IBD Drive Time: Let's Talk About Sex and IBD
In a special edition of IBD Drive Time, guest host David Rubin, MD, discusses how inflammatory bowel disease can affect sexual function with his University of Chicago colleagues Alyse Bedell, PhD, GI psychologist and sex therapist, and Sarah Macaraeg, PhD, a physical therapist specializing in pelvic floor therapy.
David Rubin, MD, is the Joseph B Kirsner Professor In Medicine and chief of Gastroenterology, Hepatology and Nutrition at the University of Chicago School of Medicine. Alyse Bedell, PhD, is an assistant professor of Psychiatry and Behavioral Neuroscience and assistant professor of Medicine at the University of Chicago and a gastrointestinal health psychologist and sex therapist. Sarah Macaraeg, PhD, is a board-certified pelvic and orthopedic physical therapist at the University of Chicago.
TRANSCRIPT:
David Rubin:
Welcome to IBD Drive Time. I'm Dr. David Rubin, a professor of medicine at the University of Chicago, where I also direct the section of gastroenterology, hepatology and nutrition. My specialty is inflammatory bowel disease. Today, I'm delighted to host a conversation about sex and inflammatory bowel disease. I'd like to introduce our 2 expert contributors; both Dr. Alyse Bedell and Dr. Sarah Macaraeg are at the University of Chicago with me and have specific expertise and interest in this area. Welcome.
Sarah Macaraeg:
Thank you so much.
Alyse Bedell:
Thank you.
David Rubin:
Dr. Alyse Bedell is a gastro psychologist and sex therapist. She's also an assistant professor at the University of Chicago in the Department of Psychiatry with a secondary appointment in the section of gastroenterology in the Department of Medicine. She works with our patients who have inflammatory bowel disease as well as other digestive diseases and has a variety of different approaches of reducing GI symptoms using behavioral strategies and helping patients develop strategies for coping with their illness. Her PhD is in clinical psychology and she focused in her thesis on the cognitive factors that surround patients who have irritable bowel syndrome. So Alyse, we're delighted to have your expertise here and to have you help us with some of this.
Alyse Bedell:
Thank you so much for having me.
David Rubin:
And Dr. Sarah Macaraeg is also at the University of Chicago. She's a pelvic floor physical therapist who's board certified in orthopedics and women's health. She has a clinical doctorate in physical therapy, but she also works specifically within our pelvic health program at the University of Chicago, and she's been doing this for almost 11 years now. So welcome, Sarah. We're delighted you're here with us as well.
Sarah Macaraeg:
Thank you so much.
David Rubin:
So this topic is one that I think we don't talk enough about and it is something that is pervasive in patients with IBD, and there are a variety of reasons that we haven't gotten to discuss this further. And in the ever-expanding approach to taking care of people with IBD and thinking about all the challenges they face, understanding their sexual function and their ability to be intimate with others is something that I'm really pleased that we're talking about today and hoping that all the listeners will take away some very important pearls and change their practice. So let me start by just asking you, Alyse, how common is sexual dysfunction in inflammatory bowel disease?
Alyse Bedell:
As a lot of these things are, their rates vary widely, but based on some of the most recent research in women with IBD, rates of sexual dysfunction range from only as low as 50% up to almost 100%—97% based on one recent study just out a few years ago. And if we compare that to healthy controls, those would be at about 20 to 30% among women without IBD—the healthy controls. In men with IBD, those rates range from 14 to 40%. So still a lot, but a lot lower than women, and we can compare that to a figure of 7% among male healthy controls.
David Rubin:
So what exactly is sexual dysfunction? How is it defined or how do people discuss it in clinic? What are they actually talking about?
Alyse Bedell:
Yeah, so it's a great question and it's probably another reason why the rates vary widely. Sexual dysfunction, technically speaking, refers to a disruption at any point in the human sexual response cycle. So that includes interest in sexual activity or desire. It includes arousal, so this could include difficulty with lubrication, difficulty with erection. It also includes difficulty achieving an orgasm. And in addition to those actual components of the sexual response cycle that could be disrupted, pain is actually a separate component. So if any one of those 4 factors related to desire, arousal, orgasm, and/or pain, if any of those things are impacted, those would lead to sexual dysfunction. That being said, you could consider something like desire is really common. So even among the general population, there are lots of factors that can reduce a person's libido. And so that would be the reason why some of those rates might be so high versus if somebody has pain as well as low desire as well as arousal, that's going to probably lead to some of those lower rates once we get to more complex sexual dysfunction.
David Rubin:
Does it include some of the things that we hear about related to self-identity or fear of being incontinent during interactions? Because I'm not sure if that falls under those categories you described, but we know that this also contributes to how people can be intimate or have those types of relations.
Alyse Bedell:
Absolutely. So I think it's such a good point that I think when we hear about the definition of sexual function or we think about the types of disorders that fall into that, it sounds so physiological. And of course many of those symptoms are very physiological in nature, but actually some of the most common causes of sexual dysfunction are psychological and social in nature. So with the example that you identified, the fear of incontinence, it's the fear of incontinence that's actually making a change in the brain and the body that is inhibiting the body's ability to respond sexually. It's actually disrupting the body's natural sexual response cycle. So I would say that those types of psychosocial factors are integral to the development of sexual dysfunction, but you might not know the causes until you start to dig into it more.
David Rubin:
Sure. I'm sure the folks listening are just astonished by the number of people who are actually affected by this. It's not just the folks who have the active disease and who are sick, but people who have IBD even when they're in remission who continue to have some of these challenges.
Alyse Bedell:
Absolutely.
David Rubin:
So Sarah, why don't you help us understand a bit more of about why some of this happens? What are the physiologic causes and contributors to some of the challenges that Alyse identified?
Sarah Macaraeg:
I think Alyse did a great job painting the picture for some of the psychological component. And if you think of patients who are in a lot of pain, they're in a lot of discomfort and going on that line of things, what happens at least from a muscular perspective is those muscles tend to be very guarded. There's instances of constipation. If there's instances of fear of diarrhea or any leakage, those muscles are going to be contracted and in this semi protective state. So thinking from that perspective, when you have all that muscle guarding and thinking of penetrative sex, when those muscles are super tense and in that guarded state, that can be very painful for a lot of people to experience penetration.
And then to add on with the libido aspect too, when the libido is down, the anticipation of pain sort of feeds into this vicious cycle of, "Well, I'm afraid of this, or I'm afraid of pain or I'm afraid of leakage," and then that contributes even more so to the tightness of the pelvic muscles, and that can be this vicious cycle that's hard to find that break in until we start these different forms of therapy, whether it's both physical therapy and mental health therapy to try to start recognizing and breaking some of that cycle to then get on this path of maintenance essentially.
David Rubin:
And I'd like to dispel the myth that men don't have pelvic floor problems. They certainly do. Can you comment briefly on the relative prevalence of that compared to women where we think about it a little bit more often?
Sarah Macaraeg:
Absolutely. And I think the common way that it more presents in men is either erectile function and pain with some form of either ejaculation or pain after orgasm as well. And these can be presented in a variety of different spaces, whether it's rectally or testicular or penile or even abdominally afterwards. And generally I think there's just a lot of underreporting or either shame around this and it's not being asked by providers. And that's partially why I think a lot of this gets underreported in males as well. But from a mechanism perspective, it's very similar to that of women, of these very, very tight muscles. From a muscular perspective, for proper sexual function, you need full relaxation of your muscles and be able to fully contract. So when you have the inability to do that and those muscles are just tense all the time, that's where this can lead to some of these different areas of dysfunction.
David Rubin:
That's a perfect lead into my next question, which is how do we screen for sexual dysfunction in clinic? I know that the people listening to this are busy and they also understand even if they're experts in taking care of people with IBD, how complex that can be if a patient's sick and they're having GI-driven symptoms. We focus on that a lot of our time, adding in all the other health maintenance and extraintestinal problems that we're supposed to be looking for and have enough time to screen for. Now we're talking about sexual dysfunction, which is underappreciated. How do we possibly know how to ask how to screen and what to do? So maybe Alyse, what should we be saying? What's the best way to approach this? Is it part of just a review of systems or should it be something more directed or are there tools we can use?
Alyse Bedell:
Probably all of the above would be the correct answer, but maybe the most practical answer is pick one and try to make it work and stick with it. It can be so tempting and in a research perspective it can be so wonderful to use standardized questionnaires. But I think if the real interest is in making this practical and easy to pick up on, easy to do in clinic, I would say the clinical interview is our most powerful tool. And that can be one question— tell me about your sexual functioning recently— and maybe a follow-up could be, how has it or has it not been impacted by your IBD? And so I really think it can be as simple as that. And one thing I'll add is I really appreciated Dr. Rubin, your use of the term sex and sexual functioning throughout our conversation so far.
And I think that that's something that I really do want people to take away: call it what it is. Intimacy is a broad term. Intimacy is an important term, but intimacy means a lot of things. So if we are really asking about sexual functioning, don't call it intimacy, ask about sexual functioning. And we really as providers need to be the ones to take the lead on taking the stigma and the shame out of these questions. Most patients do want to have these conversations with their gastroenterologists and with other members of the health team. We know this through research. Certainly, you could encounter a patient that's uncomfortable talking about it, but by and large if you ask the question and demonstrate confidence and appropriateness in asking that, patients will respond well to it. So I think just asking about how sexual functioning has been, getting an answer and then I think we'll certainly talk a little bit more about beyond that, what you might do.
To comment a little bit, if there are folks that would be interested in more systematic screening, I would be happy to in the transcript share a couple of recommendations for that. There are two that are specific in IBD to sexual functioning, one for females and one for males. And then there is a validated 1-item screening questionnaire that is pretty nice. So if anyone has an interest in implementing it, I'll include a link to that as well.
David Rubin:
That'd be terrific. And obviously there are some sensitivities here—for example, perhaps having a partner or someone else who's in the room step out maybe when the patient's changing, or having an exam with your chaperone present is when you can ask the question. Don't ask the question while you're actually examining the perianal area, but rather separate the physical exam from the questions themselves so that the patient feels like there isn't a violation of their physical space while you're exploring this. And there are some things that I think we need to learn a bit more about.
Alyse Bedell:
Such great points.
David Rubin:
So then after somebody indicates that they are having some challenges or that they feel like their sexual function isn't where they want it to be, what do we do to probe further or to ask additional detailed questions and how do we refer them to the next step in management? So Sarah, can you help us with that?
Sarah Macaraeg:
Sure, I think especially as long as they're comfortable—as you had mentioned before talking about things—I think some basic questions or follow-up questions are, when are you having pain or at what phase are you having issues with your sexual function? Because for some people it might be, "Well, I don't feel like I'm in the mood for it," so that can help lead you down one clinical pathway, or, "I'm having a lot of pain," and that can lead you down another clinical pathway. So really finding out what aspect are they feeling that there's dysfunction? And then the other follow-up question, too, is, what is your relationship like with your current partner? I think that's also important to know what their support system is like, so that way you know what the expectations are. Because sometimes if partners, if they don't feel like they can talk about it openly with their partner, that's huge and definitely a way to try to pull in some support system for them.
But if they have a very helpful supportive partner who's not pressuring them, that can also make their path to recovery a lot easier as well. But that's usually where I try to dive in, trying to figure out what phase are they having their dysfunction in. And that can then lead to more and more questions and more discussion to then be able to determine, "Okay, yes, this person absolutely needs some sort of mental health therapy. Let's get them set up with that, or let's get them aligned with physical therapy because they're having a lot of muscle pain," or if they're being collaborative with pain management or what have you, but just trying to find what resources they could possibly need.
David Rubin:
That's a great lead into the next question, which is, how is this treated? And maybe Alyse, you can take us through some of these approaches as well as tell us when it's appropriate to refer a patient and whom you've identified these challenges to a sex therapist.
Alyse Bedell:
Absolutely. So I think the first thing to keep in mind both for the provider and for the patient is that these issues really are very treatable, thankfully. There are a lot of things that we work with that can be a little bit more challenging to instill hope. And thankfully sexual function is something that can really be well addressed with the right resources. So I think what happens next, kind of following up on some of Sarah's comments, it depends a little bit on the comfort level of the physician, in this case of the gastroenterologist. From my perspective, I would say that particularly when we're talking about male patients perhaps who have developed erectile dysfunction that seems to have really closely piggybacked on a recent surgery or following a recent flare, as long as you as a physician feel that a PDE5 inhibitor would be safe for that patient, that could be okay for you to start.
But I would say in many cases, it is completely fine to rely on our other physician colleagues, so a referral to urology or gynecology could be appropriate depending on what primary care doctor the patient has, they may be comfortable doing some additional screening and management. But I would say actually in most cases, a patient could be recommended to see a sex therapist. And I would say that's largely because as a sex therapist, our training is really to take that bird's eye view in understanding the various multifactorial aspects of sexual dysfunction. And so we oftentimes actually can be a pretty good assessment to help route to the different pathways if the patient hasn't had them already. So certainly not that we're going to be addressing the medical issues or the physiological issues, but we do have some pretty good training in being able to identify what might be a good next step for the patient.
And I would say at a bare minimum, when having the discussion with the patient about where they might go next in terms of screening or management for sexual dysfunction, do your best to also just include a little bit about how no matter what the primary cause is, psychological and social factors play a role and so that the patient can at least mull over what their stress level is, what their anxiety is, what their current body image is, and to be able to maybe prepare and to increase the readiness that they might need to talk to someone that isn't a medical provider. And I think that's important because most people, men or women, regardless of what the primary source of their problem is, really benefit from at least a few sessions with a sex therapist to understand that psychosocial component to their sexual functioning.
David Rubin:
You mentioned the medical provider. I'll just add that and remind everyone that these days our goal is to try to achieve disease control, not just symptom improvement. And part of communicating to patients when they achieve deep remission is what comes with that, which is a favorable prognosis at least for the next 6 months or a year that their disease will stay under control. So you can provide some more certainty in the medical management of their disease to provide them with more comfort. One of the things patients most struggle with is the uncertainty or the unpredictability of when they're going to relapse or have a problem. And I'm sure that contributes in some ways.
Having said all that, the patient in deep remission is someone, as we've already mentioned, who can still have sexual dysfunction. And you shouldn't think that because you fix one problem, the other one's gone away. So it's really important to continue this dialogue. Sarah, I might ask you to help us know when should people be referring to see a pelvic floor physical therapist. I know that this is an underappreciated problem in our patients with inflammatory bowel disease. Sometimes it's acquired because they've spent so much time trying to hold things in when they were fearful of having incontinence and other times they have these challenges that are from other problems like surgery. Can you help us know when they should be sending to you or have additional testing?
Sarah Macaraeg:
Absolutely. Yeah, I think you touched on a lot of that too, of especially those who are on either the extreme where they have mix between both constipation and diarrhea or they have that history of either some sort of bowel obstructions or just history of that constipation. Sometimes if they've had testing like anorectal manometry and if signs are abnormal, sometimes we can work on reteaching these patients how to properly use their pelvic floor muscles to evacuate. We can also try teaching them some lifestyle modifications as well, but they're usually getting a lot of that from their gastroenterologist and even from nutritionist as well.
But that's a lot of times, we're retraining those pelvic floor muscles if it seems like they just don't know what they're doing or even upon their digital rectal exam if their muscles are super guarded, really, really tense and even painful, that can also be an indication as well if they just don't know how to perform a Kegel or a pelvic floor muscle contraction, if they have no idea how to bear down and push and their muscles don't know what they're doing or they're squeezing when you're telling them to push or vice versa.
A lot of that is just leads into what we call dyssynergic defecation, and we can try to retrain some of that. But even after surgeries, sometimes if they have really, really large abdominal incisions and you're seeing them 3, 6months postdoc and they just look very hunched, very guarded, sort of in that flex protective position, that too can also influence bowel function as well. So that can be another indication to send to PT because we can work on some of that scar mobility, we can work on posture and just getting them in that better place so that way they are able to have better functional mobility, better ability to defecate.
And then of course on the topic of today with any sexual dysfunction, that can be almost an automatic referral to pelvic floor therapy. But what I was going to mention with what Alyse had been saying is, it's almost critical to have these patients who have the sexual dysfunction to also be seeing some form of a therapist as well, whether it's a sex therapist specifically or even just a few sessions because of all those psychosocial factors and there's so much that's involved going on that sometimes yes, we can address the muscular aspect, but if there's that underlying anxiety, if there's that underlying depression and fear that's not being addressed or not being acknowledged, those muscles go right back to being tight again.
So it's sort of like, "Well, we're just going in circles here and not really resolving things." So that's where it's really important to have this multidisciplinary approach.
David Rubin:
That's really terrific. So many important points that you made. On the medical side for me when I'm taking care of IBD, when the symptoms and the amount of inflammation don't align, in other words, there's less or no inflammation and the patient's continuing to have problems, I'm always wondering about additional pelvic floor challenges that we should be evaluating further. This is especially true before people have colectomy and get a J pouch. I think we need to be thinking about this and keeping this in mind.
I have 2 more questions for you, but I want to remind everyone that this is IBD Drive Time. It's sponsored by the Gastroenterology Learning Network and Advances in IBD. You can now find these podcasts on Apple and Spotify. Just search for the Gastroenterology Learning Network to find this and many other helpful podcasts with our expert colleagues.
So just a couple more questions for you both. Alyse, what resources are available for patients and for providers to learn more about this?
Alyse Bedell:
So I would say especially for patients, don't overlook the obvious. The Crohn's and Colitis Foundation has some incredible resources on a number of topics and they have a special area of their website that is dedicated to sexual health. I can include a link on that as well, but they have some really nice patient-facing resources on there as well as some 1-page tip sheets that could even be kept in your clinic. And then I would say for both patients and providers, I would recommend the website aasect.org, which I'll include as well. That is actually the official organization for sex therapy. They have, again, some very nice patient-facing resources on there.
What I think I'd really like people to take away is that they have a directory for certified sex therapists. As many of you listening may know, it is quite hard to find a gastro psychologist. Thankfully, sex therapists are not as difficult to find. There are actually a lot of people with very good sex therapy training across the country and internationally. So this is a directory that providers could use and patients can use to find a sex therapist in their area. They may not have experience in IBD or they might, but either way, they are going to have some helpful strategies for your patients. And then I also just wanted to make a note that for providers that may be interested in learning more about sexual health and about the care of patients with sexual dysfunction, they have some really nice trainings that are listed on there as well. It talks about different pathways if you're interested in learning more about how to be a competent sexual health provider. And so I'd recommend taking a look at that as well.
David Rubin:
That's great. Well, my final question is just what's the next steps for the field? Certainly having this conversation is helpful and we've done some work to identify the prevalence of these problems, but what do you think are the important next steps for research and for clinical practice that we should be thinking about? And maybe I'll start with Sarah and Alyse, you can weigh in on this and then we'll wrap.
Sarah Macaraeg:
First and foremost, just almost making this routine in terms of the clinical field, just making this a routine screening question and making this just part of the conversation of, not that it's to be expected, but to some degree it's kind of to be expected given the prevalence. So being able to have those conversations a lot easier with our patients I think is definitely the biggest clinical aspect that needs to become more normalized.
David Rubin:
Terrific. And Alyse, what do you think we should be doing next?
Alyse Bedell:
Yeah, I totally agree with Sarah. I think just getting more comfortable with talking about this more, routine with talking about this. I think that what would be great to understand better is how we can make these types of treatments more accessible to our patients with IBD. I think right now, just anecdotally, I think we have good reason to think that the existing treatments are effective. Sex therapy is effective, pelvic floor physical therapy is effective. We have some nice medications on the market, at least for men, but this is all a piecemeal right now. So I think being able to actually do some research and to aim for really having more of a clinical workflow in place to make this more streamlined both for gastroenterologists to know what steps to take next and for patients to have more of a comprehensive plan for how they might address what is a very multifactorial problem.
David Rubin:
Yeah, totally agree. And I'm sure everyone listening is jealous that I get to work with such amazing expert colleagues from these different disciplines here at the University of Chicago, but the resources you've provided are super helpful and we'll make sure those are linked underneath the podcast. And I certainly have an interest in understanding a bit more about how chronic inflammation may affect sexual function, and we are interested in learning how therapies may modify that as well. But this has been incredibly educational. I learned a ton from you both. I want to thank Dr. Alyse Bedell, who is a gastro psychologist, sex therapist, and assistant professor at the University of Chicago, and Dr. Sarah Macaraeg who is a pelvic floor physical therapist and has her clinical doctorate in physical therapy at the University of Chicago. This has been a terrific IBD Drive Time and I hope that all the listeners will go see their next patients with IBD and think to ask about sexual function. Take care.
References
Sex Therapist Directory:
Crohn’s and Colitis Foundation Sex, Intimacy and IBD Fact Sheet: https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/ibdsexuality.pdf
Assessment for Sexual Function:
- IBD-specific Female Sexual Dysfunction Scale (de Silva PS, O'Toole A, Marc LG, et al. Development of a Sexual Dysfunction Scale for Women With Inflammatory Bowel Disease. Inflamm Bowel Dis. 10 2018;24(11):2350-2359. doi:10.1093/ibd/izy202)
- IBD-specific Male Sexual Dysfunction Scale (O'Toole A, de Silva PS, Marc LG, et al. Sexual Dysfunction in Men With Inflammatory Bowel Disease: A New IBD-Specific Scale. Inflamm Bowel Dis. 01 18 2018;24(2):310-316. doi:10.1093/ibd/izx053)
- Single Item Screener (Flynn KE, Lindau ST, Lin L, et al. Development and Validation of a Single-Item Screener for Self-Reporting Sexual Problems in U.S. Adults. J Gen Intern Med. Oct 2015;30(10):1468-75. doi:10.1007/s11606-015-3333-3)
Pelvic floor Physical Therapist Locator:
https://aptapelvichealth.org/ptlocator/
Patient Resource On Pelvic Floor PT
https://www.mypfm.com/handoutsandsolutions
