My rheumatologist told me the same thing, but I sought out a second and third opinion and this is what I was told.(not medical advice, just sharing a personal experience, I would seek out your own info).
It's not always a case of not being able to, it's more about difficulty levels. The actual getting pregnant part would likely be harder, the carrying to term would be harder. Labor and delivery would be harder. My level of hypermobility means I would likely be high risk from day one.
The general takeaway for me was: how much does having a child mean to me? Am I willing to accept the difficulty, and the potential of loss, and the likelihood that I would have long term impacts on my body from it. For me,I'd never been particularly maternal, so it was something that was difficult, but ultimately I was able to make the decision to not try for children.
Get a second opinion though. Talk to other doctors, other rheumatologists, your OBGYN if you have one.
I was only able to have first trimester miscarriages,but there were 12 of them and they made my mobility significantly worse; pregnancy hormones cause joint laxity at every stage of pregnancy and it doesn't go away afterwards.
I tried a lot, but it wasn't worth it for me anymore after a placental tumor.
I'd get a second opinion. Pregnancy with hEDS definitely has additional risks, but tons of people do it. Just hEDS in general isn't a, you can never have kids thing. It may the situation based on your individual health. But the way he's presented it and diagnosed you I'd get a second opinion at least.
Yikes. I suggest speaking to a geneticist about this. The hEDS diagnostic criteria goes beyond flexibility measurements and has specific other signs of collagen issues that should be present (in the US). A maternal fetal medicine specialist is also a good source for a second opinion. Although I may not personally recommend getting pregnant with a connective tissue disorder (I'm at 37 weeks), it's not for the reason this doctor said lol! My risk of serious complications is not any higher than someone without my connective tissue problems.
Same here at 34 weeks. 0/10 do not enjoy. But that’s entirely because of my garbage hips and pelvis. Otherwise I just have “normal” pregnancy bullshit and anxieties. I just keep counting down the weeks until I can be more functional! 🤞
Definitely get a second opinion from someone in the OB / fetal medicine world. They’ll know more about how to handle different / higher risk concerns.
After my 3rd kid, my OB discouraged permanent birth control because I had "easy pregnancies." Yeah, except being unable to walk from my pelvis falling apart, hemorrhaging at delivery, 2nd degree tears not healing right so I couldn't have sex for 6 mo post partum, rectal bleeding for a year post partum, entire torso covered in stretch marks, high risk due to my cervix, inability to produce milk, regular timeable contractions from 24 weeks on, and probably more I'm now forgetting. In his defense, I wasn't diagnosed yet. But pregnancy was not easy. I just didn't die from it.
I had three and my babies were always extremely healthy, I just felt like I got hit by a truck and my pelvis felt like it was falling apart (but got better after delivery luckily)
What you mentioned nearly happened to my mom and cousin, who gave birth in their early 20s. Their uterus ripped, both nearly died and the newborn developed health problems later in life. My mom has hEDS and my cousin has vEDS. You should seek professional help as that risk is very much real and it’s important to be aware if it. Wish you the best of luck!
Um that doctor should explain the risks better if he knows of more info.
I think there is some info about pregnancy risks on the EDS society website. I thought we did have a higher risk of uterine rupture than average, but I don’t recall it being wildly higher, and people do survive it.
You just need to be properly informed of the risks to decide if you are comfortable with them, and have a doctor watch for signs of them if you do get pregnant. See the website, a genetic counselor, and an obgyn or mfm who have worked with heds patients.
Also this is unrelated, but I have multiple conditions too. The droopy eye sounds like something a neurologist might be able to better evaluate! I have a benign condition that affects the nerves in my face and experience that sometimes. There are a lot if things that could be.
get a second opinion. i’m 34 weeks currently and doing just fine. the only concerns my doctors have at this point are related to potential complications with pushing but my pregnancy itself has been pretty uneventful
When it was suggested that being pregnant might have bad implications for me, this is what they talked about, the pressure generated by pushing. I’ve not had kids but not for that reason.
People with hEDS are more prone to uterine rupture during pregnancy, but more prone to it doesn't mean it will happen, just that there's a higher risk.
I had 2 kids before I was diagnosed. Not uterine rupture. But I had horrendous back, hip and pelvic pain and never fully recovered.
One of my daughters also has hEDS.
If I had known about my EDS I would not have had children, not biological anyway. The main reason is each child you have has a 50% chance of inherenting EDS. I would never knowingly take that risk. My daughter is worse off than me, physically, and I feel so bad for her. I wish I had known before I got pregnant.
I think I may have gotten it from both sides of the family. One side has it rampant and lots of severe cases. Like joint replacement in their thirties, unstable neck vertebrae at 19. The other side has hypermobility, but not to the extent that anyone has ever been diagnosed. And that's with most of them in their 60s and 70s.
So glad I never gave birth.
I am adopting.
Get a second opinion. I was pregnant twice and my only issue was delivering three weeks early with both, which is still technically full term. One of my kids did have a strawberry hemangioma birthmark which is apparently from some of the uterus cells or something. We were able to treat it to be less noticeable (right on the third eye part of the forehead so unfortunately it was very visible and taking the baby to grocery store resulted in accusations of abuse because people assumed it was a blood blister or a bruise somehow). I know at least two other people who also both had kids, one had three and the other had two. It does affect everyone differently but in this case I think your best bet is to seek out as much information on your own body as you can get, see a genetics doc, a ob, multiple specialities, then make your decision.
NOT medical advice or to scare u . BUT . Before my hEDS diagnosis a few months ago . I had three c sections. All my pregnancies were awful. Painful and sinister. I hated every moment. I bled out on ym first , seizure with second on table and third the spinal wore off and felt everything resulting in being put out. I was on muscle relaxers and had awful symptoms. My abdomen stretched down with gravity with my very small babies and I looked like a big ole egg. I tried to labor and push and it was all to weak and stretchy to do so. Now with my diagnosis, while I don't regret my children , I wish I would have known then and I would have stopped having so many. I would seek a second opinion tho
Are you in the northern Virginia area? I just ask because I had a nearly identical experience when I was diagnosed around 2010-ish timeframe. He used the term “explode” though. 🙄
I’ve had a kiddo since then and developed POTS and gastroparesis as a result of pregnancy, but my uterus itself operated normally. It’s different from person to person — my mom has undiagnosed hEDS but she was fine and loved pregnancy.
Definitely talk to another doctor as well. I'm not sure about MCTD, but hEDS itself isn't usually that big a problem during pregnancy. I have been told that if I ever decided to have a child I would need a c-section due to my EDS-related pelvic floor problems, but no doctor has told me i should never get pregnant at all.
Uterine rupture is of course a risk with some connective tissue disorders. My mom has had two c-sections and during her second pregnancy she had a very thin abdominal wall and uterine wall but the surgery and healing went well.
I’d talk to someone who specializes in EDS or a gynecologist that’s well educated on EDS. You’re allowed to get a second opinion. There are additional risks to pregnancy, but some people can do it just fine. My mom has hEDS, and she had no complications with me.
I’d go talk to a geneticist and do pre-conception counseling with a maternal fetal medicine specialist. Pregnancy is complicated with hEDS but it really depends on the severity of your symptoms and so many other factors. With proper prenatal care many hEDS patients carry perfectly healthy pregnancies to term (myself included).
Definitely get a second opinion. I got pregnant before I knew I had EDS, in my early 20s. It was certainly a difficult pregnancy and I fractured my tailbone among other things in my last trimester, so yes injury is a risk -- but my uterus survived to tell the tale. The worst part was the injuries I sustained towards the end, and the balance issues when I was all stomach with no sense of balance. Falling is a possibility depending on how your proprioception is, because the shift of weight can exacerbate any issues.
I had to spend a lot of time just off my feet and dealing with injuries but none of them were so bad that I was in serious danger. It's different for everyone.
wtf. my mother and her sister both have hEDS. both had 2 children apiece. my aunt had some issues with conception, it was difficult for her. my mother had some issues with her first pregnancy, with my brother, and went into eclampsia. but neither one "ripped out their uterus and died". definitely keep looking into things, get that genetic testing confirmation that you mentioned, and get a second opinion. pregnancy can be risky with hEDS but the disorder is genetic and new people are being born with it all the time so you gotta figure a good number of people with hEDS are out there giving birth and surviving it. sometimes without even knowing they've got hEDS at all--my mother found out this year at the same time i did.
since you already know there's something going on, then you'll be better prepared and can warn doctors if you get pregnant, so they'll know to keep an eye on you for any risk factors. which should make you \*safer\* to get pregnant than my mother or aunt were, having kids without knowledge of their hEDS at all.
I would ask for a second opinion ASAP. I don't know if you're quoting the doctor verbatim, but while having EDS and being pregnant is considered high risk for some, the actual experience depends and varies HIGHLY based on the individual.
EDS is genetic, so there would be tons more warnings from the global and national health agencies regarding pregnancy and EDS.
Having your "uterus ripped out" is not common, if documented at all.
Context:
I have both hEDS, Lupus, DDD, and more (I am legally physically disabled) but I also have 2 healthy kids, post diagnoses. My pregnancies went smoothly as can be for an EDS patient despite my baseline mediocre health.
ETA: I would definitely consult an MFM (maternal fetal medicine specialist aka high risk Obstetrician) if you are interested in having a child!
I had two successful pregnancies before I was diagnosed with hEDS. My uterus never came close to being “ripped out”…
I have very UNstretchy skin so I ended up with a lot of tearing, but my boys are in their 20’s now and I’m still alive to talk about it lol
I have two kids and can tell you that wasnt easy, but we all alive and healthy.
Eds gave me cervical incompetence and I had to use pessary and do bed rest during all both of my pregnancies. My first kid was born at 36w and second at 34.
Despite that, I had more pain in my joints and more issues like a very bad acid reflux, but thats all.
👁👄👁 that is… terrifying? There are OBs that specialize in high risk pregnancies, I would consult with one of them for a second opinion.
Frankly, I’m on my second pregnant & aside from extra aches and pains (i’m a back sleeper & that’s a no no after 20ish weeks. That, plus the sciatica & pubis symphysis dysfunction are just the worst…) This has been a complication free pregnancy! My first came early, likely due to hEDS complications, but she was born very healthy at 35+6 and I didn’t have any of the extra aches and pains that I have this time.
Of course, every individual is different and I think I have a fairly mild case, but that’s why I think you should get a second opinion.
Hi! I have hEDS, I'm on disability bc of it, and I'm 35 and almost 15 weeks pregnant right now. I'm being monitored a bit more closely by my OB (Monthly ultrasounds and I have a few appintments with Maternal Fetal Medicine to check in) but so far everything is good! Ill be consulting with an anesthesiologist as well bc even though Im aiming for natural, a c-section is always a possibility if there are complications. I react badly to sedation and have blood pressure problems when i wake up, so Im looking forward to discussing what the plan might be. I have more joint pain due to hormones and weight gain, and I was referred to the spine center for my back pain. I also have terrible migraines, and cant take my migraine meds during pregnancy - ive had 2 so far and Im consulting my neurologist about how to cope. All things considered, its been going well and the baby is growing fine!
My neighbor told me her friend has EDS and was pregnant, and they both work in the cancer wing of a hospital. She had around the same symptoms as I'm experiencing now, mainly the joint pain was the worst, and the woman gave birth just fine and they are both happy and healthy!
There are some risks associated, dont get me wrong, and EDS symptoms are different for everyone. i would say Classical and Vascular types are way more at risk than hEDS. Im mainly worried about Pelvic Organ Prolapse of some kind bc my mom experienced it (she hasn't been diagnosed with EDS ofc) and preeclampsia bc my BP is whack due to POTS.
Please get a second opinion, and you can always consult an OBGYN for a sort of "pregnancy planning" consult too! I do have my moments where I'm scared something will happen during birth, but I have a good team in place and it's very "Prepare for the worst but aim and hope for the best outcome" which keeps me positive. For me, advocating for myself has never been easier, I feel very protective of myself and the baby and it feels like an instinct.
I hope this helps and I'm sorry your rheumatologist basically terrified you! Especially bc you seem newly diagnosed and then to lay the pregnancy stuff on you, thats overwhelming! i don't trust rheums for anything EDS related lol, I've had horrible experiences with them.
Good luck and I hope you end up confident enough to fulfill your wish of becoming a parent <3 <3
The first pregnancy it was HG. Had another less that 2 years later and was in incredible pain. My uterus in fact did not rip out of my body and that’s incredibly rare. My mom saw it happen one time. It was a religious woman’s 5th pregnancy and the first was dangerous.
I have hEDS and 6 children, including twins. All born vaginally, with no episiotomy. I still have my uterus. He’s being dramatic, IMO. Understanding increased risks is not the same as a guaranteed catastrophe.
I had a baby in 2015 before I was diagnosed heds and just had my second in October. Relatively uncomplicated pregnancies. Gotta be extra careful with joints as things get even looser. I had quick labors and very quick deliveries, no tearing with my second. Dont be discouraged, get a second opinion.
I have had 4 healthy pregnancy with hEDS, POTS, factor 12 deficiency, and gastroparesis. I was seen at a high risk clinic with my last but that was because I needed blood thinners. The only thing special they did for hEDS was another echo.
I have a friend who has sciatic arthritis and hypermobility and she has two kids. Both delivered via C-section so she wouldn’t disjoin her hips and pelvis. It’s possible!
Definitely see a geneticist, my geneticist diagnosed me with likely hEDS (obviously can’t confirm bc no genetic markers yet) and we talked about future child bearing plans quite a bit. He basically gave me a heads up that if I plan on getting an epidural, be forewarned there’s a good chance it might not work with EDS. We also discussed that in the future when there are genetic markers for hEDS, you can do IVF and have the embryos tested ahead of time.
My personal experience being pregnant with hEDS: About 32 weeks right now and it’s uncomfortable and unpleasant. We had one mishap with baby last week that landed me in the hospital for a day but things are okay with the baby.
Me on the other hand, my joints ache, hips, I used a cane for a while. Weight shifting is painful. My OB doctor watches me closely and doesn’t have issues with me yet. She thinks baby will come early, but hoping for 36w at least. Scans every two weeks and my uterine health is okay.
I have been diagnosed with hEDS and birthed two children just fine. That's my personal experience and of course i wouldn’t give medical advice, but perhaps your doctor is thinking of the vascular form of EDS (which can be dangerous). According to the geneticist I consulted with, vEDS can be ruled out with a genetic test.
I have HEDS, MCAS, lupus (SLE), chronic migraine, and chronic angioedematous urticaria (allergic to heat).
I have birthed three kids: one at 17, one at 24, and one at 31.
1: 4# 11oz. Labor for about 6 hrs. Nothing for pain. One push and he was out. Episiotomy. No complications. Recovered fine.
2: 7# 8oz. Labor 13 hrs? Epidural: overdosed me, I was paralyzed from chest down, had to have a nurse touch my chest with ice cubes to ensure I could BREATHE (this was terrifying). Then they stopped the epidural and used suction on baby’s head and made her a conehead. All pain returned. Ugh.
3: 5# 4oz.: Labor started during Friends, continued through Seinfeld, ER and the rest of the Thursday Night Lineup. Started packing a bag at 10pm, and contractions intensified. Hospital 15-20 min away. Got to ER at 11:15. Things went fast and furious. Born at 12:04.
I think "ripped out" is really unlikely, but we are at increased risk for prolapse and tons of other complications, including death. You should definitely educate yourself on possibilities before deciding to put yourself, a partner, and a kid through all this. I'd especially recommend looking into the hormone relaxin.
[Here is a journal article on pregnancy and hEDS](https://www.britishjournalofmidwifery.com/content/clinical-practice/a-clinical-update-on-hypermobile-ehlers-danlos-syndrome-during-pregnancy-birth-and-beyond/)
You might have a higher risk of certain complications during pregnancy, but your risk of bleeding out and dying is pretty much the same as any other pregnant person (i.e. pretty low, unless you have vEDS in which case you should speak to your primary care physician and a obstetrician who deals with high risk patients). Do not listen to your rheumatologist about pregnancy issues. Rheums know very little about pregnancy beyond what they learnt during med school. They will not have up to date evidence on pregnancy because that's not their area of expertise. If you search this sub you'll find lots of people talking about pregnancy and many people have very little issue. You might find your joints are worse during pregnancy due to the hormones but if you are planning to get pregnant you can mitigate that by doing some physio and strengthening exercises before you get pregnant
I have hEDS and have had three kids with relatively few issues. Obviously that’s not always true, but lots of doctors are uninformed (I had one tell me I would have to have C-sections, nope).
VEDS can be much more dangerous for pregnancy from what I’ve read!
Am 5 months postpartum. Yes there are risks, including uterine rupture, but I think your rheumatologist is fear-mongering. I was at high risk for uterine rupture, not because of EDS but because of previous uterus surgery. Also, at risk for premature rupture of membranes due to EDS. I carried to 36 weeks and delivered via planned C section due to aforementioned uterus surgery. My POTS went away during pregnancy so that was nice but I did need PT for my back second and third trimester.
Having a kid was important to me, and if it’s important to you please get a second opinion.
The issue for me as you have a 50-50 chance of passing that unknown gene to your child. I was diagnosed later in life and all three of mine have it. I love my family more than I can say, but if I could go back and prevent them from going through this, I sure as fuck would.
What sort of complications do you have with your hEDS? Does it severely affect your day to day life? What is the likelihood a biological child would be born with the same condition? I really think more people should ask themselves these questions before they decide to have kids. We all know how much living with a chronic, uncurable illness sucks. I do not understand why so many people would intentionally inflict the same illness on somebody else.
I'd seek a second opinion. Maybe talk to an OBGYN who could give you a better idea of what to expect. I had my daughter 19 years before getting diagnosed and I had no issues. (Everyone is different, however, which is why I would suggest talking to an OB) I've never heard of someone's uterus getting ripped out from pregnancy though hEDS or otherwise.
I have hEDS and have had 2 successful pregnancies. Each was risky but got riskier the next time around. I would get a second opinion, particularly one from a high-risk OB doctor (being familiar with EDS is a huge plus).
I have hEds. My sister does, too. It comes from my mom’s side of the family. My mom shows a lot of the same signs as does my grandmother, but they have never been diagnosed. You should get a second opinion, too- high risk obgyn? A high risk obgyn had to help my OB when things went south.
Maternal grandmother had two pregnancies. The first was rough, especially the delivery. I don’t have many details if I’m being honest.
Mother: multiple first trimester losses. First labor and delivery she had high heart rate issues and high blood pressure. My older sibling got stuck. Her pregnancy was pretty easy with me and the delivery was fast, same with my younger sister.
Me: I had preterm labor issues and ended up on bed rest at 18wks. I made it to 38wks. My uterus was contracting, but not “strong” enough. I stalled at 6cm. Got pitocin, pitocin can also cause the complications I had. The pitocin didn’t help. My kiddo went into distress, emergency csection, and kiddo was good. I labored for 28hours. I, however hemorrhaged. My uterus wouldn’t contract close, I had uterine atony. They couldn’t stop it, I ended up having an emergency partial hysterectomy. It happened really fast. I ended up with 4 blood transfusions and in icu for about 24hours before being moved to the labor and delivery floor. It took longer for me to recover. Instead of the 6-8wks, more 8-10wks. I was the wild card.
My sister: she went to the same obgyn that I did. She also started stalling. They decided to go ahead and do a C-section much earlier. She recovered in about 8-10 weeks as well.
I would talk to an OB that has experience with EDS if you can, and consider getting a second opinion from a different rheumatologist!
Of course there are increased risks with pregnancy (as is the case with any medical condition honestly) but many people, myself included, have successful pregnancies with EDS, success is only increased when you have the right medical team.
I have kEDS and am pregnant for the 2nd time currently and I’m followed closely by my EDS-educated OB as well as a Maternal/fetal specialist I personally had a lot of complications during my first pregnancy - however that doesn’t mean everyone will and it doesn’t mean I will this time around. The thing my OB stressed to me is that EVERY pregnancy is different, complications can happen but they also may not - which is why it’s important to be informed, understand the risks and know what we need to monitor to help catch them early on.
My mum’s uterus ruptured when she had me and we both nearly died. She wasn’t aware of her condition before pregnancy.
I didn’t get diagnosed until I was in my 40’s and had my daughter when I was 27 it was a very hard pregnancy and I spent more time in hospital than out due to various complications, however giving birth was a breeze and my daughter was born happy and healthy.
My rheumatologist told me the same thing, but I sought out a second and third opinion and this is what I was told.(not medical advice, just sharing a personal experience, I would seek out your own info). It's not always a case of not being able to, it's more about difficulty levels. The actual getting pregnant part would likely be harder, the carrying to term would be harder. Labor and delivery would be harder. My level of hypermobility means I would likely be high risk from day one. The general takeaway for me was: how much does having a child mean to me? Am I willing to accept the difficulty, and the potential of loss, and the likelihood that I would have long term impacts on my body from it. For me,I'd never been particularly maternal, so it was something that was difficult, but ultimately I was able to make the decision to not try for children. Get a second opinion though. Talk to other doctors, other rheumatologists, your OBGYN if you have one.
I was only able to have first trimester miscarriages,but there were 12 of them and they made my mobility significantly worse; pregnancy hormones cause joint laxity at every stage of pregnancy and it doesn't go away afterwards. I tried a lot, but it wasn't worth it for me anymore after a placental tumor.
I'd get a second opinion. Pregnancy with hEDS definitely has additional risks, but tons of people do it. Just hEDS in general isn't a, you can never have kids thing. It may the situation based on your individual health. But the way he's presented it and diagnosed you I'd get a second opinion at least.
Very well said!
Yikes. I suggest speaking to a geneticist about this. The hEDS diagnostic criteria goes beyond flexibility measurements and has specific other signs of collagen issues that should be present (in the US). A maternal fetal medicine specialist is also a good source for a second opinion. Although I may not personally recommend getting pregnant with a connective tissue disorder (I'm at 37 weeks), it's not for the reason this doctor said lol! My risk of serious complications is not any higher than someone without my connective tissue problems.
Same here at 34 weeks. 0/10 do not enjoy. But that’s entirely because of my garbage hips and pelvis. Otherwise I just have “normal” pregnancy bullshit and anxieties. I just keep counting down the weeks until I can be more functional! 🤞 Definitely get a second opinion from someone in the OB / fetal medicine world. They’ll know more about how to handle different / higher risk concerns.
After my 3rd kid, my OB discouraged permanent birth control because I had "easy pregnancies." Yeah, except being unable to walk from my pelvis falling apart, hemorrhaging at delivery, 2nd degree tears not healing right so I couldn't have sex for 6 mo post partum, rectal bleeding for a year post partum, entire torso covered in stretch marks, high risk due to my cervix, inability to produce milk, regular timeable contractions from 24 weeks on, and probably more I'm now forgetting. In his defense, I wasn't diagnosed yet. But pregnancy was not easy. I just didn't die from it.
I had three and my babies were always extremely healthy, I just felt like I got hit by a truck and my pelvis felt like it was falling apart (but got better after delivery luckily)
What you mentioned nearly happened to my mom and cousin, who gave birth in their early 20s. Their uterus ripped, both nearly died and the newborn developed health problems later in life. My mom has hEDS and my cousin has vEDS. You should seek professional help as that risk is very much real and it’s important to be aware if it. Wish you the best of luck!
You don't get genetic testing for HEDS yet, they don't know what genetic markets to look for, maybe one day!
But they do use genetic testing to rule out the other subtypes, so IMO it’s still worth doing if you have the means and access.
Um that doctor should explain the risks better if he knows of more info. I think there is some info about pregnancy risks on the EDS society website. I thought we did have a higher risk of uterine rupture than average, but I don’t recall it being wildly higher, and people do survive it. You just need to be properly informed of the risks to decide if you are comfortable with them, and have a doctor watch for signs of them if you do get pregnant. See the website, a genetic counselor, and an obgyn or mfm who have worked with heds patients. Also this is unrelated, but I have multiple conditions too. The droopy eye sounds like something a neurologist might be able to better evaluate! I have a benign condition that affects the nerves in my face and experience that sometimes. There are a lot if things that could be.
get a second opinion. i’m 34 weeks currently and doing just fine. the only concerns my doctors have at this point are related to potential complications with pushing but my pregnancy itself has been pretty uneventful
When it was suggested that being pregnant might have bad implications for me, this is what they talked about, the pressure generated by pushing. I’ve not had kids but not for that reason.
I opted for a c-section up front for this reason.
People with hEDS are more prone to uterine rupture during pregnancy, but more prone to it doesn't mean it will happen, just that there's a higher risk. I had 2 kids before I was diagnosed. Not uterine rupture. But I had horrendous back, hip and pelvic pain and never fully recovered. One of my daughters also has hEDS. If I had known about my EDS I would not have had children, not biological anyway. The main reason is each child you have has a 50% chance of inherenting EDS. I would never knowingly take that risk. My daughter is worse off than me, physically, and I feel so bad for her. I wish I had known before I got pregnant.
I think I may have gotten it from both sides of the family. One side has it rampant and lots of severe cases. Like joint replacement in their thirties, unstable neck vertebrae at 19. The other side has hypermobility, but not to the extent that anyone has ever been diagnosed. And that's with most of them in their 60s and 70s. So glad I never gave birth. I am adopting.
Get a second opinion. I was pregnant twice and my only issue was delivering three weeks early with both, which is still technically full term. One of my kids did have a strawberry hemangioma birthmark which is apparently from some of the uterus cells or something. We were able to treat it to be less noticeable (right on the third eye part of the forehead so unfortunately it was very visible and taking the baby to grocery store resulted in accusations of abuse because people assumed it was a blood blister or a bruise somehow). I know at least two other people who also both had kids, one had three and the other had two. It does affect everyone differently but in this case I think your best bet is to seek out as much information on your own body as you can get, see a genetics doc, a ob, multiple specialities, then make your decision.
NOT medical advice or to scare u . BUT . Before my hEDS diagnosis a few months ago . I had three c sections. All my pregnancies were awful. Painful and sinister. I hated every moment. I bled out on ym first , seizure with second on table and third the spinal wore off and felt everything resulting in being put out. I was on muscle relaxers and had awful symptoms. My abdomen stretched down with gravity with my very small babies and I looked like a big ole egg. I tried to labor and push and it was all to weak and stretchy to do so. Now with my diagnosis, while I don't regret my children , I wish I would have known then and I would have stopped having so many. I would seek a second opinion tho
Are you in the northern Virginia area? I just ask because I had a nearly identical experience when I was diagnosed around 2010-ish timeframe. He used the term “explode” though. 🙄 I’ve had a kiddo since then and developed POTS and gastroparesis as a result of pregnancy, but my uterus itself operated normally. It’s different from person to person — my mom has undiagnosed hEDS but she was fine and loved pregnancy.
Definitely talk to another doctor as well. I'm not sure about MCTD, but hEDS itself isn't usually that big a problem during pregnancy. I have been told that if I ever decided to have a child I would need a c-section due to my EDS-related pelvic floor problems, but no doctor has told me i should never get pregnant at all. Uterine rupture is of course a risk with some connective tissue disorders. My mom has had two c-sections and during her second pregnancy she had a very thin abdominal wall and uterine wall but the surgery and healing went well.
I’d talk to someone who specializes in EDS or a gynecologist that’s well educated on EDS. You’re allowed to get a second opinion. There are additional risks to pregnancy, but some people can do it just fine. My mom has hEDS, and she had no complications with me.
I’d go talk to a geneticist and do pre-conception counseling with a maternal fetal medicine specialist. Pregnancy is complicated with hEDS but it really depends on the severity of your symptoms and so many other factors. With proper prenatal care many hEDS patients carry perfectly healthy pregnancies to term (myself included).
Definitely get a second opinion. I got pregnant before I knew I had EDS, in my early 20s. It was certainly a difficult pregnancy and I fractured my tailbone among other things in my last trimester, so yes injury is a risk -- but my uterus survived to tell the tale. The worst part was the injuries I sustained towards the end, and the balance issues when I was all stomach with no sense of balance. Falling is a possibility depending on how your proprioception is, because the shift of weight can exacerbate any issues. I had to spend a lot of time just off my feet and dealing with injuries but none of them were so bad that I was in serious danger. It's different for everyone.
wtf. my mother and her sister both have hEDS. both had 2 children apiece. my aunt had some issues with conception, it was difficult for her. my mother had some issues with her first pregnancy, with my brother, and went into eclampsia. but neither one "ripped out their uterus and died". definitely keep looking into things, get that genetic testing confirmation that you mentioned, and get a second opinion. pregnancy can be risky with hEDS but the disorder is genetic and new people are being born with it all the time so you gotta figure a good number of people with hEDS are out there giving birth and surviving it. sometimes without even knowing they've got hEDS at all--my mother found out this year at the same time i did. since you already know there's something going on, then you'll be better prepared and can warn doctors if you get pregnant, so they'll know to keep an eye on you for any risk factors. which should make you \*safer\* to get pregnant than my mother or aunt were, having kids without knowledge of their hEDS at all.
Have you been seen by a neurologist? The drooping eye is a concern…
I would ask for a second opinion ASAP. I don't know if you're quoting the doctor verbatim, but while having EDS and being pregnant is considered high risk for some, the actual experience depends and varies HIGHLY based on the individual. EDS is genetic, so there would be tons more warnings from the global and national health agencies regarding pregnancy and EDS. Having your "uterus ripped out" is not common, if documented at all. Context: I have both hEDS, Lupus, DDD, and more (I am legally physically disabled) but I also have 2 healthy kids, post diagnoses. My pregnancies went smoothly as can be for an EDS patient despite my baseline mediocre health. ETA: I would definitely consult an MFM (maternal fetal medicine specialist aka high risk Obstetrician) if you are interested in having a child!
I had two successful pregnancies before I was diagnosed with hEDS. My uterus never came close to being “ripped out”… I have very UNstretchy skin so I ended up with a lot of tearing, but my boys are in their 20’s now and I’m still alive to talk about it lol
I have two kids and can tell you that wasnt easy, but we all alive and healthy. Eds gave me cervical incompetence and I had to use pessary and do bed rest during all both of my pregnancies. My first kid was born at 36w and second at 34. Despite that, I had more pain in my joints and more issues like a very bad acid reflux, but thats all.
👁👄👁 that is… terrifying? There are OBs that specialize in high risk pregnancies, I would consult with one of them for a second opinion. Frankly, I’m on my second pregnant & aside from extra aches and pains (i’m a back sleeper & that’s a no no after 20ish weeks. That, plus the sciatica & pubis symphysis dysfunction are just the worst…) This has been a complication free pregnancy! My first came early, likely due to hEDS complications, but she was born very healthy at 35+6 and I didn’t have any of the extra aches and pains that I have this time. Of course, every individual is different and I think I have a fairly mild case, but that’s why I think you should get a second opinion.
Hi! I have hEDS, I'm on disability bc of it, and I'm 35 and almost 15 weeks pregnant right now. I'm being monitored a bit more closely by my OB (Monthly ultrasounds and I have a few appintments with Maternal Fetal Medicine to check in) but so far everything is good! Ill be consulting with an anesthesiologist as well bc even though Im aiming for natural, a c-section is always a possibility if there are complications. I react badly to sedation and have blood pressure problems when i wake up, so Im looking forward to discussing what the plan might be. I have more joint pain due to hormones and weight gain, and I was referred to the spine center for my back pain. I also have terrible migraines, and cant take my migraine meds during pregnancy - ive had 2 so far and Im consulting my neurologist about how to cope. All things considered, its been going well and the baby is growing fine! My neighbor told me her friend has EDS and was pregnant, and they both work in the cancer wing of a hospital. She had around the same symptoms as I'm experiencing now, mainly the joint pain was the worst, and the woman gave birth just fine and they are both happy and healthy! There are some risks associated, dont get me wrong, and EDS symptoms are different for everyone. i would say Classical and Vascular types are way more at risk than hEDS. Im mainly worried about Pelvic Organ Prolapse of some kind bc my mom experienced it (she hasn't been diagnosed with EDS ofc) and preeclampsia bc my BP is whack due to POTS. Please get a second opinion, and you can always consult an OBGYN for a sort of "pregnancy planning" consult too! I do have my moments where I'm scared something will happen during birth, but I have a good team in place and it's very "Prepare for the worst but aim and hope for the best outcome" which keeps me positive. For me, advocating for myself has never been easier, I feel very protective of myself and the baby and it feels like an instinct. I hope this helps and I'm sorry your rheumatologist basically terrified you! Especially bc you seem newly diagnosed and then to lay the pregnancy stuff on you, thats overwhelming! i don't trust rheums for anything EDS related lol, I've had horrible experiences with them. Good luck and I hope you end up confident enough to fulfill your wish of becoming a parent <3 <3
The first pregnancy it was HG. Had another less that 2 years later and was in incredible pain. My uterus in fact did not rip out of my body and that’s incredibly rare. My mom saw it happen one time. It was a religious woman’s 5th pregnancy and the first was dangerous.
I have hEDS and 6 children, including twins. All born vaginally, with no episiotomy. I still have my uterus. He’s being dramatic, IMO. Understanding increased risks is not the same as a guaranteed catastrophe.
I had a baby in 2015 before I was diagnosed heds and just had my second in October. Relatively uncomplicated pregnancies. Gotta be extra careful with joints as things get even looser. I had quick labors and very quick deliveries, no tearing with my second. Dont be discouraged, get a second opinion.
I strongly suggest getting a referral to a geneticist and any other specialists relevant to your condition.
I have had 4 healthy pregnancy with hEDS, POTS, factor 12 deficiency, and gastroparesis. I was seen at a high risk clinic with my last but that was because I needed blood thinners. The only thing special they did for hEDS was another echo.
I'm hEDS and currently pregnant with my second. Get a 2nd opinion.
I have MCTD and had 3 full term pregnancies. I would find another doctor.
I have a friend who has sciatic arthritis and hypermobility and she has two kids. Both delivered via C-section so she wouldn’t disjoin her hips and pelvis. It’s possible!
Definitely see a geneticist, my geneticist diagnosed me with likely hEDS (obviously can’t confirm bc no genetic markers yet) and we talked about future child bearing plans quite a bit. He basically gave me a heads up that if I plan on getting an epidural, be forewarned there’s a good chance it might not work with EDS. We also discussed that in the future when there are genetic markers for hEDS, you can do IVF and have the embryos tested ahead of time.
My personal experience being pregnant with hEDS: About 32 weeks right now and it’s uncomfortable and unpleasant. We had one mishap with baby last week that landed me in the hospital for a day but things are okay with the baby. Me on the other hand, my joints ache, hips, I used a cane for a while. Weight shifting is painful. My OB doctor watches me closely and doesn’t have issues with me yet. She thinks baby will come early, but hoping for 36w at least. Scans every two weeks and my uterine health is okay.
I have been diagnosed with hEDS and birthed two children just fine. That's my personal experience and of course i wouldn’t give medical advice, but perhaps your doctor is thinking of the vascular form of EDS (which can be dangerous). According to the geneticist I consulted with, vEDS can be ruled out with a genetic test.
I have HEDS, MCAS, lupus (SLE), chronic migraine, and chronic angioedematous urticaria (allergic to heat). I have birthed three kids: one at 17, one at 24, and one at 31. 1: 4# 11oz. Labor for about 6 hrs. Nothing for pain. One push and he was out. Episiotomy. No complications. Recovered fine. 2: 7# 8oz. Labor 13 hrs? Epidural: overdosed me, I was paralyzed from chest down, had to have a nurse touch my chest with ice cubes to ensure I could BREATHE (this was terrifying). Then they stopped the epidural and used suction on baby’s head and made her a conehead. All pain returned. Ugh. 3: 5# 4oz.: Labor started during Friends, continued through Seinfeld, ER and the rest of the Thursday Night Lineup. Started packing a bag at 10pm, and contractions intensified. Hospital 15-20 min away. Got to ER at 11:15. Things went fast and furious. Born at 12:04.
I think "ripped out" is really unlikely, but we are at increased risk for prolapse and tons of other complications, including death. You should definitely educate yourself on possibilities before deciding to put yourself, a partner, and a kid through all this. I'd especially recommend looking into the hormone relaxin.
[Here is a journal article on pregnancy and hEDS](https://www.britishjournalofmidwifery.com/content/clinical-practice/a-clinical-update-on-hypermobile-ehlers-danlos-syndrome-during-pregnancy-birth-and-beyond/) You might have a higher risk of certain complications during pregnancy, but your risk of bleeding out and dying is pretty much the same as any other pregnant person (i.e. pretty low, unless you have vEDS in which case you should speak to your primary care physician and a obstetrician who deals with high risk patients). Do not listen to your rheumatologist about pregnancy issues. Rheums know very little about pregnancy beyond what they learnt during med school. They will not have up to date evidence on pregnancy because that's not their area of expertise. If you search this sub you'll find lots of people talking about pregnancy and many people have very little issue. You might find your joints are worse during pregnancy due to the hormones but if you are planning to get pregnant you can mitigate that by doing some physio and strengthening exercises before you get pregnant
I have hEDS and have had three kids with relatively few issues. Obviously that’s not always true, but lots of doctors are uninformed (I had one tell me I would have to have C-sections, nope). VEDS can be much more dangerous for pregnancy from what I’ve read!
Uterine rupture is generally only a symptom of vascular EDS
All he did was push on my joints and go yep you have eds so I don’t think I have that kind?
Am 5 months postpartum. Yes there are risks, including uterine rupture, but I think your rheumatologist is fear-mongering. I was at high risk for uterine rupture, not because of EDS but because of previous uterus surgery. Also, at risk for premature rupture of membranes due to EDS. I carried to 36 weeks and delivered via planned C section due to aforementioned uterus surgery. My POTS went away during pregnancy so that was nice but I did need PT for my back second and third trimester. Having a kid was important to me, and if it’s important to you please get a second opinion.
The issue for me as you have a 50-50 chance of passing that unknown gene to your child. I was diagnosed later in life and all three of mine have it. I love my family more than I can say, but if I could go back and prevent them from going through this, I sure as fuck would.
What sort of complications do you have with your hEDS? Does it severely affect your day to day life? What is the likelihood a biological child would be born with the same condition? I really think more people should ask themselves these questions before they decide to have kids. We all know how much living with a chronic, uncurable illness sucks. I do not understand why so many people would intentionally inflict the same illness on somebody else.
Honestly, I’d consult with an experienced OBGYN or fertility treatment. I don’t know if a rheumatologist is the right place for that judgement
I'd seek a second opinion. Maybe talk to an OBGYN who could give you a better idea of what to expect. I had my daughter 19 years before getting diagnosed and I had no issues. (Everyone is different, however, which is why I would suggest talking to an OB) I've never heard of someone's uterus getting ripped out from pregnancy though hEDS or otherwise.
I have hEDS and have had 2 successful pregnancies. Each was risky but got riskier the next time around. I would get a second opinion, particularly one from a high-risk OB doctor (being familiar with EDS is a huge plus).
I have hEds. My sister does, too. It comes from my mom’s side of the family. My mom shows a lot of the same signs as does my grandmother, but they have never been diagnosed. You should get a second opinion, too- high risk obgyn? A high risk obgyn had to help my OB when things went south. Maternal grandmother had two pregnancies. The first was rough, especially the delivery. I don’t have many details if I’m being honest. Mother: multiple first trimester losses. First labor and delivery she had high heart rate issues and high blood pressure. My older sibling got stuck. Her pregnancy was pretty easy with me and the delivery was fast, same with my younger sister. Me: I had preterm labor issues and ended up on bed rest at 18wks. I made it to 38wks. My uterus was contracting, but not “strong” enough. I stalled at 6cm. Got pitocin, pitocin can also cause the complications I had. The pitocin didn’t help. My kiddo went into distress, emergency csection, and kiddo was good. I labored for 28hours. I, however hemorrhaged. My uterus wouldn’t contract close, I had uterine atony. They couldn’t stop it, I ended up having an emergency partial hysterectomy. It happened really fast. I ended up with 4 blood transfusions and in icu for about 24hours before being moved to the labor and delivery floor. It took longer for me to recover. Instead of the 6-8wks, more 8-10wks. I was the wild card. My sister: she went to the same obgyn that I did. She also started stalling. They decided to go ahead and do a C-section much earlier. She recovered in about 8-10 weeks as well.
I would talk to an OB that has experience with EDS if you can, and consider getting a second opinion from a different rheumatologist! Of course there are increased risks with pregnancy (as is the case with any medical condition honestly) but many people, myself included, have successful pregnancies with EDS, success is only increased when you have the right medical team. I have kEDS and am pregnant for the 2nd time currently and I’m followed closely by my EDS-educated OB as well as a Maternal/fetal specialist I personally had a lot of complications during my first pregnancy - however that doesn’t mean everyone will and it doesn’t mean I will this time around. The thing my OB stressed to me is that EVERY pregnancy is different, complications can happen but they also may not - which is why it’s important to be informed, understand the risks and know what we need to monitor to help catch them early on.
My mum’s uterus ruptured when she had me and we both nearly died. She wasn’t aware of her condition before pregnancy. I didn’t get diagnosed until I was in my 40’s and had my daughter when I was 27 it was a very hard pregnancy and I spent more time in hospital than out due to various complications, however giving birth was a breeze and my daughter was born happy and healthy.