Free IVF is under threat in the UK – and coronavirus has made it worse. The need to protect services really is urgent, which is why we’ve dedicated an episode of Am I Making You Uncomfortable? to the topic.
In the podcast, we speak about the cultural, financial and geographical barriers that prevent people from accessing IVF.
It follows a HuffPost UK investigation into the IVF postcode lottery, which found in some parts of the UK, women as young as 35 are told they are “too old” for treatment. Others are being turned away for being single, if their partner has a child from a previous relationship or on the grounds of their BMI.
Coronavirus has only exacerbated these barriers, with thousands facing delays in treatment. The response to the pandemic has, again, been inconsistent; while some clinics have reopened now that lockdown is easing, others remain shut.
Making the situation harder is the fact that IVF is still shrouded in secrecy, meaning some currently facing these challenges may not feel able to speak about them openly in everyday life.
Joining us on the episode is Seetal Savla, who tells us about her fantastic work destigmatising IVF in Indian communities, plus how she is feeling amid her current fourth cycle. We also hear from Sara Marshall-Page, co-founder of fertility and IVF magazine IVF Babble, who shares her own journey and why she’s passionate about creating a community to help the next generation of “IVF warriors”. We hope this episode provides a space for those discussions.
You can subscribe, download and listen to Am I Making You Uncomfortable? on Spotify, Apple Podcasts and all major podcasting platforms and you’ll find a transcript of our chat below, to make the podcast accessible to as many people as possible.
Join in the conversation on social media by using the hashtag #AIMYU – and go behind the scenes by subscribing to our podcast newsletter to hear what inspired us to tackle the topics you’re probably too squeamish to talk about.
Episode 10 Transcript:
Brogan:
Hello and welcome to HuffPost’s brand new weekly podcast Am I Making You Uncomfortable? Presented by me Brogan Driscoll.
Rachel:
And me Rachel Moss. This podcast is a frank honest conversation about women’s bodies, health and private lives. We cover underreported issues and tackle topics you’re too squeamish to talk to your friends about.
Brogan:
This week we’ll be talking about IVF and specifically the obstacles people face when seeking treatment. We’ll be talking to Sara Marshall-Page from Online Fertility and IVF magazine IVF Babble and Seetal Savla who is currently on her own IVF journey.
Rachel:
You can join in the conversation on social media by using the hashtag #AIMYU.
Testimonial 1:
My wife and I have had one IVF cycle and two embryo transfers. The first transfer was to my wife who fell pregnant with twins, who sadly miscarried at 10 weeks and the second was a frozen transfer that I carried, but I miscarried at six weeks. I don’t think I can put into words the life shattering effect these miscarriages had on us. Now, I know that we both feel like mums without babies.
Testimonial 2:
Before I had my two year old son, I had two cycles of IVF one which resulted in a miscarriage. The difficulties I faced in terms of access would have been the fact that it felt like I had to really push to be able to get to that point. Practitioners that I worked with kept on pushing me to use the less invasive methods, even though all my test results were pointing to having fertility assistance treatment like IVF. I would just say that it would have been good to have people talk a bit more about what to expect.
Brogan:
So IVF is an incredibly vast topic that impacts many people in the UK in a variety of ways. Frankly, it would take more than one episode to cover everything that we wanted to talk about. So on this particular episode, we wanted to focus on the situation right now, the barriers facing those exploring or undergoing IVF and how they’ve been exacerbated by COVID-19. Rachel’s been reporting on IVF for a few years now as part of her women’s health specialism for HuffPost. I’m going to be asking Rachel loads of questions in this intro just so that we can kind of get a good overview and soak up all of her knowledge in the area.
Rachel:
Pressure.
Brogan:
Rachel. No pressure, no pressure. Tell us a bit more about what barriers are facing those seeking IVF right now.
Rachel:
So the NHS postcode lottery is probably the big one. It has been getting steadily worse over the last five years. Essentially, it means that some people in the UK can access IVF for free, some people can’t access it at all. When we’re talking about the NHS IVF postcode lottery, we’re really talking about NHS England because in other parts of the UK, the situation is much better. In Scotland and in Wales, IVF is very consistent across the board.
Rachel:
In Northern Ireland, it’s not great. Couples tend to only access one cycle, but at least there’s consistency. People know where they stand. But in England, the situation is really, really dire. And the reason for that is because in England, the allocation of health funding is decided by CCGs. Now that stands for Clinical Commissioning Groups. Essentially, the country is split up into just over 200 CCGs. And ultimately, they decide whether or not to allocate funding to IVF in your area. Obviously, private IVF is available across the country, but it’s really, really expensive. The average cycle costs five grand, it can also go up to seven, eight, nine grand, if you need other treatments on top.
Rachel:
So that option just isn’t available to a lot of people and the postcode lottery can have a really, really devastating impact. As you mentioned there at the start, the whole situation with COVID has just exacerbated the problem that was already there. A lot of people are having treatments delayed or canceled. And again, there’s been huge inconsistencies across the country, which has left a lot of people feeling really alone and really confused. And it’s a difficult thing to go through at any time, so when you’ve got those extra barriers, it just makes it that much harder.
Brogan:
I know you’ve reported extensively on women being denied IVF treatment on the NHS because of their age, which I was kind of really surprised by, perhaps naively. How widespread are those issues? And could you kind of explain them a little bit?
Rachel:
My colleague, Jasmin Gray and I analysed the latest data regarding this in February, which actually, it feels like a million years ago because of the pandemic but actually, it wasn’t that long ago at all. And at the time, we found that there are currently four CCGs in England that offer no IVF at all. Now four CCGs might not sound like a big number but when you consider the fact that each CCG represents over 200,000 people on average, it’s actually a huge number of people that impacts.
Rachel:
For example, my local CCG is Cambridgeshire and Peterborough. So anyone in Cambridgeshire and Peterborough cannot access IVF full stop. Really, that’s quite shocking. But then, as you mentioned, we’ve also got other breakdowns that happen. Age is a big one of them. So the report that Jasmine and I conducted found that there’s 20 CCGs, across England that have implemented age restrictions on IVF, which directly contradicts the official health guidelines set out by NICE and what they’re meant to do.
Rachel:
Women as young as 35 are being turned away and told, “You’re too old for IVF.”
Brogan:
It is so shocking because I’m 32 and me and a lot of my friends the same age as me, quite a lot of us are not really considering having kids yet. And so it’s quite likely that you could get to 35 or 36, 37 and find out that you might need to have IVF or might need some fertility treatment and then find out that, “you’re passed it, love.”
Rachel:
Absolutely.
Brogan:
It’s crazy.
Rachel:
Yeh absolutely. One of the most heart wrenching stories that I heard back in February was speaking to a woman who in her early 30s, she’d gone to her doctor and said, “I’m having trouble conceiving.” And her doctor said, “Oh, it can take a couple of years. Why don’t you go away and keep trying?” She went away and kept trying and came back two years later and in that interim period, her local area had cut IVF. Because she was 35, they said she was too old.
Rachel:
Now, that’s just one story. That’s happening thousands and thousands of times across the country. It’s crazy. And there’s all these other barriers as well. It’s not just age. Another one that I think is a bit of a shocker is: if your partner has got a child from a previous relationship. One woman I interviewed, she got together with a guy who had a teenage daughter with his ex-wife. Because of that, she was not allowed to have IVF even though clinically medically she couldn’t conceive without it.
Rachel:
Another really sad one is BMI. And some CCGs are saying if a woman or a man is over certain BMI they won’t offer IVF. In terms of the dad and sperm, people have said that medically that’s nonsensical. It’s so arbitrary and yet again, it’s something that’s being implemented to basically cut corners and save money.
Rachel:
Another really big problem is the trans postcode lottery. So links to all this is the fact that there is a separate postcode lottery regarding fertility preservation. If you’re a trans person and you want to store your eggs or your sperm to have treatments such as IVF or a different fertility treatment at a later date, depending on your circumstance, that fertility preservation treatment is available to some trans people and not others purely depending on where they live. And it just has such an impact on people’s lives that I can’t stress that enough.
Testimonial 3:
I know very few solo mums who have qualified for funding for IVF. NHS South East London even described us as a burden on society. I think just shows they’re out of touch with families like mine and don’t understand that it’s not what a family looks like on the outside, but love and security that are important to children. And all IVF families tend to give that in spades. There are no unwanted children when it comes to fertility treatment. I understand that the NHS is cash-strapped and desperately underfunded, but calling our family a burden is an echo from a less tolerant era. Having said that I just spent my savings a million times over on making my children.
Brogan:
Well I know that you have expressed to me about how the majority of women seeking IVF tend to be white women as well. So there’s obviously a barrier with ethnicity.
Rachel:
Absolutely. We know statistically that White women make up the vast majority of IVF patients in the UK. That is starting to change a little bit, but really is still dominated by White women. The reasons for that are so complex and there’s a lot of reasons behind it. One of the things I’ve heard from Black women that I’ve interviewed is that they simply don’t feel represented in the IVF community. Other women have told me that religion plays a huge part in some communities too.
Rachel:
I interviewed a Muslim woman last year who told me that she had been diagnosed with fertility problems that made it almost impossible for her to conceive without IVF. But she didn’t know how her family would react to the idea of IVF. She said, “Funnily enough, there’s nothing about IVF in the Quran. I can’t turn to it and say, ‘Is this allowed or not?’” So that was causing another barrier for her and she worried about how it would be accepted in her community.
Rachel:
She was also considering maybe if she went ahead, she just wouldn’t tell anyone. And it’s such a big procedure, a big treatment to have that the idea that someone’s going to go through it in secret is really horrible, as well. We need to talk about these things more in all communities, I think, just to make sure women have that support and have all of the options open for them.
Brogan:
There’s a lot going on there. And I guess right now the elephant in the room is, well not really the elephant in the room, the elephant outside the room, is COVID and how has that impacted IVF treatment and the kind of process or the availability of it?
Rachel:
As you said in the intro, it’s basically exacerbated every problem that was already there. One of the biggest problems has been around communication and consistency across the country again. When I wrote about this, when lockdown was kicking off in March, a couple of women told me they’d only heard about clinic closures during the COVID pandemic through word of mouth. They’d heard other people in the IVF community on Instagram saying, “My treatment’s been canceled.” And it was only then that they called their clinics, sat in a long phone queue and found out that their own treatment had been canceled.
Rachel:
I think most women said we understand that hospitals are under pressure right now, but it didn’t make it any easier receiving the news in those ways. Another big problem in this whole thing was the fact that the European society for human reproduction and embryology, which is a bit of a mouthful, it’s called ESHRE – ESHRE said that women having fertility treatment should pause those treatments as a precautionary measure.
Rachel:
Now, at the same time, there was absolutely no guidance to fertile couples about having sex, about trying to conceive. So a lot of people felt like they had their autonomy over their own reproductive rights taken away from them. And clinics were calling women and saying, “It’s irresponsible for us to continue with your treatment on the basis of that guidance.” And the final thing that happened during lockdown was that private clinics continued to offer services for a lot longer in some cases than NHS clinics.
Rachel:
Again, we knew the NHS was under pressure. In some places that was unavoidable, but it just doesn’t make it any easier for the women at the heart of this when you hear that a woman who can afford it is still having her embryo transfer barred because you can’t, your treatment is on hold. And it’s important to say that services are slowly getting back up and running now. The health services has officially been given a green light across the UK to resume fertility treatment. But again, inconsistencies. Some countries have gotten going faster than others and there’s a lot of women who are still sort of left in limbo not really knowing when their treatments will take place.
Brogan:
And three months is a long time for people who have already been kind of waiting.
Rachel:
Yeah.
Brogan:
And in kind of hope for, what might seem like years - any kind of extension of that. I can’t even begin to imagine how awful that must have been.
Rachel:
Yeah.
Brogan:
You’ve been covering IVF for years now, what has been your experience?
Rachel:
It’s obviously really heartbreaking when you hear women struggling to access services. It’s also really, really lovely and heartwarming when you hear the success stories as well. There are those. It’s important that we highlight those. I absolutely love when case studies from features maybe two years ago send me a quick DM on Twitter and say, “Look, I’ve had a baby.” That’s happened a couple of times and it’s my favourite thing in the world, but I have to say one of the things that has surprised me most about covering this topic and I find completely bonkers is the clap backs you get from some people, the hatred directed towards articles about IVF.
Rachel:
Now almost every single time I write an article on this topic, I will get an email or a DM or there will be Facebook comments that say, “You shouldn’t be promoting this. We need to protect NHS funding. Think about the children with cancer.” It happens every time. That report that I mentioned that Jasmin and I conducted had hundreds and hundreds of comments all along those lines that were on our Facebook page. And if I find those difficult to read, I just think imagine being somebody going through treatment at the moment. It shouldn’t be an “either or” you know? It shouldn’t be IVF or cancer, it should be that we have a health service that helps everyone.
Rachel:
Infertility is a medically diagnosed problem: we have medical treatment for it. If you actually believe in a National Health Service that does not discriminate, IVF has to be on it. There are also a lot of women in same sex marriages or same sex partnerships who use IVF every year. If you think that they aren’t entitled to IVF, I just think you’re a homophobe, like get out of my inbox.
Rachel:
The second comment that I get a lot in relation to IVF articles is that women are delaying motherhood. Women are taking too long. Women just need to have babies earlier. You often get maybe slightly older readers say, “Well in my day, we didn’t wait till we were in our late 30s to have children.” My biggest thing with that is where are all the 22-year-old men lining up ready to be responsible dads? I’m sure there are some out there. I mean, no hate to those guys, but if you look at society on the whole, this is not a female problem. And also, if you play devil’s advocate and you say okay, maybe there are some women who are delaying motherhood because of their careers, you also have to look at why women are doing that. We do not have workplaces that are set up to support young mothers. We don’t have creches on sight like a lot of European countries. We know that childcare costs a fortune, we know that our generation, millennials, are renting and in house shares. It’s really difficult to actually have a child at a young age in 2020.
Rachel:
So again, women aren’t the villains here. Look at the wider problems, stop poking women with the stick and actually talk to your MPs to sort out society first. It winds me up a lot. You can probably tell.
Brogan:
No. I really enjoyed it, to be honest.
Rachel:
Where do we go from there?
Brogan:
I don’t know.
Testimonial 4
I think the thing that surprised me most about IVF is when it didn’t work, it really emphasised and enhanced all of that blame and guilt that I already had towards my body and I would say to anyone that I wish I’d spoken to more people about it, but I just carried on. And I wouldn’t even talk about it. It was almost like it was a different me that was going through all of it. Something that I would say to anyone that’s going through that journey is that I would talk to people about it, I would try and be more open with it because I do find that doing that would really help deal with that post IVF journey, whether it’s a negative or it’s a positive journey. Despite all of that and two years after we finished our third round of IVF. We actually adopted a little boy, a beautiful little boy and he’s an absolute dream.
Testimonial 5:
I was diagnosed with breast cancer when I was 33 years old, and a couple of years later, I felt the effects of an early menopause and infertility. By the time I was 36, I’d been diagnosed with acute heart failure and the two diseases together left me unable to carry a pregnancy. I’m a mum to a little girl, Amala, who is now two years old and born through surrogacy using embryos that I’d created prior to chemotherapy.
Brogan:
So today, we’re joined by Sara Marshall-Page the co-founder of online fertility and IVF magazine, IVF Babble. And she’s been through IVF treatment herself. Welcome Sara. Can you tell us a bit about why you and Tracey Bambrough set up IVF Babble and what you hope to achieve?
Sara:
Yeah. Well basically, we’ve both been through IVF separately. My journey was quite a long time ago. It was 10 years ago now and Tracey’s was five years ago. And 10 years ago, everything was a lot different. There weren’t really any resources for patients going through IVF. There weren’t any support groups or Instagram or Facebook or anything like that.
Sara:
And as a result, no one was really talking about it. All I would do was go to my appointments with my doctor. I’d sit and I’d nod and I’d listen and not really hear what they were saying and just go home and do my injections and crack on. And as the time went on and as I kept failing in my IVF, I became more and more isolated, more and more alone because everywhere I looked there just appeared to be pregnant women. And friends were getting pregnant all the time. And then it would get to a point where friends were apologising for even trying to conceive. And then it’d be like two months later, “We’re pregnant.”
Sara:
And so I sort of became this recluse. I shut myself off. I didn’t talk to anyone. And for the four and a half years that I was trying to conceive, they were honestly the most miserable four and a half years of my life. So for me, my journey was more about the isolation and the not having the support. Tracey, her journey was more about not understanding why she wasn’t conceiving. She had so many things wrong with her and nobody diagnosed her properly. She didn’t know about these tests, she didn’t know who to go and question. And what to say to the doctor, “Hang on, what about this? Could I have this?”
Sara:
And so her journey lasted forever. I think hers was about 10 years. And so eventually, we finally did get there and we both now have twins.
Rachel:
So lovely.
Sara:
Aw. And honestly, we still pinch ourselves. And we said, “Why don’t we try and create something we wish we’d had? Why don’t we try and make sure that nobody...” I mean, IVF is going to be hard, no matter what, but if we can do something to at least make that journey just that little bit easier, then let’s do it. And so that’s what we’ve done. We’ve created something we wish we’d had.
Brogan:
No, that’s really lovely. That’s so... I mean, thank you for sharing your story as well. It sounds like it was incredibly difficult, but so powerful that out of experience, you’ve decided to help other people going through a similar situation. Is there anything, any kind of common things that you try and kind of address with the IVF Babble?
Sara:
Well, first of all, the two main things that we offer patients and readers is expert advice from the doctors, from the fertility experts because what we don’t want to do is try and get that patient to patient guidance. So it’s patient-expert guidance, and then it’s patient to patient comfort.
Sara:
So we encourage our readers to write in with stories or experiences, but we never say to people, “Listen to her because... Follow what she’s done.” We don’t want that. It’s “listen to the experts and take comfort from others.” There are common themes running through. Obviously, you’ve got your infertility causes. There’s quite a lot of those. And then you’ve got... Age is a massive, massive thing for women going through IVF. And then we get all sorts of emails from readers who have been denied free IVF with the NHS which is always so hugely heartbreaking. I was very lucky I got three rounds of IVF on the NHS.
Brogan:
Yeah. Rachel, we were talking about that earlier, weren’t we Rachel? A lot of Rachel’s kind of work has been exploring that and how that’s being cut over the last few years as well. As you say you have women writing in to IVF Babble. Do you have advice that you could share on the podcast today for women who are encountering such barriers through the NHS?
Sara:
Sadly, when it comes to things like being denied free IVF because of your partner having a child or your age, when it comes to the NHS, you’re stuck with those guidelines. There’s nothing you can do. Really your only alternative is to look at other ways of funding your IVF. And that is a massive, massive barrier. But there are alternatives.
Sara:
I mean, sadly, the only ones that involve no cash are very, very few and far between. Like grants, like the free IVFs that we give away. But if you head to IVF Babble, there’s all sorts of categories in there. And there is one just for finding out how you can afford IVF and the different ways that are available to try and cover the cost. But sadly, you will have to find some money up front, whether that be through loans or family members or... We’ve even heard stories from people that have crowdfunded, auctioned things off, anything.
Sara:
But the other sad reality is that IVF very rarely works the first time. You have to really, really think about how much this is going to cost you. And a lot of the times when you look at clinic prices, it doesn’t even include all the tests, all the drugs. You have to really get your head around, how much is the medication, how much are these tests going to cost me? That PGS test over there, that’s really, really key for a woman of my age, for example. How much extra is that going to cost? So put it all together and then talk to your consultants about what are the real chances of this round working first time.
Rachel:
Absolutely. And when you do find the right path for you, there can obviously be so many happy outcomes. It’s important that we say that IVF isn’t a guarantee of a baby. But at the same time, that hope I think keeps a lot of people going and you’ve got such a lovely story. You’ve got twins now. How old are your twins?
Sara:
They’ll be 10 in November. They’ll be 10 in-
Rachel:
Wow. 10 in November.
Sara Marshall-Page:
But what is so sad is that I went in thinking it would work straightaway. No one said to me, “Do a bit of research first. Just be realistic.” So when that embryologist phoned me and said not one egg had... Basically, the sperm have not even touched the egg. I just saw, “What on earth is he talking about?” How could it not work?
Brogan:
That was the first round, was it?
Sara:
Well, I’d had two IUIs which is really quite gentle. It’s basically they just wash the sperm and put it back in you. So two rounds of that and then IVF which is the dish with the egg and the sperm in and you’re just waiting to see if that egg’s going to penetrate the egg. Well, that didn’t. And then finally I got through to ICSI, which is when they actually get hold of that sperm and shove it in that egg, basically.
Sara:
And again, I got... And because I was on the NHS, which is wonderful because it’s free, the only downside with the NHS is you have to wait forever. And so this was such a really, really, really long process. And I finally got to this failed IVF cycle and I sat in the consultant’s room and he goes, “Yeah, do you know none of that was really going to work actually. So let’s try ICSI.” I’m like, “Well, why have I just done all that all that?” And he said, “Well, it’s a process we go through, but...” Which I’m sure it is, however, had I done my research, I probably would have said to my consultant, “Can we just not bother?” To which he might have said no, but at least I would have... Looking back I just wish I’d had that chance to just have that conversation. It’s just about going into IVF with your facts and you doing your research and being real.
Rachel:
With your kids. Now, I understand that you’ve started to talk to them about IVF. Can you tell us a bit about that?
Sara:
Yeah. Well, I never wanted... It’s so weird. When they were born, I said to my husband, “Please don’t tell anyone they’re IVF babies,” because I was so ashamed. Honestly I was so embarrassed I just didn’t want to know. Because still no one was talking about it. And then, when we started IVF Babble, I suddenly felt, “Oh my god. No, I am proud that I worked so hard for these girls.” IVF Babble has become so all consuming, the girls were like, “Mommy, what are you doing?” Because my other job is I work in television. So they’re used to me doing my TV job and then all of a sudden I’m deep in articles.
Sara:
And so I explained to them that not everybody can have a baby very easily and so I’m helping and I said, “That’s what happened with mommy and daddy. We needed some help from the doctor.” And I did this long speech and they were like, “Oh right.”
Rachel:
Kids just don’t care, do they? It’s brilliant.
Sara:
It’s so amazing that we can have these conversations with children that are so young because IVF has come so far and it’s just... Things like freezing our eggs, it’s just a normal way of life now for so many. And that’s why their reaction was just to be like, “Okay, cool.”
Rachel:
We have a question that we ask all of our guests at the end of their segment and that is: what makes you uncomfortable?
Sara:
In what scenario?
Rachel:
Oh, it can be anything. So we’ve had pantomimes, awkward silences, small talk.
Sara:
I don’t mind an awkward silence actually. I quite like a silence. I’m quite... I just think: just be cool. I think one of my things is being put on the spot when it comes to stats and things like that. When I’m put on the spot and people are asking me for stats and things, just about anything, I’m really good at talking from my heart and talking on behalf of other people that have shown me their heart and talked about stuff but when it comes to stats, I’m just like, “Oh, God.” That’s definitely in my boo-boo bin.
Rachel:
I hope we didn’t make you too uncomfortable today. Thank you so much for joining us and sharing your story.
Brogan:
Thank you. It was so great to have you.
Testimonial 6:
I’m 25 and I’ve been diagnosed with polycystic ovarian syndrome as well as two blocked fallopian tubes which I have had removed. My husband has also got a morphology rate of less than 1% and sperm DNA fragmentation. The only way that we can get pregnant as a result is through IVF and ICSI which was actually removed from NHS Services in 2017, meaning that we have got to privately fund this. There’s only a one in three chance of IVF actually working and so this has had quite a big impact on our mental health. Infertility is a form of grief. And I think quite often your friends and family don’t really know what to say to comfort you and sometimes end up saying the wrong things which only actually make things worse. I think on top of that, the impact it’s had on our finances is huge. Obviously, every time that we try for this, we’re looking at about 8,000 pounds and unfortunately, we’re not a never ending pit of money. So it’s an added stress that you really don’t need in a time like this.
Testimonial 7:
The strain that IVF and infertility places on someone is enormous. The mental health impact I’ve had over the past six years is something I never expected to happen to me. The isolation, the loss of identity, feeling incomplete as a woman. Infertility being overlooked by so many as a medical condition. The hours, days, weeks, months and years waiting for blood tests, scan results, phone calls. I don’t know who I am anymore without IVF and without this label and in many ways the Covid lockdown has helped because I can stay at home and hide away from the world.
Brogan:
Now we’re joined by Seetal Savla, who uses her blog Savlafaire and social media to talk about IVF and fertility. Through her work. She hopes to destigmatise infertility within Indian community and talk about her own experience. Thank you so much for joining us to tell your story. We’re really pleased to have you.
Seetal:
Thank you very much for having me.
Brogan:
So you’re going through your fourth cycle of IVF right now, is that right?
Seetal:
Yes, that’s right now.
Brogan:
Can you try and put into words how you’re feeling right now?
Seetal:
It’s a really strange time because we’ve had so much go on in the world since we started our cycle back in February. So Coronavirus at the top point was escalating rapidly and there were just scary headlines around the world on a daily basis. And so we knew that we’d be affected by it and we tried to prepare ourselves mentally and our clinic as well, they really were fantastic from the outset, just setting and managing our expectations too. But it’s still bitterly disappointing when you get the news even though you know and you expect that you’ll be affected in some way, especially when it’s your forth cycle and you’re both approaching 40. And you just really, really want to have a biological child and time is sort of slipping through your fingers.
Seetal:
So there’s that anxiety, there’s fear. And now with hindsight, we’re only delayed by a month, which is nothing really and I’m so grateful because I know that some people are still waiting to hear from their clinics or their funding has been affected by it. They’re no longer eligible. So we’re in a really strong position now to have gone ahead with our frozen embryo transfer last week and hopefully we’ll get a good result. But it is scary.
Rachel:
We’ve got everything crossed for you. I really do hope it all works out. Can you talk us through your journey and how you’ve got to this point?
Seetal:
I guess it all started about four years ago when we had a surprise natural pregnancy which unfortunately ended in a miscarriage. And that was absolutely devastating. But it did make me realise a couple of things. One that I really wanted to have children, and then two, that I’d been married for eight years until this point, so it was our sole pregnancy. Clearly, there were some issues that we needed to investigate a bit further. So it was sort of a catalyst to be a bit more proactive on our side. And then over the course of a year we went to our GP, undertook various tests and the initial diagnosis that came back was unexplained infertility, which is just so frustrating because you get no indication about what the issue is and how to deal with it.
Seetal:
It later transpired that I have a low ovarian reserve, so it makes it harder to get pregnant but not impossible. And so then we embarked on our first round of IVF with the NHS and since we didn’t qualify for a second round of funding because I didn’t produce enough embryos to freeze, we would have had to pay to have further treatment. And at that point, we thought well, we’ll go down the private route and we took some advice from friends and family who’d had success at a central London clinic.
Seetal:
We didn’t unfortunately, we went on to have two gruelling, intense rounds there during our debrief with our consultant. They mentioned donor eggs for the first time, that that might be a possibility and a good idea worth exploring. Unfortunately, they only work with known donors. So we would need to bring someone who was aged 35 or under and then also have had a child or children before, and we didn’t know anyone who fit that bill. And we felt uncomfortable asking a friend or a family member to do that anyway, because you’d have to take the drugs and have counselling and it’s a very long process. So it’s a big ask.
Seetal:
And then we swapped clinics at the beginning of this year to do our fourth cycle to allow ourselves the option of having a fresh cycle and also an anonymous donor cycle. So the current one is with my own eggs. And it’s going well, so far. Hopefully, we do get the positive result that we’ve been dreaming of for a long time. But yeah, we have to do a bit more waiting. The dreaded two-week wait.
Brogan:
So IVF is really underreported in the media and few people feel able to talk about their experiences publicly. Even then, I guess a lot of the voices that we hear from are White women. As a woman of South Asian heritage, you want to change that by sharing your story which is really admirable and powerful. Can you tell us a little bit more about this?
Seetal:
I think the crux of the matter is that South Asian communities are patriarchal societies. And so anything to do with women’s bodies, whether that’s periods, infertility, breast cancer, menopause, its just really difficult to discuss. When you do, it’s awkward and embarrassing. And if you bring it up, you’re made to feel maybe a bit guilty and a bit dirty and that it’s something to be ashamed of. And so that stops people from talking about it, I think. You’re afraid of the judgment of others, being the subject of idle gossip among the community and maybe bringing shame on your family as well just by talking about something that isn’t your fault, but it really is that much of a taboo unfortunately, even in 2020.
Seetal:
It’s funny because as soon as you get married, you’re sort of bombarded with all these insensitive and offensive comments and questions. And if there’s an issue, there’s no one there for you. You’re met with a wall of silence. And it makes it really difficult to open up about it because it makes you feel more isolated and more ashamed and more of a failure basically. I just feel like a big fat failure for not being able to conceive like so many of my friends and family are seemingly able to do very easily and it’s something you’re meant to be able to do biologically and naturally.
Rachel:
When you started talking about your own experience, I know you did it on your blog and then you wrote a great piece for HuffPost as well and we spoke before, what was the reaction like among friends and family at that point? Particularly people who didn’t necessarily know this was going on and then suddenly you started speaking about it in a very public way? What was that like?
Seetal:
For the first couple of cycles, we didn’t talk about it apart from close friends and family on both sides. Just because we were deep in denial about the fact that we needed to seek fertility treatment and trying to go through the motions, process everything in our own way. But when we did talk to people, there was some understanding because we’re not the first ones in our community to go through IVF. There haven’t been any negative comments actually. There’s been nothing but kindness and compassion. And I think a lot of the time when people do say offensive things, it does come from a good place.
Seetal:
They don’t mean to hurt you. It’s not malicious. It just is a lack of understanding and awareness. And I hope that by speaking out about exactly what’s involved when you go through gruelling IVF round after round, and each one is unsuccessful, that it makes people sort of think twice before they say things And it could be an innocent question like, “Oh, when are you having babies?” Or, “Why are you taking your time and your career can wait?” Etc. But if you’re trying and nothing is happening and you haven’t been open about it, it’s sort of like poking you in a deep wound really, rubbing salt in it. It hurts a lot, because you are trying to do something. Just trying to have a positive mindset and meditation I have found helps me at the moment, it’s something that I was quite skeptical about. And acupuncture as well. But for this cycle, I’ve been doing that and it has helped actually.
Brogan:
What are some of the things that you wish you had known before undergoing IVF treatment that would maybe help other women to have a more positive experience?
Seetal:
I think the one thing that I wish I’d known is just how much support and how many valuable resources there are out there, that you don’t need to feel like you’re the only one going through this really difficult situation and battling infertility by yourself. So after I wrote my blog post, I was just inundated with so many kind compassionate messages, a lot of support, just thanking me for speaking out and especially from the Asian perspective because we do tend to keep it so quiet. So it gave people a lot of solace and comfort - from strangers as well, which I think is the most incredible thing that they feel that they can open up about something that is extremely difficult.
Seetal:
For me one thing that’s made a difference as well is the Trying To Conceive community on Instagram, the TTC community, as they call it and it was a lifeline that I discovered after my second cycle failed. I don’t know how I came across it. I was probably going down the Instagram rabbit hole with a hashtag or something. But for the first time, people were speaking openly about their fertility problems from all angles and it was just so refreshing. It was normalising the conversation and I felt less alone and less of a failure. And the most important thing is just to talk, to confide in someone whether that’s a stranger or a therapist or just so long as you’re not bottling it up. If there’s a close friend or family member who can listen and not give you unsolicited advice, like, “Just relax,” or, “Go on holiday.” Or those fertility success stories that you hear all the time. Your neighbours who went through five rounds and gave up and then they got pregnant naturally, how lucky?
Rachel:
Eat more blueberries. Oh, go away.
Seetal:
Oh, no. Wait a friend of mine the other day actually, she told me something which I almost fell off my chair when I heard it. She said that she was advised to sit on her sister-in-law, who had recently had a baby’s bed, eat some Indian sweets and then that would make her more fertile. It’s just nonsensical.
Rachel:
What? Wow.
Seetal:
Makes no sense.
Brogan:
Great that you’re using your platform to kind of spread that message and to allow other people to open up as you’ve said. It must be really lovely to have people sharing their stories. We ask all of our podcast guests the same question to round up the interview. And that is what makes you uncomfortable?
Seetal:
I’ve been talking about infertility and IVF for about a year and a half now, so not much but still there are awkward moments. So if I’m having a scan for example, a trans vaginal scan, with an attractive male doctor, which happened to me when I had my fallopian tubes tested last year and also more recently with my current clinic and it’s just really embarrassing because you’ve got your crotch in their face and you’re trying to make conversation. You’re cringing really.
Seetal:
And I wish that they had something on the ceilings during the procedures and these routine scans, just even if it’s a piece of artwork or ideally a mini aquarium. You can just take your mind off it and talk about that instead. But I’m lucky in my clinic, they’re quite laid back and we have a really good rapport so it’s fine but it has been just excruciating previously. So you’re just kind of staring at cracks in the wall.
Seetal:
But even though I’ve been talking about all of this for some time now and I can discuss it with a sense of detachment and with a bit of humour, it’s still quite painful and I think birth and pregnancy announcements still get to me. Depending on who it is, of course, but if it’s someone who’s close to me, it’s really difficult to hear. I always say to people that obviously you have to inform them but if you can just drop them a text message beforehand, give them a chance to get their head around it, evacuate all those negative emotions because they’ll be there. You’re happy for them but you’re sad for yourself, because you’re trying everything to have a baby and it’s not working. So you’re angry and frustrated, jealous as well, maybe a bit of bitterness in there thrown in for good measure.
Seetal:
You just want to get all of that out of the way. And it’s natural and it’s normal to feel those things, I think. And then just go back to them and be happy. And it’s great, especially if they haven’t had to go through IVF or any kind of fertility treatment to get there because you don’t want anyone to suffer in the same way. So that still sort of affects me I think.
Rachel:
I think that is why it’s so important that we’ve got people like you talking about it. So for anyone else listening, who’s feeling the same, they know they’re not alone and it doesn’t fix things, but hopefully it takes the sting out. That tiny bit makes it a tiny, tiny bit easier. Thank you so much for joining us today. You’ve been brilliant. We really appreciate you sharing everything with us so honestly, thank you.
Seetal:
Thank you very much for having me.
Brogan:
Thank you so much for joining us. It was really great to hear your story and I’m sure that a lot of listeners will agree it will have been given them a lot to think about.
Seetal:
Thank you very much for having me. And I’m happy for anyone to contact me as well. savlafaire.com and it’s the same handle, savlafaire, S-A-V-L-A-F-A-I-R-E on all social media channels.
Rachel:
Beautiful. Thank you. And we really do wish you all the best of luck with this current cycle. I really, really hope it all ends up okay.
Seetal:
Cheers.
Brogan:
That’s it from Am I Making You Uncomfortable this week. I’m Brogan Driscoll and you can find me @Brogan_Driscoll.
Rachel:
And I’m Rachel Moss and you can find me @Rachelmoss_. This podcast is produced by Chrystal Genesis. Our assistant producer is Rachel Porter. And our sound engineer is Nag Kirinde.
Brogan:
You’ve just listened to Am I Making You Uncomfortable and the hashtag is #AIMYU.