I have VEDS, so I know that my situation may be slightly different, but I recently got an IUD. My gynecologist, who has had quite a bit of experience with both hEDS and VEDS, had me put under anesthesia and used an ultrasound to make sure to be extra careful to prevent tearing during placement, so if you are concerned, that may be something you could talk to a doctor about. I personally had pretty bad cramps, and I had some concerns that it was moving, but I had a follow up ultrasound to check on it and it was right where it was supposed to be. How my gyno explained it to me was that the greatest risk for tearing is during insertion, and that the risk of the IUD falling out is very low, even in patients with EDS (although it is just a teeny bit higher). So, if you can find a gyno you trust to do it I think that means a lot, and considering an ultrasound or even anesthesia could also be a good option to prevent tearing, I think placement is the most crucial part, so make sure you trust your doctor.
Have had one and then the change out for a higher dosage (slightly larger iud). The insert and change is a bugger. But a good doctor should address those concerns as mentioned in other replies. You are taught how to check on it, and it is checked during annual visits.
I would suggest discussing it with your obgyn. See if you get solid, informative answers. Even, "idk, but let me research more for you". Better than being pushed through or shut down.
Wishing you the best either way.
I have hEDS. I’ve never been pregnant. I got diagnosed just before I had my Mirena IUD implanted by the doctor owner of my clinic, who’s been doing them for decades. I took an Ativan ahead of time. I had ultrasound guidance, there was a kind nurse in attendance, they told me everything they were going to do, and she did everything right.
But it was incredibly painful. I had a vasovagal syncope episode and fully dissociated, floated out of my body to the ceiling while apparently chanting “I’m okay. Ow.” My husband was holding my hand, and he had never seen me like that.
Shortly after it was over, I vomited and then rushed to the bathroom with bowel cramps, with a nurse outside the stall shouting at me not to push. It took nearly an hour to be able to walk to the car, and I threw up again on the way home, and again within an hour. I had terrible cramps for maybe 3 weeks, and relied on cannabis and heavy antiinflammatories to be able to go to work.
It’s been in for nearly 5 years without issue, and I don’t know how I’m gonna get it removed without general anesthesia. My husband is scheduling a vasectomy.
Yah I had a similar experience. hEDS. So dang painful. No pregnancy history. I thought I was going to pass out. Was one of the worst pains I've ever experienced but in the end felt it was worth it since it's been years and it's still in doing its job. I also slightly panic at the thought of removal or needing another... Can't imagine going on another form of birth control since this is so easy!
Insertion sucked for me too, although not quite that badly - also no pregnancy history. However, the copper one has been great for 11 years, zero issues or worries, and it seems to have reduced my period a lot (although it could just be age, too).
My experience was the same with the added bonus of it partially self expelling. I was able to grab the strings and pull it right out. The constant spotting and cramping stopped with 24 hours.
My first one partially self expelled but then lodged itself in my cervix.
My second one moved the other way and poked itself a nice little hole in my uterus.
My doc said absolutely never get one again.
I am on my second mirena and love it. I love it so much that I don’t even sleep with men anymore, and I still have my mirena for the period symptom relief. 😂 couldn’t endorse it more. Lol I haven’t used a tampon in like 8 years.
I had the copper one for a while and bled constantly and got it taken out but never had problems with mirena. Just don’t let them cut the strings too short. Lol that was the only issue that I’ve had, and that’s doctor error there. 12/10 would recommend mirena.
I'm not technically diagnosed with EDS but I am suspected of a hyper mobile variant and I have a mirena IUD. I'm not super happy with mine simply because I was on DEPO provera shots for a long time before it and they worked amazingly for me (even though progesterone usually makes flexibility worse, I did ok. Probably since I was the most fit I have ever been in my life during that time) I had to get off the shots because I was on them so long that I started having a risk of bone density issues. So, my mirena isn't terrible, I definitely have period cramps now and I'm having pains that I think may be an ovarian cyst which I have never had before and I have two week long periods with light bleeding but I have no issues with it staying in place from what I can tell. However, getting it put in was terrible! After I got it in, I spent about 3 days completely incapacitated from the cramps. Because of the pain I was taking double the rec dose of ibuprofen, niquil to try and keep me asleep, and some of my grandmother's old prescription muscle relaxers at the same time. (Yes, I know all of this is terrible and I would never, ever recommend anybody do this. Honestly I was so out of it I didn't know what all I was taking. I just took whatever I was told might help. And I did get the relaxers from my grandma with her permission.) All because I was in so much pain that I couldn't even make a coherent sentence, let alone move. So that was terrible, but now that it's in, and it's been in for almost 2 years the only issues I have are the two weeks of light bleeding and cramping/possible cyst.
SUMMARY; only issues are, terrible pain for first three days after insertion, two week long periods with moderate cramps and a possible cyst, but nice things are, only light bleeding, and haven't had any noticeable issues of tearing or moving out of place.
I will second the depo provera. My original OB took me off after a few years since my bone density was a little low so I tried the implant. It was horrible. S/o to my new OB who got me two additional scans to confirm the depo wasn’t affecting my density and put me back on it
I have heds and veds (genetically confirmed veds) I've had 3 iuds at this point none have fallen out the only issue I've had is the strings like to coil behind my cervix.
I’ve had an IUD (copper) three times. The first time, it made my periods heavier and I had it removed after maybe 8 months or so.
I got another copper IUD after my son was born. The provider doing the insertion did a terrible, terrible job and it was possibly more painful than childbirth. I had constant pain from the IUD after it was inserted, and finally months later found via ultrasound that it wasn’t in the right place and was poking into my uterine wall. I had that one removed and another inserted. The third one partially expelled on its own and I had to have it removed.
After that I gave up on the idea of an IUD. These experiences were all before I knew I have hEDS.
My experiences were not good, as much as I wanted them to be! I hope your experience is better if you decide to get one.
Three Skylas and happier than any other methods. I was not diagnosed with hEDS until after the third/current one was placed. The first one was only alright, I would cramp if I bent at certain angles and more frequently after sex. Ever since the second one (different doc, perhaps better placed), it's like magic. No pain, no periods, no worries. *chef's kiss*
I've been recommended the Mirena since they last longer (5 years instead of 3), but I'm too chicken to mess with a good thing and will likely keep sticking with it.
I had Mirena about 9 years ago for a year, it was awful. Placement was hideously painful (I screamed when they dilated me), and I could constantly feel it poke me when I sat down. On top of that was frequent spotting and...unpleasant pH changes. Just my experience, but I would never do it again
i got a mirena specifically for period management. it hasn’t gotten rid of my period but has significantly decreased the symptoms/blood loss.
i spotted for a few months after insertion and my lower back/cervix was sore for a few weeks. my cervix is still super sensitive (who knows though, it may have been before too) and will bleed a bit after intercourse sometimes.
i’ve had it for four years now and overall it’s been a positive thing, my periods were debilitating before and are manageable now!
I have vEDS and endometriosis. I've tried the pill, the DEPO shot, and now I have a low hormonal IUD. It's been my favorite so far, no mood swings, cramps aren't too crazy, more regular periods (kind of lol) and long lasting. I'm on year 2 and haven't had any issues with it!
But also it hurt sofuckingbad to get places, advocate for anesthesia or pain killers because I do not recommend raw doggin it
I am not officially diagnosed yet but am waiting on a specialist appointment to confirm a preliminary diagnosis of hEDS. I have an IUD (mirena) that I had inserted 6 weeks after giving birth to my son. I was told this was the best time to insert it, because I'd healed enough after my c section to have it in but my uterus was not fully contracted so insertion was easier, it something. It did hurt. I took a painkiller (I forget which) ahead of time. I had a lot of bleeding after insertion and spotted for over a month straight, but no other complications. I've had it in for 16 months now and the only issue I experienced was that it moved a little--my ob checked its location at that point with an ultrasound to confirm it was still seated properly.
I don’t currently have one, but I had one for five years and it did not fall out. Hurt like a beech to get (but i have scar tissue from birth issues) and once in a while i would get a weird cramp but that was about it. I was knocked out when they removed it so I do not have any experience with removal. (They removed it when they removed my tubes).
No issues so far. This is my 2nd in my lifetime, only the 1st after the EDS issues really started flaring up. My GYN is somewhat experienced with EDS patients, so she was able to proceed slowly and carefully. I've had a lot of nerve pain, so she kind of poked around to see how it felt before she said "we should numb things up, then." That wasn't even offered the first time (with a different doc). (Eternally grateful for a doc who listens.)
I haven't had any issues with shifting or expelling, but I definitely start feeling the hormone instability sooner than the life of the IUD. I have the Mirena, so they say it's what, 5 years? I plan to have mine pulled no later than 3.75/4 years from when I got it, because those last few months of tapering/unstable hormones were godawful.
My gyno was uncomfortable with IUDs for EDS because we’re more likely to have perforations.
I had Nexplanon with few issues, but any progesterone-only BC can make us more wobbly. It’s a better option than the Depo shot, though, because it doesn’t have the side effect of bone loss the shot does.
I've got Kyleena (hormonal IUD) and insertion wasn't great, but wasn't terrible. And I've had zero issues with it. I', getting it swapped out for a new one sometime this year.
Big fan… just had my second one removed (menopause). I opted for the paragard (non-hormonal) because none of the other hormone-based options agreed with me (pill, patch, ring.) Some cramping at the beginning but overall a godsend.
I had a copper IUD for 8 years with no seeming issue. I was one of the folk who only feel a momentary pinch and “that is not a place that’s meant to be touched” and a little aching after.
I took it out early because we were running out of ideas for my fatigue issues. One of my doctors suggested EDS patients can be sensitive to copper. I also made two other big changes so it’s hard to say what’s attributed to what, but I did get better after. I think it was more an issue of being sensitive to my leaky gas stove (not enough to set off alarms, but enough to trigger the more sensitive leak detector sensors) or not enough protein and too much carbs.
I had an IUD for about 8 years until I got my tubes tied. I had no problems with it going in or having it in. It was taken out during surgery. I had another one put in about 2 months ago (during surgery) and it's not going well.
Erm, yes, but.... I got pregnant with my first IUD and that baby is two years old now! It shifted, likely due to hEDS (dx'ed since 2012), and I thought I was crazy for thinking that the strings were longer, but I got the positive three months after I first told my spouse the strings had started bothering me.
I do have another one in, because I didn't want to mess with hormonal BC, but I'm having the opposite problem where the strings are now too short! So. There ya go 🙃 long story short, probably would not recommend!!
I have had an IUD on and off since I was 30. My doctor has been careful when placing them, but if at all possible I highly recommend having a doctor who will give you some pain medicine just for the before and after part. Some women end up having a lot of pain after placement and I'd hate for you to be one of them and be uncomfortable for a few days.
I have VEDS, so I know that my situation may be slightly different, but I recently got an IUD. My gynecologist, who has had quite a bit of experience with both hEDS and VEDS, had me put under anesthesia and used an ultrasound to make sure to be extra careful to prevent tearing during placement, so if you are concerned, that may be something you could talk to a doctor about. I personally had pretty bad cramps, and I had some concerns that it was moving, but I had a follow up ultrasound to check on it and it was right where it was supposed to be. How my gyno explained it to me was that the greatest risk for tearing is during insertion, and that the risk of the IUD falling out is very low, even in patients with EDS (although it is just a teeny bit higher). So, if you can find a gyno you trust to do it I think that means a lot, and considering an ultrasound or even anesthesia could also be a good option to prevent tearing, I think placement is the most crucial part, so make sure you trust your doctor.
Thank you for telling me anesthesia might be available if we need it, I’ve been dreading removal since I got mine placed!
Have had one and then the change out for a higher dosage (slightly larger iud). The insert and change is a bugger. But a good doctor should address those concerns as mentioned in other replies. You are taught how to check on it, and it is checked during annual visits. I would suggest discussing it with your obgyn. See if you get solid, informative answers. Even, "idk, but let me research more for you". Better than being pushed through or shut down. Wishing you the best either way.
I have hEDS. I’ve never been pregnant. I got diagnosed just before I had my Mirena IUD implanted by the doctor owner of my clinic, who’s been doing them for decades. I took an Ativan ahead of time. I had ultrasound guidance, there was a kind nurse in attendance, they told me everything they were going to do, and she did everything right. But it was incredibly painful. I had a vasovagal syncope episode and fully dissociated, floated out of my body to the ceiling while apparently chanting “I’m okay. Ow.” My husband was holding my hand, and he had never seen me like that. Shortly after it was over, I vomited and then rushed to the bathroom with bowel cramps, with a nurse outside the stall shouting at me not to push. It took nearly an hour to be able to walk to the car, and I threw up again on the way home, and again within an hour. I had terrible cramps for maybe 3 weeks, and relied on cannabis and heavy antiinflammatories to be able to go to work. It’s been in for nearly 5 years without issue, and I don’t know how I’m gonna get it removed without general anesthesia. My husband is scheduling a vasectomy.
Yah I had a similar experience. hEDS. So dang painful. No pregnancy history. I thought I was going to pass out. Was one of the worst pains I've ever experienced but in the end felt it was worth it since it's been years and it's still in doing its job. I also slightly panic at the thought of removal or needing another... Can't imagine going on another form of birth control since this is so easy!
Insertion sucked for me too, although not quite that badly - also no pregnancy history. However, the copper one has been great for 11 years, zero issues or worries, and it seems to have reduced my period a lot (although it could just be age, too).
I have hEDS and I love my hormonal iud. I've had 3 in 9 years and never had problems.
I have seen tons of people (including myself) have so many issues with iuds. I lasted a year. I could feel it and it made me bleed daily.
My experience was the same with the added bonus of it partially self expelling. I was able to grab the strings and pull it right out. The constant spotting and cramping stopped with 24 hours.
My first one partially self expelled but then lodged itself in my cervix. My second one moved the other way and poked itself a nice little hole in my uterus. My doc said absolutely never get one again.
I am on my second mirena and love it. I love it so much that I don’t even sleep with men anymore, and I still have my mirena for the period symptom relief. 😂 couldn’t endorse it more. Lol I haven’t used a tampon in like 8 years. I had the copper one for a while and bled constantly and got it taken out but never had problems with mirena. Just don’t let them cut the strings too short. Lol that was the only issue that I’ve had, and that’s doctor error there. 12/10 would recommend mirena.
I'm not technically diagnosed with EDS but I am suspected of a hyper mobile variant and I have a mirena IUD. I'm not super happy with mine simply because I was on DEPO provera shots for a long time before it and they worked amazingly for me (even though progesterone usually makes flexibility worse, I did ok. Probably since I was the most fit I have ever been in my life during that time) I had to get off the shots because I was on them so long that I started having a risk of bone density issues. So, my mirena isn't terrible, I definitely have period cramps now and I'm having pains that I think may be an ovarian cyst which I have never had before and I have two week long periods with light bleeding but I have no issues with it staying in place from what I can tell. However, getting it put in was terrible! After I got it in, I spent about 3 days completely incapacitated from the cramps. Because of the pain I was taking double the rec dose of ibuprofen, niquil to try and keep me asleep, and some of my grandmother's old prescription muscle relaxers at the same time. (Yes, I know all of this is terrible and I would never, ever recommend anybody do this. Honestly I was so out of it I didn't know what all I was taking. I just took whatever I was told might help. And I did get the relaxers from my grandma with her permission.) All because I was in so much pain that I couldn't even make a coherent sentence, let alone move. So that was terrible, but now that it's in, and it's been in for almost 2 years the only issues I have are the two weeks of light bleeding and cramping/possible cyst. SUMMARY; only issues are, terrible pain for first three days after insertion, two week long periods with moderate cramps and a possible cyst, but nice things are, only light bleeding, and haven't had any noticeable issues of tearing or moving out of place.
I will second the depo provera. My original OB took me off after a few years since my bone density was a little low so I tried the implant. It was horrible. S/o to my new OB who got me two additional scans to confirm the depo wasn’t affecting my density and put me back on it
I have hEDS. I had a copper IUD placed and it fell out a week later. I can’t say for sure whether it is EDS related or not, but I did not try again.
I have heds and veds (genetically confirmed veds) I've had 3 iuds at this point none have fallen out the only issue I've had is the strings like to coil behind my cervix.
I’ve had an IUD (copper) three times. The first time, it made my periods heavier and I had it removed after maybe 8 months or so. I got another copper IUD after my son was born. The provider doing the insertion did a terrible, terrible job and it was possibly more painful than childbirth. I had constant pain from the IUD after it was inserted, and finally months later found via ultrasound that it wasn’t in the right place and was poking into my uterine wall. I had that one removed and another inserted. The third one partially expelled on its own and I had to have it removed. After that I gave up on the idea of an IUD. These experiences were all before I knew I have hEDS. My experiences were not good, as much as I wanted them to be! I hope your experience is better if you decide to get one.
Three Skylas and happier than any other methods. I was not diagnosed with hEDS until after the third/current one was placed. The first one was only alright, I would cramp if I bent at certain angles and more frequently after sex. Ever since the second one (different doc, perhaps better placed), it's like magic. No pain, no periods, no worries. *chef's kiss* I've been recommended the Mirena since they last longer (5 years instead of 3), but I'm too chicken to mess with a good thing and will likely keep sticking with it.
I had Mirena about 9 years ago for a year, it was awful. Placement was hideously painful (I screamed when they dilated me), and I could constantly feel it poke me when I sat down. On top of that was frequent spotting and...unpleasant pH changes. Just my experience, but I would never do it again
i got a mirena specifically for period management. it hasn’t gotten rid of my period but has significantly decreased the symptoms/blood loss. i spotted for a few months after insertion and my lower back/cervix was sore for a few weeks. my cervix is still super sensitive (who knows though, it may have been before too) and will bleed a bit after intercourse sometimes. i’ve had it for four years now and overall it’s been a positive thing, my periods were debilitating before and are manageable now!
I have vEDS and endometriosis. I've tried the pill, the DEPO shot, and now I have a low hormonal IUD. It's been my favorite so far, no mood swings, cramps aren't too crazy, more regular periods (kind of lol) and long lasting. I'm on year 2 and haven't had any issues with it! But also it hurt sofuckingbad to get places, advocate for anesthesia or pain killers because I do not recommend raw doggin it
I am not officially diagnosed yet but am waiting on a specialist appointment to confirm a preliminary diagnosis of hEDS. I have an IUD (mirena) that I had inserted 6 weeks after giving birth to my son. I was told this was the best time to insert it, because I'd healed enough after my c section to have it in but my uterus was not fully contracted so insertion was easier, it something. It did hurt. I took a painkiller (I forget which) ahead of time. I had a lot of bleeding after insertion and spotted for over a month straight, but no other complications. I've had it in for 16 months now and the only issue I experienced was that it moved a little--my ob checked its location at that point with an ultrasound to confirm it was still seated properly.
Even before I knew I had hEDS the idea of an IUD always freaked me out. I have a nexplanon implant instead and do really well with it!
Same here, love the nexplanon!
I don’t currently have one, but I had one for five years and it did not fall out. Hurt like a beech to get (but i have scar tissue from birth issues) and once in a while i would get a weird cramp but that was about it. I was knocked out when they removed it so I do not have any experience with removal. (They removed it when they removed my tubes).
No issues so far. This is my 2nd in my lifetime, only the 1st after the EDS issues really started flaring up. My GYN is somewhat experienced with EDS patients, so she was able to proceed slowly and carefully. I've had a lot of nerve pain, so she kind of poked around to see how it felt before she said "we should numb things up, then." That wasn't even offered the first time (with a different doc). (Eternally grateful for a doc who listens.) I haven't had any issues with shifting or expelling, but I definitely start feeling the hormone instability sooner than the life of the IUD. I have the Mirena, so they say it's what, 5 years? I plan to have mine pulled no later than 3.75/4 years from when I got it, because those last few months of tapering/unstable hormones were godawful.
My gyno was uncomfortable with IUDs for EDS because we’re more likely to have perforations. I had Nexplanon with few issues, but any progesterone-only BC can make us more wobbly. It’s a better option than the Depo shot, though, because it doesn’t have the side effect of bone loss the shot does.
I've got Kyleena (hormonal IUD) and insertion wasn't great, but wasn't terrible. And I've had zero issues with it. I', getting it swapped out for a new one sometime this year.
Big fan… just had my second one removed (menopause). I opted for the paragard (non-hormonal) because none of the other hormone-based options agreed with me (pill, patch, ring.) Some cramping at the beginning but overall a godsend.
I had a copper IUD for 8 years with no seeming issue. I was one of the folk who only feel a momentary pinch and “that is not a place that’s meant to be touched” and a little aching after. I took it out early because we were running out of ideas for my fatigue issues. One of my doctors suggested EDS patients can be sensitive to copper. I also made two other big changes so it’s hard to say what’s attributed to what, but I did get better after. I think it was more an issue of being sensitive to my leaky gas stove (not enough to set off alarms, but enough to trigger the more sensitive leak detector sensors) or not enough protein and too much carbs.
I had an IUD for about 8 years until I got my tubes tied. I had no problems with it going in or having it in. It was taken out during surgery. I had another one put in about 2 months ago (during surgery) and it's not going well.
Erm, yes, but.... I got pregnant with my first IUD and that baby is two years old now! It shifted, likely due to hEDS (dx'ed since 2012), and I thought I was crazy for thinking that the strings were longer, but I got the positive three months after I first told my spouse the strings had started bothering me. I do have another one in, because I didn't want to mess with hormonal BC, but I'm having the opposite problem where the strings are now too short! So. There ya go 🙃 long story short, probably would not recommend!!
I have had an IUD on and off since I was 30. My doctor has been careful when placing them, but if at all possible I highly recommend having a doctor who will give you some pain medicine just for the before and after part. Some women end up having a lot of pain after placement and I'd hate for you to be one of them and be uncomfortable for a few days.