Our project exploring the topic of fertility began in May 2022 when we started speaking to families and individuals who have a wide variety of different experiences of fertility. The primary aim of the piece of work was to raise awareness of different fertility experiences ranging from IVF to surrogacy and including baby loss – giving a voice to topics and issues which are not always made so visible. The project explores 13 people’s stories through interview-based study investigating themes of stigma, mental health, self-perception and support and advice. The work also encompassed identifying what is working well and what could be improved within services across Essex throughout the fertility journey. This is Suzy’s Story.
Alan and I got married and then, about a year later, we decided we’d start trying for a baby. With a family history of endometriosis I thought a fertility issue might be on my side of the family. I was unaware that I did actually have this condition. My aunty and cousin also had endometriosis so genetics may have played a part with me having it too. At that time I was overweight so lost six stone hoping it would help.
I tried everything suggested, like ovulation kits and herbal remedies, but nothing helped. After three years of trying to fall pregnant we went to the doctors where we were both sent for tests. Alan, my husband, had a strangulated testicle as a teenager which had to be removed. He was advised that the other testicle was absolutely fine and he should have no problems having children. Further tests showed that he had a condition called azoospermia, which is an absence of viable sperm, as a result of damage incurred during surgery. Clinicians were quick to decide that the fertility problem was on Alan’s side, despite being aware of my family history. Further tests at a specialist clinic in London showed that he was perfectly healthy and could father children, but it was the tubes that had been damaged and, in order for the sperm to come out, it would have to be IVF or in our case ICSI (intracytoplasmic sperm injection). As we’d met the criteria, ie. didn’t have any children, and I was in the body weight and BMI range, our treatment started at Bourn Hall Fertility Clinic. At no point was I tested for anything else because we’d been given the IVF due to it being a male infertility issue. Then you go through the process and have the two-week wait. I needed to take some time off work, which was difficult being a schoolteacher, and none of my colleagues other than the headteacher, knew. It was a really private thing. I didn’t want people asking questions. Only close family also knew. Then, as my pregnancy test showed negative, I had the aftermath of a heavy period to follow, along with dealing with the difficult emotions of your precious embryos being flushed down the toilet.
Nothing prepares you, not only for the physical side of the treatment as your body goes through such dramatic changes, but the mental side of it also. I felt like a hormonal wife and Alan struggled psychologically, thinking it was his problem and his fault. It put pressure on our relationship. He felt I should leave and find a partner who could father children.
We went through six rounds and then the NHS funding ran out, so we attended a fertility festival in London. All the fertility clinics were there. We came across a clinic called CRGH (Centre for Reproductive and Genetic Health) in King’s Cross, London, and were very impressed with first impressions, albeit knowing we’d have to self-fund the treatment. Following on from me reading an article about a lot of failed IVFs, which were the result of problematic natural killer cells which recognise anything put in the body as a foreign object, I undertook the £700 test which confirmed that, yes, my natural killer cells readings were sky high. I was given lipid infusions to lower my immune system to a normal level so that when the embryos were put back in, my body wasn’t going to reject them. The total cost of treatment was approximately £25,000, so that was our savings depleted. Unfortunately we had yet another unsuccessful round and, with no money, adoption was considered. The clinic phoned us and suggested the donor eggs or donor sperm route, the latter being the much quicker option. There’s an 8% success rate to the donor route and we had to agree to counselling first to ensure we were psychologically ready for it.
We were very fortunate that my mum paid for this treatment and, though it wasn’t physically invasive, emotionally I was still coming to terms with my losses which I’d never had a chance to mourn. Though not biologically his, Alan was very black and white with it all, saying all the way through, ”This is what we’re doing, it’s fine, I’m fine. This is great. I’ve gone from thinking I’m not going to be a Dad to believing I might be a Dad”. In choosing a donor, we didn’t realise that who we’d registered with used an American donor bank. The great benefit being that, with differing rules, we had access to so much information, everything apart from his name and his address. We were successful and pregnant! You’ve got the dream you waited for, but on top of that then you’re frightened; you’re petrified because you’ve got everything and you’re expecting it to go wrong, so you don’t really want to tell anybody. You want to keep it just to you because of having gone through so many years of protecting myself. When it goes wrong, I learnt very quickly, that’s why I didn’t tell people because if you don’t tell people, you don’t have to tell everybody. I’d lose the babies one day and the next day I’d have to go back to work and just carry on and go back to being Suzy again and so lived the life of two people – Suzy that was having IVF and then just normal Suzy.
We’d got our little miracle and then you have to wait for the scans. They do an early (six-week) scan and that’s a really excruciating wait. Then the wait for the 12-week scan. At the 20-week scan we were advised that our baby had a problem with his heart – the Royal Brompton confirming this. I went into labour at 25 weeks and our baby was born prematurely.
Josh is a miracle in every single way and we laugh when we say, ”He’s totally like the donor boy”. He was conceived through a donor, had donor tissue to fix his heart, donor blood and donor milk because I couldn’t produce. Josh is such a gorgeous boy, a gorgeous character who’s turned into the loveliest little boy. We’re just incredibly proud after everything we’ve been through.
During the entire seven year period of IVF we were never supported right the way through and never signposted to any support networks including social media, At the time Facebook was reasonably newish so I never received support from others on a very similar journey, which would have been really helpful for me. In recent times, and so as to provide support for others, I’ve joined the IVF ICSI Fertility UK group, which has quite a lot of members and it’s a really active group. My experience is that it’s much more useful talking to someone with lived experience as opposed to a professional who is reading from a manual. I didn’t want that. That wasn’t helpful. It’s such a personal thing. Nobody understood. My mum supported me, Alan was supportive, everybody was supportive but nobody understood. Nobody got it. I was on my own. I don’t want other people feeling that same way so am happy to offer my support to let them know that I too have walked that corridor in a fertility clinic. To be able to say, ”You know what, I’m here to talk. I get it. I understand”. I think it’s got so much power. Reaching out to others is the advice I’d give someone who’s at the start of this journey.