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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FET #4…this had to be our time…surely?

It took a few months for me to recover from my second brush with OHSS. Another year had passed by with no pregnancy, no baby.  We headed towards Christmas with the now familiar sense of dread for that time of year.  Everyone around us was excited about Christmas whilst I just wanted it to be over so that we could get on with our next cycle.  I struggled through, pretending as best I could that I was ok and coping with what I had been through.  That’s one thing infertility had done to me, it had made me able to survive, able to cope, just about.  2012 came and went, another year of heartache.  At least we had 6 embryos in the freezer.  We were ready to start our family and get on with the rest of our lives.

Early in 2013 I started the familiar routine of injections to down regulate my system.  It had just become part of who I was, what I did.  Injecting each evening became my new routine for a few weeks until I was ready to start the meds to build my system back up again ready for transfer.  I was having acupuncture, this too had become my routine for our FET’s.  It relaxed me, I felt less stressed and more hopeful after each session.  That alone meant it was worth carrying on with the acupuncture.  It was my time to try to get some perspective and calm in my life.

So, meds were added in and as in my other cycles the lining was good, so we were ready for transfer.  I started to take the steroids in the hope that they would stop my body rejecting our precious embryos, if in fact that was the cause of our continued inability to conceive.  I didn’t feel too many effects of the steroids other than being hungry and craving salt.  I had noticed over the last cycle that my weight started to increase, and eating because of the steroids only added to my weight gain.  I didn’t actually care.  I had one focus and that was having a family.  Everything and everyone else in my life was irrelevant, just as I felt that I was irrelevant in everyone else’s life as they got on with things and I struggled in a place where I felt stuck.

The day of transfer came, the phone call came…they had thawed 2 embryos and both had survived the thaw and were looking good.  We travelled the 35 miles to the clinic, full of hope that this would be our time.  Things were different, the extra treatment would make the difference this time.  I don’t remember where I was on the list, I didn’t care.  I just wanted our embryos back where they belonged.  I was called into the sterile room and I started to go through the paperwork with the nurse.  She asked if I was ok, yes was the reply.  She looked through my notes and said:

“I don’t need to tell you what happens next, do I?  You have done this a few times.”

What. The. Actual. Fuck.  I just wanted to scream at her…yes I’m here again because your shit useless clinic can’t get this to work for us, that’s why I have to keep doing this bloody awful process.  I was shaking with anger and hurt.  I was hormonal, hopeful, nervous and most of all scared that this was never going to work for us.  How dare she be so insensitive?  I got onto the bed still shaking with anger.  The embryos were brought into the room, the catheter inserted into me and we looked for the white flash.  There it was, the fourth little flash of hope that we had seen in the last 3 years.  How could this not work?  How could we keep going through this?  This had to work…

I walked out of the hospital, even though we still had 4 embryos frozen I told C that I could never step foot in the hospital again.  It would be the last time that I ever went to St Mary’s in Manchester.  I didn’t know what would happen to our embryo’s but I knew I couldn’t keep going to that hospital.  I was done with them.  We travelled home and hoped and prayed that this would be the time it worked.

This was the only two week wait where I worked all the way through.  I knew it was a risk, I had a stressful job, a demanding boss, a big team to manage but I needed the distraction.  It was March and we were due to test on Easter weekend so we would have some time to deal with the outcome if it was negative.  I got through the first week, full of hope, a few wobbles with Dr Google but on the whole it was ok.  I entered the second week and the doubt started to creep in.  Maybe I just knew, I seem to always just know.  A few days later and there is was…the bleeding started.  On the same day it had on my previous cycles.  It was over and I knew it was.  I went into work and phoned my manager.  I told her I had just found out that our latest cycle hadn’t worked, she told me to finish anything urgent and to go home until after the bank holiday so she gave me a couple of days off.  I didn’t make it through the two week wait again.  Another failure, another negative, another piece of my heart gone with our precious embryos.  There was no build up to testing, I knew it was negative.  I had no idea how I would even start to recover from this.  What else did we need to do to get this to work for us?  What had I done to deserve this?  There was going to be no baby for us in 2013.

I contacted the Dr about coming off the steroids, she told me just to stop taking them because I hadn’t been taking them for long I wouldn’t need to taper them down.  I stopped taking them that day.  By the afternoon I felt utterly dreadful.  I sat slumped in the lounge next to the radiator.  I couldn’t move, I couldn’t focus.  I felt numb, I felt nothing, I felt really unwell.  I decided that it was the fact I hadn’t had any steroids so I took half a tablet.  It seemed to help so I tapered off them over the next few days.

Easter weekend came.  How was I supposed to take part in family life when we had just been through yet another failure.  I was a failure.  What was the point in any of it?  I don’t remember what day it was but what happened next shook me to the core.  Taking a shower and I just stood under the water, as hot as I could stand it.  Tears rolled and I couldn’t stop them.  I huge ball of rage welled up inside.  I started to panic, my mind racing.  How could I stop this whole thing?  How could I stop going through this?  Then in an instant it hit me, there was no point to me being on the planet, I needed it to be over and the thing that came to mind was that I shouldn’t be here any more.  It was there, I needed to end it all.  Holy shit, what just happened.

This thing called infertility had driven me to a place where I thought that I was of no value to anyone, I had no purpose.  If I couldn’t be a mum then what else was there.  If I kept failing then what was the point of me being here.  I had no future.  There was just nothing other than a black hole.  I was angry at everyone around me, at the world but most of all at myself.  I was full of sadness, for me, for C, for the family we did have that didn’t know how to talk to me or help me.  I was utterly depressed and anxious.  I had no clue what to do, where to turn.  No-one to ask for help, there was no-one that could help me.  C suggested counselling.  Why did everyone keep suggesting counselling?  How many times could I say that a counsellor wouldn’t make me get pregnant?  A counsellor would not and could not help me.  I would see a counsellor when this whole sorry mess was over after all the treatment was done and I had really failed, but not now.  Just no.

I called the clinic to let them know it failed…AGAIN.  Condolences, blah blah blah.  No I didn’t want to speak to the flaming counsellor.  I explained that I had been here before and that I would be fine, I always was.  She said I could call back to request treatment when I was ready.  I told her that I wouldn’t be having another cycle with them and that I was looking into moving our embryos to another clinic.  That was it…that was the new plan.

I think that is how I got through, I lunged from failure to a new plan.  If there was no plan, there was no hope.  If there was no hope then I had nothing.  I was worthless.

Everyone around us carried on with their lives,  We tried our best to move through the grief and heartache.  We booked a holiday to Sorrento, something to look forward to and something to try to help us rebuild ourselves.  The year before we had been to Sri Lanka & Tenerife.  Comments about the number of holidays we had really started to hurt.  Yes we had nice holidays, but why couldn’t anyone see that it was how we escaped life around us and tried desperately to keep our relationship in tact.  Why couldn’t people see that we were struggling and needed something, anything to look forward to.  After all, it was becoming more and more unlikely that we would have a family.  That dream was drifting further and further away with each passing year.

Within a few weeks, I had researched how to move embryos, I had done more research on immune issues causing implantation failure and I had found a new clinic.  I wasn’t interested in anything else.  Infertility had destroyed me, the essence of who I was.  It consumed me, it controlled me.  I had nothing if I didn’t have hope.  I had to keep going.  And that’s exactly what I did.

I will leave it there for now.  It has been hard to write about yet another failure.  Yet, here I sit with hope in my heart, thinking about doing it all again.

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.

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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

Detours…A Review

This is something new for me, it’s my first ever book review!  As you can imagine I have read lots of books with an infertility theme.  When you are going through treatment or waiting for the next step it’s hard to know if something is going to be helpful and if it’s going to give you hope or just make you feel like even more of a failure.

I recently came across a new book called Detours, Unexpected Journeys of Hope Conceived from Infertility by Sue Johnston.  The strap line of giving hope immediately caught my eye.  I have struggled with infertility for 10 years and you could say that my reserves of hope are somewhat diminished.  I was looking for something to give me a boost and to remind me that I’m not alone.  This book delivered on both fronts.

Detours is a series of short stories written by those that have experienced infertility first-hand.  Each one is written by the individual and as a result there is a collection of very personal and heart-warming stories.  The thing that brings them together is their struggle to conceive and their ability to seek support from others to get through the rollercoaster that is infertility.

Each story follows a different path, the cause of infertility is different and the treatment paths that they decided to take (or not take) are different.  It covers a range of treatments including initial investigations, Clomid, IUI, IVF, surrogacy, donor treatment & embryo donation, so no matter what your diagnosis, there is something within the book that you will relate to.  Each story gives a true picture of what it is like to be waiting for treatment, having treatment & dealing with the outcome whether it’s positive or negative.  Many of them went through multiple cycles and somehow found the strength to keep going.

It isn’t overly medical which I really liked and it means that it is an easy read if you aren’t familiar with the world of IVF.  It focuses on the physical & emotional journey that each person took and the ways in which they sought and found support to get through it.

In parts, the pain and heartache oozes from the page and reminds us of how isolating and soul destroying it can be.  Over and over again it describes perfectly the emotional impact that infertility has on both the individual and the couple.

One of the stories gives a male perspective of infertility and treatment. This is a rarity and makes a refreshing change to read the impact on the male partner who has watched their loved one go through treatment.  It is a reminder that even though they may not be doing the injections or taking the drugs, there is a deep routed impact on them too.

For me, Detours is about surviving, keeping hopeful, staying strong & moving forward.

Anyone that has struggled with infertility will be able to relate to these key themes.  Reading that others have been where you are gives a certain amount of comfort & hope that you will get through it.

Compass

For me there were a few quotes that struck a chord.

For those starting out:

“You are about to embark on an emotional voyage.  Infertility treatments are like crashing waves; you will have your ups and downs.  Be kind to yourself.  Do whatever it takes to feel better…pick yourself up and do whatever it takes to move forward”  Sue A Johnston

I wish I had received this piece of advice when I had started my journey.  I have never been able to find the words to describe how it feels to be weathering the storm of infertility, Sue manages it perfectly.

For those in treatment or struggling to know where to turn next for treatment:

“This infertility journey can be long and at times treacherous.  But you can be your own compass.  You know your body better than any doctor.  You can control the direction of your own treatment.  Don’t fear getting lost because, no matter what the journey brings, you truly already know the way home”  Katie Kearney

I cried when I read this story.  This is so true, you are your own compass.  Follow the path that you are comfortable with, be your own advocate & take control of your treatment.  No-one else will do it for you.

For those moving on from treatment:

“…I can be happy and fulfilled without becoming a mother.  I am so thankful to finally realize that while life doesn’t always give us what we expect, we can still end up with wonderful gifts that extend far beyond our own limited hopes and dreams”  Christina M. Ryan

As someone who is now facing the very real decision of whether to carry on with treatment or not, this story had the biggest impact on me.  Yes, infertility is hard & IVF doesn’t always work but that doesn’t mean that you cannot lead a rich and full life.

No matter where you are in your struggle, Detours it has something for you.  It delivers hope.  Hope that IVF can work against all the odds, hope that you can find a way to build your family even though it may not have been in the way you expected or hope for a positive future even if that is without the family that you had always dreamt of.

The overarching message is to seek out support.  They found their infertility sisters and supported each other through even the darkest of times.  Detours encourages us to find strength and support from those that have been on a similar journey, they are the ones that are best able to help you on your own journey.

This book perfect if you are trying to support someone going through treatment but don’t quite know what to say or how reach out to them.  It gives some useful advice on things not to say to someone who is affected by infertility.

It is brimming with hope, advice and words of wisdom from those that have travelled the path before us.  Between them, they have over 100 years combined of infertility treatments.

Detours is an honest and emotional account of infertility and I would highly recommend it for anyone is on their own journey or supporting someone in theirs.  I have never read anything before that so accurately describes what infertility does to you, the struggles that you go through on a daily basis and how it really makes you feel when you are on the rollercoaster.

A heartfelt Thank You to those that allowed their Infertility Detour stories to be shared with such feeling and raw emotion.  We are not alone, there are many of us. 

About the Author

Sue BW Photo[221]Sue Johnston struggled with unexplained infertility for over a decade of her life. After 5 IVFs and 2 ZIFTs she finally conceived her one and only son. Infertility had a profound affect on Sue’s life and she is passionate about supporting the infertility community. Nothing in her life has affected her so deeply. Sue is an infertility advocate, author and anthologist.  Sue also leads her own RESOLVE affilited infertility support group and volunteers for their helpline. A portion of Detours will be donated to RESOLVE: The National Infertility Association. Sue has created her own blog and line of infertility support cards and gifts aptly named, “In-Fertility & Friendship Gifts.” To learn more about Sue Johnston and her advocacy work, please visit her website, The In-Fertility Advocate

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