Social Media…A Guide to Surviving

During my many years of struggling with infertility, one of the things that has often triggered my negative thoughts and emotions is social media.  Love it or hate it, it is part of life.  I would like to share some of the things that I have learned in the hope that it helps you to navigate your social media experience without it having a detrimental impact on your health and wellbeing.

I knew about our infertility issues before I started to use social media sites such as Facebook, Twitter & Pinterest.  These are the sites that I use regularly, although other sites are available I’ve never really got to grips with them.  I do not know a life on social media without the struggle of infertility.  I don’t know what its like not to be affected by the latest announcement or scan photo.  All I know is that even now, those posts can cut right through me, even if I know they are coming.  It feels like a fine balance to tread and at times it’s difficult to get it right.

After a number of years being upset and struggling with Facebook, as those around me were starting their families, one post about how fabulous it was to be a mother sent me into a spiral.  I wanted to type something along the lines of “I don’t give a damn if you are a mother, I aren’t, I’m infertile and that sucks so just get out of my personal space” but I didn’t.  I just watched the comments build on the post and I knew I couldn’t cope seeing it anymore.  That day I temporarily deactivated my account and stayed away from it for 10 months.  As a regular user I thought that I would miss it, but I didn’t.  The post coincided with me being in the depths of a depression that had taken hold of me, but a state which I had not yet acknowledged or sought help for.  It was a relief not to see posts and pictures in my personal space.  That is how we should view our social media accounts, they are a space personal to us.  OK, we are exposing ourselves to a much wider audience but that doesn’t meant that we can’t protect ourselves and our feelings.  Here is my simple guide on how to try to do just that.

If a site is causing distress then come off it.  Do not be afraid to hit the delete or deactivate account Laptop Monkeybutton.  I did it as I have described above and it was the best thing for me at the time.  I didn’t miss out on anything important.  Family & friends that were part of my life still kept in touch by other means.  What it did mean was that I didn’t have things that I couldn’t control or have an influence on thrust into my personal space.  I didn’t have to worry about what was going to pop up next and what would send me into the next downward spiral.  This may sound a little extreme but if its what you need to do, then don’t hesitate.  Accounts can often be temporarily suspended which means that if and when you are ready you can go back onto them.  That is what I did when I felt ready.

When I did go back on, I reduced the ‘friends’ list drastically.  I unfriended all of those people that I didn’t really have contact with and that I wasn’t generally connected to in the real world.  And that’s my next piece of advice, reduce your friends list to those you are happy to see updates from.  Why expose yourself to potential posts from people who aren’t important in your life?  You need to look after yourself and put yourself first.  Ask the question, will they even notice if you ‘unfriended’ them?  Probably not.  This is a more permanent deletion so if you still want to be ‘friends’ with them you can use the ‘unfollow’ button.  Do not be afraid to take control of your own space, don’t worry about what others may think, do what you have to do to stay comfortable.

If someone tags you in a post and it triggers you to feel low then un-tag yourself.  Don’t think that you have to keep yourself exposed to something that causes you upset.  Others want you to share in their joy but it can be a painful reminder of what you have been through or are currently going through (even though they may have no clue).  You come first, it is your space, protect yourself.

Closed Facebook groups can be a great source of support and allow you to connect with others that are going through the same things as you.  These, along with on-line forums have been of huge help to me over the past few years.  I will write a future post about how they can be helpful on your journey.

I have recently been having conversations about Facebook and how lots of us struggling with infertility don’t share our journeys openly on Facebook.  I was one of those, I might have posted the odd cryptic quote that someone who really knew me understood but I wasn’t shouting from the rooftop, look at me, I can’t have a baby.  For me that changed recently, but that’s from a place of 10 years of infertility and a renewed confidence in myself.  I also have the full support of Chris to share our journey, after all we share many of the same friends.  We have had nothing but supportive and loving comments but there was no way of us knowing that before I ‘outed’ us.  Don’t put pressure on yourself to use Facebook as a platform to share your story.  Its a very personal thing, you will know when the time comes and when you are ready to share your journey with others.  And when you do, I’m sure those that really care about you will be there to support you.

Twitter has become my outlet for my fertility ‘stuff’.  I only had about 5 followers who knew me in the real world so it seemed like the right platform to engage with others on their journeys.  At the time I wasn’t open about our infertility on Facebook.  Twitter can be a great place to share this journey in a more anonymous environment.  Lots of people on Twitter have great names for their profiles and they bare no resemblance to their real life names.  I have found it to be a very supportive community with lots of information sharing, but it doesn’t quite feel as personal and perhaps exposed as Facebook or some of the other on-line forums.  Limited to a relatively small number of characters and fast moving it can be a great place to pick up information but things move on quickly.  I will give a word of warning though, you may still see announcements if you choose to connect with others who are going through IVF treatment.  I know I can cope with these and actually like to see others achieve success.  I’m not sure if I would have felt the same at a different point in our journey.  Again, if you need to click the unfollow button to protect yourself then that’s what you have to do.  Infertility is hard and at the most unexpected moments you can be smacked in the face with a reminder of how low it can make you feel.  I have learned to step away when this happens, after all I need to look after number one.

Pinterest is my personal favourite.  I have one follower (no idea who or why) and I can pin quotes to my hearts content.  I have no desire to increase my followers and I love the fact that it feels like its just me.  I have a ‘quotes’ board, lets face it, if you are struggling with infertility you need somewhere to post all of those quotes that at the time of reading them resonate with you.  Its also interesting to see how my pins have changed over time.  My very first post on my quotes board was about hope.  This was between FET cycles…

The moment quote

My most recent pin is more about moving forward.  I like quotes that are to the point!

Never too late quote

I once created a board on Pinterest called Our Future…Maybe.  This board became the space where I went into my dream world.  It was full of things relating to our future family.  Cute things, practical things, things that we would need or have once I got pregnant.  It was the only place I could use as an outlet for those things.  After all, I wasn’t pregnant so I couldn’t do it on more open forums.  It became my safe place to live out our future.  As time passed, I still wasn’t pregnant and everything we tried seemed to fail, this board became a place of sadness for me.  I couldn’t post on it any more, couldn’t bare to find nice things to pin to it and I couldn’t look at it.  I deleted it.  It no longer exists and hasn’t done for a while.  So the lesson I learned was that its ok to dream but if it doesn’t become a reality it may eventually become a place of sadness and when that happens its time to wave goodbye and hit delete.  If we do ever have a family, I’m sure I will be happy to spend time pinning nice things to a virtual board.  In the meantime I will stick to quotes, gardens, paint colours and holiday destinations!

It has taken me a number of years to be fully in control of my social media space.  It helps greatly that I am now in a relatively good place with my own depression and fertility journey.  That’s not to say that occasionally something doesn’t hit me unexpectedly.  When that happens, I hide the offending post or take a short break from that particular platform.  And that’s ok, its ok to move away and come back to it when you are ready.  You are the most important person on your fertility journey and it is only right that you look after yourself and protect yourself from getting upset.

I hope that this post has given you some insight in how to navigate social media through the tricky journey that is infertility.  I wish I had the confidence much earlier in my journey to put myself first instead of thinking I had to be visible to my virtual world ‘friends’ and that I had to do the right thing for them.

Remember that you are not alone, but also remember to take care of yourself first and foremost.  Find people that can and will support you and step away from those that don’t.

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 Chris, 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.

Chris and my parents took it in turns to visit me, I was after all some 35 miles away from home.  Chris 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, Chris 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, Chris 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 Chris 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.  Chris 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 Chris 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

IVF Cycle 1…don’t cycle & move house at the same time!

So after my mini meltdown last weekend I feel ready and able to continue the story of our IVF journey.  I should warn you it may end up being a bit of an epic tale and we didn’t even make it to an embryo transfer!

In my post How Did We Get Here? I described our journey up to being referred for IVF.  So, in late 2007 we were referred to a hospital some 35 miles from home.  There was nowhere closer that had an IVF unit so of course we were happy with the choice made for us.  We didn’t receive an appointment to see a consultant until the summer of 2008.  The wait didn’t seem so bad at the time because at least we had an appointment, we were going to have IVF and we were going to get our baby.  This was going to happen quickly once we got seen, or so we thought.  Of course, it was never going to be that simple.  One thing that this journey has taught me is that you spend a lot of time waiting and hoping…wait & hope, wait & hope…you get the idea.  At this point there also wasn’t announcements all around us & there weren’t babies popping out all over the place.  Our family and friends were all still enjoying their late 20’s without much thought for having babies and there were we at the start of what would become a journey of epic proportions that would consume our entire life, but of course none of us knew that at the time.

Our first appointment with the male factor specialist at the IVF unit was a bit of a none event in some respects.  We talked through our history of trying to conceive, she reviewed the results that they had for Chris.  She asked us to get a series of blood tests done and she prescribed Tamoxifen for Chris.  It is a drug usually used for the treatment of breast cancer, but there Chris was taking it to try and improve his sperm parameters.  As far as I could see the only thing it did was make him grumpy.  He took them for a number of months and then we had to go back for another consultation.  The next time we would visit the IVF clinic was nearly 6 months later and so we were now into 2009.  Whilst waiting to be seen by the consultant, a couple who looked to be in their late 30’s came out from seeing the consultant and the lady was a complete emotional wreck, she was walking down the corridor in floods of tears with her partner trying to get her out of the building.  That image has always stayed with me.  I have no idea what news they had been given but I remember Chris & I saying to each other that we wouldn’t end up like that because of infertility.  At that point I just didn’t get what this process could do to you, it all seemed so simple and straightforward.  So, we went into our consultation having seen the couple just come out and I was a little scared.  There had been no improvement following the treatment for Chris and we were advised that we needed ICSI.  OK, what was that then?  I look back now and I can’t believe how little research we did and how naïve we were.  My advice to anyone is do your research from day 1.  We were just being guided by the so called professionals.  Now I feel like a walking infertility dictionary but back then I was clueless.

Decision made, we were going to have ICSI.  The consultant explained the process of ICSI, how I would be stimulated, that eggs would be removed, fertilised, replaced and if we were one of the lucky ones I would get pregnant.  Sounded great…lets do this.  We were going to get our baby!  The consultant explained that in a very small number of cases there was a risk of Ovarian Hyperstimulation Syndrome (OHSS) but that it was extremely rare and that we shouldn’t worry too much about it but it can happen.  Ok, sounded like a risk we were willing to take and it didn’t sound like it was something for us to worry too much about.

At the same time as being put on the waiting list for treatment I had started to have mini meltdowns about living in a house surrounded by other houses full of children.  18651_1349569_IMG_01_0000[1]I wasn’t coping well with our diagnosis and I needed to escape.  We made the decision to sell our gorgeous 4 bed family house that we had worked so hard to buy and move house for a life in a more isolated & more importantly child free environment.  So, in 2009 we sold the house and bought what could only be described as a 2 bed wreck of a cottage.  It was a mish-mash of original cottage & add on’s, it was a complete dive inside but it was going to be fabulous!  The house sale went through at the end of 2009 with a completion set for January 2010.

In November 2009 Chris turned 30 so we took ourselves off to New York for 5 days during Thanksgiving.  It was of course going to be our last child free holiday because of course the IVF that we would embark on when we got back would work!  So we had a fab week in New York and then when we returned I phoned up to request treatment.  This was it, it was going to happen.

Macy's Believe

I went to the hospital for appointments to collect my drugs and to be ‘taught’ how to inject myself.  There was no practical teaching, the nurse wasn’t allowed to actually use any stock because it cost the unit money (her words not mine).  So, I was to mix some drugs, put the syringe in at the right angle and press the plunger.  Ok, we got this, sounded do able.  Due to Christmas, we were to start in January 2010.  So we got through another childless Christmas (which were getting harder to cope with) and yey January arrived.  IVF time.  I went for a scan and it showed I had lots of follicles.  Ok, this wasn’t going to be a bad thing was it?  We needed eggs and I’d got follicles which equalled eggs.  I had 14 follicles on one ovary & 9 on the other ovary.  What was ‘normal’?  I had no idea.  They asked if I had Polycystic Ovary Syndrome, ‘no’ was my reply.  They wrote down that I had Polycystic appearing ovaries but they never explained what that meant and I didn’t ask.  So we were all set to go!

Injecting yourself is an odd thing to do.  I didn’t want Chris to do them so I just got on with it myself.  I struggled each night to snap the top off the glass ‘bottle’ without breaking it but I did it, I mixed the drugs to make up 150 of Menopur, pinched an inch and stabbed myself.  I didn’t have anyone to say ‘sharp scratch’, some nights I just hovered the needle around until I could muster the courage to stab myself.  And when the needle touches the skin, it hurts…a lot.  Five days into stimulation I started to feel a little rough.  This was also the week we were moving house!  On day 8 of stimming I went for my first scan and blood test.  I had a total of 33 follicles now growing on my tiny ovaries.  No wonder I felt a bit rough.  My E2 level was 15808, peak levels at the time of the final trigger shot should be around 4000, so you could say mine were a little high!  No worries, the dose of Menopur was dropped which would hopefully reduce the level and help me avoid OHSS.  SAY WHAT?  OHSS…what were they talking about.  This was the day we were moving house, Chris was at home with the removal men and there I was being told to eat chicken to avoid OHSS.  Yes, I was actually told to eat chicken.  I know now it was related protein but that wasn’t explained at the time.  I felt like utter crap.  I went home & had to unpack boxes into our new shit hole of a house that was literally falling down around us.  My dad asked what the F*** were we thinking and he doesn’t swear much, but it wasn’t helpful!  My ovaries were the size of who knows what & it was a struggle to walk.  I felt sick, I couldn’t eat, I couldn’t move, I just wanted the eggs out of me.  I couldn’t think straight, I couldn’t think full stop.

2 days later I was back in the clinic, E2 level was 27000 and I now had 37 follicles.  Time for trigger.  So I did the trigger shot which effectively is a massive hormone shot to prepare the eggs for collection.  Holy hell I felt rough.  A few days earlier having thrown a washing basket full of ironed clothes down the stairs because I was angry followed by floods of tears, I had vowed to Chris that I would NEVER do this again.  It was utter shit, I felt like utter shit.

Egg collection day came…finally these eggs would be removed and we would get some embryos to transfer.  It was going to be worth it.  Egg collection went well, I was knocked out and didn’t feel a thing.  I woke up and my tummy was visibly smaller.  They put me on a drip of Albumin, which is a protein, to try and keep OHSS at bay.  The consultant explained that 20 eggs or more and it was an automatic freeze all, I had 16 eggs so I should be ok.  A few hours later Chris & I walked back to the car talking about how many embryos we thought we would get, when transfer would be and generally quite happy that we had made it over the stimulation hurdle.  The clinic had told me to ring if I was feeling unwell but that they would be in touch about our day 3 transfer (they didn’t go to blast at that point).

The next couple of days I was off work, I felt ok to start with but as the time went on I noticed that by belly had started to swell again.  Cue panic Googling of OHSS, signs of OHSS, how to prevent OHSS, success of IVF with OHSS, cancelled transfers due to OHSS, does OHSS kill you, how long is recovery from OHSS…so pretty much anything I could think of with OHSS in the title.  I also looked to the on-line forum of my cycle buddies for re-assurance and support, but none of them seemed to be suffering the ill effects like me.  The group of people that had got me through the last few weeks suddenly seemed like they were on another planet and I suppose that is one of the negative aspects of virtual support.  Its great for some things but for me at this time it just became a source of feeling isolated and scared.  Over the next few days we had news that 12 of the eggs were mature and 6 had fertilised and were progressing well.  Some positive news we thought!  The day of transfer came & the clinic phoned with a time to come in.  Chris took the call, I felt too unwell to speak to them.  He explained that we thought I may have OHSS.  They said to come in, they would scan me but they were sure I would be ok.  I felt ill, I was being sick, I couldn’t drink anything, couldn’t eat anything and I was now not able to stand up straight because of the swelling and tightness around my belly.  Holy shit this was getting serious.

The car journey to the hospital was awful, I winced at every bump in the road, I was in pain, I was uncomfortable, I was hot then cold and I just wanted to throw up.  This was turning into an actual living nightmare.  How could they put my precious embryo back, it wouldn’t stand a chance of surviving, surely?  We reached the hospital and I waddled from the car to the IVF unit.  I looked like an absolute bag of crap, I felt like one too.  They made me wait with 5 others who were in for transfer.  All of them looked absolutely fine.  I kept being sick and the nurse said to me “well I hope you have a full bladder so they can do the transfer.”  Was she actually kidding me, couldn’t she see the state I was in?  Clearly not.  We waited and waited, me throwing up constantly.  I just wanted to curl up in a ball and cry.  Why was this happening to me?

We were taken through to the room where the transfer was going to be done.  There was a fantastic looking 10 cell embryo waiting to be put back to make our baby.  I struggled to get onto the bed.  They started to scan me and commented that my bladder wasn’t full.  I didnt care, I just felt so bad.  They turned the screen away from me and then her face changed.  There wasn’t fluid in my bladder but my abdominal cavity was full of fluid.  She turned the screen towards me so we could see.  She explained that they black areas were fluid and that there shouldn’t be any free fluid, I had it all in my abdomen hence the swelling.

Bad news, she said, we cant do the transfer, worse news, we have to admit you into the main hospital to try to manage the OHSS.  WHAT??  I had nothing with me, we were 35 miles away from home with no family close by.  How was this happening? I felt so unwell by this point that I had to lie down and could barely move.  They had to figure out how to get me from the IVF unit to the main hospital over the road (I say over the road, it was more like over the road and around the corner).  They didn’t have a protocol in place because it hadn’t happened recently and the main hospital had only recently been moved away from the IVF unit.  So they called an ambulance…yes you read it right, they called an ambulance to take me all of about 500 yards.  Chris was busy making phone calls to let family know, I was completely on another planet and our fabulous 10 cell embryo was headed for the freezer with its 5 siblings.  This was one shit day.  A few hours later, which to me felt like an eternity, no ambulance had arrived.  Cue mad phone calls to the ward in the hospital, special permission for Chris to get his car and drive me to a back door to be picked up by a nurse and between a few fab nurses and Chris they got me to the ward.  I got out of the car and into a wheelchair (by this point I couldn’t walk properly) and then made it onto a bed on a ward.

It was our 5th wedding anniversary & we should have been celebrating, instead I was lying in a hospital bed, holding back the tears, wondering how the heck I ended up here & when was I going to get better.  Chris had to leave me with the promise that he would return the next day for visiting.  He left with tears in his eyes and the fear, sadness & emptiness descended around me.  This was the reality of IVF for us and it truly was the pits.

I will leave this part of our story there for now but I will pick it up again soon.

If you are reading this about to embark on IVF then please don’t be put off by my experience but do please ask the right questions about how you are going to be stimulated and what will happen if you start to head in the wrong direction.  I was clearly headed for over stimulation but I wasn’t informed enough to question the course of treatment they were giving to me.  Don’t be afraid to ask what your body is going to go through and don’t be afraid to say that it may not be the right thing for you.  I felt so alone in my journey at this point and I felt like there was nowhere to turn and no-one to seek help from.  Please know that you are not alone in this, there are many of us.

You are not alone

 

 

 

 

Infertility sucks…fact

So today I was going to follow on from my last post with the story of our first IVF cycle.  This morning I changed my mind.  I woke up full of anger at our situation, with the realisation that infertility truly does suck.  I don’t think the hormonal headache, the feeling like I have a hangover when I haven’t drunk a drop of alcohol and the immense stomach pain that occurs each month on cycle day one has helped my frame of mind.  I’m not one for using bad language but this ‘quote’ pretty much sums up how I feel today about our infertility…

YPMTFO

And so I wrote a list of all of the reasons why, in my opinion, infertility sucks.  I thought it might help me and others if I shared the list so that I could off load and others would know its normal to hate infertility & what it does to you.  You may relate to all, some or none of my list but here is part of the list anyway.

Infertility Sucks because…

  • it makes me sad
  • it makes me cry
  • it’s broken my heart into a thousand pieces over & over & over again
  • I have had to isolate myself from so many situations just to feel like I can survive
  • it hurts in a way that cannot be described
  • it means that I’m never likely to be a mummy
  • it has stripped me of something so deep that I cannot begin to explain
  • it makes me feel like my body has failed me, failed us, failed our embryos
  • at times I feel broken, it has broken me
  • I have to ask for help just to get through some days
  • it has made me feel weak
  • at times it feels like we’ve wasted literally years of our lives trying to achieve the impossible
  • it’s just shit

I actually feel better for thinking and writing about some of the thoughts and feelings that infertility has forced me to face.  Today I have thought about all of the above and a whole lot more.  It has been one of the toughest days for a while but I know that I will be ok.

There is a strength that comes with being able to recognise that you aren’t having a good day and that you aren’t ok.  It means that you can take a step back and try to look after number one.  There are times on this journey where you have to be selfish, to know that its ok not to be ok and its valid to feel the way you do.  You are not alone on those bad days, just as I know I am not alone today.

You are not alone

How did we get here?

I often find myself asking this very question, how did we end up here?

Perhaps before I go any further I should do some introductions.  I’m Kathryn & my hubby is Chris.  Our family is the two of us and our gorgeous puppy, Jenson, who came to live with us 12 months ago.  That’s us, that’s our family.

 

 

Our story starts back in the late 1990’s where we met at school.  We spent our late teen’s and early 20’s pretty much like everyone else, having fun!  In 2005 we got married and had absolutely no immediate plans to start a family.

After 18 months of marriage it happened, the switch got turned on.  I remember it happening even now.  I literally went from not even thinking about having children to I want a child within what seemed like 24 hours.  That switch was the most powerful driving force that I had ever felt.  I wanted a baby, we were going to have a family.  It consumed me, it consumed us.  We made plans, we talked about what our family would be like & how many children we would have.  It was exciting, it was the next natural step and we both wanted it more than anything.

The first few months I wasn’t really panicking but after 6 months of nothing I started to wonder if something wasn’t quite right.  The obsession with ovulation set in and trying to make a baby became the be all and end all of my life.  I couldn’t think about anything else.  After 18 months of nothing and me being a complete wreck Chris went to the GP.  He wanted to make sure there wasn’t anything wrong with him.  Off he went to the local hospital to do some samples.  I don’t think either of us actually thought anything would be wrong.  There was always a hope that it would just take time.  Neither of us were prepared for the outcome of those tests or what it would mean for our future.

We both went to see the GP together for his results.  That’s when I heard the words that I will never forget:

“You will just need a little help getting pregnant”

Looking back now I think that is what I would call the understatement of the century.  I don’t think I heard much else that the GP said, he asked us which hospital we wanted to be referred to.  He recommended one so we told him to write the letter to refer us.  I also heard the words IVF but at that time I don’t think I really had a clue what those three letters actually meant.  Of course I knew what IVF was, but I don’t think I had any clue about the details of what IVF treatment involved.  Part of me is glad I didn’t because if I knew then what I know now I’m not sure it would have been a path that I would have gone down so easily.  We found ourselves just going with it, without much caution.

I cried all the way home from the appointment.  How could this be happening to us?  Why me?  How do I cope with this hellish situation?  I had no idea what just happened.

That evening I went to see my parents.  I wanted to tell them face to face.  As my mum opened the door I just burst into tears.  I don’t really cry but here I was barely able to speak.  I managed to tell them what had happened.  There were no words that either of them could say to make this better.  For once they couldn’t fix this for me, for us.   Somehow we had to pick ourselves up and try to move forward.  We didn’t realise the the impact this would have on our whole family.  We were open with close family from the outset and I’m not sure we would have coped with the long haul had we not done that.

We didn’t even question whether we were going to have IVF, it was going to happen and we were going to have a family.  After all, didn’t IVF just work?  We were in our late 20’s, we had time on our side and we were going to do this.  We were going to get a little help and I was going to get pregnant, we were going to have our family.

I think we underestimated the initial tests and potential diagnosis, we just weren’t prepared at all.  I don’t know if anyone is ever prepared or ever can be prepared to hear that the thing you want the most, the thing your heart yearns for and the thing that seems to be so natural just isn’t going to happen for you.  We were blindsided.  We didn’t think about the reality of what this meant for us as a couple.  Somehow we had to find the strength to deal with it and move forward.  And that’s exactly what we tried to do

It has felt a little strange re-telling the early part of our story.  This is how we got here.  This is how our IVF journey started…

Wherever you are on your infertility journey I want you to know that you are not alone, many of us are on the same path & you will find the inner strength to get through whatever is thrown at you.  We are all true infertility warriors.

You are not alone

 

Aside

And so the journey begins…

So here I am writing my first ever post.  One thing you should know is I’m more of a talker than a writer so I will just have to see how this goes.  I actually have no idea what I’m doing so I’m quite impressed that I’ve managed to get this far.

The title suggests that I’m at the start of something new.  In terms of sharing my story, my thoughts and feelings I suppose I am, but it comes from long 10 year history of infertility.  I will share the details of my treatment journey in future posts, but in short I have been to 4 clinics, had 8 cycles of IVF, been hospitalised twice with severe Ovarian Hyperstimulation Syndrome, had 12 embryos replaced which have all failed and we now face the decision of whether to continue with further treatment.  I have suffered from stress, anxiety and depression for a number of years as a result of a stressful job and the years of infertility treatments. You could say its been a bit of a traumatic journey.  I didn’t realise the toll it had taken on me both physically and emotionally until I suffered a breakdown in 2015.  That became the turning point for me, I asked for help and as a result I started to find a renewed strength and focus to work towards a positive future.  I started to take back control.  One thing that infertility strips you of is control.  And so here I am some 18 months later with a much more positive outlook on my future and life in general.

The past 10 years haven’t all been dark and depressing.  Hubby and I have travelled to some amazing places and I hope to share some of those experiences too.  I love to travel although flying scares the cropped-maldives-header.jpghell out of me!  I used to struggle to see holidays as a positive thing for many years because they always came after the disappointment of failed infertility treatment.  Lying on a beach shortly after my breakdown somehow didn’t feel good and I just didn’t know why I couldn’t feel ‘happy’.  Infertility was controlling my life and our life together.  I am now learning to take back control and make decisions that are right for me.

I have somehow managed to find the inner strength to move forward.  I hope that the focus of my blog is about finding strength and moving forward, even during the most challenging times.  I hope that anyone reading this can draw something positive from my posts, whether that be finding their own strength to move forward, finding hope that you can get through just about anything, knowing that its ok not to be ok and it’s not a failure to ask for help.

And so I suppose I am on a new journey, one which I look forward to sharing with you…

You are not alone