Older women and the challenge of IVF

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1:26World Service. In BBC Conversations, we bring people together to share their experiences. This time, women discuss the physical challenges, heartbreak and guilt of failed IVF treatment in later life. On the 25th of July 1978, a baby was born, one of many that day. But this one was different. This one changed fertility medicine forever. Louise Joy Brown had been conceived using IVF, in vitro fertilisation. Since then, an estimated 13 million children around the world have owed their lives to IVF. Now though, new research suggests that women in their late 40s face a much lower chance of fertility treatment working even when they use younger donor eggs.

2:17Later, we'll hear from three doctors who specialise in fertility treatment. But our first conversation is with women who've each tried to become mothers through fertility treatment, ultimately though without success. Dee is in Dublin. Jackie and Lana are in the United States. Lana began by describing the experiences that led to her seeking medical help. I was 35 when I got married and up until that time I just assumed motherhood would be part of my story. I just thought when the time came right and I met my husband, that things would start to fall into place. But at age 37, I was diagnosed with something called unexplained infertility.

2:59And I think that was probably one of the most jarring starts to finding out that you needed assistance because I felt like the medical system didn't really have a clear map ahead for me. But despite that, my husband and I decided to start pursuing treatment. We started with IUIs, the intrauterine insemination. And after several attempts of that, we made the decision to move on to IVF and did some IVFs here in Chicago and never once had a positive pregnancy test and took about a year and a half break and then did some research and moved on to a clinic, gosh, about a four-hour plane ride from where we live and did some remote IVF there because it had the best reputation.

3:48And we thought, if we're going to do this again, I was in my 40s. We knew our chances were slim. We wanted to go to a clinic that had a great reputation. But despite having the best doctors and the best clinic, I again never once had a positive pregnancy test. At what point did stopping seem like the right decision? Well, I don't know that it ever felt like a right decision, but rationally, I was 44. I had only one frozen embryo through this whole journey that at the end, we decided to get tested to see if it's worth implanting. And we were told that it would never result in a full-term pregnancy.

4:34And at that point, we had to look ourselves in the mirror and just be honest with the fact that our goals for parenthood at 44 weren't the same as they were when I started this journey at 37. And the friends that I thought I was going to raise children with were already moms and kids were already in school. My niece and nephew were older and I just had dreams of my kids having cousins their age. And I just had to reassess the milestones that I dreamed of exploring just look different in my 40s. And my reproductive endocrinologist had a very frank conversation with us and said, you can continue if you want to do more rounds, we'll support you and continue that journey, but you'll likely expect to have the same outcome.

5:26And it was really the thing that made us stop and decide that this is not going to be something we're going to continue to do. What kind of care did you get afterwards? None, nothing. And I think that was probably the hardest thing to digest because it was a loss of a vision for my future. And I thought, gosh, you know, maybe there's no one else that goes through this. Maybe everyone else figures out this pathway to parenthood and I'm the only one. And maybe that's why they don't have resources. Maybe that's why they never picked up the phone to call and ask, how are you doing? Can we refer a therapist?

6:10There's something that we can offer you. But when I heard nothing, I just assumed nothing existed because patients never ended up like me. And of course, it turns out you were not alone. I want to turn to Dublin and to Dee Dee, you'll listen closely to what Lana's had to say. I wonder what you'd like to share of your own experience, please, Dee. Yeah, and I just want to firstly say thank you for having these conversations. They're so important. But yeah, so my journey, we started trying for a baby at 41 and we did get pregnant naturally. But unfortunately, it ended in miscarriage and recurrent miscarriage.

6:46So we were getting to the eight weeks, the 12 weeks, and then we would hear the words. so many have heard in the scan is that I'm sorry, there's no heartbeat. We went from GP to consultant to fertility clinic and they said, OK, we recommend IVF. So I was probably 43 starting IVF, multiple cycles, and we didn't end up with a pregnancy. We ended up going down the donor route as well. And we did fall pregnant again in 2024, but it ended up with another miscarriage. and along the way my mental health was really suffering after loss after loss after loss and Lana mentioned the lack of support it's like no counselling offers nobody checking in how are you doing how's your partner doing you know there's a huge lack and even with you feel like you're surrounded by lots of people family and friends but there can also be a very lonely journey because a lot of people don't know what to do or say or how to support and you know I had some amazing people along the way and some amazing nurses who did but overall there is very much a feeling of loneliness it's a really tough journey and you know I feel I'm really glad to have this conversation because you know we hear when it works but often we don't hear when it doesn't work and we need support as well.

8:05Dee thank you so much Jackie you've been listening to Dee and to Lana please tell us what you can of your own IVF experiences. I started IVF in 2015 and we got three embryos. We transferred two of them. One took, but I miscarried. And then a few months later, we transferred the third embryo and it didn't take. And the experience of that was pretty awful for me, so much so that I didn't want to go through any more IVF at all, both because of the experience of the hormonal medications and then also because of the loss. I had made a friend who was also experiencing infertility. And she discovered something called mini-STEM IVF, which is minimal stimulation.

9:05And the idea is that they give you lower dosages of the medication and supposedly it will kind of call forth the strongest eggs. And it's also a more gentle experience for the woman undergoing the medications. And so last year, and I was 43, we did our first round and no viable embryos from that. So I find out no embryos and then immediately have to start medication for the next round. And again, one egg and it did not fertilize. And the agreement that my husband and I had had was that we would exhaust his fertility benefits through work, and then we wouldn't be doing further cycles past that.

9:57And I naively had believed that it would just work the first cycle and it would be great. I just really believed it would work. And then it didn't. And then I was shocked. And then there we were. But I hearing, I mean, I know bits of Lana's story. And one of the things that I could relate to was her saying that after a certain number of years passed with infertility, it is a different experience because you have gone through so many hopes of, oh, my kid's going to be the same age as my cousin's kids or my friend's kids or whatever. And so I also experienced that change in goals. And I was about to turn 44.

10:44And so with mixed feelings, we're done trying. Yeah. You know, I think also too, there's this feeling that I carried for a long time that I let my husband down, like because of me, he couldn't become a dad. My in-laws, I was, you know, their hope for being grandparents. And when I couldn't figure out how to get pregnant and have a child, I felt like I was letting them down too. And, you know, I really think in my marriage, I carried a lot of the guilt because it was me who had the infertility diagnosis. There was a time where I stayed silent and I didn't talk about it to anybody because I was just so worried about people giving me suggestions or telling me about a miracle story of somebody who stopped and then they finally got pregnant.

11:40And I'd love to know if either of you have ever experienced that. Yeah, Lana, I'll jump on that one there. I don't know if it's for you guys over there, but here in Ireland, if you fall pregnant, it's like the unspoken rule. Don't tell anyone until you're 12 weeks in case, you know? So like we told nobody that we were pregnant and we've never had that experience where we were able to share a pregnancy. We've only been able to share a loss which is heartbreaking we stay silent because because I didn't want anyone to know we were pregnant because I don't want them to know we're trying because it's the expectation of oh you're trying are you pregnant yet you know it's that expectation and then also the whole thing of staying silent with my first loss it was like I couldn't I didn't understand it how was I supposed to feel how how do I talk about it because the doctors didn't help me like kept everything to myself for a while right but what happens then is it builds up inside and then the more it's not happening the more it's building and the frustration and the grief and the sadness that's how I felt anyway and then eventually when I did share and I shared We got pregnant again quite quickly, but we miscarried three months later.

13:00I felt I needed to shout it from the rooftop because I was so angry at the world. And I shared it on my Instagram. And the amount of people that replied, friends and colleagues that I didn't even know how to miscarry because everyone keeps it quiet. We told very few people about our rounds last year. the worst thing about it is then having to like if you want to let people in on your experience and kind of what you're going through and maybe guide them around how to interact with you about it you have to share the story which sometimes you have energy for and sometimes you get skilled at doing it in a way that is not emotional or upsetting, but that's a whole level of emotional labor unto itself.

13:54I think people don't know what to say. And what happens is that they might say nothing because they're afraid to upset us, you know, and some not so helpful things have been said to me. And for me, it was, well, at least it was early. At least you can get pregnant Yeah. Or like that one as well. At least, oh, at least you don't have kids. You don't have to worry about doing the homework. And like I'd be sitting there going, I'd love to do homework. I'd love to have sleepless nights. You know, one of the most important things or most really helpful things to say is just say, I'm sorry. I'm sorry that you're going through this.

14:29What do you need from me? Or if you don't know what to say, I really don't know what to say. Only I'm sorry. but it's I think like having these conversations is so important and I'm sure Jackie you relate to because the more we have conversations the more we help people understand and the more we can help support people going through it. Dee, Lana and Jackie with their thoughts and insights on unsuccessful fertility treatment we are grateful to them. I'm James Reynolds you're listening to the documentary from the BBC World Service.

15:32arrive in under 20 seconds. Join millions saving billions on hidden fees. Be smart. Get wise. Download the WISE app today. T's and C's apply. That new research on the likely success of IVF treatment was carried out by scientists at the Assisted Reproduction Medical Institute in Italy. That research suggests that pregnancy rates decline markedly after the age of 49, whilst the chance of miscarriage increases. Significantly, this is still the case if the donor eggs are from a younger woman, challenging the idea that donor eggs can fully reset a woman's reproductive clock. For our second conversation, we brought together fertility doctors working in different parts of the world to get a sense of the issues that they face.

16:24Dr. Ashraf Sabri is in Egypt. Dr. Anshu Dad is in India and Dr Cindy Duke is based in the US. Some women come in and they're already pretty clear on what options they're willing to try versus not. So we start there. We do talk about that reproductive window and what the realistic chances are based on results for her. So age, of course, is the biggest determinant of success, but other factors play a role. So that includes what we call her ovarian reserve. That is how many eggs does she have remaining? What are other underlying health conditions that may further worsen her chances, such as things like endometriosis, prior surgeries, prior treatments like chemotherapy or radiation.

17:14And then lastly, whether or not she's interested in some of what we call more rejuvenative therapies, which are therapies that may help the ovaries perform better, not necessarily create new eggs, obviously, but to help them perform better. So we cover those discussions and, of course, the possible use of eggs from someone younger, which is called donor egg. And on that point, new research has suggested that older women, even if they use young donor eggs, would still face a marked drop-off in their own fertility. What is your medical analysis of that research? You know, I looked at the study and overall, the findings are helpful for guiding the conversation with patients.

17:57But again, like I said, what you have to factor in are other things about that woman's health. So I can tell you the oldest woman I've been able to get pregnant with donor egg is 56 years old, right? And so I think it's really about how you have the conversation with the patient, being very honest about her evaluation. We'll turn to Dr. Anshu Dar. What do you make of the new research, doctor? So it's a kind of retrospective study, which does not provide the most accurate evidence. Even though, yes, it has shown a kind of association between the uterine aging and the reproductive outcomes, on the basis of one singular research, it would be very difficult to give a blanket statement that for every patient who has crossed a certain age limit, like 49, the reproductive outcomes are always going to decrease with donor eggs because this is the population in which we are able to practically achieve a very good pregnancy rate for donor eggs.

19:02Dr. Sabri, you work in Cairo. Can you tell us how routine IVF is where you are? First of all, I would love to say that I come from this part of the world where the majority's religion dictates the government laws and we don't have donor eggs allowed is forbidden in Egypt and all of the Arab countries. When I started IVF, it was like 2007. From 2007 to 2015, talking about IVF was a bit tabooic, like concept or talk, where people who went to IVF, They used to hide the thing and never talk to their families about it. But since 2015 and the increased level of social media, there has been a rise of groups that talk about this and there has been a rise of people who come asking for, if naturally and publicly and in the open in front of their friends and their family.

20:02It's like I'm watching a shift in trend. How are things in India? I would not say that the acceptability of IVF is that great. But in the past five or 10 years, we have seen a tremendous change in the attitude of people towards IVF, especially in the urban areas. Rural areas, I think still there are many people who consider it as unnatural. But see, even if you have a very clear cut indication for IVF in India, the first choice for a patient would still be to try some other method of treatment where they do not have to go for IVF. What is especially still taboo and absolutely requires more awareness is around the impact of male fertility on these conversations.

20:51People assume men have no changes as they age as it relates to their fertility. We now know that is not the case and there are a number of changes that happen even in how sperm is made and how it functions. And so in many cultures, no matter where we are, that's another huge problem that we're trying to overcome, which is encouraging families, men in different cultures, different religions to remember that when you talk to a couple about fertility, the burden isn't all supposed to fall on the woman, though culturally it usually does. And so we do need to raise that part of the conversation since 50 % of the time, the fertility issues involve something including the men.

21:32Dr. Duke, we've spoken to three women whose own fertility treatments were not successful and what came out from several of them was extra heartbreak caused by a lack of care afterwards. So when you have patients whose treatment does not go well, how is looking after them afterwards built into their care? You know, that's a really interesting and evolving part of the conversation. We do know that the psychological impact of unsuccessful treatment is lasting. We know that for some patients, it's almost like a post-traumatic experience. And so we are working harder on incorporating, even during treatment, encouraging patients to seek counseling, work with counselors, work with coaches.

22:19But that has its own taboo tied to it. For some people, they wouldn't want their family members to know or even their partner to know that they're requiring this sort of emotional support system. Some clinics do have psychologists in the system or social workers within the system for whom that level of follow-up also exists. But I'll also be honest with you, for many patients, they are the ones who discontinue their conversation with the clinic before even learning if all options truly were exhausted. The private clinics, which most or maybe nearly all of the Egyptian IVF patients go to, they lately started to employ a psychiatrist or a psychological helper.

23:04My personal hospital, we lately had this one employed in the role of giving support, but it's still not accepted. And as Dr. Duke said, most of the patients do not continue talking to the psychological helper. Plus, psychological help in Cairo is a big taboo. It depends a lot on the care provider, the clinician. We are not only doctors, we are the counselors for the patient. And during the course of their journey, at every step, I think it is our duty to counsel patients that infertility treatment is something or IVF treatment is something which can go either ways. It can be successful, it can fail.

23:45And sometimes in the least expected of patients, sometimes the treatment fails. So I try to detach the people from the fertility treatment and I tell them, when you are taking treatment, please come to clinic, discuss all your doubts. Whatever questions you have, you ask me 1000 times, you ask me 1 million times, but don't take this burden home. The truth is around the world, we spent a lot of the last three decades encouraging and teaching people how not to get pregnant. Yes. And so we really do have to work, all of us, on now re-educating people about the fact that reproduction, there is an aging evolution in men and women, and to also raise awareness about the entry-level treatments that can really actually help people avoid the need for IVF if we are able to engage and have broader touch points.

24:38Dr. Cindy Duke there in conversation with fellow fertility specialists Anshudar and Ashraf Sabri. Our thanks to them and to Jackie, Dee and Lana for sharing their very personal experiences this week. I'm James Reynolds. You've been listening to the documentary from the BBC World Service.