S1: Welcome in San Diego , it's Jade Hindman. On today's show , we'll discuss new CDC guidelines for IUD pain management. That's the intrauterine device , the third most common birth control in the US. Also , the importance of informed consent and the fight for reproductive justice. This is KPBS Midday Edition. Connecting our communities through conversation. The IUD , or intrauterine device , is the third most common form of birth control in the US. But if you've ever had one inserted , chances are you wouldn't call the experience comfortable. In fact , dozens of women have been posting about their painful procedures on TikTok. Researchers at Duke University looked at TikTok videos with the IUD hashtag. Over a third of the top videos had a general negative tone related to pain. Another common theme was distrust of medical professionals. We asked our listeners to share their IUD stories. Emily Barton in downtown San Diego said her second IUD was much more painful than the first.
S2: 2020 five minutes of the most severe pain I'd ever experienced my life. I saw black , I almost passed out. I felt like throwing up. We had to stop multiple times. It was just so painful.
S1: And Halie did grew in la. Mesa says she researched the procedure beforehand , but nothing could have prepared her for the pain.
S3: The TikTok stories and various online posts about this are so simultaneously like relieving to see , because I don't want other people to deal with what I dealt with , but they also , um , trigger like a panic response because I am just so mad that I let this happen to my own body.
S1: While patients may soon have more options. Earlier this month , the centers for Disease Control and Prevention issued new guidance about IUD pain management. The agency recommends person centered pain counseling and the IUD process for the first time. It also says lidocaine might be useful for reducing pain. Here in San Diego , researchers have been studying pain management for IUD insertion for years , including Doctor Sheila mody , who is a professor in the Department of Obstetrics , gynecology and Reproductive Sciences at UC San Diego. Doctor Mody joins me now. Welcome to the show.
S4: Thank you.
S1: Well , let's start with the basics. For those who don't know what exactly is an IUD.
S4: Um , it works multiple ways to decrease the risk of pregnancy. One is it thins the lining , um , of the uterus , and then it also thickens the cervical mucus. It's one of the most effective methods that we have for pregnancy prevention.
S1: So let's talk about the subject at hand here. Pain associated with the IUD insertion. First of all , what makes the procedure so painful.
S4: So it really is important to understand that this procedure is a different experience for those who have had deliveries before versus people who have not had deliveries. So people who have not had a delivery , which we call those people Nullah Paris , um , individuals , their cervix is closed. And so when replacing the IUD , it's going through the kind of that closed cervix. So that's where a lot of the discomfort comes for nullah Paris individuals in particular. So that's really what makes the procedure uncomfortable. A lot of the prior studies had focused on non-steroidal anti-inflammatory drugs , like NSAIDs , that are like ibuprofen , to think about the cramping , but a lot of the discomfort that comes from the placement for individuals is actually going through that cervix. And that's why the lidocaine has been very helpful in that aspect.
S1: And you've really spearheaded a lot of research around lidocaine and pain management and IUDs , particularly the use of lidocaine para cervical blocks.
S4: So what we do is we administer lidocaine around the cervix. And we do give the lidocaine through injection. So there is a little discomfort with injection on a scale of 1 to 10 that discomforts about a three. But it does. We did a randomized control study among those individuals and it did decrease the pain with the procedure. It went from a 54 to a 33 on a 100 point scale. And I will tell you that was in the research study. But since the study , I offer routinely to my fellow individuals and and I often ask them , what is your pain control ? What is your pain after the procedure ? And they often say about a about a three out of ten. So very consistent with the study , I think the key is really numbing up that cervix that hasn't been opened before. And so we do give it's about 20 cc's. It's a specific amount that we give that has been shown to work. There has been another study as well from UPenn among adolescents with a smaller IED did that , did the ten CCS but still a pair of cervical block. And it did show a decrease in pain also. So it really does seem that lidocaine locally is the key to decreasing the pain for individuals receiving IDs.
S1:
S4: So it's tolerated by most individuals. And it does , you know , by receiving that lidocaine , it does decrease the pain with the actual procedure. Um , five minutes afterwards when we measure the uterus to place the IED and then overall for the procedure. So we know that was the big question , is this , you know , is it worth it to get the lidocaine ? Um , and we have shown through that randomized controlled trial that it is it is worth it.
S1: You've touched on this , but if you could describe the pain that patients have reported without the use of pain treatment.
S4: So typically on that , um , 100 point scale , their pain without the treatments about a 54 um , in our study. And I think that's , you know , I think pain is a very hard thing to study. There's a big standard deviation in what people experience in terms of pain. But I would say it's on the higher end of like Pernilla Paris women. And you know between that 50 and even maybe a little bit higher range. So that's really why this the lidocaine could be helpful. Wow.
S1: Wow.
S4: I really think that I think a lot of OB GYNs have their heart in the right place. This is a really highly effective method. Um , it's a low maintenance method. We've been , you know , very , um , and patients are really excited about this method as well. And so I think , um , it's hard to , to offer this method that has this pain , painful procedure for people who haven't had children before. So now by offering the lidocaine , it's been really a very pleasant experience for everyone involved. I also have trainees with me. I have medical students , residents and fellows that join in some of my clinics. And so , you know , for them to see a patient be able to choose what method they have and then have a pleasant procedure , I think has been a better experience for them and being able to offer that service also , just the staff , the medical assistance , everyone involved , we we really feel like we're we're giving patients a good experience when they come in for these IUD placements. So and it hasn't it hasn't interrupt clinic flow or anything like that. It's it's a very it doesn't take very long to place and it's it's very much appreciated.
S1: And are there any side effects to the lidocaine injection. Yeah.
S4: So there is that little bit of the injection discomfort when we're placing it. And so we walk patients through that. And they they know when we're you know we're doing it. Um we usually have them take deep breaths through it. Sometimes , um , people feel a little of the lidocaine side effects , like metallic taste in their mouth or ringing their ears , but those usually , um , go away quite rapidly after the IUD placement. Um , we usually just have patients lie down for about ten minutes afterwards , and if they feel a little lightheaded or dizzy from the procedure or from receiving the lidocaine , that also resolves with just a little bit of time. Our clinic also , we do other things. We play relaxation music and we turn down the lights of the patients desire that. So there's a lot of like TLC for our procedures just to make it as pleasant as possible.
S1: I also want to talk about the significance of this CDC guidance.
S4: And really , I think it will be a good thing for for there to be shared decision making about what should be offered for pain control and what the patient would like to experience during the procedure.
S1: Well , now , CDC guidance like this takes a while to actually make it into the doctor's office.
S4: They may offer it for patients that are , you know , very concerned about pain but may not offer it routinely for their patients. I think there's still a little bit of education regarding what is the level of discomfort patients are experiencing with these IUD placements , with and without the lidocaine , and also knowing that the actual injection pain isn't that uncomfortable on that scale. And and because I think there are some clinicians that really do think , you know , that for the most part , these IUD procedures aren't that uncomfortable. They're quick. And then the light cane injection may hurt more than benefit. So I do think that there's going to still be a lot of education to be done of clinicians of , of this option. Um , and there are some clinicians that don't routinely do para cervical blocks for other procedures , and they'll need some training on how to do them as well. And so but I don't think it should be a barrier to use. I think this should be a definitely a shared decision between the clinician and the patient and open conversation and see , you know , knowing what the clinician can offer and what the patient would like to have , and then and then a decision whether to proceed with the placement with or without the block. Yeah.
S1: Yeah. And as you mentioned there , I mean , the idea of a shared decision , I mean , that's actually part of the updated CDC guidelines. Talk about why that's so important.
S4: Yeah , I think it's it's one of those things that seems very simplistic but is incredibly important to put it as. The most important thing is that there's a conversation between the patient and the clinician in terms of recommendations and patient priorities , patient's concerns , and then just kind of coming together to figure out what makes sense for that particular patient. It's personalizing care. It's listening to the patient's prior experiences and concerns and just coming together to come up with a personalized care plan.
S1:
S4: What does that look like ? What can they do for pain control ? Um , what is the clinic offer ? So it's something that just to have that conversation and , um , you know , it might involve two appointments , but if that's what really makes sense for the patient , then that's should be an option. Um , we have telehealth. I just actually this morning did some telehealth consults about this topic where I met the patients , told them what we offer , and then they're going to schedule their IUD placements. So it could either be one appointment or two appointments that just taking a moment beyond just choosing an IUD , but also talking about what is that experience of IDD placement look like and what are the pain control options. Yeah.
S1: Yeah. Right. Well , so in my mind , I would think that pain management would have been something considered when these procedures first surfaced.
S4: So in the past it was these individuals who have had pregnancies and deliveries before , and that IED placement experience is different. So more recently we've seen more people who haven't had children pursue IEDs and then have , you know , more discomfort with the actual placement of the IED. This topic has been something that's been studied for at least 15 , if not more years , because we've been trying to tackle it and there's been various different interventions looked at. We've looked at the ibuprofen. We've even looked at a cervical softening medication called misoprostol. That does not work for decreasing pain with the placement. We've looked at topical lidocaine and we looked at this para cervical block and inter cervical blocks. And so I think it's just you know taken time to to to figure out which one works. And now it's taking some time to disseminate that information. So again I think that there will be more discussions about this with the CDC recommendations , more shared decision making. But I do think this has been something that's been a top of mind for many people for many years. And now , you know , I think the patients are kind of requesting it. So I think there will be a shift with this recommendation.
S1: All right. I've been speaking with Doctor Sheila mody. She's a professor in the Department of Obstetrics , Gynecology and Reproductive Sciences at UC San Diego. Doctor Mody , thank you so much for being on the show today.
S4: It was my pleasure. Thank you for inviting me.
S1: Coming up , Loretta Ross , co-founder of the reproductive justice movement , shares her story and mission.
S5: Shop around for an empathetic doctor who takes your needs seriously versus just settling for someone who doesn't give you time , won't talk to you , won't discuss your options with you.
S1: More when KPBS Midday Edition returns. Welcome back to KPBS Midday Edition. I'm your host , Jade Hindman. On today's show , we're talking about reproductive health. We just heard from a San Diego physician about new CDC guidelines for IUD pain management. But we're reminded that medical guidelines for birth control have come a long way over the last few decades. Our country has a long history of reproductive coercion and forced sterilization , making informed consent all the more important. Many procedures have put women's health at risk , often with serious consequences. For example , the infamous Dal concealed IUD. It was taken off the market in the 70s after many women developed pelvic inflammatory disease , and some even died. To discuss this , I sat down with Loretta Ross , one of the founders of the reproductive justice movement. She is also an associate professor of women and gender at Smith College. I asked Loretta to describe her experience at Howard University in the 70s , when she first received the concealed IUD.
S5: Well , unfortunately , the Dow concealed was poorly designed. So after my insertion , about three years after my insertion , I started developing acute PID , or what they call pelvic inflammatory disease. And because I was in an HMO , I had to go to the doctor who was in that HMO , and he kept misdiagnosing my PID as a STD and it wasn't. It was because of the dioxin shield. So eventually my fallopian tubes exploded because of six months of untreated PID and I fell into a coma , got taken to the hospital in an ambulance , and woke up a few hours later. And the doctor , the same doctor that had misdiagnosed me , had done a total hysterectomy on me , and I was 23 years old at the time. And so he was congratulating himself , actually , for how he had done such a great job saving my life , when my life wouldn't have been at risk if he had done a proper diagnosis six months before.
S1: I am so sorry that happened to you. Um , when you had that procedure done , did the doctor walk you through any concerns with the IUD or potential side effects.
S5: Even , uh , it was inserted at the Howard University Health Service , which was the free clinic that students were able to access. So that's where I got it from. And no , there were no warnings. I'm not sure if any warnings were even known or available at that time. I did not know about the defects of the Dow concealed until after my hysterectomy. I consulted with another ob gyn. The one that I would have preferred to use , except that he wasn't in the HMO plan. And he. After I told him what happened , he asked me to get a copy of my medical records , and when he saw it that that kind of shield hadn't been removed after six months of treatment by this doctor. That's when he said , I have literature on my desk right now that is warning about the dangers of the concealed design. So why wouldn't the head of OBGYN at George Washington University Hospital not have that same information ? I was angry because it's kind of hard to be told at 23 that you won't have any more children. I don't know how to describe how surreal it was to wake up and be surrounded by a half moon of medical students and doctors congratulating themselves on saving your life , when in fact it was their medical malpractice that put my life at risk in the first place. So I was very , very angry. And because of that , I contacted an attorney and launched a lawsuit against A.H. Robbins , the maker of the dioxin shield. And I believe I got one of the earliest settlements out of A.H. Robbins , because that was before the class action suit was launched. Yeah.
S1: Yeah. I mean , you know what strikes me in your stories that you were essentially diagnosed with an STD. With no evidence to support that claim , there was no informed consent when they decided to remove your reproductive organs.
S5: But I think that the OBGYN at George Washington had made some racial lies assumptions about me. I was already a mother. Uh , I already had one child , and that was one of the things he said. Well , aren't you glad you've already got a child ? I mean , that kind of thing. And that doesn't mean I didn't plan on having more. I actually thought I was going to end up with about 5 or 6 children because I came from a large family myself. And so I did distrust some doctors , and I became very picky about what level of and quality of service I would receive. And right now , if a doctor doesn't sit down with me and talk to me and explain everything they're doing and why they are doing it , I just don't trust them. And I refuse to continue to use their services because I deserve to know what's going on.
S1:
S5: Even though I'd had a teen pregnancy and suffered through childhood sexual abuse , that wasn't what really triggered my involvement with the reproductive health rights and justice movement , but that sterilization was kind of like the wake up call. And so that's how I entered the movement working against sterilization abuse. And it wasn't until I got into the movement and started to learn about abortion rights and the right to have children and all of those things that I became involved , even though I'd had an abortion at 16. I was lucky enough to have had my abortion in Washington , D.C. , right after they had decriminalized abortion in 1970 , which was three years before Roe v Wade. So I was able to go to the Washington Hospital Center and have a perfectly legal and safe abortion. I was really fortunate to have been in that that narrow window , to be able to access a legal and safe abortion at a hospital before the Hyde Amendment kicked in in 1976 or 77. And so I did not organize or think I needed to organize around abortion rights. But the sterilization certainly got my attention. And that's when I started connecting the dots around what we now call reproductive oppression.
S1: Yeah , well , talk a bit more about what that is and give me a little bit of history and context about forced sterilization here in America.
S5: Well , forced sterilization has been something that has been imposed upon vulnerable people. Oh , for centuries , but particularly as it affected black women after the Civil War ended in 1865 , the same children that were seen as a wealth building strategy for white people then became defined as a problem. And so sterilization abuse was rampant in the black community. I mean , it didn't even matter what your preexisting condition was. I mean , you could go to a hospital and complain about acne and they would say , well , you know , if you didn't have all of these inconvenient plumbing , you would , you know , that would cure your acne and your swollen feet. And so we needed to organize to protect our reproductive autonomy. And actually , in 1973 , when Roe v Wade was passed , the National Council of Negro Women offered a very grave warning. And she said , we have to make sure that this new so-called benefit doesn't become another way of oppressing black women. And of course , when we deal with the fact that when women are incarcerated , they sometimes have abortions forced upon them , particularly if there's reason to believe that the prison guards are the ones that impregnated them. And so we've always had to fight for our reproductive autonomy as black women from the forced childbirth during the enslavement to the sterilization abuse , after the enslavement to medical mistreatment , to misdiagnosis , to ignoring black women's pain. I mean , even Serena Williams was not respected when she had that scare during her pregnancy. And so we always have to stand up for ourselves and not count on the courts or politicians to protect us.
S1: Let's talk a bit about the legacy of reproductive coercion and how that's carried into the 21st century.
S5: Well , one of the examples of it , of course , is a whistleblower in the ice. This a nurse who was working in the Ice detention centers a couple of years ago exposed that women who were in these detention centers , who were immigrants without documentation , were being unnecessarily sterilized by doctors in those detention centres so that they wouldn't be able to have children that could lay a claim on birthright citizenship by being born in the United States. And , of course , out in California. There was another exposé about how women within the California prison system were being , uh , sterilized. I think the group called Justice Now did an exposé on that. So even though we have laws on the books that prohibit such practices , they are still taking place amongst vulnerable women who do not have , uh , the voice , the knowledge or the political privilege to speak up against these things. Wow.
S1: Wow. And you were one of the founders of the reproductive justice movement. As we mentioned earlier. Tell me what that term means and where it came from.
S5: Well , reproductive justice was created in July of 1994 , and I was one of 12 black women who were at a conference sponsored by the Illinois Pro-Choice Alliance. And at that conference , we heard a presentation from the Clinton administration , president Bill Clinton , about how they were trying to do health care reform. And they imagined in their strategy that if they omitted reproductive health care from health care reform , they could get the support of a few Republicans to get it passed. Now , that was a very suspect strategy , and it was even more ridiculous that they would come to a pro-choice feminist conference and ask us to endorse a health care plan that was so male centric , because if you omit reproductive health care from health care reform. You're admitting the main reason women go to the doctors. And so it just didn't seem to make sense to us as a strategy. And so in our conversations , we spliced together the term reproductive rights and social justice. And that's where the term reproductive justice came from. We create we 12 black women created it and then we went on to populate it. The first tenet is that we stood with the pro-choice movement and fighting for the right not to have children through abortion , birth control , or abstinence , but because it was black women who were creating this framework and our history of sterilization abuse. The second tenet became the right to have children and to control the conditions under which you would have children. And then the third tenet really addressed the gap that both the pro-life and the pro-choice movement neglects. And that is what happens to the child once it's born. And so that became a way of talking about gun violence and environmental problems and unfair taxation and poverty and all the things that really affect how well a child can be raised in our society. So the right to have a child , the right not to have a child , and the right to parent your children is safe and healthy. Environments became the core original definition of reproductive justice. And approximately ten years after that first definition was developed , the LGBTQ community added a fourth tenet , which is the right to gender identity , bodily autonomy , and sexual pleasure. So now we call those the four pillars of reproductive justice.
S1:
S5: But now we see it being used in policy papers , position papers by the Democrats. We see people , for example , the attorney general of the state of Massachusetts , Andrea Campbell , has started a reproductive justice unit within the AG's office to prosecute crimes that violate people's human rights , like withholding people's access to birth control or denying somebody a right to have an abortion , or forcing someone to have an abortion when they didn't want to. And so we're really pleased that how this concept has moved from the margin into the center of reproductive policies now. So it's appearing in position papers , it is appearing in public health departments , etc.. And this latest development with the Attorney General's office is showing that people are looking intersectionality at criminal law and how it can be used to protect women's reproductive freedoms and rights.
S1: Well , on a more interpersonal level , what more can physicians do to understand here and validate patients experiences with pain ? Well , I.
S5: Happen to have had really good physicians that take my perspective seriously. And then I've also had awful ones that don't. And so you should shop around for an empathetic doctor who takes your needs seriously , versus just settling for someone who doesn't give you time in their in their office visits won't talk to you , won't discuss your options with you. I mean , doctors are doctors , and they're people too. And so there's good ones out there and there's bad ones. And so I would say , always remember that you deserve to have the best doctor that's available , the best position that's available. And if you don't like what one physician is , how they're treating you or ignoring your reports , go find another one because your life is worth it.
S1: Yeah , a lot of advocacy has to happen there. Before I let you go.
S5: I mean , I think the people opposed to human rights are fighting forces way beyond their control because they're fighting the truth , they're fighting history , they're fighting evidence. And most of all , they're fighting time. And I don't think they can defeat those existential forces. All of that stuff is on our side. Truth , evidence , time and history. And so it's not happening at the speed I could wish it could happen , but I think there's an inevitability about it.
S1: That was my conversation with Loretta Ross , one of the founders of the reproductive justice movement and associate professor of women and gender at Smith College. That's our show for today. I'm your host , Jade Hindman. Thanks for tuning in to Midday Edition. Be sure to have a great day on purpose , everyone.
