firing two days after my embryo transfer and other things that I won’t go in to detail about here. He said that my boss was ‘mobbing’ me (a word that Italians use to mean ‘bullying’). He also said that the way women are often treated in Italy relation to children or fertility treatments is ‘medieval’ which definitely struck a chord. In addition to my treatment I have also heard other stories of behaviour that would be totally illegal in the UK and all of this has definitely added to my recent fragile state.

Overall we got some support from the session, and hopefully some help in helping to resolve the work issues at least. I’m not sure whether I will return to him as the language challenge makes things difficult. Instead I’ve found a couple of counsellors in the UK who may be able to provide Skype or telephone counselling for us.

So in summary, yesterday we made some small steps in a positive direction. S is being amazingly supportive through this, and we’re holding on to each other for dear life right now…

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Raging emotions

I hope everyone had a nice Easter break.

Here in Italy we had a 3 day weekend so S and I decided to go to France in the car. My parents are visiting us at the moment from the UK so we took them along for the holiday.

The first day was fine, getting physically away from all the misery of the last few weeks was a relief for me. Unfortunately on the second day S and I had a small argument, which really wasn’t that important, but due to our tired and emotionally exhausted states it quickly escalated and set me back on a destructive negative thought train that smashed through the thin veneer of cheerfulness that I had managed to construct.

The raging sadness and anger lasted on and off for the next day and I am embarrassed to say that my parents and husband had to put up with a horrible version of me during this period. A particular exchange sticks in my head: my poor mother reacting to me lashing out at her in anger by saying “We don’t deserve this treatment” and me shouting back “Well I don’t deserve all of this do I?”

Thankfully the emotions finally passed so we could finish the holiday without any more incidents. I do feel guilty about how horrible I was. I am extremely fortunate that my parents and husband stick by me through these periods.

We are back in Italy now and my husband is back at work whilst I am at home alone. Work-wise I am still in limbo as I haven’t been properly made redundant from my job (because my boss doesn’t want to pay redundancy costs) . We are currently in the throws of a potential legal dispute with him which really isn’t helping my mental state but unfortunately can’t be avoided.

It’s been 10 days since the failed FET. Today it’s sunny here and at the moment and I’m feeling pretty neutral – not happy but not sad or angry – so that’s an improvement in comparison to the past few days.

I’m considering attempting to make some positive steps today to try to get myself in a better place mentally…perhaps some yoga and meditation (which were so helpful after my second IVF failure).

Today I am clinging to the single thought that these bad times won’t last forever. At some point in the future we will be happy again. I don’t know how far away that is, but I know it is out there, somewhere in our future…

Post failed FET: picking up the pieces

And so, after three IVFs and one failed FET and a lost job here I am. Somehow still standing…well just about.

It’s been possibly the most difficult two weeks of my life. Finding reasons to get out of bed and to find anything to feel remotely positive about has been excruciatingly difficult. My period started on Sunday which was a small relief (as I had read about the small chance of an ectopic).

We had an appointment two days ago with our hospital where the doctors were very sympathetic. They are stumped as to why our transfer didn’t work with a PGD/PGS normal embryo and a perfect lining. They have given me more blood tests (mainly to check for immunological issues) and will put me on aspirin for the next transfer.

I went to get the blood tests done this morning and hope that they will be back in time for us to do the second FET (of our final remaining embryo) in May with my next cycle. But that depends on when my period comes and if the last 2.5 years are anything to go it will probably arrive at exactly the wrong time, thereby causing maximum possible delays and frustration.

We’re off for a short break out of Italy for Easter which we both desperately need. It’s hard not to associate Italy with our infertility struggles and what with the extra delays caused by bureaucracy and my horrendous treatment at work recently I have a desperate need to escape this country for a while…

Happy Easter everyone. I hope you get few days to relax away from the struggles of infertility and daily life and take a much needed recharge. That’s what I intend to do.

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How we got here part 6: FET #1

And so finally this update brings us up to the present day…

After finding out about our 2 normal/balanced embryos in November 2015 we were ecstatic and keen to move on with a frozen embryo transfer (FET) as soon as possible. We went to see the doctors in early December and were told by them that they wanted to be sure that everything had been checked before going ahead. I got given a huge list of blood tests to do, in addition to a hysteroscopy to check that everything was ok in my uterus. This meant more delays as this exam had to be done mid cycle, and what with Christmas the months dragged on and on turning into another frustrating wait.

In February 2016 we were finally ready to go and I started Progynova (estrogen) tablets daily to suppress my natural cycle. Just like in my stimulation cycles it seemed that my body required more drugs that other people and so I had to return 3 times to check the lining with increased drugs each time. By the end of this stage I was on 4 Progynova tablets a day and a Climara estrogen patch that needed to be changed every 48 hours.

Up until this point I had been lucky to avoid any psychological effects of the IVF hormones, but this time was different. The high levels of estrogen made me extremely anxious and I had an almost constant feeling of dread in the pit of my stomach and was barely able to sleep. It didn’t help that work had been progressively becoming more and more stressful over the last few months and I was starting to struggle under the combined pressures. I took a couple of days off and thankfully was given the ok from the doctor that the lining was thick  enough and that I could start progesterone. Just a few hours after starting the pessaries the anxiety fell away and I was feeling wonderfully relaxed….like I light had been switched on in my head.

I didn’t sleep amazingly well the night before the transfer, but I assume that’s pretty normal. We received the call to say that our embryo had defrosted ok and we rushed into the hospital for the transfer. This time I’d also decided to try out acupuncture, so had been to a session the evening before, and then went to one the afternoon afterwards.

I returned home and spent the following day working from home feeling pretty positive. The following day I returned to work and found my boss acting rather strangely…I tried to ignore it and remain calm, but just before the end of the day he called me into his office and fired me…

I was speechless…he knew all about our IVF struggles and up to this point had been very supportive as I hadn’t let them get in the way of my work. We had even scheduled our second IVF in August so as to avoid taking too much time off from work. I knew that they were having financial troubles and it was a small company so I wasn’t necessarily taking issue with the fact that he couldn’t afford me any more…but I was insanely angry about his timing.

After another (understandably) sleepless night I called in sick for the remainder of the two week wait, which could be easily justified given the circumstances. I was infuriated by his behaviour, but tried my best to put it to one side and focus on being positive for the embryo inside me.

I sent my husband off on a skiing weekend and hung around the city with a couple of friends trying to stay relaxed and positive. A week or so later I was at the stage where a urine test would have shown a 100% accurate result (9dp5dt) but decided to hold off testing until my official beta day (14dp5dt).

The nurse called me with the HCG beta results that day. She said it was positive but at 89 it was pretty low and so I needed to return two days later for another test. And so followed a new kind of wait, a hopeful yet agonising one to find out it we were finally going to get some good news. Unfortunately we didn’t. Instead of doubling the HCG had halved, which meant we were to expect a miscarriage shortly…

Gutted doesn’t do my feelings justice at this point…

How we got here part 5: IVF #3

After our holiday from hell in Barcelona we came back to Milan and returned to work and vowed to move on as quickly as possible…

Luckily we had seen a doctor at our original hospital in Milan in July before leaving for Barcelona and we had booked in a third IVF (all funded by Italian health service except for the PGD/PGS) as a back up in case the second didn’t work.

So I put my head down and kept busy with work and yoga and generally tried to relax as much as possible in preparation for the next cycle which was scheduled for October.

I went into this third cycle feeling much more calm. All the things I had been worrying about (i.e. all the worst case scenarios) had already happened, and so I didn’t really have any hope left, and so anything to worry about. It was just a case of going through the motions: the daily injections, the visits every other day to the hospital, the egg collection, the waiting for results…

This time the doctors, having reviewed our two previous cycles, decided to add daily Luveris injections into the mix which can apparently help with egg maturation. They also upped the injections of Gonal F, starting from 350/day and going all the way up to 450/day by the end of the stimulation phase. On the 9th day of injections the doctors decided that 6 out of the 12 follicles were large enough and so didn’t want to wait any longer for the others to catch up as they thought that the best embryos were likely to be the fastest growing ones.

So we triggered and went ahead two days later. 7 eggs were collected and 6 fertilised. As we were on the public health service we didn’t get and update between fertilisation and day 5 when potential biopsy would be, so it was a long nervous wait. Finally the doctor called to say that 2 embryos had been biopsied on day 5 and frozen and the biopsies had been sent to Rome for preimplantation genetic testing (PGD/PGD).

The results took around 4 weeks to come back and when they did they were emailed through to me which I wasn’t expecting. I read them on my phone on a crowded bus surrounded by schoolchildren with an agonising painful mouth a day after a very very painful wisdom tooth extraction.

I couldn’t believe it….BOTH EMBRYOS WERE NORMAL/BALANCED!!

This was almost as good as finding out we were pregnant! I was leaping around for joy and ripping my new mouth would open by smiling and squealing too much. I texted S and my parents immediately and despite the agonising pain (which continued for another 3 weeks…it was its own kind of hell) felt hopeful for the first time in a long while…

How we got here part 4: IVF #2

After finding out about my Robertsonian Balanced Translocation in July 2015 we decided to proceed with our plan of a private cycle in Barcelona in August. We wanted to keep moving so doing it in August meant that we could combine IVF with a relaxing holiday and not miss too much work. Well that was the plan…

The lead up to the start of the cycle wasn’t that relaxing at all: there was a lot of stress at my work which included the sales director wanting me to work through the August break (which NOONE does in Italy) to deliver on a promise that he had made to a client without checking first. Grr…

We also had issues in communicating with our clinic in Barcelona. They took days to respond to my emails and it was difficult to call them which made things difficult, particularly when buying and starting medications.

Despite all this I started the drugs: down regulating from CD21 of the previous cycle with Buserelin nasal spray followed by Gonal F 350 daily from CD3. We also made it from Milan to Barcelona with our medications intact which was kind of torture for me as I was totally panicked about getting them on the plane and keeping them cool in the middle of the extreme European heatwave in years.

We had a shorter stimulation phase this time (11 days in total) but it was definitely worse in terms of side effects. The Buserlin made me depressed for a week and the Gonal F made my ovaries explode as well as giving me waves of nausea for several hours after each injection. This was not ideal when I had to take it every night before going out for dinner on holiday.

After 11 days of this we triggered and waited for egg collection. A couple of days later we were in the swish private hospital with me surrounded by lovely private doctors and nurses feeling optimistic. We had 9 eggs collected and went off on a road trip out of Barcelona up the Costa Brava with our heads held high, the music blaring, the sun shining and hope in our hearts.

Unfortunately our elation was shortlived. We had a large drop out as only 7 eggs proved to be mature and only 2 fertilised. To add to the disappointment I came down with an UTI and ended up having to take antibiotics.

As part of the swish (and expensive) service we were offered what is called an ’embryoscope’ which basically takes photos of our embryos every hour and produces a sort of time lapse video of their development (see photo below). As we were on the road and away from internet access I tried to avoid checking this too often…obviously I failed and ended up racking up huge mobile data roaming costs in the process.

embryo

One of embryos looking a bit messy

We continued the mini road trip and tried to remain positive for our two remaining embryos, which were biopsied on the 3rd day. We returned on the 4th day ready to prepare ourselves for possible transfer and waited for what seems years on the 5th for our results…we were finally called to the hospital in the early afternoon…we had been told that the results would be very last minute and that I should be ready with a full bladder in case we do transfer…so we waited with our hearts in our throats…

The lovely doctor we had seen on egg retrieval called us in with a sombre face and we knew at that point it was over. Both embryos had chromosomal issues. Our cycle was a bust.

We flew home to Milan the following day after the most expensive and least enjoyable holiday we’ve ever experienced…

How we got here part 3: BT

So the story continues….

After our first failed IVF I was pretty distraught, as I imagine most people are. The stress and hope is so new and a lot to deal with when it all comes crashing back down to nothing.

As mentioned in an earlier post we got most of the first cycle for free here in Italy which was amazing but we did have to wait 5 months for treatment due to various bureaucratic delays. After the failed cycle I was feeling particularly frustrated by these delays and also felt that the hospital has not tested everything they needed to before proceeding with the IVF.

The other challenge we were up against is the way Italy works in the summer. As it was June 2015 by then it looked like the next viable date for a second IVF would be late July/August and that’s when everything shuts in Italy for holidays. I didn’t want to have to wait until September as the year was slipping by so fast so we decided to go private.

We chose a clinic in Barcelona in Spain called Institut Marques. I had heard good reports on UK fertility forums, mainly for their egg donation programme but we decided to give them a try. We had an initial appointment with a doctor in Milan who gave us more tests including a karyotype for me as it hadn’t been done before.

A couple of weeks later I got a call from the blood test centre saying that I needed to come in to see a specialist to get the results of my kayrotype exam as there was an abnormality. It was a Friday morning and the earliest they could do was the Monday morning. As the day wore on the fear seeped into my bones…I started googling the hell out of abnormalities with karyotype tests and concluded that it could be one of three things…

  1. I had a Balanced Translocation where my chromosome were rearranged
  2. I had advanced cancer and my chromosomes had changed in mutated cells in my blood
  3. I was actually a man (OK well this last one was particularly unlikely….but you know it’s amazing what you can semi convince yourself of with too many Google searches)

I spent a very bizarre weekend waiting for the results. We had planned to go on a day trip as a group to Lake Como and there wasn’t any point cancelling. My husband and I spent the day lounging by the lake, eating pizza and hanging out and trying to not ask ourselves “What’s the worst that can happen?” (as for once the answer was really really bad)

We went to the clinic hand in hand on the Monday morning. I still recall every single thing about the room they asked as to wait in: from the grey walls to the poor quality reproduction on the wall. I was preparing myself to be told that I only had a few months to live.

When the geneticist informed me that I had a Robertsonian Balanced Translocation I felt a massive wave of relief flood through me. I wasn’t dying!!

This bizarre weekend was in some ways an amazing jolt of perspective on this whole journey. Knowing that I didn’t have cancer was much more important than my fertility issues.

We had already started planning our second IVF cycle in Barcelona in August, and the real impact that this diagnosis meant was that we’d have to pay a few thousand more for pre-implantation genetic testing (PGD/PGS) and know that our odds of success were not great. But at least I was alive…we were feeling positive…

How we got here part 2: IVF #1

Before I get into the details of our first IVF I should mention something that has added an extra ‘dimension’ to our infertility journey…

My husband and I are both British but we live in Italy having moved here the year before getting married. Living in a foreign country brings extra challenges like struggling through important medical appointments in a less than fluent foreign language as well as dealing with huge amounts of unexpected and mind numbing bureaucracy and delays.

There is, however, one positive of living in Italy: we have been able to get a lot of treatment for pretty much free…if we are prepared to wait for it. We were completely surprised when we discovered this as, being a Catholic country, we assumed that policies related to IVF would be draconian. Indeed they were 10 to 15 years ago, but in response to a rapidly ageing population the government has provided fairly generous funding for IVF. This has helped ease some of the stress and challenges that I know others (particularly those in America) really struggle from. And for that I am thankful.

So back to our IVF #1 story…

As mentioned in the previous post, we had the initial appointment for IVF in late 2014, but due to delays and bureaucracy here in Italy we were able to start our first IVF cycle until May 2015. It was a long and frustrating wait.

We finally kicked off on 4 May, with daily Gonal F 300 injections  combined with Orgalutran to prevent ovulation. After 13 days of injections and several monitoring appointments we were told that we had around 12 follicles of a good size and I triggered on 16 May with Gonasi. Two days later we had egg collection (or ‘Pick Up’ as it is randomly called here in Italy) and 4 eggs were collected. Waking up from the anaesthetic to news of just 4 embryos made my heard sink, but we carried on hoping.

After 3 tense days we were called and asked to come in for the embryo transfer. We were over the moon that we had anything to transfer, even if it was only a 3 day transfer.

We rushed into hospital excitedly and the doctor transferred two embryos and we were feeling optimistic (even talking excitedly of twins). Just before leaving we were given the full report of our embryos and we discovered that they were both only C grade, the lowest grade possible at our hospital, which made my stomach lurch.

We went home and carried on trying to be optimistic (whilst I googled the hell out of grade C embryo success stories) and sat tight for a couple of weeks. Unfortunately, despite being on progesterone pessaries, I started bleeding the day before the beta HCG test and knew it was over…

How we got here part 1: testing, testing, testing

So as mentioned in my previous post we’ve been on this IVF journey for a while, so I thought I’d better give you a quick summary.

It all began in September 2013 with gloriously beautiful and happy wedding to my long time boyfriend and best friend ‘S’. S and I met in 2000 when working at the same company in our first jobs. We became firm friends and over the years this turned into something more. We got together in 2007 and then were engaged in 2012 and married a year and a half later by the seaside in Cornwall in England.

Our first 12 months of trying to conceive were, I’m sure, pretty similar to most couples who face this challenge: a few months of blissful ignorance and arrogant belief that it would happen soon enough, followed by a few months of using OPKs, temping and obsessing over diets, then followed by a visit to the doctor for fertility tests.

After a series of initial tests it appeared that S had the problem, with borderline or low sperm results. In October 2014 he bravely went under the knife to remove a varicocele from his testicles. The operation went well but it wasn’t clear if there was any discernible improvement, and there was still no pregnancy. We were advised that due to his issues we needed to proceed with IVF as our only option. This was a blow, but we knew of others who’d had success so we maintained some hope.

And so the waiting continued…

And so it begins…

I’ve been meaning to write a blog for quite a while now…

Over the past two and a half years I have spent a lot of time on the internet, reading blogs, in forums, in Facebook groups, searching for answers and positive stories to keep me going through the dark times.

It’s hard to explain to those who have never struggled with infertility, but the uncertainty is the killer…the never knowing what the future holds and never being able to plan anything. Mine and my husband’s lives have literally been ‘on hold’ for the last two and half years.

Over the last few months in particular I have gained a lot of comfort from reading other people’s stories: their personal accounts of sadness, waiting, frustration and hope. I pay particular interest to stories that are like mine, hoping to find parallels in treatments and outcome and glean some information that I can put into practice or take with me for my next fertility clinic appointment.

It is for this reason that I have decided to start this blog: a diary of my struggles with infertility.

I don’t know for how long this blog will last. We’re already two and half years into the journey and have no idea whether we are nearing the end or still at the beginning.

But I know one day, somehow, there will be an end. And if it does result it success, I want this blog to be a story for our child, an account of how much you were wanted and longed for, even before you existed.

So here’s to hope…and a touch of stubbornness…I REFUSE to be beaten by infertility.

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