Updated: Apr 5, 2020
The first in my series of personal stories. I am so grateful to Rebecca from @ivfbeentrying for sharing her story with me. Please be respectful in your comments.
**trigger warning** This story deals with miscarriage, chemical pregnancy and pregnancy
If you would like to share your story, I would love to hear it and I'm sure there are many people out there who would take comfort in reading it - hearing that they are not alone, feeling some kind of connection to someone else's journey can help you to feel less isolated and sharing your story can be a form of therapy.. Let's get started with Rebecca's story, in her own words:
Since joining Instagram with this IVF / infertility account I have never fully introduced myself, or given a full run down of my/our IVF story. One of the reasons for this was that before Instagram I was very active with a blog and twitter. Unfortunately things between twitter and my blog didn’t end well for me, it got shared with people close to me and things were taken the wrong way and that broke me more than anything had ever broken me before. I stopped being quite so open about everything and since then I have been extremely careful about what I share.
The second reason I have not shared very openly on here is because we have been going through IVF / ICSI because of severe Male Factor Infertility. From what I have read and seen of so many of your stories I have had it easy. I don’t have endo or PCOS, my periods are relatively regular, aside from spotting that leads up to my period and I always have good lining according to any doctor who has looked down there. The biggest thing is that I have always tried to be sensitive about, is what I say about my husband in this situation. Over the last few years he has placed so much blame on himself for us needing to go through IVF. So I have been very conscious about not making this worse for him than it already is.
That’s the shit thing about infertility, it doesn’t matter what it’s caused by - it’s there, and in some situations there is no amount of exercise and healthy eating that can reverse the reasons for the infertility existing. Infertility is shit and over three years of watching the pain on my husbands face as he watched me go through cycle after cycle of IVF has been my own type of hell.
My husband and I have always been completely honest with each other, but over the course of three years of IVF I have hidden from him almost every time I cried, almost every time I would lose control and have the proper ‘sup’ ‘sup’ crying break downs where you feel like you’ll never catch your breath again, I would hide away so he didn’t have to see me like that. He blamed himself so much already, I just didn’t want him to see how much this was affecting me.
I’m not the first person to say that IVF has changed me. I feel like I am now a much more empathetic person now than I once was. I’m ashamed to say that before all this happened I was one of those people offering advice to friends going through infertility because I just didn’t know any better. That’s why I try not to get offended when people give advice, because I know they mean well.
My husband and I have ALWAYS known that making babies was not going to be an easy road for us. There was just never enough ‘stuff’ coming out. I knew it, he knew it, we would occasionally talk about it but mostly we just ignored it until we bought a house and actually wanted to start trying properly.
We only tried properly for maybe three months before I told him we needed to go to the doctors. I knew that trying naturally was just wasting our time. Sometimes there was no ‘stuff’ that would even come out. I was 34 I could feel my clock ticking. For all my husband’s wonderful qualities one of the downsides is that he is not always completely truthful when he goes to see a doctor. I have taken him to the emergency room enough to know this. It’s not that he lies, he just leaves out a lot of vital information. So we made two doctors appointments one after the other. I was due for a Pap smear so hubby really didn’t need to be in there for that. I told our GP exactly what was going down in the bedroom with the lack of ‘stuff’. Hubby then went in for his appointment. He was a bit upset with me for telling the doctor before his appointment, but he was holding the papers that meant he would have to go off and get his ‘stuff’ tested, so him being upset didn’t bother me.
The results came back and they were not good. Extremely low in everything especially overall quantity which meant that the 1% that were viable was much less than a 1% in someone who has a normal amount of ‘stuff’. Hope that makes sense.
At this stage we were not disheartened about anything. The GP wrote us a referral to a local IVF clinic and specialist. I was excited by the location. I’d be able to get there and not miss out on work with appointments as it was really close, only about a 15 minute drive from our house. The GP told us that he knew this specialist had success with someone who had worse ‘stuff’ than my husband so all in all we were feeling confident.
This part here, this is the part I wish I could go back to. I wish I could go back to this moment and tell myself to do more research. Find out more about the clinic I was about to go to. Read some reviews about the specialist I was about to see. But I can’t. We just went with the suggestion from our GP because why should we question a medical professional.
So our first appointment with the specialist was not what we expected. Given that we were there for MFI my husband and I were both shocked when the specialist made it all about me. We were here because of a referral about my husband not me. Why was this appointment all about my vagina and not my husband’s penis? I was very quickly introduced to Wanda. The specialist pointed out that I was about to ovulate and everything looked good. He sent my hubby off for another sperm analysis test and in less than ten minutes the appointment was over and we were told to ring the clinic to start all the paper work. He told us that the clinic would help us with anything else we needed to know.
Then we had an appointment at the clinic and found out about the ridiculous law in the state of Victoria that means if you want to proceed with IVF you and your partner need to get a police check. So even as a teacher who must have an up-to-date working with children’s check, myself and hubby needed to get a whole new police check and make sure that IVF was selected otherwise it would not be valid and things would take even longer. (Three years later this still makes me so angry - there are teenagers and women falling pregnant addicted to illegal substances that can have a baby without needing a police check to procreate!)
So between all the legal stuff, information sessions at the clinic and counselling sessions, and saving money it was almost 5 months before we could actually start.
Looking back, the thing that annoys me the most about these counselling sessions is the stuff that they left out. There was SO much talk about decisions we needed to consider about what we would do with left over embryos; would we donate left over embryos to another infertile couple, would we donate them to science, or would we dispose of them. We quickly decided that it would be a lovely gift for another couple. Where was the preparation for embryos not working?
To say I was excited about starting IVF / ICSI was an understatement. The timing was amazing for us as well. My egg collection was going to fall on the school holidays so no one at work work even have to know anything.
Looking back, after going to a much better clinic and specialist I know that this idiot specialist should not have left my first scan until day 9. I went in for my first scan, hubby couldn’t make it so my mum went in with me. Hubby and I had spoken the night before about how ten follicles would be great. More would be even better. But the specialist went quiet. 4 follicles and the round was cancelled. I bawled my eyes out with my mum in the car park. There was not much of an explanation as to why that happened, but the clinic rang and scheduled my next round that would have a much higher dosage of stims.
I have since been through much worse, but I have to say I have never been more broken than that cancelled round. I went into that round of IVF full of confidence that my body would do everything it was supposed to because we were here because of MFI so why would my body do anything other than what it was supposed to. That cancelled round completely broke my spirit.
So my next round started and I had to have time off work for my egg collection. I always made sure that I got back to work as soon as I could with appointments and I busted myself stupid. As this was really my second round I was able to identify that orgalutran was a drug that really didn’t agree with me. I was on such a high dose of stims as well as that arse of an antagonist that I found it so hard to stay awake while I was teaching, it was a nightmare.
Well we got nine eggs and we were so excited. We could have nine embryos and then have all our children from this round. We could tease our future children about how they were conceived at the same time but born years apart. That night after egg collection we were both so happy.
The call the next day said only two had fertilised. My progesterone levels would mean no fresh transfer. Only one embryo was able to be frozen on day 6.
A month later when getting ready for my first embryo transfer I was called by the embryologist the night before my transfer to say that the embryo failed on thaw. At that time I didn’t know how long it takes to thaw so how and why she knew it had failed the night before it should have been thawed out I don’t know? I didn’t know it was something I should be questioning until I went to a new clinic. So my second round resulted in nothing being transferred. I should have taken a day off work - I was so broken going into work on the day I should have had a transfer, I just sat in my office and cried and cried. There was a lot of parents in that day for an orientation day that was happening. There was a Mum with breast cancer who came and sat in my office for a rest that day. We cried together for different reasons.
My first Christmas that I didn’t enjoy came and went. It was awful pretending to be happy. That was my first day of complete and utter exhaustion from putting on a show. January came around and Mum and Dad offered to pay for another round of IVF for us. It was school holidays, I wasn’t at work so it was a perfect time to do it. I was on a ridiculously high dose of stims. Even the pharmacy rang me to say that they needed me to sign off on it being higher than the recommended dose.
That round of stims was my absolute worst round. I was so tired I couldn’t even get out of bed during the day. I cancelled plans with friends because I just couldn’t do anything other than sleep, drink water and go to the loo. I lost my appetite and I was too tired to even cry.
We went in for a scan that showed 12 follicles growing. We asked the doctor what he would do differently in another round if there was no embryos again. He said that he would just do more of the same until it worked. We were NOT happy with this response.
When I went in for my second egg retrieval the people at the hospital just seemed to be assholes that day. As I was lying in the bed waiting to go into theatre the embryologist that had called me about the failed thaw came and spoke to me. She said she was sorry that the embryo failed like that. And that only ever happens 5% of the time. That sent me into a downward spiral and I started proper sobbing. She said sorry and then left to go. Leaving me there on my own while I just had tears streaming down my face. I was then wheeled into theatre still sobbing loudly, I couldn’t stop the tears. I lay in that theatre room with everyone prepping and not one person came to tell me that it would be alright. A needle was stuck in my hand and the next thing I new I was waking up in recovery with a student nurse who knew nothing about IVF and was prattling on with all the cliches we wish people wouldn’t say to us. She then left and I was left in recovery for two hours without my phone. They had forgotten about me. I had to call out to someone to ask what was going on. I know it was two hours because the only thing I could see was a clock. My husband had been stressing in the waiting area about why I was taking so long. No one had spoken to him either.
There was no one who could tell us how many eggs had been collected either. We went home completely disheartened.
Turns out we only had one embryo that made it from 14 eggs that round. By now we were both broken. IVF had broken us. I went in for a fresh transfer on day 6. It was a Sunday. It was my first transfer so I had no idea what to expect. I had a full bladder and the doctor was running over an hour late. We didn’t know this because there was no receptionist there on a Sunday. I was in so much pain - I didn’t know that I could have gone to let some out.
We finally went in for the transfer and it was so traumatic. There was only the doctor and the embryologist there. He made me hold the ultrasound on my belly because there was no nurse to do it. He kept telling me off because I wasn’t holding it in the right place it took him forever to get it in because I wasn’t holding the ultrasound where he needed it to be to see what he was doing. People had told me that a transfer was like a Pap smear, but this transfer was NOTHING like a Pap smear. I was in so much pain. (Side note for people who have never been through a transfer - this is NOT what an embryo transfer is normally like. Every other transfer I have since at my new clinic has been much more like a Pap smear, just with a fuller bladder)
When it was finally done and over with and I rushed to the toilet as fast as I could before there was an accident. 5 days later I got my period. It was a Friday. I had to leave work. I was in tears. I rang the clinic, they sent me for a blood test. The next day a nurse from the clinic rang. I was hurt, and angry and rather than console me, she got defensive, she didn’t yell at me but she did nothing to sympathise. She actually asked me when I would be ready to do another round to give them a call.
The next 6 months were the HARDEST for me. I knew I didn’t want to go back to that doctor and clinic. But I didn’t know where I wanted to go either. I didn’t want to be treated the same again. By this stage we had 3 rounds of stims, two egg retrievals 23 eggs collected, one embryo and one horrific transfer. Where had the counselling been to prepare us for no embryos?
This was also around the time that my blog was shared with people who didn’t understand it. I had a break down. I took a week stress leave from work and went to the beach with my husband. My husband had to work on one of the days so my dad came and stayed with me. I think my family thought I was suicidal. I never was. But I was very low.
The beach actually did me the world of good. I started to feel a little more like myself again. I went to work. I did what I had to do and I came home. That’s about the time I started drawing on my iPad. I didn’t want to write anymore because my words had not been read the right way. I drew a black cloud over my face and I drew a wall around me. I shared them on twitter, but twitter had been ruined for me. So I took them off. Then I decided to have a look for IVF stuff on Instagram. I found fertility illustrated and a few others and I found that Instagram was just a kinder space for me to be. I shared my pictures with a private account. I found a few people that were so lovely to talk to and it did me the world of good. I learnt more from other people’s experiences on Instagram than I had from my first specialist and clinic.
Hubby and I decided to book a 5 week trip to the US over Christmas. Not going to lie, my main reason for doing this was so I wouldn’t have to look at my family’s sympathetic faces on Christmas Day. My family loves me so much and they want this so much for us, that I just couldn’t cope with the extra long hugs they were giving me, while whispering in my ear that they were praying for me.
Then one day out of the blue I had my Aunty call me. She knew I had been doing IVF. I didn’t keep it a secret, but I didn’t really talk about it either. Her daughter - my cousin had been born through IVF 16 years earlier and she loved her specialist who still works at Melbourne IVF. My Aunty didn’t want to feel like she was prying but she just wanted to give me his contact details if I wanted to try someone new.
After a couple of weeks I decided to call him. Made an appointment - got in much quicker than we did with the other specialist. The difference was amazing. This fertility specialist actually spoke to us. He welcomed us warmly, got to know us as people. Remembered different things, when we went overseas he remembered and asked us about how it went. Basically this new doctor gave us hope. When we asked him how things might be done differently he explained all the different things that we could try, he spoke about down regulation being better for someone my age so it was a good option.
After the horrific last stim cycle I went through at the previous clinic I couldn’t believe how normal I felt on the medication this new specialist gave me. Sure I had some cramps and headaches here and there, but I wasn’t falling asleep all the time, I could still live my life.
The down reg cycle, while it was much longer was the most successful. We got 20 eggs. But the doctor when he rang me was clearly disappointed that only three embryos were able to be made from those 20 eggs. He wasn’t able to say if it was the eggs or the sperm that was the cause of the embryos not working. I had recently turned 36 at this stage and with our new specialist actually talking to us he did say that my eggs might not be as good as they once were. I had a fresh transfer. But I wasn’t expecting much. I had peed on a stick and it was negative and I had already started spotting, by the time beta came around. So I was very surprised when I had a beta reading of 80. Two days later a second beta reading came out at 340. So I was definitely pregnant. But the next day a heavy flow with big clots started. It was painful. We went to emergency they couldn’t do another beta because they have to be done 48 hours apart. The next beta had gone up to 450, but it had not doubled. The blood flow stopped for a day just to mess with my head even more. But then it started up again in full. It took a month of blood tests until my beta reading went back down to zero. I used to think that miscarriage and chemical pregnancies are something that happened quickly, once it’s out it’s over. How wrong I was.
We had a natural frozen transfer two months later but it was a BFN. Then we went to America. We had a great 5 weeks. Family back home kept commenting on our pictures saying how happy I looked. I didn’t want to tell them that I went to bed every night knowing that I would give this whole trip up for a baby. The trip was amazing, but I wasn’t as happy as I normally am when I travel. My husband loved every second. So it was completely worth it.
We came home and basically jumped straight into another round of IVF paid for by my folks. Yes we did have one embryo still in the freezer, but it wasn’t great quality and even the doctor thought another stim cycle would be a good idea. By this stage I went into this round with not a huge amount of hope. I had hoped that my husband would have cared a bit more about his weight gain and cut back on drinking but he hadn’t. He kept making excuses about his drinking. There was always a reason or an occasion. I just got to the stage where I felt like I had given up so much and he, in my opinion just wasn’t doing enough. This round of IVF felt like I was just going through the motions. I had promised my husband one more round of IVF with his sperm before we started to seriously discuss using a sperm donor. This was the first round that I started getting really angry with my husband. Most of it was internal anger, I kept it in because at the end of the day this was probably his way of dealing with the whole situation. In the past my anger was aimed towards the unfairness of not having a baby, and that horrible first clinic... in this round my anger was directed at my husband.
8 eggs were collected, 2 embryos were created. The fresh transfer resulted in a BFN and the next month we put in our two remaining embryos. That last transfer was devastating for us. It was basically like putting all our eggs in the one basket. It hit my hubby hard. Because we had agreed that this would be the last time we tried with embryos that were genetically ours.
So by this stage I had 51 eggs collected over two and a bit years from 4 egg retrievals. 6 of those eggs had become embryos suitable for transfer. I had 5 transfers. One of those resulted in a chemical pregnancy. The rest resulted in nothing. I was spent. We both needed a break, especially to try and get our heads around using a donor.