Stopping IVF treatment – knowing when enough is enough

I’m going to keep this fairly brief. My journey started nearly 10 years ago, and I started trying to conceive in my mid-20s, and soon after, about a year we recognized that there were some issues, so we had some general fertility procedures and tests done, which revealed that everything seemed quite normal, and there was nothing that came up that was raising any issues, so from the very beginning I was classified as unexplained infertility, I know for many people where your fertility is due to unexplained infertility, that can be quite challenging. In some ways, it can be really nice to have something that you can actually work with and fix, and for me, that wasn’t something that I had. I was quickly under the NHS popped onto Clomid which increases ovulation so had 6 rounds of Clomid under the NHS, the first 5 cycles were unsuccessful of that, and on the 6th cycle I did become pregnant but sadly miscarried at 11 weeks, so obviously that was really difficult to deal with. But trying to think about the positives, I’d become pregnant, so I was just literally trying to hold on to any bit of hope, there was out there. After that, it was unsuccessful, and at the time, it was just recommended that we had six cycles, so we were then progressing onto IUI, which is the artificial insemination. We had 3 rounds of the IUI which again were all unsuccessful, so we were due to start the IVF. We should have been entitled to 1 round on the NHS, but when we were about to start it, our CCG (Clinical Commissioning Group) had run out of funding. We decided to pay privately because up to that point, it had been about 3 years under the NHS. You can be in the system quite a while before you start to get moving, especially when you’re at the younger age and I was under 30, and they just thought it was just going to happen, so we decided to go privately, and I had my first cycle of IVF which was very scary. When you’re new to it, the first cycle is very stressful, and I think the fact that we’d already been in the system for quite a few years, and it had already started to impact my mental health, the whole emotional impact of the treatment was quite significant and the whole fertility journey. I had my first IVF cycle, and that was unsuccessful, so at that point, I just felt that there was something that wasn’t quite right. All my tests had previously said unexplained infertility. We then went on to have some genetic testing and immune testing, which did show that I had slightly elevated natural killer cells, which gave me again a little bit more hope that we could change something for the second cycle. On the second cycle, we added steroids and immunosuppressants into the cycle, and I got a positive pregnancy test, which was amazing, everything was going really well. I had all the early pregnancy symptoms but then when I went for my 6-week viability scan, unfortunately, that proved the pregnancy wasn’t diable, and so that was the second miscarriage that I had during that time. From that cycle actually, we had 4 really good grade blastocysts which were frozen, so again as hard as it was and it was an awful time, I felt hopeful that there were the frozen embryos that we could put back, obviously the frozen embryo transfer is less invasive in terms of a procedure, so we went on to have the 2 frozen embryos put back with intralipids, which again was suppressing the immune system, but unfortunately that wasn’t successful. This happened over a number of years, and by the time I’d got to that transfer and it not been successful, I was just absolutely exhausted with it all and just needed a complete break from it. I don’t know where people are at who is listening in terms of where you’re at in your cycles or your journey, but for me having that break for a year was, I know some people don’t have time, but it really felt like it was the best thing to do. It had been nearly 8 years, and it started to take over my life completely, so it had just become a project baby and it was really tricky, so we had a year out just to kind of do some other things and try to not think about it. We decided that we’d have the last two frozen embryos back, but again because of the emotional impact of it I was reluctant to have those back knowing what I was going to be in for and the whole roller coaster of emotions that were going to come up, so on that last cycle, we didn’t tell anybody about the treatment, and on the previous ones we had, so you not only are dealing with your own disappointment but you’ve got everybody else disappointed which can be hard, so we didn’t tell anybody, I did it in the summer holidays because previously I was a teacher and sadly that was unsuccessful as well. It was 9 years on from trying, we’d just decided that emotionally, physically we were just done. People asked me how did you know when enough was enough, and inside you just know, we’d given ourselves a limit, we’d spent nearly twenty thousand pounds on treatment and it just seemed that it was just holding us back from moving forward. As difficult as that really was and making that decision and we’ll talk about the challenges and things like that, it was a relief in some ways to let it go, but once we decided that that was it, I thought logically, we could just get on with our lives, but obviously, the reality of it was quite difficult. That’s my journey in terms of kind of what we went through.

We listened to the consultant at the time, and because of my age and things like that, he said if it’s going to work, we would recommend 3 cycles of treatment. We didn’t expect to get the frozen embryos, so for us the 2 fresh cycles and the 2 frozen cycles and in addition to everything else that we’ve been through felt like we’d done enough. I think it was more the emotional side, I just thought I cannot put myself or my husband or family, friends, through this because with that I suffered quite a lot with the anxiety and depression which impacted being at work, general mood, not sleeping, and all the symptoms that come along with that. For me, it was a case of we’d listened logically to what the consultant had said, we’d tried, and I think it was that gut reaction, I just knew, and the people that I speak to and they’ll say how do you know, and I just say, you just know, and when people have come back to me, and they said we’re there. It’s really difficult because like I said at the beginning, you don’t go into treatment expecting to come out well I didn’t because of all the miracle babies stories that you hear on the media without a child so and a baby, so it’s really hard to let go of that dream, and for me, it wasn’t just letting go of a dream, but it was kind of life that I thought I was going to have as being a mum and there was a lot of sadness around. Financially, we’d spent a lot of money, emotionally we’d been through it and it was just a case of thinking, there’s got to be more than this because it was really difficult.

So there were several challenges, and the first one was me thinking what now, what do I do after I spent all this time and it had become my identity, and we’ll talk about support and things. I wasn’t able to almost say who I was without saying I’m Kelly de Silva and I can’t have children, it’d become everything and this project baby. It was really difficult to think and imagine what life could possibly be like. Deciding enough was enough and some people would say to me, so you’ve given up then and I would say no, I’ve not given up, and that’s why I chose the title of the presentation today because I don’t feel like I gave up. I decided that there was only so much that I could actually deal with, so for me, it was thinking okay logically, we’ve decided that’s it. I remember just after that failed cycle, my husband had to go away, and I had 3 or 4 days at home on my own, and it was just what I needed. I really felt like I wallowed in those 4 days, and looking back now and speaking to the counsellors it was definitely grieving, and it pushed me to a dark place actually and like say logically, we thought well we could just get on with our lives now, but the reality of it was quite different because, for the nearly last 10 years, everything had been about having a family. It took a little while to kind of adjust and to process that loss. It’s a loss of a life I thought I was going to have, so it all that grief that’s wrapped up in it and I felt incredibly sad like there was just a big cloud of sadness above me. It must have been draining on my friends and family because I was quite open about the situation, but because I didn’t know anybody else going through it, I just felt like I was completely alone and isolated with it. That was really challenging as well, feeling like I was the only person in my group of friends that it wasn’t working for and so those were the main challenges. It was initially, how am I going to get through these next days? It was how am I going to get through this next day, and then it was literally one step by step.

Initially, I would say I had a good relationship with the counsellor at my clinic so that super helpful and the clinic did offer treatment as part of our IVF process, so I was able to continue with that. For me, when I came out to the counselling, I don’t know if it’s the same for other people, I felt like I was on my own again, so I think it was looking around to say okay, well there’s only so much the clinic can do once you’ve decided that enough’s enough. I was trying to look to see where else I could get support from, so I kind of did a load of searching on the Internet, all the groups I’d been online. In the forum had ended up with me being the only one that didn’t have a baby, even those people that had cycle at the same times and so I felt like I was the only one that it never worked for. Which I think is relatable to some people as well, who are struggling with infertility and failed IVF cycles, and so it was really important for me to find other people so I didn’t feel alone and I would say that was kind of one of the biggest things that I did and to help my own sanity and mental health. I managed to find that there’s more to life which is part of fertility Network and that was great, but I found that a lot of the ladies on there who were involuntarily childless were actually older ladies, not my age who were younger and becoming to an earlier stage, so that was when I decided to set up the dovecote childless support organization and started out just with a few people, just putting my own story out there on Facebook and my social media channel, just saying look I’ve set up this organization and Facebook group for people who have reached the end of their journey and aren’t considering any kind of other parenting options. That was that big thing that I found which was that once she said, okay, we’re not having children, why don’t you just adept and I wanted to create a safe space for people who would come to the end of their journey and didn’t want that as a trigger, you just don’t want to be asked that, and it isn’t right for everybody, and at a time it is something that we weren’t considering. It was kind of finding that tribe, that sanctuary of people who really understood and were in the same position but also for me I found something that was useful with something called the emotional freedom technique or tapping, I’ve had various therapies through my infertility journey and tapping is where it’s a bit like acupuncture without the needles, so you’re tapping on different parts of the face and the hand and it just Shift a lot of the energy around the sadness and for me, that was something that when I went to see the practitioner and somebody recommended it for me, I’d said earlier that I couldn’t say who I was without saying, I can’t have children, and it was that sense of identity and sadness that I was describing, I was able to shift because it really felt prickly for a while until I actually had the EFT (emotional freedom technique) or tapping so I became a practitioner in it, I can now support other people wwho might find it useful and it generally just makes you feel a lot more relaxed, it Shift a lot of the negative energy around it. I wasn’t able to talk about my journey without getting upset about it once I’d gone through the emotional freedom technique and tapping, I could, it was almost like it was gone, it feels quite magical, but the EFT definitely helped.

When I came to the end of the IVF, I just didn’t see how I could live without children and let alone having a happy and fulfilling life, just didn’t feel like there was any future if I couldn’t have children. That’s genuine, and as I talked about the emotions that I’ve dealt with, it was quite a dark place, but I think over time, and I wanted a magic fix for this, I remember googling how long am I going to be feeling like this and dealing with involuntary childlessness and I just couldn’t find the answers. It was a case of having to process that grief. I think first of all realizing that I wasn’t going mad. The counsellor helped me realize that I felt incredibly guilty that I didn’t give my husband children, there are loads of emotions that go through with that. Actually over time, and it was literally like I said before some days it was going through the first hour, then it was like getting to the end of the day and gradually over time and getting the support that I needed, having that community around me really helped me to feel like I had a different purpose in life and I think that’s what we’re all looking for. I didn’t know who I was if I couldn’t have children, I think it’s definitely possible, I’m not saying it is easy, it’s something that we learn to live with, and there will be moments where you’ll have those waves of grief, and those triggers and what I found is when those waves have come initially, they would have got me down for a good few days a week like pregnancy announcements but actually over time and learning the different strategies that I’ve been using to deal with, I found that actually when those waves come now, it’s easy to pick myself up back up from them and some things I think we detach from. I would say, and one of the biggest advice would be learning to say no, knowing your own boundaries and what you are and are prepared to go to, depending on where you are in your journey. I’ve had to protect myself over these years and finding the dovecote and all the work that I do support people on there as well as now the work that I do with care fertility, I’m the patient support coordinator and I’ve developed a number of different ways in which we can support patients still going through IVF and for me, it feels like in all of this, something positive has come out of it because I don’t want people to go through treatments, whether it works or not and feel that they’re on their own, there doesn’t always have to be a silver lining but I felt like I needed a bit of a silver lining in all of this and so the question can you have a happy and fulfilling life without children, I think it is 100% possible but I think we go from it being project baby to start to open up to the different aspects of our lives, the things that we used to do that we stopped doing because we were trying for a family, like holidays, the fact that you perhaps not moving house because of treatment, moving jobs all those things and just setting yourself to having little things to look forward to I found really useful and one of the big things that we did is a 17-day trip, we did a little bit of a tour of Thailand which was something that I always wanted to do and was always on hold because of treatment, so IVF definitely dulled my sparkle over time. I would definitely say that it took time to get to a place where you’re enjoying life again and it’s not that it’s always going to be bright and shiny. We look at what we’re going through at the moment with all the COVID-19, and it can be difficult, it can be really difficult, but I think knowing that you’re not alone in this and knowing that there is a light at the end of the tunnel,  it was what I needed, just to think that I could get through it.

I didn’t consider donor eggs because when I finished treatment I was in my early 30s and all the advice that I’d been given from the consultants was that my egg quality and number 9f eggs seemed to be absolutely fine. It didn’t seem to be an egg issue. I did have offers from my sister to be a surrogate, but at the time I felt that I wanted the whole experience myself. I don’t know if that sounds selfish or not, but I just kind of wanted that whole motherhood experience and one of the things I didn’t say actually during those 10 years is that I’m the eldest of four siblings. I’ve now got 14 nieces and nephews, so that was tough having to deal with my journey as well as kind of my siblings who were having children easily, and often not planned. It was difficult, but I didn’t consider it because it was never something that was put forward or considered. I’ve got immune issues and autoimmune disease that I felt that that was the problem, not the egg issue.

I’ve done a lot of research myself, in terms of the immune because like I said I know that I’ve got autoimmune issues, so it felt to me that my eggs were okay, my lining was okay. I was told I had a beautiful womb, and I tried the immune therapy as well with the intralipids. I just felt like if it was meant to happen, it would have happened. I know there are people that kind of have several cycles like 17, 18, 20 cycles and I think it just depends on how you are as a person and I felt emotionally battered by the stage that I did do with the miscarriages and the failed cycles that we’d already spent obviously a huge amount on, and thinking that we’d have to then go and get more, I just decided that everything that I could try myself in terms of all the alternative therapies, I tried, and I felt like with the immune therapy that was kind of the extra bit that I’d done obviously since I’d finished treatment. There are still new things that if I went back and had treatment, I could try and people often say to me are you not tempted to go back and have a treatment and I just say no because I think some people find the process, okay but I found the whole thing quite traumatic and we decided that we’d come to the limits.

It’s really difficult because I think that typically, I’m generalizing here that men don’t tend to share um as much as women do, and some of the work I’m now doing with care and the emotional support is making sure that men are seen as an equal in this process. At the time, I felt very much that I was the one going through it. I was the one doing IVF because I’ve seen most of it’s happening to you so in that my husband was a huge support and it’s really difficult for both of you in this situation where you’re both trying to work towards something, and it was the first thing that we tried to kind of achieve and work hard for, and it had not happened. It was difficult because I remember him saying I can give you anything in the world except the one thing that you want and obviously that’s heartbreaking, and there’s nothing that either of you can do to make it happen. If it’s not happening, it’s really difficult so it has an impact because, at the end of the day, it’s something that should be a personal experience and becomes a kind of a bit of a process to go through. It’s just different, but I would say that talking is really important and talking it through, having those open conversations if you can go to counselling together, and you’ve got a good relationship with the counsellor, do that. There’s this book called women who like spaghetti and men are like waffles with their little boxes, that’s how it felt for me but like the IVF process was, I just felt like a big bowl of spaghetti that everything was connected and I’d see somebody who’s pregnant and that triggers something else, and you just feel sad whereas men they have or from my experience in talking to the patients, men tend to have little boxes, for my husband if he was in his workbox, the infertility box wasn’t open. I would be thinking about it all the time, it would be really difficult, and for him, it was more of a logical process, and it’s not always the same, not all men are the same, but that’s how I found it, so finding ways to open that box can be difficult because it’s painful but again it’s I think he allowed me time to process my grief and his grief will probably come as it comes after and kind of just protecting me.

I think over time my responses to the insensitive comments and advice has varied depending on where I’ve been during the journey emotionally and who it is that I’m talking to. I found it useful to have a bank of responses, so people wouldn’t ask such insensitive questions about any other topic, but it feels like everybody knows somebody who it’s worked for or they’ve got a magical cure or whatever. I’ve learned over time that what works for me is, to be honest with people and quite often it makes them feel very uncomfortable when you put it back on them but actually it’s kind of like a learning experience. There’s so much education that needs to be done out there and with the general population and public. Asking these insensitive questions but for me, it was the case of when we first got married, and we were trying, it was like no, not yet and then when it started to have an impact on infertility, I used to find that really difficult, so you’d kind of deflect it onto something else. But as time went on and now when people ask f.e. because I’ve been open about it a lot of people don’t ask me anymore because they already know about my situation, but people say if you’ve got children when they’re looking to connect and find rapport and I just say no, unfortunately not, and I think they know, unfortunately, not lets them know that it’s not a choice. If you say no, it’s why people ask those following questions, so it’s about thinking what’s right for you. The adoption question is a really interesting one, it’s definitely something that you both need to be on the same page about which is why it’s not something that I’ve looked into more. Anybody going through infertility has been through a hell of a lot, to then just have the question why don’t you just adept there is no just about it, and it’s another difficult process to go through and whilst ever you’re still processing that infertility which is something that will live with you whether you have a child or not. It’s something that you’ve been through, and you will always remember, it becomes part of who you are and so like say having those questions, I have written some articles on that, actually with some different responses that you can use so if anybody wants to link to those, I can fish those out and send those to people. People just think it’s okay to ask them and it’s just not. Hopefully, there started to be a little bit more of a shift, but I think it’s difficult, especially with kind of well-intending parents or family members or aunties or grandparents that you might not see that often. They say you’ve not got children yet, you better get a move on, times ticking, all those sorts of things Just thinking about your own situation, how comfortable you feel in sharing that and for some people, they don’t want to share any of it, I know people have not told a soul, and it’s deeply personal, and you have every right not to answer those questions.

I would say the trip around Thailand was something that I’ve been wanting to do for such a long time, and it was probably the only or the first time actually in those 10 years, at the end of it that I was at the edge of this beautiful infinity pool overlooking the ocean with this gorgeous kind of landscapes and rocks and things and actually I felt at peace. During the time of the fertility journey, I would say I didn’t feel at peace. I felt just all over the place and so for me when we were having that experience because it was about us and sharing those experiences. I didn’t feel sad about it, and we’ve gone on to do lots of lovely things that we would never have had the opportunity to do if we’d had children as well, so there are things that you have the chance to do because you don’t have children, but equally, there are still times like Christmas when you can still feel tinged with sadness because it’s not how I imagined it would be. There are all those moments throughout or the key events throughout the year, mother’s day and father’s day, it’s more events I think I found sad, not being able to do Easter egg hunts but because I’ve got nieces and nephews, my life does feel very child full, not childless. I’ve had to, for my own sanity, I think to embrace and focus on what I do have in my life, and I think, that’s been the real positive to come out of this, actually, I’ve always been a proactive and positive person, this was a real challenging moment that kind of tested me as a person and for a moment it nearly won because it was difficult, but now I am able to be grateful for what I do have in my life rather than focusing on what I don’t, it took a long time to shift that mindset, but yes there is sadness, but I think it’s kind of where you put your focus on. For a time, you have to be sad and like I said for those 3-4 days I just wallowed and didn’t really do anything else other than stay in bed because nobody else was around, nobody needed me. I didn’t have to bother anybody, but I think it’s just allowing yourself to feel those feelings as well.

100%, yes. I did feel affected by hormones and medications. I am very sensitive to hormones. Anyway, so I would say a good 4 years I don’t feel like the medication that I’d been on for that number of years completely left my system, and in fact, after I had the steroids and the immune therapy, nobody told me about any side effects of the steroids and the immune suppressants. Actually for two years up until the last summer, I wasn’t able to have gluten and dairy because what the steroids had done was kind of affected all my gut bacteria and created allergies, so I had bad skin which I’d never suffered with before and obviously the mood, the emotional sides. The medication, it does have an impact, and it can be really difficult to deal with. Last summer we had some time, so we started cooking really healthy raw food and so looking at ginger and garlic and trying to help my gut health, so I managed to repair my gut and inside of my gut, so I can now have dairy and gluten because not only was I not able to have children but after the treatment, I wasn’t able to eat what I want and drink what I want, it was frustrating because I’d never had allergies. It definitely had an impact, but everybody’s different, I don’t know anybody else that’s reacted in that same way, but as I said, I am super sensitive to any changes in hormones.

I think that it is so true, again because I’ve done quite a lot of healing and processing of this. The story that I grew up with, there was that you got married, you had a baby, you went to school, you got a job, got married, you had a baby, had a family and had another one. When I talk about the grief of the loss of a life I thought I was going to have, the more I’ve unpicked that it is the social norm to have children a 100%, which is why when you don’t have children, you get the questions and if you just say no, people say would you not like them. I do think it is and I think the longer than you’re thinking about the decision to have children, it’s not like it should happen, I totally relate to that because I got to the point where I was struggling with the depression and anxiety and I read this book that was called ‘Just get on with it’ and it said what if you got the thing that you’ve always wanted and it still doesn’t make you happy. For me, that was a light bulb moment because for nearly 10 years I tried to achieve having a child and obviously had all the treatment, and I’ve gone through all the emotions thinking that that was going to make me happy when actually I could have had a child, and it might not have been exactly what I thought it was. I think I’ve had those questions and I think particularly in the world that we live in now, you just question whether or not, the worries that I’d have if I had my own children, right now with all the the the pandemic and everything going on, so I think that is a completely valid point, and it’s okay to come to the decision where you think I don’t have children and it’s okay.

The guilt and desire to make your son happy and that kind of links with what I said if you did have a sibling would that make him happy. I think you need to possibly be asking the questions about where you are with this, I mean having a child through IVF is a huge blessing, and I’m sure you’re super grateful for having him, and I know that parents that have one child do sometimes feel the guilt for not having another, but equally it’s about what you’re going to regret least if you have another child and you end up resenting that child because you’ve not had it for your own reasons but for your other son. I think it’s a lot to go through and the whole donor egg situation as well, it sounds like you’ve already got a child with your own eggs and it’s a different dimension. I think you need to ask the question whether or not it’s something that you want to do for you I don’t think it can be about your son and it’s tricky because I see people who are struggling with fertility, so they’re struggling for a second child and the grief, the loss and the emotional impact, they feel the same as when they didn’t have any children and the loss, is a loss they wanted a family, and so I think it’s going back to what you wanted and what you’d imagined and to put yourself through all that.

The NLP (Neuro-linguistic programming) really helped with kind of the limiting beliefs about myself, the NLP is a bit like reprogramming how we think about things, so it’s when I talked about some of the the tools and strategies that I’ve used to help me deal with my childlessness and coming to the end of the journey, these are some of the things that I use so f.e. one little thing, that I used very early on quite a lot, would be the anchoring technique and so whenever you had a thought about your treatment or the feeling then you would kind of just pinch your thumb and your finger there and you’d try and think about a positive experience so again it’s just trying, whenever you think about it, you’re anchoring it to something that’s got a happier memory, so for me, it was really useful when all my nieces and nephews were being born, I found that quite difficult, but the NLP helped me to temporarily to disassociate and protect myself, there’s lots of information out there about NLP and the different tools and the different techniques that kind of involve it and the different things that you could use. It was a case of the quite practical activities that you can try and do, to deal with some of that loss and process in the grief. One of the useful things for me was the circle of concern. We’ve always got two circles, there’s one in the middle circle of influence, all the things that we can do something about and in the bigger circle, we have all those things, and you can write them down, all the things that are worrying you that you have no control over. One of the things that really helped me over time is that if you focus on the things that you can control, rather than worrying about things you can’t control then that circle of influence tends to grow it’s wherever we’re putting our energy. If we put our energy into the things we can control, it has such a beneficial impact on our general well-being and energy, sleep. I would definitely recommend NLP, having a little look at that to see the other techniques that you can use to help.

I can relate to the fear of not being a mother, I wouldn’t say that I feared never being a grandmother, but I do think that as my nephews and nieces get older, and my siblings start to become grandparents, I will feel that might be another wave of grief and something that I need to process, I think there are different little milestones that other people will be reaching. There are so many different life events that you feel like you’ve missed out on already like the first day of school and the university and all those different things again that you imagine life to be like so green. Being a grandmother, at the moment I don’t have any friends that are grandparents, but I do know lots of grandparents and friends that are grandparents. They’re not kind of an immediate family but just to see how much they dote on their grandchildren so I’m sure there will be a moment when that will be difficult, and I’ll need time to process that. I think in all of this something that I’ve not really mentioned is the acceptance and letting go of your dream of not being a mother initially is really tough but by doing the grief work and processing that and looking at the different things you can do and gradually just starting to build your life back up again and you do find a level of acceptance, that’s I would say that’s where I’ve been able to be at with accepting that’s not part of my journey, and it doesn’t hurt in the same way, as it used to hurt. I wouldn’t say it doesn’t hurt anymore because there’ll always be moments and little triggers, but actually, that’s not part of my journey, and there are other things that I can do, but it’s difficult because it’s all about our purpose and if you’ve always imagined being a parent, then that’s difficult to let go of. I think the answer to the question is how do I feel about it, I feel like it will probably hit me a little later on, but again it’s finding a sense of peace and knowing that I’ve done everything at the time that I was prepared to do.