The Decibel - Viral videos on IUD pain spur new medical guidance

Episode Date: August 14, 2024

Intrauterine devices, or IUDs, have become increasingly accessible and popular over the last few years. The high level of efficacy and added benefits, like improving users’ periods, make it appealing to doctors to recommend for patients of all ages. But there’s a big catch – getting it put in can be excruciating for some patients.Last week, the Center for Disease Control in the United States issued a guidance recommending healthcare providers counsel patients on their pain management options before the procedure. The Society of Obstetricians and Gynaecologists of Canada put out a similar recommendation in 2022.Dr. Renée Hall is the medical co-director of the Willow Reproductive Health Centre in Vancouver and a clinical associate professor at the University of British Columbia. She’s on the show to talk about why we need to change how IUD insertions are treated , and how womens’ pain is treated in healthcare.Questions? Comments? Ideas? Email us at [e-mail]

Over the last few years, IUDs, or intrauterine devices, have become much more accessible in Canada and more popular. BC made the move to publicly fund prescription birth control in 2023, and the federal government followed suit earlier this year, introducing universal coverage. That means the hundreds of dollars it can cost for an IUD will no longer be an issue. But the price hasn't been the only barrier to getting an IUD. For some, the procedure is uncomfortable. For others, it's incredibly painful. People have been documenting their experiences getting an IUD inserted on TikTok. In some videos, the patients don't make a sound, but you can see them grimacing from the pain. In other instances, like what you're about to hear, they're screaming. We can make fun of me.

What? No! One, two, three, say out. Oh, my God. The IUD going in last time, I almost thought I saw the afterlife. One, two, three. Oh, that was horrible. That was it. Oh.

Breathe. Oh. Oh. Breathe. Breathe. Oh, wait, there's more? Ow, ow, ow, ow. Following a deluge of videos like this, the Center for Disease Control in the U.S. issued a guidance last week on how health care providers should talk about pain with patients wanting an IUD. There is some guidance in Canada, but that conversation varies depending on the

provider. Dr. Renee Hall is the medical co-director of the Willow Reproductive Health Center in Vancouver. She's also a clinical associate professor at the University of British Columbia. Today, she's on the show to talk about the difference in what patients are told and what they actually experience, and how women's pain is often treated in healthcare. I'm Rachel Levy-McLaughlin, and this is The Decibel, from The Globe and Mail. Dr. Hall, great to have you here. Thank you so much for having me and bringing attention to this issue. The IUD is a relatively invasive form of birth control, at least compared to condoms or the pill.

So why do doctors like it? It's basically based on what people are looking for in their birth control options. People really want something that's as effective as possible with the least amount of effect on their body and something that's easily reversible and that they don't have to think about. And the IUD really checks all those boxes. So it's one of the birth control we refer to as a long acting reversible contraceptive, which is the ones that we're recommending really sort of first over other things and discussing these with patients before we start talking about things with more hormone that are less effective and that you have to take every single day.

And how effective is it? So in a typical use failure rate situation, meaning not the way they talk about it in a study, but actually taking 1000 people using the IUDs, it is less than 10 people a year who would be pregnant. So less than 1% in a typical use is pretty good. Whereas if you think about the typical use of something like condoms, sometimes they break, sometimes you forget. So even though on the package, you may say the chance of pregnancy is less than 1% in real life, it's actually more like 18%. So who is being recommended to get an IUD? So actually anybody of any age, it's suggested as one of the first line options that we recommend.

But at the same time, birth control is so individual and depends on what people are looking for and whether they're interested in having a pregnancy soon that if they're planning on having a pregnancy sometime within the next year, sometimes we'll refer them to something more short acting instead. What about teens? Can they get the IUD? Yeah. So initially we were somewhat discouraging of teens back in the day saying, well, it's really meant for people who've had babies before. And then we realized, actually, hold on a second. This is something you don't have to think about every day. That's super effective. Why are we discouraging teens from using this? And in fact, it's really, really

popular among young people, particularly because some of the non-contraceptive benefits are kind of cool, like not having your period. Right. So what are the other non-contraceptive benefits? So it's kind of nice not to have a period or to have less of a period. Some people really suffer with their periods, both in amount and with pain. And so it also can help decrease the amount of pain people have. And IUDs, including the copper one will decrease your chance of endometrial cancer, which is kind of cool. And some people find that having the IUD can improve their comfort around sexuality, because they don't have that constant fear that they're pregnant. Or did I take my pill today? Didn't I take my pill today? So quite a lot more worry is gone.

And so some people have said that they find that they actually enjoy it better as far as their concerns around getting pregnant. And at a basic level, can you explain how the procedure works to get an IUD? Absolutely. So most providers will visit with you first. So either by telemedicine or in person and try to get an understanding of your medical history or sexual history. And we're trying to also guess to see how difficult the insertion is you. Is this definitely what you're interested in? Talk about all the options and go through an informed consent discussion like about here's the risks as well, because every contraceptive, any medical thing has risk to it too. And then the actual visit itself, that's also the opportunity to talk about pain and how we want to manage it during the insertion and after. And then when they come in to the actual clinic, the pain management option sometimes is something you have to start first.

Sometimes it's more in the moment when we're putting the actual IUD in. So it depends on what you've discussed with your clinician. But the first thing is that we put a speculum inside the vagina, basically a vagina holder opener is what I refer to it as it just kind of holds it open. And then we have to put the IUD through the door of your uterus, which is called the cervix. And that's genuinely the guilty party when it comes to what hurts, trying to get the IUD through that little tiny opening that does not necessarily want things going up it. It's meant to have things coming out of it is where some of that pain comes. So then we put the IUD into the uterus and then we let you rest for a little while and then sometimes people go home and experience an adjustment period that includes some cramping and random bleeding and it can be quite annoying honestly at, but a lot of people find the long term benefit worth it.

So how painful can this procedure be? It can be awful for some people. So it's not for a lot of people, but a small percentage of people really have a terrible time with insertion. But there's a whole bunch of things we can do to help make that better. There's a lot of people out there who do this at their lunch break and find it not a problem at all. And then there's this percentage of people who even have trouble with just that speculum going in. And more and more people getting IUDs are having vaginal exams for the very first time. Back in the day, we used to have cervical screening or pap tests really early, like we would have them, you know, as soon as we were sexually active. And now the recommendations are not to do that until you're 25 or older.

So many people, the first time they're having vaginal exams sometimes is for this procedure that's, you know, significantly invasive compared to what they've ever had in the past. So it takes a little bit more time to discuss what they should expect and what you want to do about the pain of the procedure itself so that we can try to avoid the severe situations or making people feel like they just had a trauma. That would be the worst case scenario. And is it only painful during the procedure itself or does that pain linger at all? So it's not just the pain of the insertion, but your body has to get used to the object being in your uterus. So it's not used to having something in there. And the job of a uterus is to push things out of it. So it's going to contract on that IUD for the first little while. For some people, they don't notice it much. And some people, they notice it almost like a mini labor, they can feel the pain in their uterus, they can feel the

pain going down their legs even. And so it can be pretty intense for some people even after the procedure. So I think it's important to make sure people are aware that those first couple of weeks afterwards for some people on and off, they could have some severe cramps just so that they're prepared for it and things like non-steroidal anti-inflammatories help a lot things like ibuprofen for the aftermath naproxen tends to help for the procedure for insertion and then heat is nice to calm the uterus down too and then if things are really severe then we start to be worried that there might be something wrong. And we give people a 24 hour phone number to call us if there's a pain that's unusual.

So I mean, it sounds like there's sort of a really wide range of the pain levels that people experience. You said some people do this on their lunch break, some people it feels like they're in labor. So why do we see such varying levels of pain? Like what's actually going on? It's almost the same as you would imagine as birth in a way, like our experiences of pain in our cervix is so widely variable, but then also our expression of pain individually and culturally is different. And then also the experience that you have with that particular provider or how they put the IUD in or where it's located in your uterus can make a difference too. The other difference is when you've had children before and when you haven't had children, that can make the procedure sometimes easier. Sometimes if you've had

surgery on your uterus, it can make it harder. And then also, of course, it's what we bring in the room too. So some people have a significant amount of anxiety and anxiety absolutely influences pain. And some people have had histories of trauma and that's going to influence their experience for sure. You talked about some of the things that you do in your clinic, but what are the different pain management options? So I sort of think of it as this like a Venn diagram. So there's multiple options and you can use one of them. You can use a couple of them. You can use everything you've got in your armamentarium if you know this is going to be a rough one. So the first thing is the non-medicinal things.

So making sure that you're providing the comfort that that patient needs, asking them if there's anyone they'd like in the room with them. Sometimes other people are helpful. Sometimes they are not. So that's it. That's that can be good and bad. If they would like any other comfort measures. Some people like to listen to music during so non-medicinal things can be super helpful. And then I like to talk about verbicane. So my own ability to comfort a patient is really important to like making sure I can talk them through and ask them what they prefer. Do you want me to distract you or do you need to know like every touch that's about to come? You know, so that makes a difference. So it's really about relaxing the patient.

Exactly. So that's the non-medicinal things. And then there's freezing like cervical block or cervical freezing that we can use. And then there's oral pain medication. So things that you can use that can help both with anxiety and with pain, you can take things like Ativan or Percocet or Tylenol 3, and we offer that to people as well. And then the final thing, which you can't use with oral medications, but you certainly could use with freezing is an inhaled medication that's somewhat

new to us. And it's been really promising that it seems to act very much like the oral pain medications, except that it just lasts a lot shorter. So you're not kind of influenced by those medications for so long throughout the day, it's maybe 15 minutes or so. It's almost if you imagine kind of like a laughing gas. And it's called penthox. And it's been another really useful tool. So I love when they come out with new things to help us with pain management. And this one's been great so far. And what kind of advice has been given historically to patients around pain management? What have people been told to do? Well, actually, it's also what's been

told to clinicians. So we were told, this is an easy, simple procedure. You can do it in your office in a few minutes. It's might be painful sometimes, but the vast majority of the time people do just fine. And there really isn't any pain medication options that are directly helpful. So this is what we believed. And then when we have people come into our office, we found that it's actually a lot harder than we thought. And this is what we'll tell patients too. We'll say, oh, it should be quite simple. It's, you might feel a pinch, the famous pinch. And, and that's about it. And then you should be fine. And that is the case sometimes. Absolutely. And a lot of the times people have an easy time, but there is that percentage of people where it is quite a lot more difficult. And the clinicians were surprised by that, as well as the patient being surprised by that.

And what does the access to pain management look like across Canada? What are people being offered? Absolutely variable. I've found that in some places, they just don't encourage it at all other than maybe just the verbicane piece they say there isn't anything that really helps and so we could we suggest that you take an ibuprofen and that's it and other places where they have everything including offers of sedation where you can put a patient under and it's really important for us as patients to ask our healthcare providers what kind of options they have available, particularly if you're very concerned about pain. If you've had three babies and two IUDs and you're not too concerned, then you can go anywhere and get it

done. But if you are genuinely concerned and you have a lot of anxiety, it's really important to ask your care provider what they offer and see what might fit for you. Right. And how effective are those pain management options that you talked about? Yeah, that's part of the controversy. And the reason why we haven't had a ton of direction as clinicians is because the studies are so conflicting. Some of them say this thing works, and some of them say those thing doesn't work. And there really hasn't been one thing that stood out as working really well. But all of these studies are monotherapeutic, meaning they'll study one thing. But as we talked about, what tends to work is a bunch of stuff together. So if you are making your patient feel really relaxed, if you're super skilled and you do this all the time and you're quick and you provide them with freezing all those things together certainly can make a

difference we also know now there's been a study that came out in 2024 saying that ultrasound helped because then we know exactly which way we're going we don't have to try and figure out where your uterus is and poke around we can just go directly to that spot. So there's more and more evidence coming out of little things that we can add, so that the overall experience is better. So I think the answer is, it's going to take multiple things and be prepared to be wrong, is what I like to tell clinicians, be prepared that you're in that moment. And it's like, nope, nope, nope, nope, we've made a wrong judgment, we need more than what we've offered you. Let's stop and gather ourselves and figure out what we're going to do next

rather than pushing through. Because we and patients tend to want us to just push through sometimes and it can be traumatic when that happens. So I think it's important to allow ourselves to stop, say we predicted incorrectly. Let's make a new plan. We'll be back in a moment.

So Dr. Hall, if people are finding this to be a really painful procedure in some cases, why aren't methods like sedation used more often? So sedation, I know they're offering a lot more in the US at many of the Planned Parenthood centers. The issue is that it's a procedure itself. So it has risks associated with it, with it as well. In fact, it's one of the main things that the College of Physicians and Surgeons will be monitoring in the community is wherever there are places that provide sedation, because then you have to monitor people's heart and lungs. And so there are places that provide sedation, because then you have to monitor people's heart and lungs. And so there is some risk to that procedure too. So we want to use it when we really, really need it. The other thing is that financially, it's really difficult to be able to provide the sedation with an IUD insertion.

It would be more expensive. It'd be far more expensive. You need a nurse present, you need a lot more equipment, and that makes it difficult, but absolutely possible. If there's somebody who that is what we need in their case, then we have to be able to provide that. So we do have gynecologists in the community who we can refer to, who will take our patients and put an IUD in under sedation. So how does funding for IUD insertions affect the pain management that providers are recommending in Canada? Well, I can tell you a little bit about BC, because we really didn't have any option to bill for pain management options such as freezing or local anesthesia prior to the end of 2023 when it started. And so when we'd have a

complex case or a situation where someone really did want freezing, it might take longer and you had to be trained in order to know how to do a cervical block. But we weren't remunerated for it. And now we did a little bit of advocacy work. And luckily, the BC government chose to create a billing code so that we could actually bill for that situation. And I do think that that encourages people to train and learn how to do a cervical block so that they'll be able to offer it to their patients. Right. So in BC before, you would only be paid for doing the procedure itself, not for the cost of doing the

local anesthetic or any of the other pain management options. But now you have this code. Exactly. Yeah. And, you know, we talked about this idea of it being just a pinch. That's how the procedure is often built, that it's, you know, uncomfortable. So where did that idea come from? I think, honestly, it probably started from industry because of course they want to sell it as something that's simple and easy and not very painful and doesn't take much to put in. But I think that they may have shot themselves in the foot a little bit because when people experience it as so much more pain and it surprises both the patient and the provider,

it discourages both the patient and the provider from doing it again. So as long as we can counsel people to expectation and we work with them together with what options are available for pain and be prepared to stop if what we've planned isn't working, I think that's actually a better approach than just to say, meh, it's fine. It's going to be easy. It's not a problem. We hear a lot of stories about women's pain getting dismissed in medical settings. Can you talk me through how the pain management around IUD fits in with that history? I mean, it's the patriarchy. Let's be honest.

There is still that tendency to dismiss women's pain. And there always has been within medicine just as much as the rest of society. When it comes to IUD insertion pain, it's interesting to look at the data about how much pain we assume the patient's having versus how much they're actually having. We are diminishing their experience and we're assuming that it was much better than it was. We're also trying to make it like we did a good job. And I think historically, there has been this tendency to either diminish women's pain or also not realize that we can experience things differently. Like even when it comes to heart attacks, our tendency for symptoms was weak and

dizzy. Whereas the traditionally what we thought of was crushing chest pain and shortness of breath. And so the tingling in the left arm. Yeah, like the typical, which some people will experience. But they did certainly notice over time that actually women experience things a little bit differently. And initially, people without having heart attacks were being dismissed because they experienced differently, you know. So there is definitely that tradition in medicine of diminishing women's pain. And so I think now I really appreciate the social media uproar where everybody with a uterus is saying, I'm not going to tolerate this sort of assumption that it's going to be just fine. I want a proper

conversation about pain management during my IUD insertion. And I think that's great. How do doctors determine how much pain their patients are in? What's that calculus like? It's very difficult because we remember we're sitting at the vulva, so I can't really see their face very easily. So sometimes people may be squinting and having this terrible reaction on their face, but I actually can't tell. So the only way I can really tell is if there's movement or sound. And then I feel like, wow, I've really not not doing a good job. So I'll just pause if I notice any of those things. But I think it's important to say at the beginning of a procedure, if you're experiencing more discomfort than you want

to be experiencing, please stop and please stop me and let me know. So the change in recommendations from the CDC in the US came in large part because of these social media videos that people were sharing that you mentioned. What does it say to you that it took videos from the public to spur action? Unfortunately, it makes me feel like our research somewhat failed the population a little bit because there wasn't anything that was coming out on top as being the most obvious answer to IUD pain. A lot of times clinicians would not provide anything. And the population is saying, no, that's not acceptable. And I appreciate that because I think when we don't have a clear and definite answer from the research, we have to do our best to come up with alternative options for patients. And in this

case, I think it's a combination of the things that have shown a little bit of evidence. And when you add them together, we can really make that experience not so bad for patients. And overall, the recommendations from the CDC are that doctors need to help their patients manage their pain, inform them of the potential for pain. They suggest using a local anesthetic or a numbing agent. And I'm just wondering how much of an impact do you think these recommendations will have? Every time there is attention brought to the issue, it'll have at least a few more providers going, huh, well, I really haven't done this in the past. And now not only did SOGC state it in 2022. This is the Society of Gynecologists.

Yes. So the Society of Obstetricians and Gynecologists came out with a public paper in 2022. And so that probably changed a few clinicians' minds as it was. And then the CDC in the US coming out with more information about you guys really need to be talking to patients more about pain management. Hopefully that'll be even more clinicians will start reconsidering not offering patients anything. And as someone who does a lot of these procedures, what do you think would make the experience better for people getting this in Canada? I think that what clinicians want is more training. So I've heard that a lot at our IUD workshops that people wish that during their residency programs and during their training programs,

they could actually be in the room with patients who are getting their IUDs and have an opportunity to insert IUDs themselves. So I do think that that would make a difference to help people feel more comfortable. And the more demand there is, the more experience the clinicians that are out there are getting. So I think that's helping a lot. And having people speaking up for what they want within a clinical setting is going to help a lot as well. Dr. Hall, thank you so much for being here today. Oh, happy to be here. Thank you so much for bringing attention to this issue again. That's it for today. I'm Rachel Levy-McLaughlin. Our producers are Madeline White and Michal Stein. David Crosby edits the show. Adrian Chung

is our senior producer, and Matt Adrian Chung is our senior producer. And Matt Frainer is our managing editor. Thanks so much for listening.