IUDs for All
July 15, 2022 12:45 PM Subscribe
IUDs for All
Contraception, and control and understanding of your own body are pressing topics. IUDs are remarkably effective, but not as available or as popular as they could be – and insertion is more painful than it should be. We’re investigating innovations to empower women to design and insert their own IUDs.
IUD4A is still an early exploration, we welcome and need all feedback, suggestions, etc.
NOTE: this information presented for educational purposes only!
NOTE2: I am biologically male, and am somewhat aware of the weirdness and limitations of trying to innovate in this space.
Contraception, and control and understanding of your own body are pressing topics. IUDs are remarkably effective, but not as available or as popular as they could be – and insertion is more painful than it should be. We’re investigating innovations to empower women to design and insert their own IUDs.
IUD4A is still an early exploration, we welcome and need all feedback, suggestions, etc.
NOTE: this information presented for educational purposes only!
NOTE2: I am biologically male, and am somewhat aware of the weirdness and limitations of trying to innovate in this space.
Role: designer
The main part of the document is serious. How can I say this... the part about jewelry and dazzle is partly to get people thinking differently (its like piercings!), and partly to reframe the conversation away from whether this is a medical device, which might have some regulatory implications.
But maybe its just too confusing.
posted by thandal at 6:54 AM on July 16, 2022
But maybe its just too confusing.
posted by thandal at 6:54 AM on July 16, 2022
As a gyn patient my sole interest in this process is to get the IUD safely installed with as little pain and fuss as possible. This is important for everyone, but there's a particular need for privacy and empowerment for people who have experienced trauma, which I won't go into here.
The dazzle/jewelry angle feels out of touch. Is it possible to push harder on the regulatory side, get some deeper legal advice on what can and can't be claimed?
Also, would you like a hand with document layout and formatting?
posted by mochapickle at 7:54 AM on July 18, 2022
The dazzle/jewelry angle feels out of touch. Is it possible to push harder on the regulatory side, get some deeper legal advice on what can and can't be claimed?
Also, would you like a hand with document layout and formatting?
posted by mochapickle at 7:54 AM on July 18, 2022
I'm happy enough to just drop the dazzle angle, since it seems to distract -- done!
mochapickle -- I hadn't even *thought* about improving the layout! I'd be very interested in help! Mefi mail me or something and I could share the Google doc, if that works for you?
posted by thandal at 11:05 AM on July 18, 2022
mochapickle -- I hadn't even *thought* about improving the layout! I'd be very interested in help! Mefi mail me or something and I could share the Google doc, if that works for you?
posted by thandal at 11:05 AM on July 18, 2022
As a person who got her first IUD in her 20s and is now on my second, I love where your heart is! Everyone should have access to an IUD that wants one. Also, this idea deeply wigs me out.
1. I am not at all an expert but it seems like failure modes for this product could include a punctured uterus if inserted incorrectly or if the device malfunctions, or possibly a terrible infection if used in less than perfectly sanitary conditions.
2. All uteruses are also not shaped or positioned the same - will the device be able to account for those differences?
3. Even when inserted by a gynecologist, after effects of an IUD can include cramps and heavy bleeding. If something goes wrong, with the insertion, will the user know to seek medical attention?
Apologies if you addressed any of these questions and I missed or didn't understand it.
(Also I got here after the "dazzle" stuff was removed, which is fine but now I am so curious about how anything inside an internal organ could be aesthetically embellished! I actually felt a lot of fondness for my first IUD and thought about asking to keep it when it was taken out but didn't due to the gross factor. If it was dazzling however, maybe I would have made a pendant out of it or something, ha.)
posted by prewar lemonade at 8:49 AM on July 19, 2022 [2 favorites]
1. I am not at all an expert but it seems like failure modes for this product could include a punctured uterus if inserted incorrectly or if the device malfunctions, or possibly a terrible infection if used in less than perfectly sanitary conditions.
2. All uteruses are also not shaped or positioned the same - will the device be able to account for those differences?
3. Even when inserted by a gynecologist, after effects of an IUD can include cramps and heavy bleeding. If something goes wrong, with the insertion, will the user know to seek medical attention?
Apologies if you addressed any of these questions and I missed or didn't understand it.
(Also I got here after the "dazzle" stuff was removed, which is fine but now I am so curious about how anything inside an internal organ could be aesthetically embellished! I actually felt a lot of fondness for my first IUD and thought about asking to keep it when it was taken out but didn't due to the gross factor. If it was dazzling however, maybe I would have made a pendant out of it or something, ha.)
posted by prewar lemonade at 8:49 AM on July 19, 2022 [2 favorites]
Yeah, I spent some more time thinking about this overnight. And I'm so excited about people who are coming up with bold alternatives to the looming state limitations of healthcare. We need more people doing this.
But I've been thinking more and more about my own experiences with IUDs. I do not require birth control, so my own IUD, a Mirena, was placed in response to unusually heavy bleeding that had landed me in the hospital for blood transfusions. The initial Mirena decision required two ultrasounds and a gyn exam, plus the consultation of two different doctors because apparently my uterus is heart-shaped and they weren't certain it would stick. The process to install required a skilled gyn and a medical assistant who talked me through it. I bled hard for two days after (enough that if it hadn't been installed by a pro I would have worried) and then everything was great.
It did stick, for just shy of a year, but I started bleeding again. I'd been bedridden for most of that time but in midwinter my mom was sick so I went to her house, lifted things, moved a mattress, vaccuums. I think that's what dislodged the IUD. So I had to have another gyn exam, and then an abdominal xray to make sure the IUD hadn't broken through and had wandered elsewhere, then a gyn appointment to install, including a panic attack because my hemoglobin had by that point dropped back below 7, then it was great but really lightheaded due to persistent anemia, then I was bleeding a LOT again, like Overlook Hotel Elevator blood, then another exam then another ultrasound (dark room, a different technician) to find the IUD was there but dangling, so we had to take it out. And I'm still under specialized treatment for anemia as a result of all of this, which has been intense and stressful and has required multiple appointments to address.
I like to do as much DIY as I can. But the IUD thing is so complex.
- About 1/4 of cervixes are tilted (mine was) which means the install would be nonstandard for a big part of this population.
- Some uteruses aren't a good match for IUD. Even the medical professionals who were like, hey, this might be an issue -- they weren't entirely sure.
- It's delicate down there and things can go wrong. You don't have the access to the ultrasounds and xrays that I had to have to make sure I wasn't going to have serious complications. It's easy to introduce bacteria.
-It's still really complex for DIY. People have trouble with tampons.
- It's painful. Pain/stress means that your cervix won't dilate enough for the installation to take place. My own GYN told me that she fainted when they put hers in. I wouldn't want to faint during this.
I think the liability question is therefore huge. For people who want to have children someday, there's a real risk of doing enough damage to threaten your ability to conceive and carry.
And if you live in a state where IUDs are outlawed, and you have a problem, and you seek medical care, there's a chance you won't be seen due to doctors being concerned about their own liability. In Texas, doctors fearing legal liability right now are refusing to see patients with ectopic pregnancies until they've lost liters of blood. The states and the feds are duking it out but I don't like the way the wind is blowing.
So again, I'm thrilled about empowering people to take charge in the face of oppressive limits to healthcare and I have a lot of respect for people who are thinking of ways to do this. I'm just wondering what, if anything, could be done to reduce the considerable risk of something going wrong.
posted by mochapickle at 9:59 AM on July 19, 2022 [1 favorite]
But I've been thinking more and more about my own experiences with IUDs. I do not require birth control, so my own IUD, a Mirena, was placed in response to unusually heavy bleeding that had landed me in the hospital for blood transfusions. The initial Mirena decision required two ultrasounds and a gyn exam, plus the consultation of two different doctors because apparently my uterus is heart-shaped and they weren't certain it would stick. The process to install required a skilled gyn and a medical assistant who talked me through it. I bled hard for two days after (enough that if it hadn't been installed by a pro I would have worried) and then everything was great.
It did stick, for just shy of a year, but I started bleeding again. I'd been bedridden for most of that time but in midwinter my mom was sick so I went to her house, lifted things, moved a mattress, vaccuums. I think that's what dislodged the IUD. So I had to have another gyn exam, and then an abdominal xray to make sure the IUD hadn't broken through and had wandered elsewhere, then a gyn appointment to install, including a panic attack because my hemoglobin had by that point dropped back below 7, then it was great but really lightheaded due to persistent anemia, then I was bleeding a LOT again, like Overlook Hotel Elevator blood, then another exam then another ultrasound (dark room, a different technician) to find the IUD was there but dangling, so we had to take it out. And I'm still under specialized treatment for anemia as a result of all of this, which has been intense and stressful and has required multiple appointments to address.
I like to do as much DIY as I can. But the IUD thing is so complex.
- About 1/4 of cervixes are tilted (mine was) which means the install would be nonstandard for a big part of this population.
- Some uteruses aren't a good match for IUD. Even the medical professionals who were like, hey, this might be an issue -- they weren't entirely sure.
- It's delicate down there and things can go wrong. You don't have the access to the ultrasounds and xrays that I had to have to make sure I wasn't going to have serious complications. It's easy to introduce bacteria.
-It's still really complex for DIY. People have trouble with tampons.
- It's painful. Pain/stress means that your cervix won't dilate enough for the installation to take place. My own GYN told me that she fainted when they put hers in. I wouldn't want to faint during this.
I think the liability question is therefore huge. For people who want to have children someday, there's a real risk of doing enough damage to threaten your ability to conceive and carry.
And if you live in a state where IUDs are outlawed, and you have a problem, and you seek medical care, there's a chance you won't be seen due to doctors being concerned about their own liability. In Texas, doctors fearing legal liability right now are refusing to see patients with ectopic pregnancies until they've lost liters of blood. The states and the feds are duking it out but I don't like the way the wind is blowing.
So again, I'm thrilled about empowering people to take charge in the face of oppressive limits to healthcare and I have a lot of respect for people who are thinking of ways to do this. I'm just wondering what, if anything, could be done to reduce the considerable risk of something going wrong.
posted by mochapickle at 9:59 AM on July 19, 2022 [1 favorite]
prewar lemonade, mochapickle: I don't have a lot of answers to your questions, and they're good questions.
I guess the key question I'm interested in (but definitely don't know) is how many of the perforated uteruses and other complications come from brittle IUD designs and mechanistic/forceful insertion procedures... and how much the process would be improved if it is under the control of someone who can *feel* when something is going wrong and adjust or stop it!
One strong piece of evidence that I have is that women seem to be able to remove their own IUDs without doing massive damage. There certainly isn't consensus on that, but I *suspect* removing the IUD is actually a rougher procedure than insertion (since it involves folding the arms back by dragging them through the cervix).
Maybe an analogy is nasal swabbing -- for me at least, every time someone did it to me it was painful and kind of panic-inducing. Later on, when I was doing it myself, it certainly wasn't pleasant at all, but it was much more controlled. I don't know if this analogy holds here at all.
(I do think there are good answers to making things sterile, and even a tilted cervix by using a tilted insertion tube -- instead of pulling it straight with a tenaculum!)
posted by thandal at 7:32 AM on July 20, 2022
I guess the key question I'm interested in (but definitely don't know) is how many of the perforated uteruses and other complications come from brittle IUD designs and mechanistic/forceful insertion procedures... and how much the process would be improved if it is under the control of someone who can *feel* when something is going wrong and adjust or stop it!
One strong piece of evidence that I have is that women seem to be able to remove their own IUDs without doing massive damage. There certainly isn't consensus on that, but I *suspect* removing the IUD is actually a rougher procedure than insertion (since it involves folding the arms back by dragging them through the cervix).
Maybe an analogy is nasal swabbing -- for me at least, every time someone did it to me it was painful and kind of panic-inducing. Later on, when I was doing it myself, it certainly wasn't pleasant at all, but it was much more controlled. I don't know if this analogy holds here at all.
(I do think there are good answers to making things sterile, and even a tilted cervix by using a tilted insertion tube -- instead of pulling it straight with a tenaculum!)
posted by thandal at 7:32 AM on July 20, 2022
Instead of the nasal swabbing analogy, this is a better one: male urethral stent catheterization (YT). Would you feel comfortable inserting and removing that? Would you know if you got it in the right place or not? Would you think differently about doing it yourself if the three most common consequences of misplacing it were heavy bleeding, infection, or 18 years of responsibility for another human along with an 8% drop in income?
I'm feeling testy, I guess. A big part of me keeps thinking, "Wouldn't it be nice if women could just, y'know, get adequate and humane healthcare?"
Others have spoken about some of the physical/medical issues involved. One thing I encourage you to review is the language of the doc. In many places it feels scare-mongery. Some examples are calling the insertion process and tools invasive, primitive, involved, rough, and medieval. They're no more invasive than the stent linked above. They're less medieval than the clamps and retractors used for surgeries, I'd argue. And, 99% of the procedure to insert an IUD is the same as an annual GYN/PAP visit. Most of the people I know who have IUDs got them inserted in the span of maybe 5 minutes. So if you're going down the path that the process and tools are invasive, involved, or medieval, then every normal, well-person visit for GYN health also gets lumped into that bucket.
More than that, however, this language distracts from the most pressing reason for doing this project: The highest court in the United States is oppressing women. You can lead with how invasive a speculum is, but it's nothing compared to how invasive this court decision is.
However (!) I also love the initiative and intent behind this project. So in the spirit of moving it forward, some of my implementation questions are:
- The document says the device length and curvature can be designed to an individual anatomy. How would a person get those measurements and angles?
- The copper wire looks like it has the potential to scrape along the vaginal and cervix walls if not wrapped correctly. Can you also provide instructions for that aspect along with the device?
- Many people wanting birth control seek it out in opposition to their partner's wishes. Can the software be at least password protected, and even more strongly encrypted so that it remains private, but that anatomical measurements don't have to be retaken? I haven't played around with 3D printers in a while, but I imagine they can be hacked to divulge user information. If so, are there ways to prevent this? (These are some of the same reasons for concerns about period-tracking apps.)
- Trimming the string is not yet in a design stage that I would be comfortable with as a user. I think something that trims it as the ID is being withdrawn makes sense. To me, it makes less sense and has more chance for injury if you need to go back in with scissors or a clipper of some sort.
posted by cocoagirl at 3:13 PM on July 21, 2022 [1 favorite]
I'm feeling testy, I guess. A big part of me keeps thinking, "Wouldn't it be nice if women could just, y'know, get adequate and humane healthcare?"
Others have spoken about some of the physical/medical issues involved. One thing I encourage you to review is the language of the doc. In many places it feels scare-mongery. Some examples are calling the insertion process and tools invasive, primitive, involved, rough, and medieval. They're no more invasive than the stent linked above. They're less medieval than the clamps and retractors used for surgeries, I'd argue. And, 99% of the procedure to insert an IUD is the same as an annual GYN/PAP visit. Most of the people I know who have IUDs got them inserted in the span of maybe 5 minutes. So if you're going down the path that the process and tools are invasive, involved, or medieval, then every normal, well-person visit for GYN health also gets lumped into that bucket.
More than that, however, this language distracts from the most pressing reason for doing this project: The highest court in the United States is oppressing women. You can lead with how invasive a speculum is, but it's nothing compared to how invasive this court decision is.
However (!) I also love the initiative and intent behind this project. So in the spirit of moving it forward, some of my implementation questions are:
- The document says the device length and curvature can be designed to an individual anatomy. How would a person get those measurements and angles?
- The copper wire looks like it has the potential to scrape along the vaginal and cervix walls if not wrapped correctly. Can you also provide instructions for that aspect along with the device?
- Many people wanting birth control seek it out in opposition to their partner's wishes. Can the software be at least password protected, and even more strongly encrypted so that it remains private, but that anatomical measurements don't have to be retaken? I haven't played around with 3D printers in a while, but I imagine they can be hacked to divulge user information. If so, are there ways to prevent this? (These are some of the same reasons for concerns about period-tracking apps.)
- Trimming the string is not yet in a design stage that I would be comfortable with as a user. I think something that trims it as the ID is being withdrawn makes sense. To me, it makes less sense and has more chance for injury if you need to go back in with scissors or a clipper of some sort.
posted by cocoagirl at 3:13 PM on July 21, 2022 [1 favorite]
Thanks cocaogirl. I am definitely with you that the main thing to do is to sort out basic healthcare and contraception. Unfortunately, I think there is a very long way to go there. I would also point out that the world is larger than the USA and its problematic court, and the rest of the world has significant problems around access.
The urethral stent catheterization is an interesting comparison point, thank you. But I don't think ad hominem is exactly how to proceed with this analogy or discussion. (FWIW I think I would try the stent if my prostate were blocked and it was illegal or impossible to see a doctor about it... because what else am I going to do!?!)
In terms of language: I think standard IUD insertion *is* more invasive (the stent is much closer to what the IUD4A document proposes!). There is no speculum with the stent. No stirrups. No tenaculum puncture wounds. At least in that one video, there is discussion of anesthetic, whereas many women seem to indicate that they were not provided adequate anesthetic. I will happily clarify that not *all* IUD insertions are unnecessarily traumatic, but it is clear that many are.
In terms of your questions.
- Re IUD shape: I'm not sure, baring things like ultrasound. There are some studies about the shape of the uterus of people who have not had a baby yet, vs those who have. Maybe, if some people were comfortable with this whole process, they would start with a smaller IUD, and switch to different designs if they have discomfort or if the IUD doesn't stay in.
- Re cervix angle: this is something that I *think* is somewhat observable just using the camera -- I'll add a note
- You are spot on with the question around the copper wire ends -- I flag it a little in the doc, but it certainly merits more discussion (and investigation)
- Re software: There isn't really any custom software. I don't know about all 3D printers, but the situation is pretty close to a paper printer: if you wipe the model files off of your laptop... its gone. If you use an online service to print the parts, then that could be a concern.
- Re string trimming: I agree with your points, and I'm not sure about this part. One approach would be to trim the strings to approximately the right length ahead of time -- I used to have some language about that, but can't find it just now and I'll add a note that this is still something that is being worked on.
posted by thandal at 9:18 AM on July 28, 2022
The urethral stent catheterization is an interesting comparison point, thank you. But I don't think ad hominem is exactly how to proceed with this analogy or discussion. (FWIW I think I would try the stent if my prostate were blocked and it was illegal or impossible to see a doctor about it... because what else am I going to do!?!)
In terms of language: I think standard IUD insertion *is* more invasive (the stent is much closer to what the IUD4A document proposes!). There is no speculum with the stent. No stirrups. No tenaculum puncture wounds. At least in that one video, there is discussion of anesthetic, whereas many women seem to indicate that they were not provided adequate anesthetic. I will happily clarify that not *all* IUD insertions are unnecessarily traumatic, but it is clear that many are.
In terms of your questions.
- Re IUD shape: I'm not sure, baring things like ultrasound. There are some studies about the shape of the uterus of people who have not had a baby yet, vs those who have. Maybe, if some people were comfortable with this whole process, they would start with a smaller IUD, and switch to different designs if they have discomfort or if the IUD doesn't stay in.
- Re cervix angle: this is something that I *think* is somewhat observable just using the camera -- I'll add a note
- You are spot on with the question around the copper wire ends -- I flag it a little in the doc, but it certainly merits more discussion (and investigation)
- Re software: There isn't really any custom software. I don't know about all 3D printers, but the situation is pretty close to a paper printer: if you wipe the model files off of your laptop... its gone. If you use an online service to print the parts, then that could be a concern.
- Re string trimming: I agree with your points, and I'm not sure about this part. One approach would be to trim the strings to approximately the right length ahead of time -- I used to have some language about that, but can't find it just now and I'll add a note that this is still something that is being worked on.
posted by thandal at 9:18 AM on July 28, 2022
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posted by cocoagirl at 6:30 PM on July 15, 2022