From trigger to frozen embryos

Cycle 9 (part 1) has now come to an end.  Here’s what happened…

On day 9 I went to the clinic for a follicle scan, later that afternoon I got the message to tell me to take the trigger shot the next evening.  The trigger shot is usually HCG which is the pregnancy hormone.  For me, that is too risky so I took a different trigger of Buserelin.  9.30 pm came and I was scared.  I had been scared all day if I’m honest, not knowing what the next steps would hold for us.  How many eggs, how many embryos and whether or not I would get ill with OHSS again.

I took the trigger shot and went straight to bed.  It was the worst I had felt through the whole cycle.  Sick, lightheaded and just rough.  Luckily, I woke up the next day and felt fine.  The trigger shot is taken 36 hours before the egg collection with no drugs the next day.  At last, a drug free day!

The day of egg collection came, we needed to be at the clinic at 7.30 am so we left the house at 6.30 am.  Luckily it was the only early start in the whole cycle.  We arrived at the clinic and were taken into a private room.  This was new…I’d been used to being on a ward in the other clinic.  I suppose that’s what you get when you pay privately.  I was seen by several people, one of which was our consultant, who was also doing the egg collection.  He told me that he had really wrestled with the buserelin trigger shot and freeze all because I wasn’t showing any signs of OHSS.  He had thought about asking me to trigger with HCG and to do a fresh transfer.  He had reached the conclusion that he had promised to take care of me and that’s what he was going to do, so he had stuck with the original plan.  Finally, a consultant that had listened to me and actually heard me.  I knew I was in safe hands.

Hubby was sent off to magic the beans (his words not mine).  I was whisked away on a trolley and knocked out with a sedative.  Some 40 minutes later I was back in my room, in pain but feeling ok.  The consultant came to see us and told us we had 13 eggs.  A great number for my ageing ovaries.

An hour or so later we were sat in John Lewis eating breakfast, just both really happy that we had made it through another stage.  Our minds now starting to think about the next stages.

Early the next day the phone call came from the embryologist, of the 13 eggs, 12 were mature.  11 of them had fertilised.  This was a fantastic start. In previous cycles we only had a 50% fertilisation rate, here we were with a much higher rate.

I was also on watch for signs of OHSS.  By this point in my last cycle I was in A&E.  I felt rough, in pain and bloated, but there was no sickness and no increasing of swelling.  It all felt a bit too good to be true.

Day 2 there was no update.  The pain had now subsided and still there was no swelling.

Day 3 we were due an update.  The phone call eventually came at 1 pm.  The morning was a drag but the news continued to be positive.  7 of the embryos had made it to day 3 and were great quality.  The other 4 had also made it to the right number of cells for the day but they were concerned about the quality so they would continue to be watched.

Day 4 there was no update.  I felt dreadful, massive headache, I felt sick, but I hadn’t swelled.  This wasn’t OHSS.  It was PMT.  Day 17 of my normal cycle and I felt like it was day 27.  No-one had actually explained that the buserelin trigger would shorten my natural cycle, but it shuts everything down so of course it seems obvious that it would.  All I knew is that I felt bloody awful.  I was an emotional wreck, not sure if it was the come down from the hormones or the anticipation of the update the next day.

Day 5 and I woke up in pain, lots of stomach pain.  The thing we know as ‘the witch’ had arrived.  In some ways I was relieved because it meant the swelling would start to subside and I would perhaps be a little more emotionally stable.

The phone call finally came from the embryologist…

“You have 6 perfect blasts going into the freezer, they look beautiful”  

They were words I hadn’t expected to hear.  We were expecting a drop off between day 3 and day 5 due to the sperm issues, but it hadn’t happened.  The embryologist commented that I must have had some fabulous quality eggs…so maybe the avocado soup was worth it!  I was in a bit of shock.  As I put the phone down, I cried.  Tears of relief, tears of happiness.

Another hurdle has been jumped.  We now have a chance.  We have 6 potential chances to be a mum and dad.  There are no words that can describe what that feels like.

I know we have a long way to go and I know that none of these may grow and develop into our children, but for now we have hope.  There is a fine line between realism and negativity.  I’m trying to stay on the hopeful, positive but realistic line right now.

We have an appointment next week to see the consultant about our plan for frozen embryo replacement in the new year.  I have a follow up hysteroscopy at the end of January to check that things are ok, so that’s perfect timing for a potential transfer in February.  Well, at least that was the plan.

I went back to work to the news that I am now at risk of redundancy.  Its a massive blow, just when we thought we had a plan, that we had a chance within grasp, we are now in turmoil.  Everything may all get put on hold whilst my future is decided by others.  It is a huge period of uncertainty and so we have to decide what to do next.  Whats the priority, what comes first?  So, just when we think one hurdle is jumped, another hurdle is placed in front of us, but I suppose that is this thing called life.

I have to remember the positives of this week…I didn’t get OHSS and more importantly we have 6 precious embryos that are waiting for us.

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Day 8 of IVF Cycle 9

It feels like I’ve been injecting forever, but its only been 8 days.  So far I have stabbed myself with a needle a total of 12 times.  It doesn’t sound much really but I know the drugs are working.

I went for a blood test on day 4 to check my E2 levels.  Given my history of OHSS the clinic wanted to do an early check to make sure my blood levels weren’t shooting off in the wrong direction.  It took an hour and 15 minutes to get to the clinic, 5 minutes later after a sharp scratch in my right arm, I was in the car travelling back home, which took another hour.  I waited for the phone call to let me know if I needed to adjust my medication, the phone call never came.

Day 5 I started to second daily injection of Cetrotide.  This drug stops ovulation.  As my ovaries are going like the clappers to produce more eggs than usual, we need to ensure that none of them get released before they are removed at the egg collection stage.  And so each day there are now 2 injections to do.

Naturally my mind has been in overdrive, mainly worrying about over stimulating again.  That just cannot happen.  I can’t be that sick for a third time.  It is awful to just sit and wonder what is going on inside me, hoping that my body isn’t over reacting again.  During the last few days I haven’t even been able to think about the next stage.  Maybe because I know this cycle finishes before we get an embryo transferred.  Most people go into IVF hoping for a positive pregnancy test at the end, for me all I can hope for is no OHSS & some good quality blasts (5 day embryos) in the freezer.  For now, that will be enough.

I’ve had emotional days, crying at nothing.  I cried this morning thinking about writing a blog post about surviving Christmas, just reminding me that I’m still very vulnerable and that infertility cuts deep to my core.  I also have to remember that I’m high on hormones!

Compared to my previous cycles, so far I still feel well.  In my previous stim cycles at this point I have been puking my guts up every morning, unable to face much food.  The steak, cheesecake and peanut butter Kit Kat bites yesterday evening made me realise that I’m no where near being that unwell at the moment.  Great news.  No puking & still eating.  I have suffered with headaches most days and I don’t remember this from previous cycles but they now seem to have stopped too.

My ovaries are awake and I know it.  I wouldn’t say I’m in pain, but I’m starting to get a little uncomfortable.  I just have a dull ache.  I am now living in jogging bottoms because my jeans are too tight.  The £47 I spent on 3 pairs at the start of the week are just one of the many hidden costs of IVF.  I do aspire to have a unicorn onesie though, just like my fellow infertility blogger and current cycle buddy, Jess over at Infertility and Life.  She has been a true source of support & strength.  I have stayed away from the cycle buddies threads on the fertility forums this time, but I have found great support from my Twitter pals and to you all, a huge thank you for sticking with me thus far!

So, yesterday was scan time.  It is so different being in a private clinic to my NHS experience.  I get an appointment time and I actually go in on time, rather than turning up at stupid o’clock AM and waiting with a number to be called.  Its making for a much less stressful cycle.  I hadn’t even sat down in the waiting room and I was called in.  The sonographer explained that she would be counting and measuring follicles to see how I was responding to the drugs.  I would then need to see a nurse who would let me know if anything needed to be adjusted.  Wanda was inserted.  The sonographer said she needed to check my lining first to ensure it was getting ready for transfer.  Actually we don’t need to check it as I’m having a freeze all and won’t be having a transfer, but anyway she checked it and apparently it was ‘perfect’.  Wonderful news but completely irrelevant.

First ovary checked, I have a few follicles just under 10mm, a few more at or just above 10mm and the lead one is 13mm.  To me there looked ALOT less than in my previous cycles.  Next ovary checked, she took measurements for about 5 of them & was counting some just under 10mm, but she didn’t say much.  I commented that it didn’t look like they were over responding, she agreed and said things look about right for this stage and that:

“We are aiming for quality and not quantity”

I came out feeling deflated.  I suppose I should be glad my ovaries aren’t going crazy like the last few times.  A few minutes later we were called to see the nurse.  She said things were looking ok and that they work on “quality not quantity”.  Why do they use the word ok?  Is that good, bad, indifferent?  Should I be now worried that my ovaries aren’t responding enough?  I didn’t ask what my E2 level had been on day 4 and I didn’t ask how many follicles I have that could potentially turn into eggs.  Maybe I should have but part of me doesn’t want to know if they are going crazy again, part of me just wants to trust the clinic to look after me.  My dose of Menopur stays at 112 and I’m back in on day 9 for another scan and blood test.

We left the clinic 15 minutes after we got there.  I said to hubby that my scan looked NOTHING like my previous scans and I’m now worried we aren’t going to get a good number of eggs.  So, I’ve switched from worrying about over stimulating to worrying about getting a crap number of eggs all in the matter of minutes.  I got home and looked at the notes from my last full stim cycle.  At this point I had 40 follicles.  Maybe its a good thing that I don’t have anywhere near that number this time.  Or maybe I do have that many but they just aren’t telling me.  Anyway, I’ve decided to put the notes away and just let this cycle be a cycle of its own.  No comparing.  Those previous cycles didn’t result in a baby so maybe its a good thing that this one feels completely different.

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Hubby and I are also talking lots and being honest about how we are feeling.  This is also new but is making such a difference.  I’m just glad it is him with me on this rollercoaster, holding me as I try to navigate each twist and turn.

 

I truly forget what an awful, emotional process IVF can be.  On the plus side, I don’t feel unwell but growing eggs is exhausting, both physically and emotionally.

All I can do is get through each day and remind myself that I’m doing ok.

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IVF cycle number 9 begins…

It’s been a few weeks since I’ve had time to sit and write.  The last 2 weeks have been a little crazy but I think everything I filled my time with has helped me prepare for what we have just embarked on.  I am on day 3 of stims for what is our fourth fresh cycle but this is our 9th cycle in total.  Even writing it, it seems a little unreal that it is us in this situation, but we are and we have to go with it.

How do you prep for a cycle?  Well, there is no straightforward or single answer.  For me, I’ve just made myself as busy as possible.

I’ve had a couple of counselling sessions, which have really helped me to calm my fears and anxiety.  I would not be doing this again without those sessions.  My anxiety has been up and down, talking it through has helped immensely.  My counsellor also has a wonderful way of bringing me back down to earth from planet ‘lets think about all of the worst possible outcomes’.  I’m a natural worrier, a pessimist maybe, I look for the negative in everything.  I cannot allow that to take control of me right now, so I’ve used my counselling sessions to bring me back round to a place of calm.  I promised myself a few weeks ago that I would take care of me through this next cycle, yet I found myself questioning whether I should take time off work or not.  I seemed to be going round in circles between wanting to give this IVF cycle my whole focus and having some loyalty with work & feeling like that was also a priority.  After a heavy session yesterday evening, I knew today that I have to put this first and I have to accept that its ok that I do that.

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I’ve also used my time over the last few weeks to try to help others going through this thing called infertility.  If you read my blog regularly you will know that I volunteer for Fertility Network UK and last week was the first meet up of the support group that I run for them.  I was really nervous in case no-one turned up.  I shouldn’t have been.  It was a small group but it was great just to chat with others who really ‘get it’.  All of us were at very different points on our journey’s but yet we were able to just talk, freely and openly.  I’m so glad I took the leap of faith in myself to get involved.  It is great to be able to support and encourage others who are going through the same thing.  Its a very different kind of support to my counselling, but no less important.  I have already set the date for the next one in the New Year.

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I was also approached a couple of months ago by Natalie who produces The Fertility Podcast.  I came across the podcasts a few months ago through Twitter (@fertilitypoddy) and listened to a couple of them.  It is a great resource for anyone trying to conceive or going through assisted conception.  Natalie had read my blog and asked if I would talk to her about how infertility had affected my mental health.  It is something that I had written about in my blog but had never really spoken in depth with anyone about (other than my counsellor).  Of course, I said yes!  This was a fantastic opportunity to help raise awareness about the deep impact of infertility and treatments on mental health.  It isn’t something that I have seen much written or talked about, so if my own story helps others then I was happy to talk about it.  I knew it would be quite exposing but the only way that I’m truly going to help raise awareness is to be honest and to own my story, even when that means talking about some of the depths that I sunk to because of infertility.  I am so glad that I said ‘yes’ that I am now part of such a fantastic resource.

My first ever podcast can be heard here.

You are not alone

Last weekend was hubby’s birthday, so we booked a weekend away.  In the back of my mind I knew this would also be the weekend that our next IVF cycle might start.  And it did.

Saturday was cycle day 1.  I called the clinic to request treatment.  I was told someone would call me back to let me know that I was ok to start.  An hour later the phone rang.  This was it, this was the start.  I was to do my first injection the next day, between 6 am and 8 am.  I was booked in for a blood test on day 4 so that my E2 levels can be monitored closely due to my OHSS history.  A scan was booked for day 7.

Sunday morning at 7.30 am, I snapped the top of the Menopur bottle, mixed the first lot of drugs, held the needle and quickly stabbed myself.  There was no panic, no hovering, no hesitation.  It was done.  Monday morning at 7.30 am, injection number 2 was done.

Monday evening I felt really tired and a little uncomfortable.  I also felt very emotional and on the verge of tears, yet none came.  Tuesday morning at 7.30 am and injection number 3 was done.  I started to get ready for work but something inside was screaming at me not to go, its too much.  I need to just concentrate on this right now.  I called the Doctors surgery and waited for a phone call back.  The GP that rang me back was lovely and has signed me off for 3 weeks.  That will hopefully be enough time to go through the stims and come out the other side (without OHSS).

And so it begins.  My ovaries are kicking into action and reacting to the drugs.  I am very aware that something is going on inside me and I just have to try to stay calm and not panic.

I will not overstimulate…I will not overstimulate…I will not overstimulate…

Tomorrow I head to the clinic for a blood test and then they will let me know whether to change the dose of Menopur.

I also received the bill this morning from the clinic, there isn’t much change out of £6,000 because we are having a freeze all and we have also decided to use the embryoscope this time.  I’m annoyed that I have to pay extra for it but in the words of hubby, we are throwing everything at this cycle.

I feel ok, I feel well, I feel calm.  Hubby is excited that we may actually have a chance to have a family, I am petrified.  Petrified of so many things, but whatever happens, I know I will be ok.

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The Greek IVF Experience

It was time to start a new IVF cycle after our previous failed cycle & a bit of time out trying to recover from hitting rock bottom.  I never thought it would be me that travelled to another country for IVF.  We had very good reasons for choosing Greece, it was the home of medicine, the clinic had a fab reputation amongst fellow infertiles and it was cheaper than the UK.  I also felt that we were getting a much more tailored approach and that is what we got.

The plan was to take a high dose of Clomid, go to Greece, get the eggs removed, make the embryos and come home.  There was no pressure of a two week wait, no chance of failure.  We could get some embryos frozen and then go back for a frozen replacement when I was fully recovered from my recent breakdown.

And so in late February 2016 I contacted the clinic director to say that I was ready to start again.  Even that statement shows how different it is to the UK, I had email correspondence with the main consultant, the woman that we had met 12 months before and the person we were putting all of our faith and hope in.

Day 2 of my cycle and I started 150mg Clomid per day, plus a high dose folic acid and melatonin.  All designed to get some perfect eggs growing.  I then had to go to Greece by day 8 of the cycle for a scan.  No need for a scan before I started because I was on a low stim protocol and they knew I had lots of follicles.  She said I could fly home on the day of egg collection if I wanted so I would be in Greece for 4 days.  Sounded brilliant.  So, flights booked and hotel booked, I started the drugs.  This was going to be ok.

Transferring the money was a bit of a pain, but 4000 euros for a 2 cycle package sounded like a bargain compared to the thousands of  pounds for a single cycle in the UK.  At todays rate that’s about £3,500.  If we got more than 3 embryos to freeze then we would have to pay an extra 1000 euros for every three that needed to be frozen.

4 days in and I felt dreadful.  I was in agony on my left side, I felt like my ovary was going to explode.  What the heck was going on inside of me?  This was supposed to be a gentle stimulation.  I emailed the clinic and told them I felt unwell, she replied to say it was ok and if I wanted I could arrange a scan.  I was ahead of her and I’d managed to get a scan in a private practice for later that afternoon.  It was over an hours drive away which wasn’t ideal but I just wanted to know what my ovaries were doing.  Call me paranoid but its not surprising after what I had been through with the OHSS x2.  I went for the scan and she sent the info straight to the clinic in Greece.  The scan showed I had 34 small follicles across the 2 ovaries…eek, but there were no issues.  And so I carried on with the Clomid and the next day we flew out to Greece.

It was February but the weather was lovely, it was nice to be away from home and not at work whilst going through this.  The next day we were due in the clinic for a scan.  AthensWe made our way to the clinic through the bustling streets of Athens and then we entered the calm of the clinic.  I was called up for my scan.  As soon as the consultant saw me she came towards me and gave me a huge hug.  She said that I needed to stop worrying and that she would take great care of me, I was shaking like a leaf but I believed her.  The scan showed I had 4 follicles developing well.  She then said the words that made me shudder…I want you to take Menopur as well to help get some more follicles.  My first reaction was no, absolutely not.  It had made me so ill before I just couldn’t.  And then she explained that she would look after me and that I would be ok, but if I wanted to get a half decent number of eggs then she would advise that I took it.  So, we added in 150 Menopur.  I continued with the Clomid and Menopur for a few days, I still wasn’t ready for egg collection and we were due to fly home.  So we had to change our flights from Wednesday to Friday, which of course came at a cost.

Egg collection day and I felt ok, just wanted to get the eggs out of me and then we could get home.  I think I was more emotionally unstable than I was admitting to myself at the time.  I knew I was fragile but it was ok I would be home in 2 days.  They retrieved 6 eggs, which is a great number for mild IVF, usually you may expect only one or two.  I was pleased with the news.  And then came the bombshell.  I wasn’t supposed to have a transfer because the Clomid damages the lining so much at high doses.  For some reason, it hadn’t caused any damage to mine.  Whilst I was under they had, with hubbys permission, carried out an aquascan and found the lining to be ok, but they had also found a polyp.  She didn’t think the polyp would cause an issue but if this transfer didn’t work then she suggested that I get it removed before another cycle.  So, did we want a fresh transfer?  What, where was this coming from, how was this happening?  Hubby had already extended his annual leave and needed to get back to the UK, but it would mean a fresh transfer & that we hopefully wouldn’t have to come back.  So, we agreed.  Heck, what were we doing?  Was I strong enough to go through this again?  Well, it was too late, we were doing it.

We were aiming for a day 5 transfer which would be the following Tuesday,  Hubby booked a flight for Sunday and we moved hotels because we couldn’t stay where we were.  It was turning into a logistical nightmare, changing and cancelling hotels and flights every few days.  The good thing was that I felt really well post egg collection, no signs at all of OHSS.  I ate as much protein as possible.  We went off and enjoyed the sights of Athens, we also had to buy new clothes because we didn’t have enough with us.  We were expecting to stay 4 days and it was going to be closer to 14 days for me.

The day after egg collection we got a call from the clinic, of the 6 eggs only 3 had fertilised.  I was floored, we were both disappointed.  We had come all this way and we may now not end up with anything as we had such low numbers.  We were still hoping for a day 5 transfer & I had started the progesterone and steroids in preparation for the transfer.

Sunday came and the taxi came to pick up hubby.  There I was left in Athens on my own with nowhere to go and 2 days to wait for embryo transfer.  10 minutes after he left I got a call from the clinic.  Could I come in now for the transfer, we had lost one of the embryos, another was looking good and the second looked iffy.  I was shaking, this wasn’t sounding good.  Half an hour later I was in the clinic, alone, waiting for our precious embryos, our chance at a family to be put back inside me.  Hubby hadn’t even reached the airport when I phoned to tell him.

I don’t speak Greek, but you know when news isn’t good.  I knew by the tone in the conversations they were having that the quality of the embryos wasn’t good.  The consultant said they preferred to get embryos to day 5 but she felt it was ok to put these back at day 3 to give us a chance.  I knew in my heart that it meant we had no chance, it was over before it began.

I left the clinic, booked a flight for the next day and then packed to come home.  I had a blood test the next day to check my progesterone level & then got a taxi to the airport.  I had syringes in my case and drugs in my hand luggage.  I got stopped in Athens airport and finally got let through with the drugs after I showed a few guards the letter from the clinic.  I got through Heathrow and then had to fly up to Manchester.  This simple trip to Athens for some embryos to be made had turned in to a stressful nightmare.

We had only told our parents about the transfer, as far as everyone else knew we weren’t having a transfer and we made sure it stayed that way.  I wasn’t prepared for this and I didn’t want to have to go through another negative with everyone knowing.  I had injections of HCG to keep the bleeding away, which it did.  It also meant I couldn’t test early because it would give a false positive.

I got home and a few days later I returned to work on a phased return.  I hoped to have 2 embryos still growing inside me but in my heart I knew it wasn’t the case. I was devastated and I didn’t even know the outcome.  I lived the highs and lows of a two week wait.  In some ways I was numb to it, convinced it wouldn’t work again.  Work came as a good distraction.  Test day came.  It was another Big Fat Negative.  I was utterly devastated, we both were.  No-one else knew.  When anyone asked us we just said it hadn’t gone to plan and the embryos hadn’t developed, well they hadn’t.  I didn’t want everyone knowing I had failed again.  The Greek wonder that helped so many people get pregnant hadn’t been able to help us, there was no miracle for us.  It was starting to become clear that there probably never would be.

I emailed the consultant to let her know.  An email pinged back, she said how sorry she was, she felt it was down to poor embryo quality due to poor sperm parameters.  She suggested that we consider having treatment using donor sperm.  As I read the words my heart exploded.  I was struggling with another failure, how was I going to tell hubby this news?  I couldn’t tell him so I just showed him the email.  His face said it all.  He didn’t need to say anything, he was rocked to his core, we both were.

I emailed the consultant to say that we would need some time to recover and decide what to do next.  A donor wasn’t something that had ever been suggested to us before.  She emailed to say we had time to decide what to do next and that I could contact her when we were ready for our second cycle.  I knew that we would never go back to Greece.  We had spent about £5,000 and had nothing other than broken hearts to show for it.

The same day that we got the negative, got the news that we should consider a donor and delivered more bad news to our parents, I emailed the counsellor.  I briefly explained I had gone back to work and was struggling, oh and I happened to mention that I had also been through another failed cycle.  I hoped for a reply.  I needed her to reach out and grab me for a second time, and that is exactly what she did.  A few days later I had an appointment.  There was no judgement on the decisions I had made.  Here I was completely floored, facing a future of nothing, our relationship in tatters, me in a depression and I knew this time I needed help to grieve and heal.  All of the previous failures and treatments came back to haunt me, I wasn’t going to get through this alone.

I will leave it there for now.

We went to Greece expecting a simple cycle, it ended up being complex and gave us news that we never expected.   The care we received was second to none.  Aside from the logistical nightmare because of the unexpected transfer, it was on the whole a good experience.  I wasn’t ready for the transfer but I suppose that going through it meant I started my journey of recovery and self discovery sooner than I might have if we hadn’t gone ahead.

You are not alone

Hitting Rock Bottom

Failure number 5 hit me hard, it hit us both hard.  It didn’t seem to matter what we tried, IVF just wouldn’t work for us.  I was floored.  The new clinic that we had put so much hope into still couldn’t get this to work for us.  I was already at a low point going into that cycle, coming out the other side with another negative, another blank screen on a test and I was done.  Hubby wanted to go for a follow up with the clinic, I reluctantly agreed.

2 months later we were sat with the consultant, talking about another round of IVF.  I remember pulling into the car park of the clinic and saying that I can’t do this again.  I was visibly shaking, full of nervous energy whilst we sat and listened to the consultants verdict of the failed cycle.  In his opinion, it was embryo quality that was the problem.  He suggested a further round of treatment, starting again.  I asked about avoiding OHSS, he started to reel off a list of drugs that I would need to take, I couldn’t listen, I couldn’t hear it.  I was absolutely terrified and completely exhausted.  We left the clinic, no commitment to start again.  I knew in my heart there was no way I was ever going back to that clinic, I couldn’t get OHSS again.  I couldn’t take all of the drugs again.

The summer of 2014 slipped by, I was a complete wreck, shaking with nerves, anger, sadness and anything else in between.  Those around us getting excited about yet more new arrivals that we due, me in a state of despair.  When I thought about my future, all I saw was a big black hole of nothing.  I crawled from one day to the next, in a stressful job that I now hated because it was all just too much, yet somehow I had to keep going.  I was sick most mornings, and that was the stress.  I was exhausted, physically and emotionally.  Our relationship was in tatters.  September came and we went to Spain, we had a nice time, I slept a lot and started to read some books about adoption.  After all, that seemed to be the next step for us.  We talked about adoption and whether that would that be something that was right for us.  We knew we needed to grieve, but as ever we tried to move forward.  We went to an adoption information evening when we got back from holiday.  I sat listening, I wanted to cry, all sorts of feelings came to the surface.  Any questions?  No, I was out of there are lightening speed.  It was too raw, it was too soon, I just wasn’t ready to move on.  Hubby came away full of enthusiasm, he wanted to pursue adoption.  We weren’t on the same page.  In fact, we weren’t even in the same book.

A few weeks later and I was back on the hunt for a new clinic.  I wasn’t done with IVF.  Trawling the fertility forums for clinic recommendations I started to look at clinics abroad.  It was seemingly much cheaper, lots of stories of positive outcomes for people with lots of failed attempts and lots of positivity around standard of care.  I kept reading about a particular clinic in Greece and the more I read the more I thought it was the one.  That was our next step.  It sounds pretty crazy now to say that we were considering IVF in another country, but it felt like we were running out of options, time & money.  I got in touch with the clinic in the Autumn and filled in all of the forms.  Still a nervous wreck, in the throws of depression, this was my only route out.  They suggested a test which involved sending a sample of my lining via the post to check for infection.  Sounded utterly disgusting but by this point we would consider anything to try and get some answers.  That came back clear, phew.  We got an appointment through for January, the only problem was a little trip we had booked to the Maldives & Dubai for our 10th wedding anniversary.  We agreed that this was more important and so the trip got cancelled and the deposit moved to a holiday in Italy the following summer.  Hubby wasn’t best pleased at all, it was his trip of a lifetime, it was on his bucket list and there I was asking him to cancel.

Christmas 2014 was the worst one I have experienced for feeling sad, lonely and utterly useless.  I was moving between anger and sadness of epic proportions on a daily, if not hourly basis.  Work was getting more and more pressured and I just hated life.  We took the house off the market because it hadn’t sold, so I was also living in a house that I just couldn’t settle in.  Somehow I had to get through January to go to Greece.

Instead of sitting on a plane to the Maldives, we were on an EasyJet flight to Athens.  We flew out on the Monday, had appointments on the Tuesday & Wednesday and came back on the Thursday.  We walked into the clinic and it was calm, welcoming and just felt so different to the UK clinics we had been to.  We were about to see the consultant that I had read so much about.   This was it, she was going to help us achieve our miracle. We went through our history, we’d had some tests, I had a aqua scan and then we met with her to discuss our case.  She dismissed some of the immune test results from our previous clinic and didn’t agree that all of them were a problem.  Hubby had been on their sperm improving protocol so it was time to see if there was any difference.  And there was, it was at the lower end of the normal range but it was the first time it had been normal.  We talked about a Mild IVF protocol, which sounded amazing to me, no OHSS.  We sat in her office, surrounded by photos of babies, clearly ones sent to her by her success stories.  I was still a nervous wreck, still in the depths of depression, shaking like a leaf, I found it hard to have hope, but I did.  At the second appointment, hubbys DNA fragmentation test on his sperm came back as normal.  Her words to us were:

“You aren’t a case for IVF, you can do this on your own”

What?  We were floored.  I walked out of the clinic with my head in a spin.  We had been through 2 fresh cycles and 5 frozen cycles and she was telling us we didn’t need IVF.  There are really no words to describe what that felt like.  I felt even more useless and I felt like we had just wasted the last 5 years of our lives.  She had told us that if we hadn’t been successful after 6 months then we were to contact her to talk about treatment.  We flew home the next day in a complete daze.

My depression remained, we didn’t have a plan and I became more and more isolated.  I just wasn’t coping with life and certainly not family life around us.  One Saturday morning I logged onto Facebook and I was faced with the usual happy family posts, how life was complete with a family, how children are the light of life and what would there be without them, so all that said to me was that I was completely useless and worthless, I had no purpose.  That was the last day I used Facebook for 10 months.  I just couldn’t bare it, it was destroying me.  My heart felt like it was shattered into a 1000 pieces and everything around me was zooming at 100mph, meanwhile I was barely treading water, in fact it felt like I was drowning.

There never was a positive pregnancy test and by April I was looking for a new clinic, I wanted another opinion.  Time for the big guns.  We had already spent about £1000 on the Greece trip, we were now going to see someone on Harley Street in London.  This was going to be pricey.  Another consultant that I’d read great things about and he was hot on the immune side of things, I was still convinced that these were our main issues.  One Friday morning in May was went to London, paid £450 to sit in front of a consultant.  We took all of the results we had with us and he sifted through them.  He asked if I had a stressful job, yes was the reply, he looked at me as if to say ‘well what do you expect’ but he didn’t say it.  He wanted us to have an extra test and a re-test on one that was borderline.  No mild IVF, he wanted a full stim cycle and he would try to avoid OHSS but couldn’t promise anything.  I paid the bill, she asked if I wanted to book in for the other tests which would cost around £900.  I said we would leave it and get back to them.

We left the appointment, heads spinning.  It all sounded very extreme in terms of treatment but I’m not sure what I expected because I’d read so much about his approach and treatments, I knew that’s what it would be.  We sat in the BHS cafe and talked about whether we should do more treatment, we agreed we should.  We agreed that we needed to put the house back up for sale to release some funds, but I was relieved about that anyway because I just didn’t enjoy living there.  At that point we weren’t sure which clinic we would go to, but we felt like had options and we had hope.  I suppose I should have been happy, but I wasn’t.  I was sad, just so sad.

The house went up for sale a week later and sold within 3 days.  We were now on the hunt for a new house, luckily we found one quite quickly and forged ahead with the sale.  We took the holiday to Italy, a week in Tuscany and a week in Lake Garda, just what we needed to re-charge the batteries.

Our house sale continued but 2 months later because of land dispute, we pulled out of the one we were buying.  We would be homeless.  Just what we needed, more stress.  Treatment was on hold.  We found another house a week before our sale was going through so we went to live with the in-laws.  That summer we also lost 2 people that we were both very close to and we both took it hard, but we had to try to keep going.  We planned to go to Greece for treatment in September, work said they couldn’t give me the time off.  I was fuming but I had no choice, so we decided on October.   We decided against Harley Street, it just wasn’t for us and we liked the Greek consultant.

We both tried to keep going but both floored by the constant set backs and grief.  A week before I was due to start the injections and I couldn’t do it.  I broke down and said to hubby that I couldn’t do it, I wasn’t strong enough, I couldn’t cope.  I was on edge and I felt dreadful.  He agreed that we should wait for a few months & move house.  We booked the dream holiday to the Maldives & Dubai for January, it wasn’t been cancelled again.

We moved house.  It was November and work was getting too much.  I started to suffer migraines at the weekend, something I’d never had before, I didn’t realise it at the time but I was clearly very unwell.  The first week in December came, I left work on the Friday in a complete state due to stress and pressure.  I called my boss and said that I was struggling, we talked about it and I said I would see her Monday.  I didn’t.

That weekend I had a breakdown.  I was done, it had got me.  The last 5 years was here, facing me, raw, it had ruined me and I was completely destroyed.  Infertility had ruined my life, I was out of control, I was stressed and depressed.  I was anxious.  I suffered a panic attack as we were about to go out on the annual family hunt for a Christmas tree.  I was a dithering wreck.  Sunday evening and the tears flowed.  I needed to quit my job, that would make it all better.  My sister in law had a long talk with me and said it was clear I needed time out, that I needed some space and that quitting wouldn’t be the answer.  She was right.  I emailed my boss and said I wouldn’t be in.

2 days later I sat in the GP waiting room, tears in my eyes, shaking.  I saw the GP and he said I would get better with 2 weeks off from the stress of work and he said he could add me to the waiting list for counselling.  It was up to 6 months wait.  I said I would leave it.  He gave me some leaflets for on-line help, they went straight in the bin on the way out.  I would go home and it would all be ok.  I sat at home like a zombie.  I was ill, so ill.

I needed help, I needed help quickly and from someone who would understand me.  I searched google for a fertility specialist counsellor and came across the BICA website.  I put in my search criteria and 3 people came up.  I read the profiles, Googled their names and tried to pick one.  One looked pretty frightening as I found her photo on another website so she was a no-no, one didn’t have much of a profile so that was a no also.  I read the profile of another one and it struck a chord with me.  Her name didn’t bring up anything sinister when I Googled it so that was a relief.  She seemed just right for me.  I sent the email having re-written it several times so as not to seem completely desperate and hoped for a reply.  I had refused every offer of counselling but I knew it was the only way that I was going to crawl my way out of the black hole that I was in.  I was at the bottom of a pit, I was broken and I couldn’t find the energy to crawl out of it.  This counsellor was my only hope, she had to reply, what if she didn’t, I would be screwed.  That afternoon I received a reply.  Phew.  I felt relieved, I had reached out and someone on the other end of an email had put a hand out for me to grab hold of.  I didn’t really want to go. after all wasn’t that admitting I was a failure?  Deep down I knew if I didn’t then I would never get out of the darkness and my life would remain in the depths of depression.  It had to stop, I needed it to stop.  I had reached rock bottom and I had no-where else to turn.

I will leave it there for now.  Its hard to admit that infertility lead me to such depths of depression, to the point where I couldn’t function & I no longer wanted to be alive.  No-one ever tells you before you start treatment that this is what it can lead to.  For me it did.  I was ashamed and afraid to admit where I found myself.  I had cut myself off and I didn’t ask for help until I was in a complete crisis.  If you are struggling, please ask for help or please speak to someone.  I may have avoided a complete breakdown had I asked for help or accepted it when it was offered.

You are not alone

 

Fresh Cycle #2…

In my last post I talked about how we moved forward from our 3 failed embryo transfers towards another IVF cycle.

Finally I had reached the point where I felt ready and able to face another round of IVF.  The previous 4 cycles had taken so much out of me physically and emotionally.  Trying to balance our attempts to have a family with the rest of life, including a stressful job and the next stage of our house renovation was becoming more and more draining.  I didn’t realise it at the time but looking back I can see that this was the point for me where the depression started to take hold of me.  I started to be anxious, panicked and just generally felt unhappy and switched off from the world.  In some ways I didn’t care what was going on around me but on the flip side I was completely desperate for this to work for us so that I could become part of those around us again.  I was distant, angry, sad and just generally pissed off with the hand we had been dealt.  Situations were becoming more difficult to deal with and my senses were heightened, yet no-one seemed to understand.  Comments and so called advice that was aimed at helping us became more and more difficult to swallow.  They became more hurtful and I didn’t have the strength to challenge them.  I felt like a complete failure, an outsider in my own life, an outsider within my family and I couldn’t seem to do anything to shake it off.  I became more and more isolated and quite honestly it suited me.  I was consumed with grief from what we had already been through but I just couldn’t acknowledge it.

It was just as we started this cycle that I heard one of the most hurtful comments that I have ever heard during our journey.  The thing with words is, once they are said they can’t be unsaid.  I was talking to someone about our upcoming treatment and about me being scared of it not working again and us never having a family.  The comment back to me was:

“you should be grateful for what you do have rather than being focussed on what you don’t have”

I was side swiped, hurt to my utter core.  What. The. Actual. Fuck.  The rage built inside of me, I couldn’t respond and I had to walk away.  I had started my injections just a few days before so hormones were swelling around inside me.  Even to this day, those words hurt me, make me shudder, make me feel sick.  In that split second, everything I was feeling & worrying about had been belittled, undermined.  It was as though I had no right to be feeling the way I was because…what, we had a nice house, good jobs that we worked hard at & a family around us.  It was as though we shouldn’t want a family and did it really matter if we didn’t have one, we apparently had everything to be grateful for.  I am grateful everyday that we have each other, that we have worked damned hard to build a life together with all of the things that we have in it.  Why was it so wrong for us to want a family together and for me to be worried about what that meant for us if we never managed to achieve it?  It wasn’t exactly the best start to our cycle.  Instead of feeling supported in our decision to go again, I was made to feel selfish and stupid for even bothering.  I had to try to move on and stay positive, even when I had been hurt so badly by just a few words.

thumper-cant-say-something-nice

So, the injections had started.  In light of my previous experience of OHSS  I was started on a lower dose of Menopur, I was taking Metformin and I was supposedly going to be monitored more closely.  I felt all along that the clinic weren’t taking my very real concerns about getting ill again seriously.  I found it hard to trust that it wouldn’t happen again.  InjectionsSo on day 3 of stims I had a blood test to see what my E2 levels were doing, everything looked ok at 450.  Stims continued at the same level and on day 6 I had another E2 level test, levels were now 604.  Still looking ok but I got the news that they wanted to increase the dose of Menopur from 112 to 150.  A shot of fear ran through me, I wasn’t sure if I could do it again but it was too late, I’d started now so I had to carry on.  Day 8, so 2 days of increased Menopur and E2 levels had started to rise more rapidly, now at 2900.  The first scan showed 6 lead follicles but I had a further 34 developing, so that was 40 in total. Oh no.  I continued on the increased dosage and the morning sickness started.  I had it in the first cycle a few days after I started and here it was again as my hormone levels increased.  Day 10 of stims, its a Wednesday.  In my mind I’m getting close to the trigger shot because of the follicle numbers, but also very conscious that there were no egg collections over the weekend so that may dictate how long this went on for.  At this point I had 2 huge follicles, 11 more not far behind and a further 17 at the lower end of the scale, so that’s a total of 30 follicles, some rather sizeable, in my ovaries.  After the scan I was hopeful that I would be triggering soon to get these eggs out of me.  I was swollen and uncomfortable.  The phone call came, please say trigger, please say trigger…we need you to keep on the same dose for a few more days, egg collection would be next week.  We they actually kidding me.  I felt utterly dreadful, I couldn’t have 5 more days of jabs, I just couldn’t do it to myself knowing how it ended last time.  So, I kept going but I was now visibly suffering with anxiety, every time I thought about it I was a shaking wreck.  Day 12 of stims I went back for a further scan and blood test.  Unfortunately I don’t have the levels written on my records, funny that!  I would love to know what they were, ridiculously sky high would be my guess.  The scan showed 6 huge follicles, 10 more over 17mm and a further 13 at the lower end of the scale.  My ovaries were huge and I knew it.  The skin close to them started to feel very sensitive to touch.  I felt rough.  They asked me to carry on taking the Menopur at 150, of course I said.  Forget that, that day I only took 75.  I’m not an advocate of self administering but I felt so awful I couldn’t face a full dose, I just couldn’t do it to myself.  The last jab they said to just do 75, some sense at last.  Clearly my blood level of E2 was sky high.  So, I had been re-assured that a different approach would be taken to help avoid OHSS, yet they had stimulated me for 3 more days that the cycle before.  I will never know the true reason why but in my mind it was because they didn’t do egg collection at the weekend.

I took the trigger shot, the large amount of hormone that gets the eggs ready for collection.  I stood in the bathroom, feeling like shit, tears in my eyes with the needle hovering around the area I needed to inject.  I couldn’t do it.  For so many reasons I couldn’t do it.  It would make me ill, it would mean we would have to face another embryo transfer, it would mean I may have to face more failure, more grief, more hurt & more loss.  Bam, the needle went in.  A huge dose of hormone.  It was done.

Monday morning I was back at the clinic awaiting egg collection.  Hubby went off to give his sample so we could get these eggs fertilised.  I walked to the theatre, given a dose of something to knock me out and the eggs that I had been growing were collected.  I came round from the drugs and the nurse said that they had collected 16 eggs.  Exactly the same number as the previous cycle.  I was relieved that they were gone, I felt so much better now my abdomen wasn’t full.  I was wheeled back to the ward and the consultant came to see me.  She said she had drained ever single follicle and some free fluid so she was confident that I would be ok for embryo transfer in a few days.  If I was feeling ill then I had to tell them.

We left the hospital and went home.  The door closed and I cried.  I’m not sure if it was relief that it was over or the hormones.  We were told that 7 of the eggs had fertilised so we had 7 embryos doing well in the lab.

Tuesday came, I felt ok.  We were hopeful that I could have a fresh transfer.  It was going to work, this was our time, it had to be.  My parents came to visit us in the afternoon to see how I was.  I went upstairs and I knew, I knew I was ill again.  My abdomen had swelled, I felt sick and I just needed to lie down.  I stood at the top of the stairs afraid to go downstairs and tell them all that I was unwell again.  How could this be happening?  How could I disappoint everyone again and not be able to have any embryos transferred?  How could another year have passed and me still not be able to get pregnant, even with so much medical intervention?  I plucked up the courage, went downstairs and said “I need to go to hospital, I feel really unwell”.  Hubby’s face drained, he knew it was happening again.  He called the clinic, as it was 4.30pm the clinic was closing for the day so they told him to take me to the closest A&E.  He packed some things for me, I knew I wasn’t coming home for a few days.  He drove to A&E.  It was a Tuesday evening and they were relatively quiet.  I was seen by a nurse and I told her I thought I had Ovarian OHSSHyperstimulation Syndrome.  They put me in a cubicle and we waited for a Dr to come and see me.  The hospital that we went to has no IVF clinic attached to it so they had no IVF Dr’s that could see me.  The Dr on duty admitted me to the ward.  I was there for the night.  They didn’t seem to know what to do with me or how to treat me.  Hubby left me, I sobbed and sobbed quietly in the corner of the ward.  How could I be here again?  Why me?  Why had the clinic let this happen to me again?  The next morning hubby phoned the IVF clinic to say I had been admitted to a local hospital.  One of the Dr’s came to see me and said it was impossible for me to have OHSS so quickly after egg collection and that it was just the side effects from the egg collection procedure.  I told him I’d had it before and I knew I had it again.  He didn’t believe me and said a scan would show I had nothing to worry about and could go home.

I could barley walk because of the swelling so I was wheeled to the scan unit .  I was left alone until it was my turn to be seen.  I waddled into the room, I told the sonographer that I thought I had OHSS.  She asked why I had been sent for a scan because she could tell just by looking at me that I definitely had it!  So, she did the scan and there was free fluid all over my abdomen.  Of course, I was right and the arrogant Dr was wrong.  It was back.  Any hope of a transfer was gone, any hope that 2012 would be the year that I got pregnant was gone.  It was utterly shit, yet again my body had failed to do what it should have done.  I couldn’t keep going through this, it was destroying me.

I went back to the ward and the IVF clinic were called.  Once the OHSS was confirmed they wanted me to be moved to their hospital.  There was no bed for me at the moment so I would have to wait.  I was put on a drip and my care was co-ordinated between the two hospitals.  At 4pm we heard there was a bed for me.  Now there was just the small matter of moving me 30 miles.  Hubby offered to take me but he was told no because it would mean that I had been discharged and re-admitted…?  It was midnight before a taxi arrived to take me to the hospital.  I was accompanied by a chaperone.  I was completely exhausted and could barely stay awake on the journey.  I arrived at the same hospital that I had been admitted to the time before and it was 1am.  I had blood tests, went through admission paperwork and was then put on a drip.  I got into bed at 2am.  I cried.

The IVF consultant came to see me the next day.  She seemed somewhat bemused that I had got it again.  She told me that we now had 6 embryos and they had all been frozen.  She left as quickly as she arrived, like a whirlwind.  I just had to get through the next few days.  I couldn’t eat, couldn’t sleep, sickness came in waves and my abdomen continued to swell.  Fluid input and output were measured for the next few days.  Friday came and I broke down, was this ever going to get better.  The tears flowed and I couldn’t stop them.  I didn’t want anyone to visit me.  I just wanted to be left alone.

The next day they needed the bed.  I had stabilised a bit and they thought I could manage at home.  Hubby came to pick me up and took me home.  I couldn’t eat, couldn’t sleep, couldn’t drink, couldn’t stop being sick.  I was given a tablet to take which should have eased the effects of the OHSS.  I took it but I’m not sure it made any difference.  We got through the weekend.  I woke up at 2am on Sunday night in agony, I was in so much pain because I was so swollen.  I ran a hot bath, got in and the pain eased.  It had been the first time in a week I had been comfortable.  I was in a complete state.  I had to keep moving in the bath to keep the hot water moving over the pain.  Hubby was fast asleep in bed whilst I was trying to find some relief any way I could.

The next night I went to bed and woke up a few hours later.  I managed to get up and I needed a drink.  I wanted sugar.  We had a bottle of Pepsi in, I don’t know why we never have fizzy drinks in the house.  I was just thirsty.  I drank straight from the bottle, as much as I could.  I sat in the darkness of the kitchen.  Within a few minutes a huge wave of sickness hit me.  I managed to get to the kitchen sink and I was sick everywhere, and I just kept being sick.  It wouldn’t stop.  It did eventually stop and I felt so much better.  I waddled back up the stairs and managed some sleep.  It was the last time that I was sick and the next day I felt a little better.

Over the coming days I started to nibble on food.  The swelling didn’t disappear for a number of weeks.  I had to have a further 6 weeks off work.  Yet again IVF had royally fucked me over.  It was impacting on every aspect on my life and yet I kept going back for more.

I will leave it there for now.  Re-living that cycle has been tough.  As we now look to embark on another fresh cycle in the coming months I can see where my fear is coming from.  I’m absolutely petrified to  do it again, even with a new plan.  My trust is Dr’s took a huge battering through this cycle and its probably one of the reasons that I don’t quite believe our new consultant that I won’t get OHSS again, even if he is intent on pumping me full of drugs.  I suppose I should take comfort in the fact that I survived it for a second time.  It will take great strength & courage to put myself through a similar cycle again in a few months.

If you are supporting someone through IVF then please try to show empathy and please do not belittle them or make them feel any worse than they already do.  It is a gruelling process and they need love and support, nothing else.

You are not alone

The little matter of Natural Killer Cells

Time to pick up our story, its 2011 and we had by this point had a fresh cycle that ended up with no embryo transfer because of over stimulation plus 3 failed frozen embryo transfers.  That’s 6 embryos, no positive test and a whole barrel full of hurt and heartache.  We were very lucky that we lived in an area where we had 2 NHS funded cycles, so we still had high hopes because we had another cycle of treatment to try to get us to a positive outcome.

Before the IVF clinic would let me cycle again Frog Camerathey referred me for a hysteroscopy.  For anyone that doesn’t know what that is, its basically a camera inserted into your uterus via your vijayjay.  They wanted to look for anything that may be causing our IVF failure.  In November 2011 I was put under general anaesthetic for the short procedure.  I came around from the procedure and I was told I had a heart shaped uterus (sounded kind of lovely to me) but they hadn’t found anything wrong and the heart shape shouldn’t cause any problems with conceiving.  Phew, a bit of good news at last.  We were told we had to wait to see the consultant again before we could request treatment.  I went home and took the week off work.  I was exhausted, tired of the whole thing.  There was seemingly no reason why this IVF wouldn’t work.  It was upsetting and so frustrating.  We had to wait until March 2012 to see the consultant.  So yet more waiting.  IVF teaches you one thing…patience.  We wait and hope, wait and hope.

We walked into the consultants room and her first words were “You’ve been through a lot”.  No shit Sherlock.  She scanned our file and said that she wanted to send me for a hysteroscopy.  WHAT?  I said that I had already had one.  She said there was no record of it on file.  WHAT?  She then went on to say that if there had been an issue they would have told me before I was discharged so it must all be fine.  Were we actually hearing this right?  I’d had a procedure, we’d waited nearly 6 months for a follow up and yet there was no record of it on file.  This was going well.  We then went on to ask her about preventing OHSS next time.  She said they would do everything they could to prevent it, I would be monitored a bit more closely and they would give me metformin which may also help.  By this point in our treatment journey I had been doing lots of research.  The online forum I was part of became the place I turned to for hope and for information on other tests & treatment.  The clinic we were with didn’t buy into the immune issue school of thought (I will talk about this more in future posts) but on pushing her a little she said she would refer me to a clinic in Coventry for a Natural Killer Cell test.  She was happy to refer me because she used to work with the Dr leading the research.  So we came away with a referral, a treatment plan and most of all we came away with renewed hope.  We were happy to try anything at this point, anything that would give us the positive outcome we both desperately wanted.

It wasn’t too long before our referral came through and we went to see the Dr in Coventry.  We had a consultation and she explained the theory behind the test.  In very basic terms, a piece of the lining is scraped away and they test it to see what level of Natural Killer Cells are present.  If the NK Cells are high then the theory goes that they kill off the embryo whilst its trying to implant and hence implantation does not occur.  The good news was that if the levels were high then she suggested we treat it with steroids, which is supposed to calm the system down and prevent the implantation failure.  I’m not a Doctor so that’s my very basic interpretation.  A few weeks later I was back in Coventry having my lining scraped away, holy shit it hurt.  She told me to take paracetamol before the procedure, which I did, but it still hurt like hell.  It only took a few minutes and it was done.  Yet another thing my body had to go through to try to find some reason that IVF kept failing.  The sample would be tested and then I would have a phone consultation with her a few weeks later with the results.

The results were in…I had raised Natural Killer Cells.  My body could be attacking our Natural-Killer-Cellembryos.  I wasn’t sure whether to be upset that we had yet another issue or whether to be happy that we potentially found the missing piece in the jigsaw.  The treatment plan seemed relatively simple, I would need to take steroids with my next IVF cycle.  OK, it was another drug but if it did the trick then I was happy to give it a go.  I read lots of stories on line about it working for people who had taken steroids, it was going to be ok, this was going to be answer.

So, we had a clear plan.  We went back to the IVF clinic armed with the results from Coventry.  We picked up the prescription, went through the treatment protocol with a nurse and asked if I needed a reminder on injections.  Errrrm that will be a no then, having injected for 4 previous cycles, I think I got that sorted.  During that appointment I started to panic about getting OHSS again.  She reassured me over and over again that it was unlikely that I would get it again.  I sat there shaking, I don’t think I can do this again, I said.  I was in a complete state of panic.

We left the appointment, bag of drugs and a bag full of hope.  C tried to re-assure me that it would be ok, that they wouldn’t let me overstimulate again and that this time we would have a fresh transfer.  We had a new treatment added in with the steroids.  This was going to work.  I wanted to believe it, I really did.  There was just a big shadow of doubt starting to creep in, was this ever going to work.  I knew what I was about to embark on and it scared the hell out of me.  I tried so hard to move forward with positivity, I kept telling myself I would be fine once the injections started.  I just had to find the strength and courage to do it again.

Another year had passed and still we didn’t have a family.  I was having to go through the same thing we embarked on 2 years earlier.  We were still on the starting blocks and we couldn’t seem to get past the false starts.  In the summer of 2012 the decision was made, the wheels were in motion, cycle number 5 was about to begin.  I was utterly terrified.

I will leave it there for now.  It has been strange to look back on those many months of waiting, preparing and receiving yet more news about our infertility diagnosis.  It was no longer just a male factor issue, it had become more complicated.  I felt like I was becoming more and more distant from the world around me as I plunged into another cycle of IVF.  No-one understood the path that we were walking, we got bemused looks when trying to explain the Killer Cells and most of all we picked up on the worry that those close to us had about me being ill again.  I felt like I was in a vacuum being sucked in and I couldn’t escape.  I was moving further and further away from those around us, I felt like we were walking this path alone.  We were in this until it was done, no matter how long it took we were going to keep going.

We always held onto two things, one was hope and the other was each other.

You are not alone

Fertility Warrior Q&A

I have been asked by a fellow fertility warrior to contribute to raising awareness of infertility & childlessness.  Set up by Post IVF world & continued by Infertility & Life, the idea is that bloggers answer a set of 10 questions about their own infertility experiences and then add an extra question that we think others may find useful.  In the end there should be a huge amount of information available for people to access which in turn should help raise awareness.

I will also tag a few fellow bloggers and ask them to take part if they would like to.

So, here are my answers

Are you male of female?

Female

Where are you in your infertility journey?

We are currently deciding whether to pursue further treatment or to live a life as just us two.  We have had 8 cycles treatment, 2 did not result in embryo transfer due to Ovarian Hyperstimulation, 12 embryos have been transferred through the other 6 cycles, none of these have been successful.  We are now over 10 years into our infertility journey.

What is your infertility diagnosis if you have one?

We were diagnosed as male factor.  Further into our treatment we discovered that I have polycystic appearing ovaries (although I don’t have PCOS).  Through various tests we also know that I have raised uterine natural killer cells.  We have a DQ-Alpha match (although the significance of our match varies depending on which consultant we speak to).  Hubby also has a genetic abnormal mutation in a specific gene called C4M2, which has been linked to an increase in implantation failure & risk of miscarriage.  I have also recently had a procedure carried out which has identified endometriosis.  So, what started out as a relatively straightforward diagnosis has seemingly become more complex as we have had further investigations.

How old were you when you got your diagnosis and how old are you now?

I was 27 when we were first diagnosed, I am now 37.

What do you do to keep your spirits up on the tough days?

Try and plan things that we enjoy doing.  I love spa days more than anything so in really tough times I have taken myself off for some pampering.  Fortunately my tough days don’t seem to hang around for as long as they used to.  I write my blog which often helps to gain a sense of perspective.  We have in the past booked holidays to give us something to focus on in the future when we had no treatment plan.  I volunteer for Fertility Network UK so find strength to move forward in helping others.  I also avoid situations that I think may trigger me to feel worse again.  It can be hard to say no to people but I have learned that I have to put myself first.

How do you feel you have been treated by medical professionals?

At our first clinic we felt like we were just a number, we ended up making a complaint about them and then after a number of cycles we moved our embryos to another clinic because I could not face another cycle with them.  They were disorganised, insensitive & did not seem to tailor treatment to individuals.  At our second clinic we were treated very differently but they wanted to pump me full of drugs for stimulation, which I did not want to do so I didn’t think they listened to my concerns.  We saw a consultant on Harley Street and he scared us both, we didn’t really understand him and he was hard core on immune treatment so we made the decision never to see him again.  We had a very different experience in Greece.  I felt cared for and treatment was tailored to me as we went through the process.  It restored my faith in IVF professionals.  Our current clinic is in the UK and they have so far been ok, although the treatment plan that has been suggested is one that I am uncertain of so we now have to make the decision to continue or not.

Have you been offered support of any kind?

After each failed cycle, other than the one in Greece, I was offered counselling.  Each time I refused it.  I wasn’t ready.

During the Autumn of 2015 I suffered a breakdown and was in the depths of depression.  I suffered with anxiety.  It came to a head one day and I couldn’t function properly.  I went to the GP who said it was a 6 month wait for counselling.  I refused to be put onto the list, I thought I could get better on my own.  A few days later I knew I needed help and I found a counsellor through the BICA website.  I have been having counselling since then & I really don’t know how I would have started to recover if I had not sought help.  I am now a huge advocate of counselling & I should have taken the sessions offered to me after our failures.  I have recently started a counselling course at college, so that is a huge step for me personally.

How do your issues effect you on a day to day basis?

I am much better than I used to be but pregnancy announcement, bumps, scan photos and new born babies bring it to the surface.  I don’t want to feel that way and it’s not jealously, its pain and sadness about our own situation.  Some of our friendships have changed.  Most of the friends we have now have families and it can sometimes feel that we have very little in common with them, but I think we all try to make more effort to keep seeing each other.  There was a time that I didn’t want to spend time with them, especially when they had babies, but that has changed for me now and I’m much better at coping.  Although it can still hit me when we go home and close the door, when its just us two.

Infertility has also meant that my career has been on hold, I’ve stayed in a job and not moved or re-trained.  Every decision that we make is about when the next round of treatment is & what if it works.  We can’t really plan anything into the future, just in case we are having treatment.

If you could tell yourself something back when you were first diagnosed, what would it be?

Part of me wants to say, don’t bother with the IVF it won’t work & the next 10 years will be filled with tears, sadness & heartache if you do.  Move on now and save yourself.

The other part of me says…do this, it will be a long road, you will have more downs than you can ever imagine but if its what you want, just do it.  Your relationship will be tested but as a result you will find strength in each other & you will grow together.  There will be times when you feel like you can’t go on, but if its what you want then keep going.  Most importantly, take help when its offered.  It does not mean that you are a failure.

Are you open about your infertility? If so, has this helped?  If not, is it something you think might help?

Yes, we are now.  Our close family knew when we got our initial diagnosis.  Some friends and wider family became aware when I was hospitalised with OHSS because we couldn’t hide it.  Even though people knew we had IVF and it hadn’t worked, they couldn’t really understand so in some ways it wasn’t helpful that they knew.  It didn’t stop the insensitive and inappropriate comments, some from those closest to us.  I think the real understanding has started to come from the blog.  I outed us to our wider circles of friends and family that didn’t know via the blog.  Hubby agreed so we are both ok with our story, our reality, being out there.  Why should we hide what we have been through?  It isn’t anything to be ashamed of.

What advice would you give to someone about to embark on treatment?

When we started IVF I was completely naïve.  I thought it would work first time & I didn’t ask too many questions.  So, research your diagnosis, ask questions of the consultant & ask them to be realistic about your chances of treatment working.  If you don’t understand the process, then ask.  Make sure it’s what you both want, if it isn’t you will soon feel the strain of the treatment on your relationship.  Have things that you like to do planned.  Take time off work if you need to.  Put yourself first.  It is a gruelling process and you need all of your energy & strength to get through it.  But know that you can and will get through it.  Use the clinic counsellors, they are there to help you through the process and walk with you on your journey…

So that’s the end of my answers.

Now I tag the following bloggers to do the same, if they would like to:

Baby Cardenas Blog

Following my dreams

Serenity

Thanks for reading…!

FET #1…Our story continued

So after my run in with OHSS I took a further 3 months to recover, the hospital faffed about more than I thought humanly possible & we met with the head consultant about a complaint that we had to raise because of their sheer incompetence.  I should have known at that point that the next few years under the clinic weren’t going to go well.  Anyway, we finally got to the point of being able to have our frozen embryos transferred.  Well, if only it was that simple!

For those reading who don’t know much about IVF, there is a whole dictionary that comes with it.  So, Frozen Embryo Transfer (FET) is the process by which they thaw the embryos and if they survive the thaw then they are transferred back into my uterus in the hope that one implants and makes a baby.  This FET thing sounded easy in comparison to the huge drama that we had just been through with the fresh IVF cycle.

At this point we had 6 good grade day 3 embryos, so they had embryo-1514192_960_720[1]survived day 1 & 2 of development and had been good enough to freeze on day 3.  Some clinics like to take the embryos to day 5.  Our clinic at the time didn’t do day 5, just day 3.

Our first FET we were filled with hope and why wouldn’t we be.  I had to inject drugs for a number of weeks and these drugs effectively shut my system down so as a result I had symptoms of the menopause, deep joy.  They also didn’t tell me that I would have the period from hell before I could then start the drugs which would build my system up to be able to have the transfer.  This whole process is known as a medicated FET.  It means that the clinic is in control and can time the transfer to fit in with them rather than what would be your natural cycle, that’s not how its explained but I came to assume that’s why some clinics use medicated rather than natural FET’s, its suits them.

syringe-1884784_960_720[1]A few weeks of injections and then when the clinic said we were ready the oestrogen tablets were added in.  I then had to attend the clinic for a trans vaginal scans, yes that is exactly what it sounds like, a scan of my insides from the inside.  One of my Twitter buddies refers to it as ‘Wanda’, its also commonly known as the dildo cam, I think you get the picture.  A huge wand type implement being stuck inside you surprisingly doesn’t hurt but it’s a bit uncomfortable.    When the lining is good, right thickness and triple lined (yep that’s a thing apparently) a date is set for the embryo transfer.  Then the progesterone suppositories are added in to support the womb lining.  Now, here’s the thing, I don’t ever remember anyone saying to me before we started the fresh IVF cycle that I would have to shove a waxy progesterone suppository, shaped like a bullet, where the sun doesn’t shine and that it would leak everywhere & cause immense irritation.  Just another delight of IVF but of course we went with it, what else could we do.

We agreed that we would have 2 embryos transferred, if we got twins that would be ok, we’d have our family in one go.  It was explained that not all embryos survive the thaw so they thaw 2 and then if one or both perish they then start to thaw more.  We were hopeful we would get to have a transfer because we had 6 little embryos frozen waiting to become our family.

So after being a raging hormonal human being for a few weeks (felt like months) it was time.  Waiting for the phone call on the day of transfer is probably one of the most nerve-wracking parts of FET.  excited[1]

The clinic phoned to say they had thawed 2 embryos and they were looking strong so we were all set.  A wave of relief fell over me,  all of the trauma I had been through in the IVF cycle would be worth it and in 9 months we would have our family.  This was really happening.

Driving 35 miles with a full bladder was not a great idea, I had to stop and pee and then start to drink again.  I thought I was actually going to burst.  So we arrived at the clinic on time, bladder full and there were 5 other couples waiting.  All of us full of anticipation, full of fluid in our bladders and excited about the prospect of this IVF malarkey actually working.  No-one spoke, just silence.  I remember thinking that statistically it will probably only work for one maybe two of us sat in the room, it was a stark reality check of the reality of IVF.  I looked by far the youngest so I smugly thought of course it will be us.  How wrong was I.

I think I was 3rd on the list.  By the point of having the replacement I thought I was actually going to wet myself.  I was in agony but I wanted my embryos back so I would do whatever it took.  I was called.  C & I walked into the sterile, cold room.  I had to sign numerous bits of paper agreeing to the transfer, repeat my surname and date of birth time and time again to make sure the right embryos were being put back.  The consultant explained that with the embryos we had she thought we had around a 40% chance of it working.  That was mega, ok 60% chance it wouldn’t work but 40% it would was far more than the 20% we had read about.  OMG this was going to work.

I lay on the bed with my legs in stirrups and me being on show for all to see.  Well I was covered as best I could be but I was still on show.  One thing I have learned is that any appointments require my lady garden to be well maintained!  You may cringe or laugh but actually it’s a very serious conversation topic on the on-line IVF support forums, who knew!  So, I was scanned to make sure I had a full bladder, were they actually kidding, stop pressing on my bladder…please, its full!  Then the embryos were brought out in a catheter, which is a long, thin clear tube.  The catheter was inserted and guided using the ultrasound.  A little ‘ouchy’ as the consultant moved it around to find the right position.  All I remember thinking was ‘I’m in agony, I need to pee, I’m going to pee, please just get this done’.  Then the consultant told us to watch the screen, she said when we saw a white flash, that was our embryos being released.  It wasn’t a huge flash, just a subtle little flash of white light…they were where they belonged.  We had done it, we had got some embryos inside me, this was going to work and have a family.  C had tears in his eyes…I still just needed to pee.  It was strange going to pee after having embryos replaced, although it’s humanly impossible for them to fall out I had a real sense that I needed to protect them and not do anything to jeopardise our chances.  At the time I was very active on some on-line support forums, I was among people who got it and who had been through it, there was a wealth of information.  One thing I kept reading was that an embryo was like a grain of sand in a jar of jam…they weren’t going to fall out!

We left the clinic, both grinning from ear to ear, our embryos had survived the thaw and now they just had to keep growing and implant and we would have our baby or babies…eeek imagine that, twins.  Oh shit, what had we done…

I then entered the period of time in an IVF cycle that is called the Two Week Wait (2ww), this should also be called the 2 weeks of torture.  In 2 weeks we would know if it had worked.  Some clinics do blood tests, ours didn’t, I had to pee on a stick and phone them with the result in 17 days, yes 17 days.  That wasn’t 2 weeks in my book but all clinics are slightly different and ours insisted on 17 days and of course, under no circumstances was I to take a pregnancy test early, that could give false negatives or false positives.  I had been told!

I will leave it there for now…the two week wait & result deserves a post of its own.  I look back and wonder if we were naïve to be so excited and happy to have had our embryos transferred, but this was our chance. This was what we had to do to have a family, of course we were excited & of course it was going to work.  We grabbed hold of that 40% statistic and we held it tightly hoping and praying that it would work, it just had to.

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During this first FET I didn’t know anyone that had gone through this process.  I turned to a very supportive on-line forum where I spent hours trawling posts and connecting with people going through the same thing.  My real life connections couldn’t really support me in the same way, as much as they probably wanted to, they didn’t know how.  It was all going to be ok anyway because this FET would work and we would be able to move on with our lives as a family of 3 or more.  It was a lonely path to be on.  If you are reading this about to embark on treatment then please know that you are not alone, there is lots of great support out there.  I found what I thought worked for me at the time and you will too.

You are not alone

When OHSS strikes…

I wasn’t going to follow on from my last post IVF Cycle 1…don’t cycle & move house at the same time! quite so quickly, but here I find myself wanting to pen the next instalment of our journey.

If you are reading this post because you have stumbled across it desperately searching for information on Ovarian Hyperstimulation Syndrome (OHSS) then I’m sorry that you find yourself facing this experience.  I am not a Doctor so the information in the rest of this post is purely from my personal experience.  One thing I have since discovered through my counselling sessions is that this experience has made me struggle with facing further treatment and I’m not really surprised given what was to come next.

I was admitted to hospital on a cold January Friday evening.  My stomach was swelling, I looked 6 months pregnant (an irony that wasn’t lost on me) and I could barely move.  The consultant from the IVF unit found her way over to the ward that I had been admitted to and she examined me, ordered a drip to be started & tried to explain what was happening to me.

She explained that the follicles on my ovaries had been emptied at egg collection and the hormone levels in my system meant that the empty follicles were filling up with any fluid that they could take in and they were then releasing the fluid into my body, hence the large amounts of fluid that they had seen on my scan.  She said they didn’t really know why it happened, for some people it just did.  This was starting to sound pretty serious.  We started to ask questions:

  • Was there something they could give me to stop it happening, or to slow it down?   ‘No’.
  • How long would it last? ‘We don’t know, it will just stop on its own when the process runs out of steam’.   
  • Why was I being sick? ‘The fluid could be pressing on my stomach’
  • How long would I be in hospital? ‘We don’t know, we will need to see how you go over the next few days’
  • Will I need to be drained? ‘Hopefully not but we will see how you go’
  • Would there be any long term damage? ‘No, when it stops, it reverses itself and you will be fine’

The clinic I am with now quotes the following statistics:

1 to 2% of patients will experience severe forms of OHSS, with 1 in 1000 cycles the patient needs hospitalisation. 

So, its pretty rare to end up in hospital then, but there I was in a hospital bed on our 5th wedding anniversary.  There are two points that OHSS can occur in an IVF cycle.  Early onset and late onset.  I had early onset which occurs any time from egg collection to the point of a confirmed pregnancy.  Late onset OHSS occurs once a pregnancy happens and the hormone levels rise, causing the ovaries to leak fluid.  I hadn’t had an embryo transfer so they hoped mine would be relatively short lived and I would recover quickly.  Yey for me, that was positive I suppose?  There are 3 levels of OHSS, mild, moderate & severe depending on symptoms.  I had what was classed as moderate to severe, whatever that actually meant.

The reality of OHSS for me, at the time, felt pretty horrendous.  There was nothing any of us could do other than watch me go through it and come out the other side once it decided it had run out of steam as the hormone levels dropped.  By my next period it would be gone…that was by my records at least a few weeks away.  And so, my ovaries just kept leaking fluid.  I could feel them, for the first time in my life I knew the exact location of my ovaries because the skin close to them felt different to touch, sensitive.  My ovaries were now huge & probably much bigger than they had been during stimulation.  They had to monitor my fluid input and output to see how much fluid I was retaining, so yes that meant I had to measure my pee.  I couldn’t drink because everything made me sick.  Oddly one of the key things with OHSS is to keep fluid going in in the hope that it comes out & that your body doesn’t stop working.

After one uncomfortable night on the ward,  I was woken up early to move beds.  Were they kidding?  Luckily I had no belongings with me so I shuffled to another bed in a different ward, with my drip attached .  It was about 100 yards but it took me about 15 minutes to walk.

I couldn’t get comfortable, I couldn’t sit up, I couldn’t lie down, my skin by this point was tight because of the swelling.  It wasn’t stretching with the fluid, it was tight.  I had to have blood tests throughout each day to see what my system was doing and to check my kidneys were working, or at least that was how it was explained to me.  So a belly full of fluid and they couldn’t find veins to take blood from.  This was just getting better and better.  That weekend I was scared.  Scared about what was going to happen to me, would I ever get better?  I stopped peeing, this was bad, really bad.  There was no fluid coming out but with a drip there was plenty going in.  That meant one thing to me, my belly was getting bigger.  They made the decision to fit a catheter.  OMG the pain as they fitted it was horrific, I came out of the room and stumbled back to bed with C, my mum and dad waiting.  I looked a mess and I felt like a complete wreck.  They all just stared at me, no idea what to say, I think I cried.

C and my parents took it in turns to visit me, I was after all some 35 miles away from home.  C was struggling too, he couldn’t do anything and he got upset as did I every time he left me.  On the Saturday evening he left and I sobbed and sobbed.  How did I end up here?  Why me?  I was full of self pity.  It was 2am, I couldn’t get comfy and I couldn’t sleep.  I reluctantly pressed the buzzer.  A lovely nurse came to see me, she held my hand and told me that I would be ok.  I cried some more.  She set the bed up for me in the most comfortable position she could and then she did the kindest thing she could have at that point.  She hooked me up to liquid paracetamol.  I could feel it running through my veins and as soon as it hit my system I was asleep.  I woke up about 4 hours later not really knowing what was happening and then it hit me again.  I was in hospital, unable to move, a tube of fluid going in and a tube coming out the other end to collect anything in my bladder.  The measurements were taken throughout the day, the size of my abdomen charted, my weight taken, the fluid input and output measured.  Bloods taken a few times a day, with no veins to be seen it was getting more and more painful each time they tried.  It was clearly not improving, if anything it was getting worse as my belly grew some more.  I couldn’t eat even with the anti sickness drugs and the blood thinner injection each night was bruising me and stung like hell.

Sunday was here, C came to visit me in the evening.  I could barely move but was told to try to move around to avoid DVT.  Oh yet another possible issue.  Sunday evening was when it hit me, I cried, I couldn’t breathe.  I actually couldn’t breathe.  I couldn’t draw breath.  I felt like I was suffocating.  Chris pressed the buzzer, me in the mid flow of trying to catch my breath.  No one came.  He pressed again, again no-one came.  He went to fetch someone.  The others in the ward were watching me, I just wanted to hide but I couldn’t, I was on show for all to see.  A nurse came, closed the curtains, took my ‘vitals’ and said I was fine, just having a panic attack.  Excellent…so I wasn’t suffocating from fluid but I was panicking.  It took me a while to calm down but I still couldn’t breathe properly.  The nurse left, C left as visiting drew to a close.  Another night on my own, the darkness and sadness descended again.  The tears flowed some more.

Monday morning and the ward was being prepared for the patients they were expecting.  Time for another bed move.  By this point I had belongings, I was told to pack up quickly and move.  The nurse got hacked off with me but I physically couldn’t move.  It wasn’t even 7am and I was being moved.  Again I dragged myself, my drip and my pee bag down the corridor and onto the day ward.  A few hours later a consultant from the IVF unit came to see me…with 5 students!  She asked how I was feeling, pretty rubbish actually.  I now also had a urinary infection which was being treated with anti biotics.  This was just getting better.  She asked if it was ok for the students to observe, of course I said, they need to see this!  She measured me, looked at my notes, weighed me and said that it hadn’t reversed itself yet and they would continue to monitor in case they needed to drain me.  She explained to the students what I had, how it happened & how I would recover from it.  I didn’t speak, I just sat silently & listened.  She asked for the drip to be removed & they duly left.  About 2 hours later another consultant from the IVF clinic came to see me.  She asked where the drip was, I said it was removed a few hours ago, she shouted a nurse and told her to hook me up to a drip and quickly.  Whatever, I was done with it.  I was exhausted.  I just wanted to sleep, but I couldn’t because of my ever growing belly.

As it was a day ward it filled up during the day and then emptied by 6pm, where I would then spend the rest of the evening on my own once C had left.  A laptop and a stack of DVD’s got me through the evening.  The silence was deafening.  One evening I had a visit from a lovely Doctor.  He was sent to try and get blood out of me because the nurses had failed.  He managed to draw what he needed to and asked what I was watching.  ‘Two Weeks Notice’ I replied.  He said he loved Sandra Bullock and would I mind if he watched some of it with me!  My faith in humanity was restored.  He sat with me, in the silence as we watched some of the film.  About half an hour later he said his goodbyes and wished me well.  As he walked away, I smiled.  It was going to be ok, I was going to be ok.  There were people that genuinely cared.

They had put me in a bed next to the window because I was due to be staying for a while.  I soon clocked that I could see the building where our embryos were being frozen.  This raised an unexpected emotion in me.  I wanted them back, I wanted to protect them & I wanted to tell them that I loved them all, all 8 to 10 cells of them and I was going to come back for them.  It was the strangest thing I had felt on my journey to date.  Our future children were over the road and I couldn’t do anything other than stare.  I had nothing to show for our treatment, it had gone wrong & it was my stupid bodies fault because it had gone into overdrive.  I was never doing this again.

The minutes turned to hours, more blood tests, more measuring…still it wasn’t going down.  The food was the pits.  The anti sick drugs started to work and I could finally eat.  C brought food in for me because the hospital food was quite frankly awful.  Monday & Tuesday saw no improvement, Wednesday came and it wasn’t getting any better.  Wednesday afternoon came, I was sat on the bed chatting to my mum and all of a sudden there was a gush of fluid into my pee bag.  We both noticed it…it happened again.  And then the start of the end began.  The pee just kept coming and coming.  It was like someone had turned on a tap.  I cannot describe how happy I was to see pee going into a bag!  The nurse came to see me & agreed that it looked like it was finally starting to reverse.  YEY for me!  I was going to get out of the hospital, get back to normal and get my embryos back!

I was monitored closely over the next 24 hours.  The drip was removed and I had to drink and record how much I was drinking.  The sickness started to subside.  My belly was starting to slowly reduce in size.  Thursday came. The consultant from the IVF clinic came and said I could go home that evening.  I was getting out…!  Problem, I still couldn’t walk well, my legs were the size of tree trunks, all of the fluid was heading south.  Every part of me from the belly down was still swollen.  They removed the catheter, I wasn’t sorry to see that go.  I then needed to pee what felt like every 2 minutes, the fluid continued to leave my system.  How was I going to manage an hour in the car home?  I had to wear my mums clothes because none of mine fitted, that included her rather large pants & jogging bottoms.  I didn’t look great but I didn’t care.  Thursday evening came, I got the official discharge papers and we could go.  I stood in the empty ward as C gathered up my things and I stared out of the window towards the building where our embryos were in the deep freezer.  I was leaving them, it sounds completely ridiculous now but I said goodbye to them.  I waddled out of the ward with tears in my eyes.  I just wanted to get home and wanted this to be over so that I could get my embryos back.

It would take a further 6 weeks off work for me to be fully recovered.  I say fully recovered in the physical sense.  I don’t think I have ever fully recovered from the emotional impact of what happened to me.  It filled me with fear of IVF & one thing was certain, I was never doing it again.

I will leave it there for now but I will return with our journey into frozen embryos replacements some time soon.

I hope in sharing this part of my story I can give others comfort that none of us are alone in this journey.  OHSS is awful but it does get better & you can move forward from it.  I struggled to find people who had been through it, I couldn’t find anything that said this is awful but it does get better.  I can assure you that it is awful, but yes it does get better.  I would also advise you to talk about it.  It was 6 years after my first experience before I talked about it with a counsellor.  I hadn’t realised the impact that it had on me and how it had affected my relationship with IVF.  Please don’t make the mistake I did and try to bury it, please find someone to share your experience with.  I can guarantee that it helps.

You are not alone