Hypermobile Ehlers Danlos Syndrome during pregnancy, birth and beyond

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!

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'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.

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 ❤

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 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.

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.

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! ❤️

Omg. Another yes. I had my kids on 45 minutes. Im glad the doctor was there to catch my kid.

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'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

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.

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).

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.

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.

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.

Yes. No one has even suggested this to me. Im 57.

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.