IVF treatment - the ultimate survivors guide
The Ultimate Survivors Guide to IVF by Jessica Hepburn is her story based experience which she shares to support you along your journey. To empower you and inspire in living your life bravely – despite the challenges all fertility treatments entail.
Jessica admits that becoming an IVF patient has changed her life. And it has been the hardest thing she had to go through. And also – one of the best things in her life. Jessica reminds that, although over 6 million babies were born as a result of IVF, the treatment does not always work for everyone. So it is important to prepare yourself for the biggest physical, financial and emotional journey of your life. Jessica’s aim is to provide everyone fighting with infertility with 5 top tips on how to survive the IVF process. Here they are.
Tip 1: Do Your Research
Prior to every IVF treatment, it is crucial to look for possible options and decide what’s right for you. It means deciding on a clinic (whether in your home country or abroad) and understanding how different countries approach IVF treatment. It’s also about getting a diagnosis of what treatment you need and why. This includes implications the treatment may have on your body and your future child. Jessica states an interesting point here: never forget about the children in a desperate pursuit to parenthood. That’s why you always should bear in mind your future children’s feelings, too.
For patients from the UK, Jessica mentors a few important resources that might be of great help while doing your own research. Firstly, it’s the HFEA website. HFEA is the UK regulator of fertility treatment. Their site is a useful background on fertility problems and treatment, including the so-called add-on treatments (from PGS to EmbryoGlue). You can also compare UK IVF clinics’s success rates and read other patients’ reviews. Jessica also recommends to visit large patients’ trade fairs, like Fertility Show in London, and listen to useful podcasts, like e.g. The Fertility Podcast by Natalie Silverman.
Jessica’s main advice is not to rush the research and spend a few good months doing it. One has to realise that IVF requires not only financial resources, but also a lot of life-changing decisions. In fact, the consequences of it will stay with a patient for the rest of their life – in whatever sense. That’s why devoting time to thinking through all the possible options is the best way to start the IVF journey.
Tip 2: Seek a Diagnosis
Basing on her own experience, Jessica urges everyone to do one’s best to get the diagnosis in order to pinpoint the cause of infertility. In other words: it is much easier to fix a problem if we know what the problem is. This allows you to have a treatment protocol that is tailor-made for you.
Jessica states clearly that IVF may not always be the solution for everyone. In the course of diagnosis, it may turn out that woman’s eggs are just too old and it’s worth thinking of donor eggs. When you are offered add-on treatments, always ask what makes them relevant in your diagnosis. Jessica highlights that IVF is still a new are of medicine as it has been around for around 40 years. Sometimes even top IVF professionals disagree about different issues and a lot hasn’t been proven yet. That’s why you have to become an expert in your own body. Do the research, get a diagnosis, trust your instincts and only then, make up your mind what you’re going to do.
Tip 3: Get some Emotional Support
Jessica found a perfect term for illustrating the emotional struggle with infertility. She called it ‘the pain of never’. It is a metaphor of losing something you’ve never had and feeling worse than everyone else . She admits that infertility is a brutal roller coaster and has a destroying effect on the relationships with family, friends and your partner. The worst part of infertility treatment is what’s going on in your head. And it refers to both men and women although these are the latter that undergo most of tests and treatments. So in this case it’s great to have supportive friends and family that you can confide in. Additionally, nowadays there’s a lot of emotional support out there: support groups, online forums as well as Instagram /Twitter/Facebook community. You can also think of individual or couple counselling and turn to e.g. Fertility Network UK or the British Infertility Counselling Association for the list of trained infertility counsellors. Complementary therapies such as acupuncture or reflexology can be also helpful in making you feel relaxed and less stressed.
Jessica strongly advises never to ignore the role of the emotional support in one’s own fertility journey. Whatever option you choose, remember that you need and deserve all the kindness and understanding that will help you get through one of the hardest stages of your life. It’s not only your body but also your mind that needs to be treated and cared for.
Tip 4: Focus on Project You
Jessica admits that focusing on infertility treatment is time-consuming and sometimes it’s difficult to think that there is something else in life worth caring for. However, she guarantees that after all of this is over, you will still want to do some other stuff in life. So why wait? According to Jessica, it’s a good idea to take control of things you can take control of. Unfortunately, conceiving and carrying a healthy baby to term is not something a intended parent can control. No scientist or doctor can guarantee us a baby in 100%.
Jessica makes a difficult confession here that after 11 rounds of IVF she hadn’t had that miracle baby she wanted. She admits that the biggest fear every IVF patient has to face is: what if it does not work for me in the end? The sense of failure and confusion may be overwhelming. That is the reason why it is good to have a plan B. It means some alternative scenario and another idea of how your life may look like without your desired baby.
Keeping that in mind, Jessica wrote a book ’21 miles’. It consists of interviews with 21 women who tried to answer the question: Does motherhood make you happy?’ . These conversations revealed fascinating and compelling truths. The book deals with the subject of life fulfilment and tells a story of dreams that do not often come true. Jessica admits there are two most important things she learned while working on the book. Firstly, there are different ways of becoming a mother and sometimes one just has to adjust the route to get there. Secondly, you can definitely have a fulfilling life without children. Jessica understood that whatever your misfortune is, you have to do your best to turn it into something good. For Jessica it means conquering two of the most famous endurance journeys in the world: swimming the English Channel and climbing Mount Everest (the iconic ‘from pond to peak’ challenge). She uses these challenges to raise awareness of the mental and physical struggles one has to face when trying to conceive through IVF. And most of all, she strongly believes that we are the creators of our own happy-endings.
Tip 5: Live Big and Bravely
All of the mentioned things have brought Jessica to her final tip. However your fertility story ends, you have to live your life to the fullest. This is how you become an ultimate survivor of IVF.
Questions and Answers from the event
I’ve been through 10.5 IVFs…… The half IVF means the donor accidentally injected the trigger injection.
For those people who are at the beginning of the IVF process: there is this stage called the stimulation. It’s either you stimulating your own ovaries or, if you’re working with a donor, it’s a donor stimulating her ovaries. When they’re ready to go, you give them another injection to release them. It sounds really tragically that your donor injected herself with the trigger injection at the wrong time. So those eggs were released when they weren’t ready for collection. It’s so hard.
I’ve had one round….. no embryos. Hoping for a second round next year.
This is one of the things I really want to communicate to people. I think there is a misconception and it’s nobody’s fault. Somehow it has evolved that IVF is a magic bullet and it will work the first time. But the truth is it often doesn’t work the first time. That doesn’t mean it won’t work for you. I ran the Fertility Fest with an amazing woman, Gabby Vautier, and we are at two sides of the fertility treatment. She had IVF twins after 4 rounds of treatment. But you often have to be on this roller coaster for a while. At the Fertility Show in London (Fertility Fest is a part of it), dr Taranissi, one of the most revered IVF doctors in the UK, said this very interesting thing: ‘If one round is unsuccessful, it is very important that something changes in the next round.’ And that’s why you really need to do your research to find the right clinic and the right clinician. If something hasn’t worked, you have to adjust something the next time. So I hope that with your round 2, your doctor will be thinking ‘Ok, you had no embryos in round 1. So what do we need to do? Do we need to change your drug doses, etc.?’ I wonder if you have got a diagnosis. You need to be asking these questions: Why no embryos? Why none of them fertilised? You really need to understand that. You need to do another round of treatment where something is different. There is no point in doing everything the same.
My doctor has changed and my new doctor is no support. But I am going to have IVF treatment anyway.
I alluded to this in my presentation. First of all, this is all new science. Doctors focus on trying to get your body pregnant. They don’t necessarily think of what you’re going through. And that can be really hard because you’re pumping yourself through hormones. It can just be hard because a lot of people before they get to an IVF clinic, have been on this journey for quite a long time. I do think things are changing. Clinics do realise that they have to support their patients better and focus on their mental health. But there’s still a long way to go. I think the key thing is that you feel you have a good relationship with your doctor and you’re getting good clinical care. If you feel that you really need emotional support – and I think everybody needs it – your clinic should be signposting you to things. And if they’re not, and you do not want to move clinics, then you have to go out and find this support for yourself. It will help you feel better about what you’re going through. It won’t necessarily change the outcome but it’s about making yourself more resilient to what is one of the hardest things you could ever go through.
And we women are all the guinea pigs…
That’s absolutely right in terms of being guinea pigs of this science. But also we are really disadvantaged as women because we are born with life-time supply of eggs. They are rapidly declining in their quality and quantity from puberty. So by the time you reach 45, you’ve only got like 10% of these eggs left. Whereas men produce hundred millions of sperm at every single ejaculate and they carry on producing sperm for the whole of their lives. Of course, men’s sperm quality goes down with age as well. But it’s like one egg a month for a woman and hundred million sperm in every ejaculate every single day. So not only are women the guinea pigs of the science but we are also severely disadvantaged in our fertility. And the science hasn’t found a full-proved answer to that yet. Even such opportunities and aspects of the science as egg freezing or egg donation are not a guarantee yet.
I had 8 rounds with my own eggs, 3 miscarriages, 2 IVFs with donor eggs who gave 5-6 families twins and she has 2 children of her own. A second donor had same genetic carrier conditions with my husband and the fourth donor gave herself the trigger injection instead of the Cetrotide. I’ve done this in 5 counties and now I’m looking at Refund Guarantee clinics because I can’t afford to do this without a guarantee.
It sounds you’ve been through the mill. You’ve actually done the right things: the rounds with your own eggs, it hasn’t worked so then you moved on to donor eggs. It sounds that this is being unsuccessful as well. I don’t dislike the money back guarantees. I actually think they can be quite good. For those people who don’t know: you pay a much larger amount upfront but if you don’t get successful after 3 rounds, you get a refund. Of course, it refers to using donor eggs. I know there are also financial packages with your own eggs but you have to fulfil a lot of criteria: in terms of age and how many times you’ve been through IVF before. But I know that if you’re using donor eggs, then there are certain clinics that will offer that to you. So that’s great if you can find that and you can afford that cause it will at least give you some hope. Even if it doesn’t work, you will not lose all your money. But as you know, even donor eggs are not a guarantee. The percentages are much higher but there are still no guarantees. I know many women who have been through the same situation as you. And it’s so hard because it’s quite a big thing to make a decision to use donor eggs – and then if that doesn’t work either, it’s just so devastating. So my heart goes out to you.
The hardest thing is to say stop. We’ve tried for so long. And I’m just so tired. But something push me to keep on going. How to say enough? When? Can I stop? And how not to feel like doing a crime? I hope you know what I mean… When we should stop to do next round of IVF? Or change to surrogacy or donor? I had 6 IVF cycles and 11 transfers. Is it the time to say “It is not working, IVF is not a solution for me”. I was in 4 different clinics until now.
These two comments resonate with my own experience so much. I can’t tell you when to stop – you only know when you’re ready to stop. What I can say is that you will know when you’re there. Or you’ll know when you feel like it’s time to go that alternative route that I talked about: whether that’s donation or adoption or fostering. And there are amazing other routes to parenthood. For me it was the moment to stop when I was 43, just after the eleventh round of IVF. We still hadn’t got a diagnosis and there was a suggestion that maybe we had some immune issues. But I just knew in my heart: ‘ I’m not sure if we get a definite diagnosis’. After going through 11 rounds, I tried everything. And I knew that whatever else was going on, my age was such a massive factor at that point. I went to half a dozen clinics and I did all the complimentary therapies. And I had a doctor in one of these clinics, on my tenth round, and I never forget her saying this: ‘Jessica, we had great embryos for that round and if you were coming to me for the first time, I’d say go again. But you’re coming to me for the tenth time. Something is going on and we don’t know what it is yet.’ There was a reason and there were other factors coming, as my age, which is the biggest thing in the fertility success rates. Woman’s age is the most significant thing. So I can’t answer for you. Take what your doctor is saying and what you are feeling in your heart. I know it is really very hard to move on to the life you have never imagined but it doesn’t mean that you cannot become a parent in another way. Or it doesn’t mean you can’t have an incredible life. After swimming the channel – which was my first challenge – people said to me: ‘ Would you swap that for having a family?’ And I go: ‘No!’ It doesn’t mean that I don’t wish that it would be different but what I swap are other amazing experiences that I’ve had. No, of course, I wouldn’t swap them because they have been so fulfilling in my life. You just have to find this alternative life and it is there. Just remember what I said: we’re here for just such a short time. Now it’s hard but get up every day and say: ‘How am I going to turn this sadness into something good today? How am I going to turn this wound into a gift?’ And you can.
What do you think about surrogacy?
I think surrogacy is an amazing treatment. Obviously, primarily it’s been used for women who cannot carry their own babies. Now it’s being used more and more by same sex couples. I think that’s the biggest growth area. It’s still relatively a small treatment. But if you ask whether surrogacy is right for you: the truth is I can’t answer this for anyone out there. Only you can do this in collaboration with your doctor. That means a diagnosis as to why you are not conceiving. Is it to do with the embryos that you are creating? Is it to do with the implantation of these embryos in your uterus? Sometimes you won’t have a definitive diagnosis for your infertility but you need to go as far as possible. Of course, with same sex couples it is different because gay men have to have a woman to have a baby. But in terms of heterosexual couples, is surrogacy the right treatment for you? You need to decide with your doctor. But I think that all this science is amazing.
I’ve heard about stem cell treatment for ovarian rejuvenation – what do you think about that?
I know there is work being done. We’re going to be able to create eggs out of our skin cells or create artificial wounds. This is the future and it’s coming our way. But probably for those of us who are trying to conceive now or have been trying to conceive in recent years, this is the science of the future. It’s not the science for today. That’s really hard because in the future it might really offer opportunities but I do not think we’re going to be anywhere close to getting that.
Are there any charities that support couples who want to do IVF but can’t fully afford it? At the moment the NHS has refused us.
This makes me so angry about the NHS. NICE (National Institute for Clinical Excellence) says that everyone should be entitled to three rounds of treatment. I’ve said at length that the cumulative success rates of IVF are better and that’s why they’re recommending three rounds of treatment. Also, it’s absolutely unfair. You hear all these stories that no one has a right to have a baby and it’s not a terminal illness. But actually the pain of not being able to conceive feels terminal to me. I also think that the mental health impact is so huge. I just don’t understand why, in the country that prides itself on the NHS, we wouldn’t give people the opportunity to try for a child. In terms of charities, there’s a petition going around at the moment trying to improve the quality of the access to IVF on the NHS. I think that at IVF babble, an amazing online magazine, they have a program where they have clinics that donate free rounds of IVF. You’d have to look on their site and find out how that works. Certainly, at the Fertility Foundation, which is through Fertility Road Magazine, they were doing a similar scheme. I think the list of fertility clinics where they have a sort of raffle area might do a thing. There isn’t a sort of charity that I’m aware of that has been doing this for a long time in a big way but I know that small organisations sometimes have these opportunities. I’d look at IVF babble, Fertility Road, contact the organisers and contact the clinics that are listed that have sometimes done that.
…We here in the US have a group called Single Mothers By Choice on Facebook. I am a member of my local chapter. It has been tremendously supportive and provided tons of info for me. Also tips on giving yourself trigger injection (ice cube and leaning on a counter, so no weight is on that leg, made it 100% painless for me).
During the Fertility Show in London, one of our biggest sessions of the weekend was solo mothers. I think it’s a massive growth area. Many women today have chosen this route – not necessarily as an active choice because they had wanted to find the right partner and they couldn’t, so they made a proactive choice. I think in the future we will see more and more women genuinely making this decision out of choice. We have a huge number of organisations that support women who are on that path. The Donor Conception Network is a huge one, there’s also an organisation called Stalk and I, which is really growing. A brilliant artist Genevieve Roberts, who has just written a book about her story, spoke at the Fertility Fest and the Fertility Show in London and it was great. I think if you’re someone who is considering that, then I’d look at these resources.
How was the Fertility Fest? You’ve mentioned that solo motherhood was one of the most interesting sessions.
It was really well-attended. We also had a brilliantly attended session with the actress and cook Lisa Faulkner who also written a book on what to do when your plan B is meant to be. She went through IVF unsuccessfully and then she ended up adopting her daughter. It’s about her journey to becoming a mother through adoption. So that was another well-attended session. We had two sessions on the male experience. We always get fewer men coming to those sessions but I think it’s really growing. You know, men hurt, too. Perhaps this is a generalisation but women more easily talk about their feelings. And men are really struggling with this, too. We want to encourage men to know that they’re not alone and whatever their feelings are, they’re really understandable. They often feel that they have to be the strong ones, the supportive ones and the solution-givers. But this is just hard on every aspect of a couple.
How did you come up with the idea of the Fertility Fest?
For years, I ran a theatre in London. So I’ve always worked with the arts throughout my life. I wasn’t an artist myself until I wrote a book about my experiences of going through fertility treatment. As I said, I wrote that book because I couldn’t find a book that I wanted to read. I actually joked that at that time it was just me and the visual artist Frida Kahlo who has made an amazing work about her infertility and going through miscarriages. I thought we were just the two artists who had ever done work on this, which of course is rubbish. But when my book came out and because of my position in the art world, other artists started to contact me about the work they were doing. And that was then when the idea of bringing this all work together came out. I really wanted to change the world of fertility. I wanted it to be the subject to be explored and people to understand that this is a silent epidemic. It’s still a baby organisation but as it has grown over the last few years, I realised this experience is so much broader. It started from my own experience as a white thirtysomething woman who was going through IVF unsuccessfully and trying to make my own way through that. But then we started to look at other things like the male experience or parenting after IVF because the experience never leaves you. Race, religion, reproduction, donation, surrogacy, being diagnosed with infertility as a child because you were born without a womb or you have premature ovarian insufficiency – all of this was always led by the work made by artists, often from their own experience. And it grew and grew as there was nothing else like that. People weren’t even talking about it, let alone having an arts festival around this subject. It’s become huge, beyond our wildest expectations.
I want IVF for the first time at 53 years old, with egg donor and sperm donor. Is it not going to work?
No, it is not necessarily not going to work. I mentioned that in one of my ’21 miles’ stories I interviewed a woman who had her first baby at 56. And that was the gift of an egg by a donor younger than her. So absolutely it is not the case that it won’t work. But different countries have different regulations in terms till what age they will give you IVF, including donor egg and sperm. What you need to do is to look into that. But also remember that even if you have the youngest egg and the youngest donor, it doesn’t necessarily mean it’s going to work. If you’re going to carry the baby, then it is not only the egg and sperm that count. So it could work but it could also not work. But that is the same for everyone, whatever age you are.
Are there any reliable resource that provide success rates of clinics abroad?
The HFEA provides success rates of clinics in the UK but they do not provide the data about clinics abroad as they do not regulate them. I’m not aware if there is such a site that offers independent success rates about clinics abroad. But I would say one thing – and the HFEA would corroborate this – patients get really hung up on success rates. And actually the reality is that they differ very little between clinics. The biggest factor in success rates is a woman’s age. Your success rates go up significantly if you go for egg donation and you’re using the egg of a younger woman. Across all UK clinics, under the age of 35, the average success rate is 30%. And it won’t vary massively, maybe just by 1-2%. With donor eggs, it’s much higher but again, there isn’t much variation between clinics. Of course, clinics want you to think that they have better success rates than anyone else. We were talking about money back guarantees earlier. I think it is a good thing, giving you some sort of assurance. But you need to look at other things when choosing your clinic. Success rates are only one part of the equation. You need to look at regulations in different countries if you’re going through donation. You need to look at anonymity laws in the UK and abroad and decide how you feel about those. You need to think about easy access to the clinic that is obviously different whether you’re in the UK or abroad. And absolutely you need to think about what this clinic feels like – do you feel comfortable there, do you feel looked after and what about the emotional support there. Does this clinic feel clean? If they offer all the up-to-date treatments, do you feel they’re right for you? So it’s about other things and not just success rates. Don’t get hung up on success rates – and I think every top doctor (and I’m not one!) will tell you the same thing. You should do your own research. And that’s why events like the Fertility Show are so great because you can meet clinics and see how you feel about them. Trust your instincts. At the end of the day, no one can tell you specifically what your percentage chance of it being successful is. No one knows that. You can only know that by doing it because everyone is different.
Are you happy now?
It’s a hard question. What I already said is that I’m never going to get over this. It’s the sadness that I’m going to carry with me for the rest of my life. But that doesn’t mean that I can’t have other amazing and happy experiences. I can say that I’m probably like everybody. Some days I’m really happy and some days I’m really not. Just because I had this one really hard life experience doesn’t mean that I don’t think I might have another one in five years’ time that I’ll have to contend with. I’m training to climb Mount Everest at the moment and after a really busy weekend at the Fertility Show, I got on a train and I went to the Lake District. I was out on the hills climbing the mountain and I felt so happy at that moment! Being in the outside with my pack on my back and feeling excited about what’s going to happen in the next few months – at that moment I was happy. But it doesn’t mean that I’m happy every day. I don’t think that’s possible. And it also doesn’t mean that I won’t ever get over the sadness that I’ve been through. And I don’t want to. I think that Gary Barlow said that actually about the stillbirth of his child. He doesn’t ever want to get over that because he wants to always remember her. And I always want to remember my pain. It’s me. And that’s the answer.
I am sorry I didn’t go to London. Is there any chance the Fertility Fest can move around the county next year?
The Fertility Fest, as a part of the Fertility Show, this year was in Manchester and in London. We also took the festival to Vienna as a part of a huge fertility conference. We also took it to Sydney which was amazing. We’re also a part of other events that happen so check out the Fertility Fest website. There is also another thing that we are working on at the moment. When you put on a live festival it can only be experienced on a particular day by a certain number of people. So we’re also trying to create digital materials that can be accessed all year round. So watch this space and sign up to our mailing list on Fertilityfest.com
Thank you for the truth about IVF, I had no idea it was so hard.
When you’re going through it and you’re feeling this is hard, you have to know that you’re not alone. This is totally normal. This is so important and I want everyone to understand that. You can make it better by reaching out for support and just knowing that whatever you’re feeling is totally normal. And it does work but it can take time. And you might have to change your route.
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