I’m 37+4 weeks pregnant and laying in bed kind of freaking out because I cannot move due to the severe pain in my pelvis. Doctors in my area in Tennessee have NO idea what can be done for this and let me know I just have to suffer and lay in bed until I have her and just have their fingers crossed I am able to move more after birth. I need to share this to everyone in my area. I should not be over looked. Not to mention I couldn’t get the long enough maternity leave I needed for my condition so now I am jobless seeking disability. Thank you for posting this!
I'm almost 17 weeks along with my first baby, and reading these comments, I am SO glad for where I live (NYC). It took 12 weeks to find a doctor willing to see me (I have hEDS with a GJ feeding tube for gastric motility disorders), but once I got in to meet my MFM, I was so relieved. My doctor has seen a lot of patients with all different forms of EDS, he told me a list of risks and what we'll do to mitigate them throughout pregnancy, labor, and recovery. I was planning on giving him a list of potential complications and requesting extra tests and prevention, but he knew every single possibility and was on top of it. And so far, everything is perfect. Some of my joints are looser now, some are actually more stable (RIP my right shoulder hypermobility). Having a knowledgeable, experienced doctor just makes all the difference in the world, at least for my peace of mind!!
Thank you for posting this. I have had eds 3 symptoms from the age of 13. I was lucky and was diagnosed at 16. I was then diagnosed with pots at 23 yrs old. I am desperate to have children, however, I’m terrified to get pregnant. With my multiple dislocations, torn muscles and ligaments etc plus the horrendous symptoms of pots, the thought of that getting worse during pregnancy scares me. I’ve even had to come to terms with the fact I may never be able to have children. I’m so pleased that these amazing women have done this research and are continuing to help us zebras.
Im desperate and terrified too. Obviously we all want to be a great mum and if we get more sick because of a pregnancy, how would you deal with that as a mother.
sorry to be offtopic but does anyone know of a tool to log back into an instagram account?? I was stupid lost my account password. I appreciate any help you can give me.
As a person with hEDS with a child with hEDS, I strongly suggest you adopt children and avoid passing this onto anyone as it is a horrible life. And guilt. And a lot of work. And very little energy to do it. I’d have NEVER planned children should I know of this when I did plan them. I didn’t. You do. You have no excuses. One of my daughters has it the other doesn’t, they’re drastically different. It’s a 50%+ chance you’ll give it to your child. Why would you purposely give this to anyone. Adopting is good.
Pubis symphysis was the most excruciating pain I’ve ever had. Now, diagnosed hypermobile it makes sense. I was told that I’m overreacting and not drinking enough water or doing yoga. This was worse than broken bones, torn ligaments, surgeries, etc. For 2 months I didn’t sleep for more than an hour at a time.
I’ve been diagnosed with EDS since the age of 15 and my mum was a staff nurse and also has the condition. Thank you so much for publishing this and doing the research it means so much! ❤️
I have EDS and I scored 9 on the Beighton scale. Pregnancy caused me less pain with my joints when carrying my first child probably because of the hormones but my child was born at 33 weeks. I couldn't wait to get pregnant again because I had never felt so good but unfortunately my second pregnancy caused me a lot of pain. My second child was born at 38 weeks. So glad I made the decision to have children, I was left with pelvic organ prolapse but it was worth it.
This has changed my life watching this video. I finally feel heard! I I always have to get extra anesthesic at the dentist. I'm not diagnosed with eds, I only found out i had it through my yoga teaching auntie during pregnancy. My doctors and midwives just shrugged off the fact my fingers were dislocating up to 10 times every day. I changed midwife and moved in with my mother in law who was a midwife. For my baby I had a home birth at her house. I had contractions for 2 weeks then was in labour for 50 hours, I only had gas and air and a tens machine. I was pushing for an hour and a half. I then bled heavily for a week before they realised I had a womb infection. I had 5 courses of antibiotics over 3 months before it finally went away. I feel really let down by all my health care professionals tbh. I told my therapist about hypermobile people having larger fight or flight parts of their brain than non hypermobile people and she had no idea. I'm going to message my old midwives these videos so women get listened to in the future. Thank you. Xx
As someone with hEDS and Aspergers that were both misdiagnosed for several other issues, I've found a few things that work for me, especially during my pregnancies: 1. I have always lived and maintained a constant state of physical activity. This does cause more frequent joint issues, but the activity level has allowed me to manipulate My muscles to my benefit and helps realign myself constantly throughout the day. This also helped during the labor process by keeping a level of fitness in my life and helping my stretchy tissues bounce back a little better than expected. 2. I use cannabis daily to help treat and even eliminate a large amount of my comorbidities, such as migraines, POTS, muscle spasms, insomnia, and gut issues . Prior to cannabis, I was on heavy doses of pain relievers daily and creeping towards a future opiod addiction . 3. I only use assistance equipment ( bands/compression cuffs/ braces ) when absolutely necessary, rather than a preventative to injury. I noticed the more support I used to ease minor issues, the faster my tissue weakened. I am extremely weary of medical intervention due to several instances of trauma due to misdiagnosis. I don't hold it against anyone emotionally, but I simply am proof that good intent can cause greater harm than good.
P.s. Another important thing I learned about my tissue was that Healing open wounds and surgical procedures has been best with Cautorization vs. Standard stitching. I've had 4 surgeries over the years , and always had healing delays and resistance to stitches. Antibiotic resistance is also a chronic issue I deal with, with no visible immunity issues .
My first pregnancy: Late term transverse lie baby (I saw a chiro who did Webster method), awful SPD, failed epidural (they stuck me twice for it to take), issues inserting an IV due to “rolling veins” that are very visible but easy to blow out, rapid labor (my daughter shot out of me lol), severe tearing because my body didn’t have time to prepare for labor. Now 37 weeks pregnant. Yet another baby in a transverse lie, my tailbone area feels like it’s floating around and sometimes feeling like it stabs my leg, legs so loose they feel like they’ll give out…My OB is great but isn’t well versed in EDS. I’m a military spouse who moved states and has an all new medical team halfway through this pregnancy. Fingers crossed that this goes well ❤
Thank you for publishing this. I'm 6 months pregnant with my first baby and it's been a nightmare with scarring from Stage IV endometriosis, multiple surgeries, and EDS. My midwfe and obstetrician are lovely, but there's nothing they have been able to do to make anything less scary and painful, and the birth itself is worrying me.
How are you feeling now? Are you going to do natural birth or CC? I have EDS as well and planning pregnancy. Looking for all the possible information about pregnancies and giving birth of "zebras"
@@ekaterinasmullen5499 here's a super late update, because I'm coming back to this video to plan for number 2. Things didn't get too much worse as far as mobility, pain etc from second to third trimester, but my baby was very small with Intrauterine Growth Restriction, so the change in my bump size etc wasn't huge from there. I had an induced birth at 38 weeks because she was so small, it was rough from start to finish. I think the medical team did not have enough understanding of how EDS impacts the body, so didn't listen to me when I said that I shouldn't be immobalised, shouldn't have my legs hyperextended, that my hips were subluxating with every contraction and the pain was constant in between. I ended up in stirrups not able to move around and with a vacuum birth, this left me with some longstanding issues. But -and this is a big but- that's my own experience, and this was in a public hospital with a different doctor to my usual because my labour was taking quite a while by induction standards and my usual doctor and midwife had gone home. I tried to advocate for myself, but was talked over too much. Next time I will 100% be a C section, because my hips and pelvis just didn't seem stable enough to deal with contractions without popping in and out. I know other EDS mums who didn't find this issue because maybe their medical team was better, or their hips aren't as bad, or induced is harder on the body than natural labour.
Fantastic video, the medical team was pretty good with my EDS and pregnancy, extra scans etc. I will say though, my labour was awful. Irregular contractions, hemorrhaged, medical intervention was needed and my daughter also has EDS, in the process of genetics referral.
This is amazing. I was diagnosed a little over a month ago. I’m done bearing children, but my experiences were all pretty horrible. I definitely wouldn’t mind sharing more.
I've known I had hEDS since I was 25. Two kids now and it actually eased up in pain levels for me for the most part during pregnancy and it actually seemed to help the birth process go faster, less than mine hours for labor and birth combined, but afterwards, the chronic just jumped up in spades. I did end up getting induced for my second son early because of it
I am 26 and I just got diagnosed with hyper mobile EDS. I have a 6 on the baden score. I got diagnosed with POTS and 25 and have had fibromyalgia since I was 21. I have always wanted to have a child. I am worried about how this will affect my ability to have a safe and healthy pregnancy. I am excited to read this article and take it to my doctors when I am ready for this step in my life journey.
I have HEDS and I actually gave birth to 2 beautiful daughters who are now in their mid twenties . I did not know at the time that I had this diagnosis, and I ended up on strict bedrest for 9-12 weeks for both girls because my cervix dilated to 6 in 7 at 20 weeks.. I suffered a miscarriage prior to These pregnancies as my body could not hold them in (twins).
You sound like me. I had the exact same thing happen to me. With each child. Bed rest the first trimester. Multiple miscarriages. Gave birth I'm 1 hour or less
I’m so terrified, I’m diagnosed with ehler-danlos syndrome, I got diagnosed at almost 22. The only reason I was diagnosed is because I knew something was wrong with me from a young age and when I started college at 17 I knew something was really wrong. My family doctor who I’ve seen my whole life wouldn’t listen to me. Looked at me and treated me like I was drug seeking or over exaggerating. So, I took it amongst myself to started doing research while I was in college. Two years in to doing my research I was watching the show “Intervention” and this woman had a drug problem with fentanyl and she said she couldn’t help how much she was taking because she was in pain from her EDS. The show went in to briefly explain it, and she she further explained what she goes through and her brother explained some furthermore. My jaw hit the floor. I had to rewind it to see take it all in, I took all the notes possible. I wrote down everything they said and even checked what episode it was and wrote that down just in case a doctor thought I was bullshitting and I could pull that out. I remember when I seen that I KNEW that’s what I had. It fit me to a T and I just cried. I cried from relief, happiness, but fear because of how horrible it was. But to have a possible answer was everything to me. I was discouraged because I live in Muskegon, Michigan and it’s a poor town where doctors are not kind nor helpful and this town is full of drug addicts and since this disease is so rare I knew I was going to be pushed aside time and time again. And I was right, I was even red flagged in the hospital which means you come in often and they think you’re drug seeking!! I took it to my family doctor and he told me straight up, no, you don’t have this. Even though he had never heard of it and I was the first person to ever say that term to him! What right did he have to tell me without doing no research or hearing me out. I went home crying and did more research and looked up what specialist to go to, where could I go, who all could I possibly see! And I had to make sure my insurance would cover it since this disease made me unable to work and on Medicaid. Eventually, I found a type of specialist that I’m supposed to see so I told my doctor if he would not refer me I would literally get lawyers involved. Finally, he referred me and unfortunately the specialist told me yeah you have the disease, but there’s nothing I can do. I can’t do pain management, there’s no treatment I can give you, an he wouldn’t even give me the official diagnosis so I could have the proof to get more help. Long story short, it took years to get my official diagnosis on paper. But to this day I still have had no treatment. No type of treatment, no pain management, except I’ve had about 25 surgeries due to complications, and I’ve almost died a handful of times. Fast forward to now, I’m 25, and I had my hysterectomy scheduled, because my OB said I could not have kids, with the Eds, my abdomen and reproductive system full of scar tissue and connective deformities, etc. there was just no possible way a baby would stick and due to the severity of my condition it’s be too dangerous anyway, especially since you aren’t getting treatment for eds and don’t have a doctor who specializes in it to help you and give you advice you need. I agreed and was going to get the surgery. But somehow, I got pregnant. I’m currently 14 weeks, and I am TERRIFIED. I don’t know what to do especially because of how much I’m suffering already. I’ve been told I have to get a c-section, and my ob is terrified for me. We don’t know how I’m supposed to make it to term. I don’t know what to do. I don’t know where to go, who to see, how to get treatment. I’m hopeless. And it’s making me lose my mind. I need help and I can’t get it no matter what I do. ):
with hyper mobile ehlers danlos also comes lipedema and lymfedema, nervous system issues, weak immune system and the advice to not have kids because the body would be too weak.
How is your pregnancy going? I feel that if your body wasn’t able to handle pregnancy then it wouldn’t have let you fall pregnant. Many of us have been born from mothers with EDS and only discover after our own diagnosis. I hope that things are going well for you, sending you warm wishes
It sounds like you need a new OB. Im not sure that your doctor should be terrified… they should know what’s going on, it’s not uncommon to have issues in pregnancy. Have you been to an MFM?
I buried a lot of my birth trauma with a simple “I had her in 3 pushes! It was fine!” But what I left out was the preterm labor scare, the placenta previa, the dislocated rib, not being able to move the last two weeks and having my L3 slip forward pinching my nerve so I couldn’t stand upright, the fentanyl injections I got on my hand that only made my hand numb, them having to up my epidural multiple times, the placental abruption my daughter and I barely survived and the fact that while they were drying my daughter off and taking her vitals I decided to stand up, and go pee because my epidural had worn off and the nurses thought I had fallen out of the bed or gotten kidnapped because there was “no way I should have been able to feel my legs” less than 1 hour after my epidural was removed. I hate the dentist for the same reason. But yeah I’m just now looking into a formal diagnosis. I pretty much meet all but a couple of the questions for all 3 criteria but I haven’t been able to find a knowledgeable provider to see to get a formal diagnosis.
I am in the United States and currently 12 weeks. I have loss 4 children before with no living children. I have severe hEDS with 30-40 dislocations and subluxations all over my body daily. I have been refused by my general OGBYN and my high risk fetal medicine specialist doesn't deliver the baby. I have some doctors telling me that my severe hEDS is nothing to be concerned about or i am too high risk and they won't help. I have earned many degrees to teach myself about hEDS and i'm a professor anatomy and physiology and i can't get anyone to help me here in the NC region. No one in Duke or Chapel Hill which is the research triangle of the world. None. I am hoping taking your guidelines helps me at my appoints. Thank you.
I was just diagnosed with eds but I have had symptoms for my whole life. I had 3 losses. Two of them with excruciating back pain and the last one I had no idea anything was wrong when I went in to my 5 month check up. I had twins at Duke back in 2022 and bleed out hours after delivery. In all honesty Duke is not that great at all when it comes to Healthcare. I've had to fight for this diagnosis amongst a lot of others. I know it's a year later but I hope you welcomed a beautiful baby and I hope you are getting help for your eds.
Wish there was this forum in US too Could you help me find help with this issue in sacramento ,california . I’ve been suffering with this last 10’years after my first delivery and couldn’t have my 2nd one becoz of this
I have ehlers-danlos and had 4 kids, my 4th was when I was diagnosed. No one believed just how bad pregnancy and recovery was for me. My 4th pregnancy I couldn't walk and was in pain that could not be stopped. I had 1, 2, and 3rd degree vaginal tears with my 3 pregnancies, I used a cane then a wheel chair. After I had my 4th I used a cane. I'm 7 months postpartum and my right leg needs help some days because it hurts from my hip and si joint issues. It was traumatizing to be pregnant and dismissed as if I was being a baby about normal pregnancy pains. I have scoliosis and 2 epidural only numbed half of me. The most painful part if it all was the week before when the pain never let up from my hip and si joint. Nothing helped and I thought I would die at my 4th birth.
I'm so sorry for your experience. I've only have the one pregnancy and brith so far, but the whole thing was so different to two non EDS friends who were pregnant around the same time. I'm just under 1 year post partum and I struggle to try and keep off my walking stick, because I hate people staring at me. Her brith was horrifix, a very small part of one side of me was numbed from the epidural, I also have scoloiosis, so i don't know of that impacted it. From the start to the end of labour my lower back and hips felt like I was a rga doll being torn apart, I only felt the contractions a little because the constant pain had me nearly blacking out. The mediclal team didn't believe me about that pain outside of contractions! The stitches all came out prematurely, too.
I have really bad hypermobility!! I hope to get pregnant this year but i have been in terrible chronic pain in my neck and shoulders and hips for a few years now but didn't know why. Very stiff rhomboids and neck and hip pain. My bones pop in and out of place all the time and I get terrible pinched nerves. I am nervous about what pregnancy will be like. I just found the root cause of my pain is this hypermobility and I can do all of the 9 point test. I have learned that I need to do joint stabilizing exercises. Do you know anything else that will help me??
No one new I had this and my pelvis split I had severe spd but they made me give birth naturally this has now made me not able to have any more children! I’m not left with plates and pins to try hold my pelvis back up xxx
Really? damn. I hope you are happy and healthy now. What would you think would have been better? because a c section woukd also be ripture of the tissue. how would that heal.
@@zeynand4039 yes c section would be better for women with hyper mobile EdS - I had vaginal childbirth and ended up having 3rd uterine prolapse which I have been coping with using pessary but the musculoskeletal issues that continued over next 10 years making me go from one PT to the next has made my life miserable and also couldn’t plan for 2nd one as I could never be pain free enough to think about another pregnancy or looking after another baby.
I have not been diagnosed yet. But i know something is wrong with me. I came across this. EDS, i was diagnosed with fibromyalgia and rheumatoid arthritis and osteoarthritis too.
Im actually shocked I came across this video. Pretty sure I have EDS/ hypermobility and have simply been living life as "very flexible." Now that ive learned more about EDS Ive scored myself on the Baton scale and feel i have undiagnosed EDS.. Im also pregnant with my 2nd child and this video shocks me because I barely I had told myself months ago theres probably no education on EDS and pregnancy and here is a video!
Hey, I've kyphoscoliosis ehlers danlos type 6A. I also went blind in one eye 5 years ago and was told I could be totally blind in time. I'm 38 currently and have wanted to build a family for years but I'm so scared of dying in childbirth or pregnancy taking the last of my eyesight away so I can't see my kids grow. Would people advise for or against pregnancy with PGD and IVF in a 38 year old woman?
Please choose adopting a healthy child who needs a healthy home. If you knowingly pass heds to a child, you’re responsible, and if you lose eye sight then, you’re purposely negligent as you knew what you’re doing. Please consider adopting.
I have been told my type of EDS has 50/50 chance of passing a faulty gene to offspring. Given that, there is a 50% chance of having a healthy child. So I disagree, I'm not knowingly responsible. I wasn't asking about adoption, just IVF and PGD. I can barely afford PGD and IVF at E14,995 so I definitely cannot afford adoption. Never mind all the other implications of wills and property rights when I die etc. I believe I have not been negligent waiting two decades of my lifetime for a stable relationship with a partner, knowing I have wanted a big family later in life since I was a young teenager. I think I have a right to build and strive for that like many other people in the world. I don't think I've been negligent waiting two decades of my lifetime and researching, seeking answers and trying to confirm answers to EDS diagnosis and adoption and surrogacy and PGD and IVF. I'll be turning 39 soon so my hopes for a big family is gone but I still hold hope of having two kids to keep each other company and I think I have a right to build my way of life and my family's life to protect long term. I didn't ask for the faulty gene, just like I didn't ask for emotionally abusive partners or comments.
Omg!! I am the bendiest and only just heard of this recently this is ne all over. My placenta was in a bad way and stuck had to have emergency surgery twice after my 2 daughters because it wouldn't come out etc. I have asd also. But I am 200% sure I have this. Ehlers-danlos. I have double jointed shoulders and have always been over flexible, bruise easily, small ears no lobes, pointy nose, hit every point with pinkies, thumbs, hands on floor the while lot 😮 my 2 births were do traumatic in 2013 and 2019. In Australia
I can not speak from experience, but as a father who has eds, mcas, and pots and studied eds for many years along with the fact that my daughters also have eds, both of them had many miscarriages and everything I've studied, it happens quite often with women who have eds.
My oldest son had ehlers danlos he had type 9 and died at the age of 33 he was diagnosed when he was 5 years old they did a lot of tests on him how they found out , they took a sample of his skin and sent it off to england to Dr white and thats how we found out we were told it's passed from the womens side and now my grandson has it and he is 17 years old and his problem is he keeps getting taller the doctors at shriners hospital had did a lot of surgery s
From what I read about EDS, Thank goodness I’m not a mommy. I have Classical EDS( cEDS) and I can pass it down to my unborn child, and NO Thank you! It’s hard enough for me to deal with! Why would I want to do that to my children?
No one is "trying to pass on this horrible condition".....that is naive and absurd of you to say. When you have any form of EDS you do NOT stop living life and achieving dreams and goals just because of EDS. You don't decide not to have kids or family just because you aren't PERFECT like everyone else?? There are millions of other people who are unfit to have kids way more than the EDS community. Go tell them to not have kids and "pass on their alcholism, drug addiction, depression, bi polar, schizophrenia....you get it now :)
I’m 37+4 weeks pregnant and laying in bed kind of freaking out because I cannot move due to the severe pain in my pelvis. Doctors in my area in Tennessee have NO idea what can be done for this and let me know I just have to suffer and lay in bed until I have her and just have their fingers crossed I am able to move more after birth. I need to share this to everyone in my area. I should not be over looked. Not to mention I couldn’t get the long enough maternity leave I needed for my condition so now I am jobless seeking disability. Thank you for posting this!
I'm almost 17 weeks along with my first baby, and reading these comments, I am SO glad for where I live (NYC). It took 12 weeks to find a doctor willing to see me (I have hEDS with a GJ feeding tube for gastric motility disorders), but once I got in to meet my MFM, I was so relieved. My doctor has seen a lot of patients with all different forms of EDS, he told me a list of risks and what we'll do to mitigate them throughout pregnancy, labor, and recovery. I was planning on giving him a list of potential complications and requesting extra tests and prevention, but he knew every single possibility and was on top of it. And so far, everything is perfect. Some of my joints are looser now, some are actually more stable (RIP my right shoulder hypermobility). Having a knowledgeable, experienced doctor just makes all the difference in the world, at least for my peace of mind!!
Thank you for posting this. I have had eds 3 symptoms from the age of 13. I was lucky and was diagnosed at 16. I was then diagnosed with pots at 23 yrs old. I am desperate to have children, however, I’m terrified to get pregnant. With my multiple dislocations, torn muscles and ligaments etc plus the horrendous symptoms of pots, the thought of that getting worse during pregnancy scares me. I’ve even had to come to terms with the fact I may never be able to have children. I’m so pleased that these amazing women have done this research and are continuing to help us zebras.
Im desperate and terrified too. Obviously we all want to be a great mum and if we get more sick because of a pregnancy, how would you deal with that as a mother.
I’ve not been able to have 2nd one since I’ve never been able to get better
sorry to be offtopic but does anyone know of a tool to log back into an instagram account??
I was stupid lost my account password. I appreciate any help you can give me.
As a person with hEDS with a child with hEDS, I strongly suggest you adopt children and avoid passing this onto anyone as it is a horrible life. And guilt. And a lot of work. And very little energy to do it. I’d have NEVER planned children should I know of this when I did plan them. I didn’t. You do. You have no excuses.
One of my daughters has it the other doesn’t, they’re drastically different. It’s a 50%+ chance you’ll give it to your child. Why would you purposely give this to anyone. Adopting is good.
@@malinichandra6953 exactly the same ..I am totally destroyed
Pubis symphysis was the most excruciating pain I’ve ever had. Now, diagnosed hypermobile it makes sense. I was told that I’m overreacting and not drinking enough water or doing yoga. This was worse than broken bones, torn ligaments, surgeries, etc. For 2 months I didn’t sleep for more than an hour at a time.
Omg. Another yes. I had my kids on 45 minutes. Im glad the doctor was there to catch my kid.
I’ve been diagnosed with EDS since the age of 15 and my mum was a staff nurse and also has the condition. Thank you so much for publishing this and doing the research it means so much! ❤️
I have EDS and I scored 9 on the Beighton scale. Pregnancy caused me less pain with my joints when carrying my first child probably because of the hormones but my child was born at 33 weeks. I couldn't wait to get pregnant again because I had never felt so good but unfortunately my second pregnancy caused me a lot of pain. My second child was born at 38 weeks. So glad I made the decision to have children, I was left with pelvic organ prolapse but it was worth it.
Yes i too got 3rd degree uterine prolapse 3 months after delivery - have only one child
This has changed my life watching this video. I finally feel heard! I I always have to get extra anesthesic at the dentist. I'm not diagnosed with eds, I only found out i had it through my yoga teaching auntie during pregnancy. My doctors and midwives just shrugged off the fact my fingers were dislocating up to 10 times every day. I changed midwife and moved in with my mother in law who was a midwife. For my baby I had a home birth at her house. I had contractions for 2 weeks then was in labour for 50 hours, I only had gas and air and a tens machine. I was pushing for an hour and a half. I then bled heavily for a week before they realised I had a womb infection. I had 5 courses of antibiotics over 3 months before it finally went away. I feel really let down by all my health care professionals tbh. I told my therapist about hypermobile people having larger fight or flight parts of their brain than non hypermobile people and she had no idea. I'm going to message my old midwives these videos so women get listened to in the future. Thank you. Xx
I have hypermobility too and I had no idea that that can cause more fight or flight??? I will definitely look this up.
@@leandraainloveyeah, same, just learning!
Is there research or something? 🤔
It's on UA-cam, anxiety and hypermobility, I think it was a university in England that made the video. Blonde woman in the video
As someone with hEDS and Aspergers that were both misdiagnosed for several other issues, I've found a few things that work for me, especially during my pregnancies:
1. I have always lived and maintained a constant state of physical activity. This does cause more frequent joint issues, but the activity level has allowed me to manipulate My muscles to my benefit and helps realign myself constantly throughout the day. This also helped during the labor process by keeping a level of fitness in my life and helping my stretchy tissues bounce back a little better than expected.
2. I use cannabis daily to help treat and even eliminate a large amount of my comorbidities, such as migraines, POTS, muscle spasms, insomnia, and gut issues . Prior to cannabis, I was on heavy doses of pain relievers daily and creeping towards a future opiod addiction .
3. I only use assistance equipment ( bands/compression cuffs/ braces ) when absolutely necessary, rather than a preventative to injury. I noticed the more support I used to ease minor issues, the faster my tissue weakened.
I am extremely weary of medical intervention due to several instances of trauma due to misdiagnosis. I don't hold it against anyone emotionally, but I simply am proof that good intent can cause greater harm than good.
P.s.
Another important thing I learned about my tissue was that Healing open wounds and surgical procedures has been best with Cautorization vs. Standard stitching. I've had 4 surgeries over the years , and always had healing delays and resistance to stitches. Antibiotic resistance is also a chronic issue I deal with, with no visible immunity issues .
My first pregnancy: Late term transverse lie baby (I saw a chiro who did Webster method), awful SPD, failed epidural (they stuck me twice for it to take), issues inserting an IV due to “rolling veins” that are very visible but easy to blow out, rapid labor (my daughter shot out of me lol), severe tearing because my body didn’t have time to prepare for labor. Now 37 weeks pregnant. Yet another baby in a transverse lie, my tailbone area feels like it’s floating around and sometimes feeling like it stabs my leg, legs so loose they feel like they’ll give out…My OB is great but isn’t well versed in EDS. I’m a military spouse who moved states and has an all new medical team halfway through this pregnancy. Fingers crossed that this goes well ❤
Thank you for publishing this. I'm 6 months pregnant with my first baby and it's been a nightmare with scarring from Stage IV endometriosis, multiple surgeries, and EDS. My midwfe and obstetrician are lovely, but there's nothing they have been able to do to make anything less scary and painful, and the birth itself is worrying me.
How are you feeling now? Are you going to do natural birth or CC? I have EDS as well and planning pregnancy. Looking for all the possible information about pregnancies and giving birth of "zebras"
@@ekaterinasmullen5499 here's a super late update, because I'm coming back to this video to plan for number 2. Things didn't get too much worse as far as mobility, pain etc from second to third trimester, but my baby was very small with Intrauterine Growth Restriction, so the change in my bump size etc wasn't huge from there. I had an induced birth at 38 weeks because she was so small, it was rough from start to finish. I think the medical team did not have enough understanding of how EDS impacts the body, so didn't listen to me when I said that I shouldn't be immobalised, shouldn't have my legs hyperextended, that my hips were subluxating with every contraction and the pain was constant in between. I ended up in stirrups not able to move around and with a vacuum birth, this left me with some longstanding issues. But -and this is a big but- that's my own experience, and this was in a public hospital with a different doctor to my usual because my labour was taking quite a while by induction standards and my usual doctor and midwife had gone home. I tried to advocate for myself, but was talked over too much. Next time I will 100% be a C section, because my hips and pelvis just didn't seem stable enough to deal with contractions without popping in and out. I know other EDS mums who didn't find this issue because maybe their medical team was better, or their hips aren't as bad, or induced is harder on the body than natural labour.
Fantastic video, the medical team was pretty good with my EDS and pregnancy, extra scans etc. I will say though, my labour was awful. Irregular contractions, hemorrhaged, medical intervention was needed and my daughter also has EDS, in the process of genetics referral.
This is amazing. I was diagnosed a little over a month ago. I’m done bearing children, but my experiences were all pretty horrible. I definitely wouldn’t mind sharing more.
I've known I had hEDS since I was 25. Two kids now and it actually eased up in pain levels for me for the most part during pregnancy and it actually seemed to help the birth process go faster, less than mine hours for labor and birth combined, but afterwards, the chronic just jumped up in spades. I did end up getting induced for my second son early because of it
I am 26 and I just got diagnosed with hyper mobile EDS. I have a 6 on the baden score. I got diagnosed with POTS and 25 and have had fibromyalgia since I was 21. I have always wanted to have a child. I am worried about how this will affect my ability to have a safe and healthy pregnancy. I am excited to read this article and take it to my doctors when I am ready for this step in my life journey.
I have HEDS and I actually gave birth to 2 beautiful daughters who are now in their mid twenties . I did not know at the time that I had this diagnosis, and I ended up on strict bedrest for 9-12 weeks for both girls because my cervix dilated to 6 in 7 at 20 weeks.. I suffered a miscarriage prior to These pregnancies as my body could not hold them in (twins).
Thank you for sharing! I’m so glad to hear about your girls.
You sound like me. I had the exact same thing happen to me. With each child. Bed rest the first trimester. Multiple miscarriages. Gave birth I'm 1 hour or less
I’m so terrified, I’m diagnosed with ehler-danlos syndrome, I got diagnosed at almost 22. The only reason I was diagnosed is because I knew something was wrong with me from a young age and when I started college at 17 I knew something was really wrong. My family doctor who I’ve seen my whole life wouldn’t listen to me. Looked at me and treated me like I was drug seeking or over exaggerating. So, I took it amongst myself to started doing research while I was in college. Two years in to doing my research I was watching the show “Intervention” and this woman had a drug problem with fentanyl and she said she couldn’t help how much she was taking because she was in pain from her EDS. The show went in to briefly explain it, and she she further explained what she goes through and her brother explained some furthermore. My jaw hit the floor. I had to rewind it to see take it all in, I took all the notes possible. I wrote down everything they said and even checked what episode it was and wrote that down just in case a doctor thought I was bullshitting and I could pull that out. I remember when I seen that I KNEW that’s what I had. It fit me to a T and I just cried. I cried from relief, happiness, but fear because of how horrible it was. But to have a possible answer was everything to me. I was discouraged because I live in Muskegon, Michigan and it’s a poor town where doctors are not kind nor helpful and this town is full of drug addicts and since this disease is so rare I knew I was going to be pushed aside time and time again. And I was right, I was even red flagged in the hospital which means you come in often and they think you’re drug seeking!! I took it to my family doctor and he told me straight up, no, you don’t have this. Even though he had never heard of it and I was the first person to ever say that term to him! What right did he have to tell me without doing no research or hearing me out. I went home crying and did more research and looked up what specialist to go to, where could I go, who all could I possibly see! And I had to make sure my insurance would cover it since this disease made me unable to work and on Medicaid.
Eventually, I found a type of specialist that I’m supposed to see so I told my doctor if he would not refer me I would literally get lawyers involved. Finally, he referred me and unfortunately the specialist told me yeah you have the disease, but there’s nothing I can do. I can’t do pain management, there’s no treatment I can give you, an he wouldn’t even give me the official diagnosis so I could have the proof to get more help. Long story short, it took years to get my official diagnosis on paper. But to this day I still have had no treatment. No type of treatment, no pain management, except I’ve had about 25 surgeries due to complications, and I’ve almost died a handful of times.
Fast forward to now, I’m 25, and I had my hysterectomy scheduled, because my OB said I could not have kids, with the Eds, my abdomen and reproductive system full of scar tissue and connective deformities, etc. there was just no possible way a baby would stick and due to the severity of my condition it’s be too dangerous anyway, especially since you aren’t getting treatment for eds and don’t have a doctor who specializes in it to help you and give you advice you need. I agreed and was going to get the surgery. But somehow, I got pregnant.
I’m currently 14 weeks, and I am TERRIFIED. I don’t know what to do especially because of how much I’m suffering already. I’ve been told I have to get a c-section, and my ob is terrified for me. We don’t know how I’m supposed to make it to term. I don’t know what to do. I don’t know where to go, who to see, how to get treatment. I’m hopeless. And it’s making me lose my mind. I need help and I can’t get it no matter what I do. ):
I hope you were able to find help. ❤️
with hyper mobile ehlers danlos also comes lipedema and lymfedema, nervous system issues, weak immune system and the advice to not have kids because the body would be too weak.
How is your pregnancy going? I feel that if your body wasn’t able to handle pregnancy then it wouldn’t have let you fall pregnant. Many of us have been born from mothers with EDS and only discover after our own diagnosis. I hope that things are going well for you, sending you warm wishes
It sounds like you need a new OB. Im not sure that your doctor should be terrified… they should know what’s going on, it’s not uncommon to have issues in pregnancy. Have you been to an MFM?
I buried a lot of my birth trauma with a simple “I had her in 3 pushes! It was fine!” But what I left out was the preterm labor scare, the placenta previa, the dislocated rib, not being able to move the last two weeks and having my L3 slip forward pinching my nerve so I couldn’t stand upright, the fentanyl injections I got on my hand that only made my hand numb, them having to up my epidural multiple times, the placental abruption my daughter and I barely survived and the fact that while they were drying my daughter off and taking her vitals I decided to stand up, and go pee because my epidural had worn off and the nurses thought I had fallen out of the bed or gotten kidnapped because there was “no way I should have been able to feel my legs” less than 1 hour after my epidural was removed. I hate the dentist for the same reason. But yeah I’m just now looking into a formal diagnosis. I pretty much meet all but a couple of the questions for all 3 criteria but I haven’t been able to find a knowledgeable provider to see to get a formal diagnosis.
I am in the United States and currently 12 weeks. I have loss 4 children before with no living children. I have severe hEDS with 30-40 dislocations and subluxations all over my body daily. I have been refused by my general OGBYN and my high risk fetal medicine specialist doesn't deliver the baby. I have some doctors telling me that my severe hEDS is nothing to be concerned about or i am too high risk and they won't help. I have earned many degrees to teach myself about hEDS and i'm a professor anatomy and physiology and i can't get anyone to help me here in the NC region. No one in Duke or Chapel Hill which is the research triangle of the world. None. I am hoping taking your guidelines helps me at my appoints. Thank you.
I was just diagnosed with eds but I have had symptoms for my whole life. I had 3 losses. Two of them with excruciating back pain and the last one I had no idea anything was wrong when I went in to my 5 month check up. I had twins at Duke back in 2022 and bleed out hours after delivery. In all honesty Duke is not that great at all when it comes to Healthcare. I've had to fight for this diagnosis amongst a lot of others.
I know it's a year later but I hope you welcomed a beautiful baby and I hope you are getting help for your eds.
Wish there was this forum in US too
Could you help me find help with this issue in sacramento ,california . I’ve been suffering with this last 10’years after my first delivery and couldn’t have my 2nd one becoz of this
I have ehlers-danlos and had 4 kids, my 4th was when I was diagnosed. No one believed just how bad pregnancy and recovery was for me. My 4th pregnancy I couldn't walk and was in pain that could not be stopped. I had 1, 2, and 3rd degree vaginal tears with my 3 pregnancies, I used a cane then a wheel chair. After I had my 4th I used a cane. I'm 7 months postpartum and my right leg needs help some days because it hurts from my hip and si joint issues. It was traumatizing to be pregnant and dismissed as if I was being a baby about normal pregnancy pains. I have scoliosis and 2 epidural only numbed half of me. The most painful part if it all was the week before when the pain never let up from my hip and si joint. Nothing helped and I thought I would die at my 4th birth.
I'm so sorry for your experience. I've only have the one pregnancy and brith so far, but the whole thing was so different to two non EDS friends who were pregnant around the same time. I'm just under 1 year post partum and I struggle to try and keep off my walking stick, because I hate people staring at me. Her brith was horrifix, a very small part of one side of me was numbed from the epidural, I also have scoloiosis, so i don't know of that impacted it. From the start to the end of labour my lower back and hips felt like I was a rga doll being torn apart, I only felt the contractions a little because the constant pain had me nearly blacking out. The mediclal team didn't believe me about that pain outside of contractions! The stitches all came out prematurely, too.
Yes. No one has even suggested this to me. Im 57.
I have really bad hypermobility!! I hope to get pregnant this year but i have been in terrible chronic pain in my neck and shoulders and hips for a few years now but didn't know why. Very stiff rhomboids and neck and hip pain. My bones pop in and out of place all the time and I get terrible pinched nerves. I am nervous about what pregnancy will be like. I just found the root cause of my pain is this hypermobility and I can do all of the 9 point test. I have learned that I need to do joint stabilizing exercises. Do you know anything else that will help me??
No one new I had this and my pelvis split I had severe spd but they made me give birth naturally this has now made me not able to have any more children! I’m not left with plates and pins to try hold my pelvis back up xxx
Really? damn. I hope you are happy and healthy now. What would you think would have been better? because a c section woukd also be ripture of the tissue. how would that heal.
Damned if you do, damned if you don’t. Welcome to EDS! 🦓
@@zeynand4039 yes c section would be better for women with hyper mobile EdS - I had vaginal childbirth and ended up having 3rd uterine prolapse which I have been coping with using pessary but the musculoskeletal issues that continued over next 10 years making me go from one PT to the next has made my life miserable and also couldn’t plan for 2nd one as I could never be pain free enough to think about another pregnancy or looking after another baby.
Where can I find the report to download?
I have not been diagnosed yet. But i know something is wrong with me. I came across this. EDS, i was diagnosed with fibromyalgia and rheumatoid arthritis and osteoarthritis too.
Is there a correlation between ITP and EDS??
Does anyone else sit in the W position? My daughter does it too.
With the knees up. Yes I used too
Omg. I had this with all my pregnancies
Im actually shocked I came across this video. Pretty sure I have EDS/ hypermobility and have simply been living life as "very flexible." Now that ive learned more about EDS Ive scored myself on the Baton scale and feel i have undiagnosed EDS.. Im also pregnant with my 2nd child and this video shocks me because I barely I had told myself months ago theres probably no education on EDS and pregnancy and here is a video!
Omg. Yes. The lidocaine didn't work at all. I had a epidural with my pregnancies and it didn't work.
Hey, I've kyphoscoliosis ehlers danlos type 6A. I also went blind in one eye 5 years ago and was told I could be totally blind in time. I'm 38 currently and have wanted to build a family for years but I'm so scared of dying in childbirth or pregnancy taking the last of my eyesight away so I can't see my kids grow. Would people advise for or against pregnancy with PGD and IVF in a 38 year old woman?
Please choose adopting a healthy child who needs a healthy home. If you knowingly pass heds to a child, you’re responsible, and if you lose eye sight then, you’re purposely negligent as you knew what you’re doing. Please consider adopting.
I have been told my type of EDS has 50/50 chance of passing a faulty gene to offspring. Given that, there is a 50% chance of having a healthy child. So I disagree, I'm not knowingly responsible.
I wasn't asking about adoption, just IVF and PGD.
I can barely afford PGD and IVF at E14,995 so I definitely cannot afford adoption. Never mind all the other implications of wills and property rights when I die etc.
I believe I have not been negligent waiting two decades of my lifetime for a stable relationship with a partner, knowing I have wanted a big family later in life since I was a young teenager.
I think I have a right to build and strive for that like many other people in the world.
I don't think I've been negligent waiting two decades of my lifetime and researching, seeking answers and trying to confirm answers to EDS diagnosis and adoption and surrogacy and PGD and IVF.
I'll be turning 39 soon so my hopes for a big family is gone but I still hold hope of having two kids to keep each other company and I think I have a right to build my way of life and my family's life to protect long term.
I didn't ask for the faulty gene, just like I didn't ask for emotionally abusive partners or comments.
Omg!! I am the bendiest and only just heard of this recently this is ne all over. My placenta was in a bad way and stuck had to have emergency surgery twice after my 2 daughters because it wouldn't come out etc. I have asd also. But I am 200% sure I have this. Ehlers-danlos. I have double jointed shoulders and have always been over flexible, bruise easily, small ears no lobes, pointy nose, hit every point with pinkies, thumbs, hands on floor the while lot 😮 my 2 births were do traumatic in 2013 and 2019. In Australia
Oh and I woke up during surgery too 😳😳😳 is that a THING. dislocated shoulder and fingers etc. Wow.
I'd EDS linked to multiple miscarriages?
I would like to know because I have every symptom and even with pregnancies too. And I've had 5 miscarriages.
I can not speak from experience, but as a father who has eds, mcas, and pots and studied eds for many years along with the fact that my daughters also have eds, both of them had many miscarriages and everything I've studied, it happens quite often with women who have eds.
My oldest son had ehlers danlos he had type 9 and died at the age of 33 he was diagnosed when he was 5 years old they did a lot of tests on him how they found out , they took a sample of his skin and sent it off to england to Dr white and thats how we found out we were told it's passed from the womens side and now my grandson has it and he is 17 years old and his problem is he keeps getting taller the doctors at shriners hospital had did a lot of surgery s
From what I read about EDS, Thank goodness I’m not a mommy. I have Classical EDS( cEDS) and I can pass it down to my unborn child, and NO Thank you! It’s hard enough for me to deal with! Why would I want to do that to my children?
Why would you even try to pass on this horrible condition?
Wtf is wrong with you
No one is "trying to pass on this horrible condition".....that is naive and absurd of you to say. When you have any form of EDS you do NOT stop living life and achieving dreams and goals just because of EDS. You don't decide not to have kids or family just because you aren't PERFECT like everyone else?? There are millions of other people who are unfit to have kids way more than the EDS community. Go tell them to not have kids and "pass on their alcholism, drug addiction, depression, bi polar, schizophrenia....you get it now :)