SART Fertility Experts - IVF: Cycles of Hope and Heartbreak

The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and SART. These podcasts are provided as a source of general information and are not a substitute for consultation with a physician. Welcome to SART Fertility Experts, a podcast that brings you discussions on important topics for people trying to build a family.

Our experts are members of SART, the Society for Assisted Reproductive Technology, an organization dedicated to ensuring you receive quality fertility care. Hi, my name is Dr. Vickie Schafer and I'm here today with Dr. Julia Woodward to discuss mental health and infertility, a bit about myself. As is true with many mental health professionals, my interest in infertility and assisted reproduction started with my own journey with infertility beginning around 2000.

Many years later, as a therapist, I found clients were coming to my office struggling with infertility and I wanted to ensure I have more training to support them. It was then that I joined the mental health professional group of ASRM in 2010 and have found the available training at annual meetings and consultations with colleagues to be invaluable. I'm currently a psychologist in private practice in Austin, Texas.

Although I have a general therapy practice, I primarily focus on reproductive psychology, including infertility, pregnancy, pregnancy and infant loss, assisted reproduction, third-party reproduction, and postpartum support. I'm really looking forward to discussing just how stressful fertility and the IVF process is with Dr. Julia Woodward today. Julia, I'm so lucky to have met you many years ago when we worked on an MHPG committee together.

Could you please tell the listeners a little bit about you and your work? Absolutely. So my PhD is in clinical psychology and I have a joint appointment in the departments of psychiatry and OBGYN in the Duke University Health System. And I've directed the psychological services program at the Duke Fertility Center for a little over 15 years now.

And in addition to providing clinical services, I train students in both psychology and medicine. And as you mentioned, I've served on a number of committees for the mental health professional group of ASRM and also really found it to be invaluable for training and mentorship. Let's start by discussing just how stressful infertility can be.

Tell us a little more about the mental health implications of infertility and assisted reproduction. Yeah, so experiencing distress for patients who are going through fertility treatment is very common. There was a good study that was able to kind of quantify this done by our colleague, Lauri Pasch, who is a clinical psychologist at the University of California, San Francisco.

And she and her team surveyed men and women who were seeking treatment in a fertility clinic a few years back. And what they found was that 57% of the women and 32% of the men scored in the clinical range for depression. And a whopping 75% of the women and 61% of the men scored in the clinical range for anxiety.

And so I think that was, it was really able to point to just how common it is for men and women going through this type of treatment to be experiencing this kind of distress. And if we think about that, sort of why might that be? I think that one of the reasons for that is that infertility impacts so many different life domains. So the treatment is medically invasive.

It's logistically complex and often requires lots of appointments that interfere with work. It's financially expensive and poorly covered by insurance in most states. And it's emotionally draining.

It really creates these cycles each month of hope and then heartbreak. And on top of that, it's often impacting a couple together. And so it's impacting both their emotional connection to each other and often their sexual connection to each other.

And then there are many sort of social elements to an infertility struggle because many times a patient has lots of people in her social circle who are trying to get pregnant and seemingly having much greater ease and success with that. So she'll say, you know, my sister just announced her pregnancy and my best friend and my neighbor and some of these are in person and some of these are on social media. And I just feel like I can't really get away from this.

It's really everywhere. Yeah. Recently I had a couple tell me that they felt like they were in purgatory while they were going through infertility, right? They were like they had the friends without kids and friends with kids and they felt really caught in this middle in a way that was heartbreaking for them and really difficult.

Yeah. I think that's such a good point. And there's another thing I think that comes up a lot when we're working with patients who are going through these kinds of stressors and that's that when they present for medical treatment, they often feel like they need to kind of hide this distress that they're experiencing.

And so they might be more likely to kind of minimize or under report this distress to the medical team out of fear that the physician would say, you know, you need to kind of pull it together and then you'll be more ready to proceed forward with IVF. So our colleague Alice Domar, who's the clinical psychologist at Boston IVF did a really interesting study a couple years back where she tried to identify which patients were most distressed or depressed in order to offer them sort of targeted mental health services. And the way that they went about doing this, she and her team was to put sort of a basic depression screener into every IVF orientation packet.

And what happened was that 67% of the patients actually weren't willing to fill that out. They just felt really uncomfortable sharing anything about how they were coping with this experience. So I thought that was really an interesting and surprising finding.

Yeah, I agree. That's so important because when clients finally make it to our office, it's surprising how often they don't know just how difficult this is for everyone. And so often they think that their stress is causing their infertility or are worried that it's contributing rather than the other way around.

So it doesn't seem surprising to me that individuals struggling with infertility have heightened stress levels and depression. You know, it makes sense given all of the factors you talked about that they're managing. But let's talk about some of the common triggers we see in our practices for this distress.

I know in my practice, I tend to see individuals when it becomes difficult for them to imagine that they will ever have a child. So when they've felt like they've been going at this for a while and they begin to lose that hope that they will actually have a child. And so for some, this happens rather early, while for others, it may be after many unsuccessful IVF cycles.

I'm wondering what your experience has been with this. Yeah, I think that when I think about the common time points for distress to go up a lot, that is absolutely one that I see in terms of often that kind of initiating IVF. So I think of these as kind of like the big five in terms of triggers and time points that are particularly tough.

And certainly starting IVF is one of those five. You know, a lot of times patients will perceive that as it's kind of the end of the road. Like if this isn't successful, this is the last option I have for having my own genetically conceived child or genetically connected child.

And so it feels very high stakes for patients. And it's also really expensive. And so they feel like they're putting a lot of eggs in that basket.

The second one that I see a lot is patients who have been trying to conceive for somewhere between a year and a half or two years or so. And I just feel like it is dragging on for such a long period of time, the struggle to become pregnant and all of the things that they have typically used to cope with stress in the past just aren't really working anymore. It's like they, you know, maybe they used to go for runs or they would talk to somebody, but it's like they're doing all those things and they're still really having a lot of struggle because it's such a prolonged stressor.

Yeah. Yeah. I mean, I think especially when, you know, regarding that social support, when they start feeling like, oh, they're dragging their friends down or that's all they're talking about, or really that worry that they just start seeing their friends as pitying them, that it feels really hard.

So that almost takes away one of their coping mechanisms over time because they don't feel as comfortable having their friendships revolve around this particular issue, yet their lives are really still centered on the fertility treatments. Yeah. I think that's such an excellent point.

And often it could be so hard for a person who's struggling with this problem to talk to someone in their social circle who's not, because that person just doesn't get it in the same way. You know, this friend could offer support around your marital discord or your work stress, but they really don't know what it's like to be going through this fertility treatment. So it's really hard for patients to talk with sometimes with the folks that have been in their social network about it.

So there are a couple of other like kind of key trigger points where I see patients experiencing a lot of distress. One of them is certainly during the two-week wait between a fertility treatment and a pregnancy test. Another is if they are experiencing embryo issues.

So if they have sort of poor fertilization in IVF, if their embryos are not growing well, and so they have a limited number of embryos that are making it to the fifth day for transfer, or if they've done genetic testing of their embryos and they've gotten back either bad news or confusing news in the form of mosaic results, that's another time period where patients are often experiencing a lot of distress. And then lastly, if patients have experienced a pregnancy loss or an ectopic pregnancy or some other kind of complication after a successful cycle, that's particularly heartbreaking for people who had to work so hard to become pregnant. We hope you're finding this episode of SART Fertility Experts helpful.

Remember, for more information on this and related topics, visit www.sart.org and click on the tab labeled Patients. And now, back to SART Fertility Experts. Yeah, you know, because pregnancy loss is so common in general, it does also happen when people are going through fertility treatments.

And sometimes it's part of their fertility problem, and sometimes it's part of just the process and what happens. And so they then have not only the general infertility they've been dealing with, but pregnancy loss on top of it can be really difficult. Well, we had an interesting conversation as we're preparing for this podcast about the difference between being embedded in a clinic and being in private practice, as I am.

And I think some advantages of seeing people in a private practice not embedded with a clinic is that I get to see clients from a broad range of practices, local clinics. And, you know, sometimes they'll find me through friends or through a web search, right? I might be on a list if they ask specifically at a fertility clinic, but I'm not often offered up. So I have a little bit of a different experience with that.

You know, as you mentioned with Dr. Domar's study, you know, if clients are concerned about presenting themselves with any mental health issues, and they go into a clinic, you know, hiding that the best they can, the providers may not even know that they're struggling. And when they come to me outside of the clinic, I think there's less of a concern on their part that I might be, you know, sharing information with their clinic team or even just that somehow information would get out that they were seeing someone for mental health concerns. So I do think it's so important to help normalize that this wouldn't, you know, addressing their mental health concerns would not be seen as a negative by any clinic team.

But it's interesting how many how many individuals and couples may have that notion. So I'm wondering as you, you know, as you're embedded and work within a clinic, how is your experience different? Yeah, so I think that that ideal of or that responsibility of protecting a patient's privacy is paramount no matter where you practice. But one of the things that I have really loved about being in house at Duke is forming such a close relationship with the physician team and also with the nursing team, because I think that in any fertility center, the nursing team is providing like the frontline psychological services for patients.

And so when the nurses are in such regular communication with patients, and they become more conscious or aware of that kind of distress, I think it's such an easy referral for them or the physicians to make to me, because it can't be that weird to need to see the psychologist if she's right here on site. If her office is just a couple doors down from your from your consult room, then that means it must be really normal to be going through this process. And so patients can self refer or they can get this information from the medical team.

And I think it just really smooths that transition and helps to normalize the distress in that way that we've been talking about it. Yeah, I think I think, you know, if every clinic could have embedded mental health, it seems like it would normalize it more, right? Like this is a part of the process to receive this mental health care and support, or at the very least to make it really front and center where they can receive help and information about just how prevalent mental health distress and concerns are with the IVF process. I think that's actually been one of the goals at SART is to really, you know, think about how can mental health services be more connected for clinics? How can patients find out more information about the mental health services that are available at SART member clinics? And why, you know, I'm, you know, in my role as mental health representative to SART, you know, why I provide, why they've sort of asked for that input on sort of the mental health perspective on the activities of the organization.

So I think it's, you know, it's an area that is in development for sure. Finding a trustworthy source for fertility information can be overwhelming. Reproductivefacts.org, a patient website developed by the American Society for Reproductive Medicine, has the medical information you need for your family building journey.

At reproductivefacts.org, you'll find up-to-date videos, fact sheets, and answers to frequently asked questions, all developed by medical experts based on scientific evidence without commercial bias. For your fertility questions, turn to a source you can trust, reproductivefacts.org. So people come to your office and then it's trying to figure out, well, what, how, how can we help them? What, what are some of the things they need help with? What are some of the common themes? And I, I think, you know, first of all, it's so important for those who are seeking mental health support for fertility treatment to be able to find professionals that are trained, that have, you know, an understanding of, of the process. Not just because they've gone through it themselves, which is, is quite common, but not the only way into this field.

But additionally, you know, have some specialized training in this area. And so I know that when clients that are in my office or your office or anyone with appropriate training in infertility support, they're able to explain their story without having to stop to educate their therapist on terminology. And I think this can be a relief and as a first step in them feeling heard so that we can then move into some of the themes that are causing them distress.

Now, often my clients are struggling with trying to find answers and they want control. I once had a client tell me that she knew she was done with Google searches when everything she searched for she had already read. My clients have almost universally been seeking answers and have experienced significant distress in that seeking.

What are some of the themes that you see repeating as you work with those struggling with infertility? Yeah, so as I was thinking about this question, I, I, there were two that really jumped out at me. I absolutely see that too, like a great desire for more information and an emphasis on kind of doing a lot of Google searches and becoming kind of an expert. And the other similar strategy or sort of similar theme that comes up along those lines is this idea that like, if I'm the perfect patient, if I work hard enough at this, that will kind of guarantee my success with this fertility treatment.

And I think what's happening in, in both of these approaches, whether it's, you know, working to become an expert or just working hard in general is that patients are really looking for a way to feel more in control of this uncontrollable situation. And that's often really worked well for patients, for our patients in the past and other challenges that they've experienced. Fertility, fertility patients are often kind of problem solvers and go-getters.

They really know how to work hard for what they want. And what they're experiencing when they're going through infertility and fertility treatment is that those strategies are often just don't work very well. You know, they can do everything right.

They can be the perfect patient. They can, you know, sort of have stopped running and they don't drink any more wine and they've stopped drinking coffee. They, you know, they, they're taking every prenatal vitamin that they should be and still the cycle isn't successful.

And so there's this kind of a double whammy experience then that our patients are going through where they feel blocked in achieving sort of a life defining goal. And at the same time, they feel stripped of using the coping strategies that typically work for them. And that's a really painful combo.

Yeah, exactly. And I think, you know, there are different phases of going through infertility and infertility treatment. And it seems for many that I work with, it's almost like they have to go through the information seeking phase and really find out everything they can and have, you know, control what they can.

And, and then they've done that. And if they persist with treatment or have to continue with treatment, then they can maybe go into this, this different phase, right? Like it's, it's, it's hard to just skip into somehow being at peace and ease with the entire process of fertility treatments. Yeah, especially if you're really ignorant.

And there's so much terminology to master. There's so much information to understand. I think that's what you're describing about when you're working with a, a really trained, a mental health professional that knows this area well, the patient does not have to spend 15 minutes of their therapy hour explaining what PGT is.

Right, right, right. Exactly. Or, or, or DPO or any of the others, right? So it is there, there are a lot of acronyms involved.

Are there other themes that you see in, in working with patients? Yeah. Another big one that I know that we both see a lot in our practices is this idea that a patient will need to be completely positive and hopeful in order for the cycle to be successful or that they need to be, you know, totally stress-free. And I, you know, what we see in the research is that there is a link between stress and infertility, but that the directionality is that infertility causes stress and not the other way around.

And there was a really nice meta-analysis published in the British Medical Journal on the relationship between stress and infertility. And the authors sort of summarized it this way. It said findings should reassure women and doctors that emotional distress caused by fertility problems or other life events will not compromise the chance of becoming pregnant.

So what I think we can learn from this research is the importance of not attempting to be stress-free when patients are going through fertility treatment. And I think, you know, from a, if you take it from a bird's eye view, this makes a lot of logical sense too. You know, as a species, if we were so delicate that we could only reproduce under sort of the most optimal stress-free conditions, I'm not sure we would have lasted for 100,000 years when we were facing famine and war and saber-toothed tigers and lots of other kinds of stressors.

And we say, you know, if you look out at the waiting room of a fertility center, what you were looking at is a room of patients who are really scared and who are really struggling. And yet people get here, pregnant here, every day. And so if, you know, if it were a requirement to be serene and hopeful in order to get pregnant, our pregnancy rates would be terrible.

This is like the dentist times 100. And so really giving patients the message that it is safe to feel what you feel is, I think, so important for patients who are going through fertility treatment. Yeah, exactly.

And it's not that we don't want to help them with their stress levels. Obviously we do. And we'll get to that because not that you should be stress-free so you can get pregnant, but that going through this process is really difficult and you deserve to feel better.

It's important that we address quality of life, not so you can get pregnant, but because you deserve to feel as good as possible during these trying treatments and procedures. So if constant searching and wanting to do everything just right often contribute to stress rather than relief, then how do you guide clients to manage the stress of infertility and especially IVF cycles to ensure that good quality of life? Such an important question. And I think there's sort of a two-pronged approach to this.

The first is that there's kind of maybe like a handful of linchpin strategies that I hope every fertility patient is using. And so I'll go through those briefly next. And then the other piece is that if those maybe aren't working as well for a patient and they need something more, that thinking about getting connected with a qualified mental health professional to really do the master class of, you know, learning how to express grief and tolerate uncertainty and stay in the present moment and some of those other sort of longer-term skills.

But for patients even just kind of walking through the door for the first time, I'm always hoping that they have sort of a handful of these linchpin skills. So number one, I really encourage patients to think about developing the very next step if this cycle isn't successful, but then stopping themselves from trying to figure out the next 20 steps. Patients can often get really lost in the what-ifs of, you know, a whole host of possible future scenarios, which tends to lead to more anxiety rather than less.

The next is that I hope that they have some sort of relaxation practice, you know, especially something that might be centered on mindfulness or meditation. Many of our patients are downloading an app on their phone so that they can practice something like Headspace or Insight Timer or the fertility-specific one that's been developed called VertiCalm. Beyond that, I hope that they have found a place to get social support from somebody who is not their partner.

Obviously, they're talking to their partner about this if they're partnered, and that's really important and helpful, but I think it's too much for just the couple to be able to manage themselves. And so whether that is something like a journal or a blog or a friend or a support group or an online community or a family member, you know, whatever it is, but just having another person to talk to to sort of address the great sense of isolation that often is experienced by fertility patients. Yeah, and that might have to change over time, like we talked about earlier, right? Like at first, they may talk to particular friends, and over time, I find those I work with tend to gravitate towards others who are experiencing this and finding that kind of support rather than feeling like they're burdening or talking to friends who don't understand or have not experienced this.

I think that's such an important, being able to connect to other patients who are going through a fertility journey, I think is invaluable for our patients. The last couple things that I often want to be sure that patients have accessed in terms of coping strategies are, number one, I always ask them, like, what are you doing other than going to work and going to fertility appointments? Because often life has telescoped down into just those two domains. And so I'll ask, what did you give up along the way? What did you use to do for fun? Where might you add some joy and some meaning back into the picture across the week? And then lastly, thinking about, are they doing some sort of gentle exercise? Certainly when you're in the midst of fertility treatment, like high intensity, cardio is not a great idea, but some sort of gentle exercise to be kind of burning off cortisol and kind of centering back in your body and back into the present moment, I think can be so important for our patients.

And again, if a patient's kind of using all of these frontline strategies and finding that they're still really struggling, then getting connected to a trained mental health professional who specializes in this area, I think can make a huge difference for patients. And if you Google MHPG, find a therapist, so mental health professional group, find a therapist, then you'll find that group in the American Society for Reproductive Medicine that really has the training and background in this area. Yeah, good.

Those strategies are excellent linchpins. And if everyone could just go away knowing those things up front, I think it would be a big help. And before we end today, let's just spend a minute discussing some of the challenges that have become especially apparent and in some cases specific to 2020.

Yeah, man, stress in 2020, it's certainly been off the charts for our patients and really for all of our society. Patients who are coping with fertility problems or fertility challenges have had a number of really unique things to cope with in the face of 2020. Certainly in the face of the pandemic coming to light in the early spring, we saw that many fertility centers around the country suspended care.

So that created great distress for patients kind of wondering like, when will I be able to access this type of medical treatment again? And then for those who then when clinics kind of opened back up again, and they got started receiving care again, they're having to face the fears about being pregnant during a pandemic. How will this virus affect a pregnancy? How will it affect me during the postpartum period when I thought I might be able to have more people to support me? And now I cannot, they can't come, or I can't be around them. And then certainly, in this year where we have seen so much more attention paid to the realities of systemic racism, thinking about the fact that many patients of color aren't even able to access expensive fertility treatments.

So I think 2020 has been a really particularly difficult year. Yeah. You know, luckily, we seem to have all transitioned to being able to provide really effective services by video.

And I think that has been a bright spot that we haven't had to interrupt our support as we work in this area. And I'm just really thrilled to have had this opportunity to talk about stress and infertility and treatment with you. And thank you, Julia, for your time, your perspective, wisdom, and knowledge on this subject.

I really appreciated discussing it with you. Oh, it's been my great pleasure. And I really appreciate you sharing your expertise as well.

Thank you for listening to SART Fertility Experts, your resource for information on IVF. If you found this podcast useful, please like us on your favorite social media platform and tell your friends about us. For more family building resources, visit www.sart.org slash patient dash information or www.reproductivefacts.org