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.
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. So 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 Hyperstimulation 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.