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 C. She asked us to get a series of blood tests done and she prescribed Tamoxifen for C. It is a drug usually used for the treatment of breast cancer, but there C 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 C & 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 C 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. 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 C 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.
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 C 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, C 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 C 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 C & 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. C 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. C 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 C 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 C 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. C 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.