‘Conceivable’ Jheni Osman and Dr Ed Coats on IVF – Webinar
Women’s health charity Wellbeing of Women recently hosted another excellent webinar where Jheni Osman and Dr Ed Coats discussed what Osman had learnt during her career both as an experienced science journalist and as someone who has been through the IVF process herself.
Janet: Hello, everybody, I am Janet Lindsey, from Wellbeing of Women, I’m going to wait a few minutes before we start. I’m just looking at the bar at the bottom of my screen and it tells me that participants are joining at this very moment. So, let’s give it a couple of minutes, and we’ll wait for more people to join. I’m working remotely from home, so, that’s London for me in Clapper. What about my two lovely panelists? What about you, Jheni?
Jheni: I’m in Bristol, at home in my small but cozy office.
Janet: Small is good.
Dr. Ed: I’m in Oxford Janet, today.
Janet: So, I just wanted to say hello, and welcome to the latest in Wellbeing of Women’s health and wellbeing seminars. Thank you for joining us today, for what I know is going to be a very emotional journey, but one that we hope will help you make the right choices about IVF. I’d like to welcome our two panelists; journalist, author of the book Conceivable, which I hope Jheni Osman is holding up now and…
Jheni: Thanks for allowing me to show a copy.
Janet: Thank you. And also to Mr. Ed Coats, who’s a consultant Obstetrician and Gynecologist and Fertility expert. Before we start, I will ask you both for a little bit of an introduction of yourselves. But before we get there, I just wanted to say a few words about Well Being of Women. So for those of you who don’t know about the charity, we are the UK’s only charity that invests in women’s health research, we say from cradle to grave, covering all aspects of women’s reproductive health, childbirth, including fertility and IVF
51% of the UK’s population is female, and we account for 47% of the UK’s workforce, and we give birth. Yet, women still undertake the majority of unpaid caring roles as well, and we really influence the health behavior of families, our own families, and society as a whole. Yet. women’s health has not received the attention it deserves, as a result, we are experiencing real health inequalities and outcomes that could be avoided. The impact of this affects every aspect of our lives. Young girls in the UK still miss vital days of school disrupting their education, because of their periods, that’s in 2020. It still takes seven and a half years to diagnose endometriosis and that can be a contributing factor for some in being unable to become pregnant, to our very high rates of premature birth in this country, and our inability to diagnose ovarian cancer, which, as many people know is called the silent killer. And if you’re black, minority ethnic, then sadly, you can have even more problems when it comes to being pregnant, and childbirth.
Now, COVID has hit us hard fundraising is really substantially down, we get no government funding at all, but women’s health doesn’t take a holiday, in fact, the need for research is greater than ever. We’re currently investing several million in over 30 research grants up and down the country. And those include several that directly impact fertility issues. We’re working with Imperial in London, at Southampton, and also in the northeast. Research today is tomorrow’s new treatment; it is the only way we’re going to find the answers that will help women have the families they want. We’ve proved that. Our results speak for themselves.
If you’re trying to get pregnant, then you’re likely to be taking folic acid, and that started with our research, as did ultrasound scanning in pregnancy and the foundations which are used today in hospitals up and down the country in their neonatal intensive care. So, I really implore you to support our work. If you haven’t done so already, please make a donation, you’ll be investing in your future, and that of all women, girls, and babies. Please spread the word about our work with friends, family, and colleagues. If you are at work, encourage your company to support us, take part in one of our challenges, we really, really need you. Thank you for listening to me. Now I’m going to hand over to Jheni and Ed, a huge welcome to you both, and thank you for taking part in this, and I very much look forward to hearing what you have to say. Thank you.
Jheni: Thank you, Janet, and thanks to everyone for joining us. I’m just going to say a brief bit about my story—takes 10 to15 minutes—about my story, about the book I’ve written and why I’ve written it, and then just go through sort of a step by step of what IVF is, and the process with that. Can’t cover everything, and Ed is going to cover more of the science side, so hopefully, you will gain a lot from it, but also have lots of questions to put to us later on in the webinar.
So, my story, I started trying for kids when I was about 35, I think, I went through three rounds of IVF, and I am incredibly lucky, I have two little girls. The process wasn’t always easy, we were very lucky, I got pregnant the first time and had my first little girl. The second time, we had failed rounds, and then the frozen embryo that we were lucky enough to have, then became our second daughter. My background is that I used to be a professional tennis player and I was healthy and fit and all those sorts of things, so, I never imagined that I would suffer from some fertility, it was me, I had a low ovarian reserve, which basically means I don’t have that many eggs left.
And you know, for my own body, I left it a bit late to be having kids, now obviously, people have kids all through it, you know, at all sort of different ages, but I think it’s my feeling of being incredibly lucky to have our two girls, and so grateful to all the science and research that has gone on, throughout the last 40 years, that has spurred me to write this book—you don’t get paid a lot of money for books. So it is really as a passion project to try to help others kind of cut through all the overwhelming jargon, and you know, just everything involved with going through the process.
Now, I’m just going to share with you my screen because I’ve just put together a couple of quick slides, which—so there’s the book—which, hopefully, will help as I chat through. In the book, what I’ve tried to do is create a sort of a handbook, a how-to guide to help you understand the process, I don’t know where you are in the journey, but it cannot, as I said before, it can be a bit overwhelming, you’re sifting through a lot of confusing, sometimes contradictory information, looking at well-meaning blogs and websites and so on, and there are some fantastic sites out there—Ed’s being one of them, Total Fertility.
But for me, I couldn’t find any one source that gave me the science—being a science journalist, I want to know that—and that also gave me sort of an insight into the emotions that patients were going through and so on. So this book, kind of, I hope does all that and will help you understand the jargon of what is XC, what’s IUI, what are these optional extra add-on, hatching and scratch and so on? And understand, you know, maybe what the emotional rollercoaster of this journey might be and prep not only yourself but partners and loved ones for what’s ahead. Or maybe you’re in it and you know how challenging it is already. And I’ve spoken to a lot of friends and colleagues and associates about their journeys and tried to interview a number of experts from different parts of the field. So, I hope it’s an all-encompassing, useful guide.
And I’ve tried to break it down into…you can see these different chapters, you know, “Why Can’t We Conceive?” I think Ed, is going to touch on that a bit more in a bit, reasons, why you might be struggling to have a baby. Age and lifestyle are huge factors if you’re a lady—lifestyle for gents, particularly, a bit of GP advice. And then the second chapter looks at sort of “How IVF Works,” is kind of step by step guide for what to expect, I’m going to touch on that in a minute. And then a chapter on “How to Choose a Clinic,” Ed’s going to reveal more on that, you know, factors you need to consider when deciding, and again, add these add on, what’s worth investing in, what’s maybe not. And get a donation in chapter four, what’s involved, how to source a donor, and legal issues.
Chapter five is on freezing eggs, embryo, sperm, with insights from people who went through it alone. For example, I got a story about a friend of mine who had a baby with the sperm of which was frozen from her husband just before he died. So, there are all sorts of different angles, and hopefully, we all have different stories, and we all have different experiences, but hopefully, this will give you an overview of what you might experience and what you might need to do if you want to try for having kids.
And then the sixth chapter was probably the hardest chapter for me to write, it’s something that you don’t really want to read about when IVF doesn’t work, but I hope it will be helpful, I had a round that didn’t work, it was devastating, and I already had a child. I cannot imagine what it’s like to go through rounds and rounds and rounds, and not be successful. But I spoke to other people who had had that experience. And I think…just going to read you a quote from one of the ladies who I interviewed, Jessica Hepburn, she’s author of the Pursuit of Motherhood, and she found a paternity test as well, and she wanted to point out that before starting the process, you know, many people don’t understand that around three-quarters of all treatment cycles, they fail.
And I think what she was saying is, she said more people need to know that, they are prepared that they might need to go through more than one round of treatment, and it might not ever work. And she feels there needs to be more information about success rates, and what decisions you might need to make and when, and hopefully, something like my book, or Ed’s website or other sources, you know, HFEA, has a fantastic website for helping you guide you with certain things. Hopefully, all that will help you make the best decisions at the right times in your life.
And then the final chapter is “What’s next,” you know, what’s the future of IVF from currently, what’s happening now, three-parent babies is something you might have heard of, to deal with the mitochondrial condition, mitochondria being the powerhouses in your cells, right through to the sort of far-future of—maybe not so far future, because I know they’re developing them now—artificial wombs. But so, it’s sort of looking at kind of where might IVF go in the next 40 years.
So, let me just flick on, and this is a timeline from—if you can see this my screen—a timeline that I pulled together, from the basic steps of what will be involved with going through the process if you’re a heterosexual couple. And I’ve tried in the book to cover all sorts of different people and situations and so on, but this is for heterosexual couples, and it’s basically distilled down version. Everyone’s body is different, everyone has different medical challenges and so this may not be exactly what you will go through, but hopefully, it’s a good outline.
So, first up, you would have some tests. Now, these would generally, some of them could be…I would say if you feel you’re struggling to conceive, go to the GP have a chat with them, they can recommend some tests to find out, blood tests, urine, etc. There may be other tests that you have to go to a clinic to do, and it will be at your first consultation once you’ve signed up to a particular clinic, and I would say take the time to choose the right one that’s right for you, everyone is different, and Ed, will go into that more in a bit, but at that first consultation, your consultant will feedback on test results, and he’ll do a scan and so on and so forth.
And now I remember from my own experience, I just sort of drifted into this whole process. That sounds a bit crazy, but I’ve done a bit of reading and so on, and then drifted into this process, not drifted into it, but this was the point where going through IVF became real for me, because basically, we sat there in front of our lovely consultant, and I remember being absolutely stunned because he told me, you know, basically running out of eggs, it’s you. And for some reason, I always thought it was my husband, I don’t know why I thought this, that his sperm might not be up to scratch, and that was a real shock, I didn’t take on board much of what he was telling me at that time.
And so potentially, you could write down some notes or ask if you could record the conversation, I don’t know, just that you’re a bit prepped mentally for being overwhelmed by the situation and not necessarily being ready for the news that you might be told. Or well, you might be so relieved that you know, finally been given a reason as to why when you’ve been trying for so long, that you haven’t been able to conceive as yet. In the book, I put a list of potential questions to ask the consultant. So, you know, it’s just trying to prep you as best as you can, I don’t think I was that well-prepped for this whole experience, and talking to other friends, I would say they’re exactly the same, they went into the first round of IVF, quite naive.
After that, it would be a consultation session, you can decide on the course of action with the consultant. And I go into all sorts, I know Ed, is going to mention it briefly later, you know, with funding, who might get funding, whether you’re eligible, etc, I look at that in the book. And so the next step would be signing consent forms, you and your partner, and then you’d start what’s known as the menstrual cycle suppression. And again, Ed is going to look at that in more detail, with the actual science of what happens. But day one is the first day of your last period, and so with that menstrual cycle suppression, basically the clinic is trying to control your cycles that they’ve got hands-on, and they’re able to then optimize your chances of the egg boosting drugs working at the right time, or the actual egg extraction of eggs being ready to be extracted at the right time.
So then step five, you’d go into taking probably, some egg boosting drugs, particularly in my case, I needed quite a heavy dose, you do those injections. I remember, I actually asked a friend who’d been through IVF, just show me a step by step of how to prepare the drug and do the injection and so on and so forth. And at first, you’re like, really, you know, I’m going to have to do this every day? But it became no worse than brushing my teeth, I just got really used to it, and that’s something I think you might find with this whole process for a lot of people it becomes, you can really pragmatic about it all, you know, if you have a partner, it becomes just something that you’re doing together.
If you’re solo and just sharing with friends and family about this, you know, it becomes a really pragmatic part of your conversations, and it’s so separate from kind of the romantic side of sex and so on. And I think for me, the actual physical part of going through the process was less arduous than the emotional side. And I don’t know for other people how they found it, but it certainly that wasn’t the toughest part for me.
And step six—I’m aware that I’m taking up quite a lot of time—so, step six is, you have this, basically progress check, you know, they check on your follicles, and what they’re looking for is for when your follicles which hold the eggs are sort of 17 millimeters or more, and that’s sort of optimum time to think about extraction. And then you do one final injection, which the timing has to be absolute to the quarter-hour, kind of thing, to ensure that the eggs are released at the right time the next day when you go in for egg extraction. And when your partner is giving a sperm sample or if you got a donor, so it’s all timed perfectly together. I won’t go into the nitty-gritty of donation now, it’s a whole huge area, you could write a whole book on that, but there is a chapter in the book on that.And I will just tell you a funny story, because I think it helps make all this kind of stuff very real with going through the process that a few days before egg extraction was going to happen and Max, my husband was going to have to give a sample and he was doing karate and had a bad karate takedown and dislocated his collarbone, he’s right-handed, it was his right shoulder. And I remember the moment of us walking in with his arm in a sling into the clinic, and the nurse just looked at us knowing that that day was crucial, you know, my eggs were primed to be extracted, Max had to perform on cue in this window of time, and there he was, with his arm in a sling. And I remember her just kind of giving, “Oh, my God,” and it was actually quite a relaxing moment, we all had a giggle, we all went, “Okay, well, he’s going to be able to do this, he is a talented man,” and it was absolutely fine, and you know, we have a wonderful daughter. But I think that’s it, that nothing ever goes exactly according to plan, I’ve heard so many stories from so many friends about funny moments or things that…and it’s almost, if possible, good to use those moments to laugh and relax because it’s a challenging process that you go through.
And I’ll just sum up with, you know, over the next few days, you get a call from the embryologist, post-fertilization to say how many embryos, if possible, have survived fertilization. And that’s always quite a hard time that hearing, waiting for that call to say, yes, you know, they’re progressing into hopefully, good blastocyst, five-day-old embryos. And then, as and when consultants think it’s right if you have some good embryos, they’d be transferred back into you. And that’s, again, another long period of waiting until you can do your pregnancy test, those two weeks is quite…I know, a lot of friends have said they found that very challenging that time.
So, that just gives you a little summary of what the IVF process is. Now, obviously, friends who get pregnant naturally never have to go through all of that, so for them, waiting to see about their 12-week scan is to them that’s a hurdle, for us, it’s all the shenanigans that go on before, and I would just say it is a challenging process, but you know, if you can hang in there, it can be…I got very lucky and have two kids.
To finish up, I just want you to read a couple of patient quotes, because I think they give an idea of all that. One who is anonymous, it’s a guy friend, who didn’t want to send a name. He said, “Trough the whole process, I felt really depressed at points and our relationship has had its ups and downs, we got through it, but I wasn’t sure we would at many points. The pressure from start to finish was pretty significant, I coped by having private counseling, doing exercise, and talking to my wife. I’m now really happy we went through it as we have two wonderful children, but I’m still fairly scarred from the whole process. My advice would be to stick with it, it’s tough, but worth it and try to talk a lot to your partner and understand how each other feels.” And sorry, I got a little emotional there, it’s some of my best friends, and it was you know, it’s a tough process for everyone to go through.
And then the second one is a quote from Richard, who I saw talk at a fertility conference and then interviewed him, and he’s fantastic, he’s trying to get more men talking about infertility. He went through the process, and he found that he didn’t really have necessarily that support at the time. He says, “Male factor infertility doesn’t get spoken about very much, I’m pleased to say that that is slowly changing, but I guess we’re our own worst enemy because in general, men don’t like to talk about things. And it took me a long time to acknowledge to myself that I was really struggling at times, and there was a lot of self-loathing because it was my fault, and it took me a long time to talk to someone. The only thing I learned was that you must talk, find a confidant.” And so I’m now going to hand over to Ed who can give a more expert scientific view on IVF, and I look forward to your questions, everyone.
Dr. Ed: Thanks, Jheni, incredible that you’ve taken time to do this. I just want to sort of start by just congratulating you. I’ve got the book. This is such a wonderful resource for patients. And so first I want to thank you for taking the time because anyone’s ever tried to write anything knows to write a whole book is incredible, but you’ve been incredibly honest throughout it and obviously, passion and emotion coming through there as well with what you’ve been saying, so thank you.
I’m going to share a few slides as well as we go through, but I just want to first say thanks to Janet for giving us the platform, and thanks Jheni for coming to Wellbeing of Women. I’ve been involved with this charity now for over 10 years. It’s an absolutely fantastic charity. We’re not the biggest out there but we do have a huge impact. You heard there about folic acid the impact that’s had on so many people’s lives, just from the money that goes into the research. But I’ve been involved in obstetrics and gynecology now for over 15 years, I’ve been a consultant down in the West Country, and more recently, I’ve moved now, I work in Oxford and in London.
And I wanted to just share with you today some things around the science behind what Jheni has been speaking about. It’s so nice to have that interface between real patient experience, and someone who’s willing to be so honest, and share their experiences with us, so, we feel so lucky to have you here, Jheni.
Dr. Ed: Brilliant! So, obviously, there’s the book again, if you are going through this, wherever you are in your journey, what I found fantastic about this book is it takes you, from the very, very outset, when you first start to question your fertility, right through to the most complicated things and the future of IVF. And it’s put in sort of an easy way to understand it. And it’s also got some lovely anecdotal stories, plus the science, and as Dr. Valentine Candy there says, he was, I believe, your fertility expert through this journey, Jheni, alongside many others. It is backed up by science, and that’s what makes it such a powerful read.
But I thought for those of you watching, some of us, I don’t know who’s on the other end of this, but there may be people who are just beginning to question fertility, perhaps. So, I think we need to understand when you should start to think about your fertility and in terms of when you would start to investigate it. And it’s really after about a year of trying, and we define that by the WHO, sort of suggest that after a year of unprotected vaginal sexual intercourse, couples should begin to start to investigate and assess themselves as a couple with partners. So that’s sort of an underlying sort of time to be thinking about 12 months of regular menstrual cycles. And that’s because really we know that around about 82% of couples will conceive within a year. So, that’s a huge number of people, but for those 20% that haven’t, you need to start to then think about is there anything going on here? The majority of people there won’t be in this and as you can see there by two years, almost 90% of people who have conceived. So, it is obviously a small percentage of people, but it’s also so important that you also understand that it could affect anyone—Jheni there talking about how she never expected it to be me. And I think the thing that you also said as well Jheni, which stood out there, was how you thought it might be your other half.
And I think from a male perspective, I think the men often think it could be the woman, so it’s interesting that interplay between what you’re thinking and possibly not always discussing. But we know that almost a quarter of female infertility problems come from problems ovulating, and a large portion of that is people with a condition called polycystic ovaries. We could do a whole presentation on polycystic ovaries, it is a common condition that affects about one in five women. And if you want to find anything more about these conditions, we’re going to give you some useful resources at the end, but the Royal College of Obstetricians and Gynecologists and of course, Wellbeing of Women, are some fantastic places to begin.
And endometriosis is a condition that affects a huge number of women, and endometriosis is where you get some cell lining from inside the womb when they succeed around the pelvis. And unfortunately, when you menstruate, when you have a period each month, you can find that you get bleeding and scarring in the pelvis, and if it affects the ovaries, it can, unfortunately, affect your tubes and your egg reserves. Some people have infections in their lifetime in their fertile life, whether it be sexually transmitted, or otherwise, people can have problems as a result of that, pelvic adhesions can affect the tubes and the ovaries and tubes can become blocked. And these are some of it, as you can see we’re almost working around the pie chart here where we’re covering most of the things that affect people.
And people can have congenital problems, so they’re born with abnormalities, with their tubes with their ovaries and with their womb. People can have hormonal imbalances, we talk about having high prolactin, that’s one hormone that this affects a number of people, it affects how regularly they’ll release eggs. And then you can see that light blue color at the top there, to the left of your screen, unexplained. So, one in 10 women actually has no reason for not falling pregnant, which is almost even more frustrating because you don’t have a cause.
Let’s turn to the men for a second, so in men, a huge number of men, we don’t find a reason for why they’re not managing to conceive, why the sperm are not penetrating the egg. Some men will turn up in fertility clinics and I have seen obviously hundreds of couples and patients each month and men will turn up with a clear history of undescended testicles as a child, things like varicocele, and then again, some of the more complicated and complex hormonal imbalances which can affect that drive to create sperm in the testes themselves. So, there are a number of things that are sexually transmitted infections as well. And these are all factors that we consider as fertility specialists when we’re looking at a couple and trying to work out why they’ve not managed to conceive.
Jheni’s book is a wonderful overview of all the different areas, and it’s very nice, it takes you through it really in this very structured way, I would encourage you to get it and read it, because it really just such an easy read. I’ve actually read the whole thing from start to finish. And the book has so many references and so many things you can dip in and out of it. But I just wanted to look at IVF specifically, and she talks a little bit about that, in that nice timeline, which is great. But some of the key stages, which we…before I show you some nice videos of what’s actually going on in IVF, I thought I’d just show you the sort of three main stages. Normally, the brain will tell the ovaries to grow an egg each month, and the ovaries have a number of eggs, from the moment you’re conceived to the moment you start menstruating as a young woman, you’ll have a number of eggs and those actually go down as you go through those periods of time. So by the time you’re actually beginning to menstruate and ovulate as a young teenager, your egg numbers are significantly dropped from the numbers that you had were first conceived.
And then as you go through your fertile life, those numbers will go down as you get older. And as Jheni said, some people will find they have a lower reserve than they expect. How do you know if you’ve got a low reserve, you can see there with the red arrow AMH, we use this form AMH, the Anti-Mullerian Hormone is what it means, it’s talked about in Jheni’s book. It’s a hormone released from around the follicles in the ovaries, and it gives us doctors a clue as to how the egg reserve is for a woman. The FSH is the hormone that the brain tells the ovaries to grow the follicles each month I should say before you surge in the middle of your cycle and you release the egg.
So these hormones are working all the time, and we use these as well as your age, AFC…I should just explain what that says in the middle of the screen, AFC, the abbreviation the second one down is, Antral Follicle Count. Again, Jheni, talks about this in her book. This is the number of early follicles in the ovaries, and it gives us doctors a clue as to how a woman may perform in an IVF cycle.
So, all of these are very, very important things, but then in an IVF cycle, we have to stop that natural cycle to grow eggs, we have to block that, and that’s called down-regulation. And what we do is we actually block the FSH with a series of injections. Now, in the timeline that Jheni spoke about there, she talks about a long protocol where you switch off your hormones, with injections, you can do it with nasal sprays, well, there are lots of different drugs, as you can imagine on the market to do this, and clinics will use all different drugs. And essentially what you’re trying to do is switch off that drive to ovulate. And that’s the same with a short cycle as well.
But what you then do, once you’ve blocked those hormones, you actually give the patient back FSH, so you’re actually giving the hormone, a synthetic version of the hormone, which then the brain naturally produces to grow the eggs in the ovaries, and that’s called the stimulation phase. That’s the phase where the ovaries will grow and all the follicles that are sitting quietly in the ovary that month, so it’s just the ones that are there that month with the potential to grow will start to enlarge. And if you have a low reserve as Jheni spoke about, you may not get many eggs; if you have a very high reserve, for example, a patient with polycystic ovaries, you may end up with far too many eggs and this is slightly the art of trying to get IVF right for patients and make sure we do it safely.
When your follicles get to the size, you come to the theater to have them triggered, which sort of mimics that surge in that natural drive to ovulate and the maturation of the eggs in the follicles, so that when we bring it to the theater, we can then collect the eggs from the fluid that we drained from the ovaries. Now, I hope you’ve all had your lunch, you’re not feeling too squeamish, I’m going to show you a video of what it is to collect eggs, so we have this nice video here just showing you on screen how we actually go about collecting eggs. So, this is an ultrasound video of the ovary, and you can see there’s a needle there going into the follicle, and that’s just draining the follicle. This is done with the patient’s asleep, sort of general anesthetic, it usually, a drip in the hand, and a number of drugs that just sedate you gently so you’re comfortable and unaware of what’s going on. And we do many of these in Oxford, you know, we do between 10 to 12 a day.
Now, the other thing that happens, obviously is the man has to turn up to the clinic on a collection day. So, I see there’s a question here about COVID, which we’ll get to later on, but obviously, when you come through to the clinic at the moment, we’re trying to reduce patients coming through to clinics, and having too much footfall into the clinic. But you are essential to the process and on a collection day, the man must attend the clinic, unless sperm has been frozen in advance.
And on the left here we’ve got a nice video of what normal semen parameters look like under the microscope. We will obviously get a fresh sample on the day of egg collection if we’re doing it in that way and collect the sperm analyze it in the lab, prepare it and check if the parameters are normal. When the male parameters are not normal or the semen isn’t in high enough concentration or they’re not swimming well enough, we have to use a different technique which Jheni talks about in her book called ICSI. ICSI stands for Intracytoplasmic Sperm Injection, and it involves taking a single sperm, the best one that we can find in the dish, I don’t do this, the egg embryology colleagues do this and injecting a single sperm, mature spermatozoa into the cytoplasm of the egg. And that takes place in the afternoon after the eggs have been harvested.
The eggs are then put into the incubator, and overnight we hope that the eggs will fertilize. And here is a picture of a very, very high definition electron microscopy picture of the egg being fertilized. If you see on the left of your screen there you can see one single sperm making its way into the cytoplasm. If you watch very closely on the left-hand side, you’ll see two very small nuclei developing, that’s a sign of an early, normally fertilizing egg. And if you watch even closer, there we go, you see, the embryo dividing into a two-cell embryo and then two cells continue to four cells. As we move to the right of the screen, you can actually see what’s going on in the incubator beyond this stage. So the embryos continue growing in culture, and we were aiming to grow the cells, right up to five days, which is what we term, the point where an embryo reaches the blastocyst stage, a blastocyst is a ball of cells.
And you start to see the different types of cells the inner cell mass which becomes the baby, we can just see that top left hand one beginning to hatch. I’ll play that again, for those of you that didn’t see that the top left hand one, keep an eye on it, you see the embryo catching out. So you’ve got the trophectoderm, which forms at the center, the outside cells, then the very, very tightly packed into cell mass, the darker bit you can see in the embryo, and then the embryo will gradually begin to hatch, and that you can see up in the top left-hand side if you watch back through there. So, quite clever stuff, and really down to excellent laboratory and science, which has come from research in most cases.
But what are you entitled to? What does the NHS give you? Our NHS is quite clogged up at the moment. So, we are struggling, a number of NHS clinics are struggling to get capacity through, but it’s such an important starting step for anybody who has fertility problems. Now NICE, the National Institute of Clinical Excellence, recommend that anyone under the age of 40 should undergo 3 full cycles of IVF if they are struggling to conceive, and what we mean by struggling to conceive, usually, it means you’ve been trying for these two years, but I’ll get onto that in a moment. If you’re over the age of 40, a full cycle is recommended.
Now, the problem we have is in the UK, we try to share all the money out around every specialty whether it’s vascular disease, dementia, heart disease, lung disease, and the clinical Commissioning Groups have to create policies and this is where the postcode lottery of an idea comes from, as you may have heard of becomes very real for some people. And we don’t yet have a national policy, which is very, very hard for patients. So you will find all different criteria up and down the country and in different areas, and I think there are a few CCGs nowadays that actually will give patients three full cycles. Certainly, in Oxfordshire where I am and previously when I was in the southwest, it was mostly one IVF cycle. But in general, no children in a relationship has to be a starting point for both being eligible for NHS funding and also having normal BMI. Two years, in general, is the cutoff point where most CCGs will fund patients to try IVF, and it’s absolutely important if you’re a nonsmoker.
Now, what does IVF cost if you’re not entitled to NHS funding? So I was a co-founder of Total Fertility three years ago now, we created this website really just to try and let people understand what their options are out there in the IVF marketplace. There are so many fantastic clinics, I work in one, but there is loads of other clinics that are out there, which are doing an incredible job for patients. And this website essentially allows you to find from your location or your clinic options. And because there are so many important things—if you look at Jheni’s chapter on choosing a clinic, it really honestly looks at all of the issues you need to think about. It’s actually fantastic, it’s a great tool through all the things you need to consider and think about. And you can see how the prices will vary, so prices vary across the country, success rates vary as well, and we and we try to demonstrate that, where a lot of the data comes from is actually the HFEA, the Human Fertilization, and Embryology Authority.
So that’s the regulator of all licensed fertility clinics. As we use data from the HFEA, we use clinic prices to try and make it easier for you so that you can look at your options. But you can see the vast differences across the UK, in terms of how much IVF can cost you. And IVF drugs vary depending on what your AMH level is there. And Jheni, talks earlier about having a low AMH and eating a higher concentration of drugs to try and optimize the yield she got. And if you have got no sperm in the ejaculate, you may need a surgical sperm recovery, and again, prices vary for that. And the ICSI treatments and the IVF treatments vary in terms of their costs as well.
On the right-hand side, you can see the traffic lights, I’ve put that there because kind of also have a number of additional treatments which…there was actually a panorama program on add on in IVF, not so long ago. And it really looks at the clinics in the way they were trying to talk about these add on and following on from that, and it’s sort of exposure of add on in IVF, and additional treatment, things that may improve success. And the HFEA created this fantastic traffic light system, Jheni talks about it in her book, we’ve got an article about it on our website, it’s really giving you some knowledge about what’s got evidence and what hasn’t. And so the traffic light system, as you probably can guess, red things don’t seem to have any evidence yet. Green things have evidence and say, Amber, require more work.
So how do you choose a fertility clinic? You can go to the HFEA, you can use our website you put your postcode in, you can look at all your options in an area. And the important things are success rates, prices, reputation, location, how are clinic is across all age groups in terms of success rates, I think is a really important factor not just being good in one area, but being good across all age groups. I do think that is reflective of a good lab, and you can find your clinic options very quickly.
This is a question I thought I just touched very briefly on because Jheni, does it in her book. But Jheni talks a lot about the emotional side of when IVF doesn’t work, she’s fantastic because I can’t talk about that in quite the same way. I’ve looked after that many patients and it does break my heart when we can’t succeed for patients. But the actual process of what we’re thinking about from a clinician side is what I like to term the IVF puzzle. So what are all the factors that make a successful IVF cycle? There are lots of things that patients will wonder about and as you go through IVF Jheni’s list of questions is really helpful because it may get you thinking about almost this stage before you even start an IVF cycle, she referred to earlier.
But there are so many factors, we have to think about. The embryo transfer, I did my whole Ph.D. in research on how we put embryos back in the womb, I wrote piece on that. And I think it’s such an important part of the patient’s journey. But we don’t talk about it as much in terms of science. There have been over 250 papers on this in the research, but actually, we still, believe it or not, but then we put the embryo back by squeezing a little syringe with a little catheter inside the womb. Yes, is it an art or is it a science? It’s something which I’ve also spoken about.
And we’ve also got the womb lining, the endometrium. This is another really, really important area of progesterone, how progesterone interacts with the endometrium, and what we call about that, endometrial receptivity and implantation window, when is the right time to put back the embryo? And I think clinics, we all do slightly different things, but the majority of them stick to the same types of protocols. Is the lining thickening nicely, are there any other issues with the womb? Are there fibroids, are there polyps? These are all important things that we look at when we’re looking at why implantation may not happen.
There are blood factors which we begin to look at when people have repeatedly failed cycle and Jheni talks about people who have 5, 6, 7 failed cycles. It’s absolutely devastating for couples to continually be putting back good embryos but not having success, and it can be a really, really puzzling issue. There’s absolutely no doubt the embryo is absolutely key and that is really down to the science and you know, fantastic that when you look where we’ve come from and just, you know, 43, 44 years from step to until now, the success rates are still not high, we’ve still got a long way to go. But we are creating embryos and creating families for people who’ve never been able to have them before. So there is a lot of things that we think about as clinicians when we’re looking at IVF cycles.
So if you want to look for clinic around you, you can use the Total Fertility website, but I thought I’d just leave this slide for a moment for you because obviously, Jheni’s book is something I really think if you’re here today, I think you should be thinking about going and spending money on it. It’s worthwhile, it’s an enjoyable read as well actually from a doctor’s perspective. It’s worth it from a patient perspective, I can see the value adds.
But the Royal College of Obstetricians and Gynecologists is a fantastic resource for anything related to conditions that patients have. The HFEA will provide a very fantastic amount of data and information about clinics and cycles. They also do provide the CQC reports as well, so, the CQC is the sort of moderator of clinics checking for health and safety, making sure that we’ll connect up to the highest standard and you can read credit reports on there.
We’ve talked about our website, Fertility Fairness if you’re not sure what you’re entitled to, and of course, I couldn’t but not finish with Wellbeing of Women, it’s a great place as well for anything from the start of life right through to the end of life in terms of women’s health problems. So that’s a quick tour, I’ll stop my sharing now, and I think we’re going to hopefully have a chance to just discuss some of that. Are you there, Jheni? I think you’re still on mute.
Jheni: My apologies
Dr. Ed: There we are.
Jheni: Ed, as you were going through that, I thought, gosh, there’s so much that you covered just in a short space of time that you know, it’s such a complicated process, there’s so much to it and yet, you’ve touched on a lot of things there, which I think people won’t know about, they can go and delve into more. And that was actually really useful for me to have a reminder of everything I’ve written about, and so thank you. I’ve seen that we’ve got quite a few questions that have popped up, I don’t know how you want to do this Ed, we’ve got some in the Q&A and some in the chat. Did you want to deal with the science ones first? Or do you want me to kick start because you’ve been chatting you might have the chance to respond?
Dr. Ed: Yes, we should do some questions, shouldn’t we? And but can I just ask you first of all about your book really briefly, because I am fascinated by people that are motivated to do that because it is a horrible process, IVF, for so many people. What made you want to write the book?
Dr. Ed: It’s a huge undertaking to write a book, Jheni, what made you made you go that extra mile and do it, because of a huge undertaking? I know you have an interest in science.
Jheni: Being a science journalist, I think my science journalist brain was thinking, why am I doing this? Why am I taking this amount of drugs? What should I be, you know, what do stats say about what add on are worth investing in, what what’s not? And all these questions were going on in my mind and I wasn’t necessarily sure that I was clearing myself when I went through the process, and I felt that I just got so lucky with having my first girl that genuinely, I just thought, I don’t know if this resource is out there, and I just wanted other people to have a chance to hopefully understand what maybe I didn’t understand that well when I first went through the process.
So, Valentine, who’s contributed to the book as well, he’s in charge of the Bristol Centre for Reproductive Medicine, he’s fantastic and he oversees it…and actually, our consultant was a guy called Dr. Chandra, Kyla Sam, who’s now moved to the London Women’s Clinic. And Chandra was just so clear at explaining everything to me when I asked, and he was so compassionate that I think we got incredibly lucky with our consultant. I would say that probably most people who go into this field, you have huge compassion for people wanting to have families, and I haven’t met anyone yet who’s trying to take advantage of the system. You know you hear of clinics, trying to take advantage, I haven’t come across that. And I just felt incredibly lucky to be so supported by the clinic and by Chandra. So, I want to give other people the opportunity to have that chance as well.
Dr. Ed: Yes, I know it really comes across when you read it, and there isn’t anything out there like this, so it’s wonderful. So as I said at the beginning, I think anyone reading from the beginning to the end, it’s just so great to have.
Jheni: It’s wonderful to hear from an expert’s perspective as well.
Dr. Ed: Yes so, Jheni you may have read these already.
Jheni: Yes so, we had one that was sent in a while back, sorry, I don’t know who by and it was asking about, you know, should they tell their boss if they’re about to start IVF treatment? What would we recommend? I can’t talk for anyone else but my experience is, I was very open with everyone, friends, family, etc, about going through the process, because it helped me because I had so many friends say why don’t you try this? Why don’t you do that? And now I completely understand why you’d want to be private.
And after my second round, the first time it failed, I wished I hadn’t told so many people we were going through it, so I had texts on that day saying you know, “How did it go? Is it alright?” Because they thought I was wanting to because I was very open about it. And I wished… and it was that horrible, horrible, I was devastated. It’s crazy, I’d already got a little girl, but I was actually devastated by the process of not working. So I totally understand people wanting to tell friends and family, and I totally understand people not wanting to tell anyone. All I would say is have a confidant in some way, whether it’s a counselor or someone to discuss things with. In terms of telling your boss, I was freelance, I didn’t have to tell anyone I was going off to appointments and so on. But I asked, I hope you don’t mind I asked my husband last night, you know, what did you do? And he said, well, I told them that I was going to go to appointments that we were going through IVF.
I guess, if you’re concerned that there might be judging of you, you know, that you’re not committed to your job, or whatever it is, don’t say anything, but just say I’ve got a medical condition, and I’ve got to go and have a few appointments coming up, something like that, potentially. And all I would say is IVF is such a long process, and it may or may not be successful, and that maternity leave is a long way off in the distance. And for most employers, I would have thought that if you are of a certain age where you might be considering having a family, they might think well, they’re probably going to be trying to kids anyway, potentially, but I hope that helps, but, you know, it is always personal.
Dr. Ed: There are so many important things, aren’t there, Jheni, which you have to attend appointments, and it’s quite draining, incredibly draining. So that’s one of the things I’ve noticed with our patients that I’ve looked after over the years. And I think one of the things that maybe we’re not so good at as a society was trying to be tough long coated the whole time in life that way. And, I think, actually, it’s okay to sometimes just to share things.
But as you say, everyone’s very different. I have friends and close friends and you know, family who’ve been through this and it’s a difficult road for anyone, it doesn’t matter how successful you are and things in life. It’s just indescribably hard to do. So, think, really carefully about that what you’ve said there, I think that’s important to try and share, a problem shared is a problem half solved sometimes.
Jheni: Yes, and I think it’ll surprise you what challenges you. And certainly, from talking to other friends and patients and so on, they were surprised by just how many appointments they had to go to. So, if you haven’t told anyone about it, they might not understand why you’re sort of an emotional wreck, or that you are having to pop out all the time to go and have a blood test. And that’s something we actually talked about in the book is when choosing your clinic, think about if you do have to go to appointments and so on, and maybe one that’s quite local would be best. You know, it’s all personal all these decisions, so…
Dr. Ed: Do you want to look at the next one, Helen’s question? I don’t know if you’ve already read it, you are probably better on that than I am.
Jheni: I have, yes. So yes, I mean, Helen, this is sort of, I can speak from experience that we already had our little girl, our consultant Chandra said, “You know, we know your very reserved is low, if you want to try for another one, you should go ahead with it.” Now I, at that time, I didn’t care about having another child I was so, I felt so lucky to have our little first one that, but as soon as we started trying, and going through IVF again, I was suddenly desperate to have another baby to have a sibling for her. And I think it sounds so spoiled to say that, then when it didn’t work that time, I was devastated. And certainly, when I talked to, interviewed a counsellor for the book, she said, the second time around, it can be just as devastating and you grieve just the same for what could have been.
But people don’t understand that you’d never say to someone who had children naturally, “Oh, you’re so lucky to have your first one.” You’d never say that, so why is it acceptable for someone who’s been through IVF to say when you already have one? Because it’s the hope, it’s the possibility of what you’ve set up in your mind of what you would like. I would say you asked sorry, this will be a one-shot to try for another baby.
This is exactly what we knew, we knew we had one frozen embryo, we couldn’t afford to go through it again. And you asked for resilience tips if it doesn’t work. I sorry, I jotted something down here, I said the only…because I can’t relate to this, but I would say counseling and they will help you deal with that sort of green-eyed monster moment where maybe you see two siblings playing together and you haven’t been able to have that yourself…Yes, I’m sorry, I’m probably not best, maybe I can…
Dr. Ed:I think it’s really interesting, because I’ve seen sort of two sides of that, I see patients that will go to the fertility counselor very early on, and I’ve seen people that go to it quite late. And usually, the ones that go quite late say to me, “I wish we’d done that earlier,” because however strong your relationship is, I think it can be hard sometimes to talk about things as difficult as this because you’re talking about things that potentially quite negative, and so some couples don’t find it easy to do that. And so I would encourage anybody who even thinks they have the strongest relationship in the world, it’s not a sign of weakness, to go and see a counsellor, it actually gives you a really nice platform to speak openly about the things that are bothering you, as you might not have the confidence to say to each other, because you don’t want to be confrontational.
So my resilience tip for you would be to say, engage with counselling early on, and try and understand what this means for both of you with your son, Josh, but in the context of your life, so it’s not a rolling, never-ending story, which you don’t know when to stop.
Jheni: Yes, absolutely.
Dr. Ed: That’s from a clinician’s perspective, not a patient perspective, obviously.
Jheni: Yes, and Shana was just asking about balancing the emotional element of this all. And so we talked about it having a confidant or a counsellor, but I’d also say something I found quite useful was to try to continue with normal life as possible. If you enjoy going out for a meal, go out for a meal, if you enjoy going for a walk around the countryside, go and do it. Just don’t overdo stuff. And that was a very fine balance that my husband and I sort of muddled through. And I would say talking to people, and carrying on as much as possible as normal, try to normalise it, you know, don’t just stop your life dead, and do nothing else and stop work and so on, because personally, I don’t think that’s going to help you with your stress levels. And then Rajnee, said…and maybe this is a good one to ask you, Ed, when do you start the idea of success?
Dr. Ed: It’s always difficult when you’ve had success already, in many ways, that’s a huge tick in the box for us as an IVF Doctor because you look at the patient, you say, well, we know that the incubator works, you know, the womb works, you can carry a child, this is fantastic. And many people never reach that point. But then you’ve got to weigh up age, you’ve got to weigh up how long you’ve been trying. If anyone who’s had a child already will not be entitled to NHS funding, you’d be looking at self-funding, but I think at 39 you have been trying for two years, you have to think quite hard about it. But if you’ve had a miscarriage as early as last year, that means you have conceived. And so often, where the areas I find can get kind of blurred sometimes between miscarriage and fertility.
But sometimes patients have both problems, and so not only does it take a long time to conceive, but then when you conceive, either naturally or through IVF, you also miscarry. They’re two completely different topics, there is some crossover, but I think at 39, I would want to know your AMH level, I would want to know the quality of your partner’s sperm, I certainly think a consultation with a doctor to look at all of that would be really important.
Jheni: And something I picked up when I was writing the book was that because age is such a huge factor for men, but also mostly for women, with the robustness of the egg, that actually considering egg donation early on when you’re looking at IVF. I mean, it’s a bit different for you Rajeen, you already have a child, but looking at it early on in the processes as a potential maybe if you’re in your 40s. I think obviously, for a lot of people, they want to have their own, see their own genes come through, but I talked about it in the book about epigenetics and so on and other factors that influence a child’s development. And it’s something that a number of people said to me, who are experts in this field of maybe consider egg donation earlier on in the process, you know, maybe not try with your own eggs, if you’re a bit older, I don’t know, Ed, how you think you can…?
Dr. Ed: I think if you’re conceiving and you know, I think you have to understand that…which is obviously really, really very difficult for couples, is that 25% of pregnancies do end in a miscarriage and that’s the difficulty and statistically every miscarriage you have, the more chance you have, of not having a miscarriage next time. We know that from research, but I think the key for me would be how good is your egg reserve at 39. The success rates will go down as you get older, miscarriages do happen as more commonly because egg age goes up and embryo abnormalities are more likely, but the reality of it is you aren’t conceiving and do you want to spend 6000 or 7000 pounds on an IVF cycle?
I think a clinician can guide you much better than on that as to whether it’s the right thing for you because unfortunately, IVF doesn’t have rock-solid guarantees either. And I think that’s the thing we have to be honest about, Jheni said you know 75% of cycles fail and you have to be you know, it isn’t this golden chalice, that maybe it’s purported to be in the media and by clinics you know. I think we are very honest, it is an option for treatment, but it isn’t always the right option for everybody. So it’s there, but think really carefully. But I think, for you, particularly Rajee a consultation with a consultant specialist would help definitely.
Janet: I’m going to have to jump in here, it’s nearly two o’clock, I’m afraid. So I don’t know whether or not we can do one more question but quickly or whether or not we should sort of wrap it up now, sadly.
Jheni: There’s one more from Neelam, just saying, “Me and my husband are trying to have a baby for more than a year, we’ve got our first consultation in a month, how do I decide which option is suitable for us? And do we have to go through tests to know any type of infertility?”
Dr. Ed: So, yes, you will need to have some baseline tests. I think GP is probably the best person to start with helping you with those. We do a number of hormone tests, we do a semen analysis. At a year of investigating, it’s important to investigate both couples. You’ve been trying for a year, so the first point would be to take a history from both of us trying to understand if there are any issues there with the both of you. And then doing some baseline hormone tests, we would look at your gonadotrophins, your FSH and LH, we’d look at your ovarian reserve. Before you can decide whether IVF, ICSI, or UI is right for you, you need to know the sperm quality, and you need to know if the patient’s tubes are working.
So, there’s a number of investigations as well as infection screening for things like chlamydia, but again, any good clinic any good doctor will be able to go through those with you. If you’re self-funding that, the clinics will tend to not bring you in for a consultation until you’ve got a lot of those things because otherwise, it’s completely pointless. And of course, an ultrasound because some people structurally have abnormalities with the womb itself and/or absent ovaries, and so there are lots of things that can affect patients. That is a huge subject, but I think, again, a good consultation with a specialist consultant would help you there massively there Neelam.
I know, Sammy…an old patient of mine, I think I’d say to Menopur and recombinant FSH, both good, and blending the two of those is excellent. My thoughts depend on your age, depends on your AMH, and it depends on the success that you’ve had previously. I tend to follow previous success. When patients come to me and they’ve had success or a baby with using one type of medication, then I would tend to stick with that. But the reality of it is, unfortunately, cycles do vary, each cycle month to month will vary.
Janet: Okay, I think we are going to have to leave it there, I’m so sorry if you have a question that you want to ask, it may be we can sort of let Ed see them a little later and come back to them. But it just remains for me to say a huge thank you. Jheni, thanks so much for sharing your journey, I’m not sure I really like that word, but it is a journey. And as you say it’s a long and it’s a real roller coaster of emotion and physical aspects, thank you for doing that, and thank you for writing such a great book to share with people.
Ed, what can I say, you are a brilliant ambassador for Well Being of Women, clearly a fantastic doctor, we’re so grateful to you both for spending the time today, answering questions and giving people lots of really helpful information. Please, everybody, join us for our next well-being seminar, we’ll have another one coming up next month and we’ll send out details soon. And if you can make a donation, please do, there is a Donate button on our website, just visit it. Thank you, and good afternoon.
Dr. Ed: Bye-bye, thank you.
About Dr. Ed Coats
Dr Ed Coats, Consultant in Obstetrics and Gynaecology and accredited sub-specialist in Reproductive Medicine and Surgery, talks here about COVID-19 and pregnancy. As well as being a Wellbeing of Women ambassador, Dr Coats is currently working as a consultant at the Royal United Hospital in Bath and is co-Founder of Total Fertility, which helps patients understand the fertility marketplace.