Ehlers-Danlos Syndrome in Gynecology

I am nearly 70. YouTube recommended an hEDS video to me, and I cried because I had an explanation for my entire life. Starting with the heavy periods at 9 years old and joint pains throughout my life. I realize my mother, maternal grandmother, and brother (all deceased), were also likely hEDS.

Took me 10 years to get my diagnosis for hEDS… it’s such a painful condition. I’m 24, and I’ve declined so much to when I was 16. I’m disabled. And fighting for support is so hard. It’s not easy to get support and I still haven’t got much help. My entire body is affected one way or another. I don’t get a break. You never get to take a break like most people.. most people maybe get sick for a couple of weeks. You never get better with this, you never get to take a break. It affects your sleep, your eating, your sex life, your bathroom habits, your walking, your standing, your sitting, your lying down, your teeth, your lungs, your jaw, your eyes, your toes , fingers, wrists, multiple surgeries, head aches, the constant fatigue.. you wake up and you feel like you need to go back to sleep. You can’t stand up for too long you can’t sit down for too long you can’t lie down for too long… ITS NEVER ENDING. It’s like a slow torture that gets worse as you age. I feel like I’m a 24 year old spirit in a 90 year old body.

I had signs of prolapse at 18 during my first pelvic exam and was accused of past pregnancy during the pelvic exam and was told I was irresponsible for not using birth control…I’m and was an out lesbian(none of my partners produced sperm)If doctors were more educated about EDS then we could do more preventative care. Now I have multiple organ prolapse in my pelvic floor. Thank you for talking about these issues, we need medical staff like you to educate others❤

I have 3 Zebra diseases. EDS, Polycythemia Vera and Cholangiocarcinoma. And I have some other uncommon health issues. Being diagnosed with a rare disease doesn’t make the pain any better. But the validation decreases all the gaslighting. I can’t tell you how many times I’ve been told I’m a lazy faker. It’s important for patients to get diagnosed. And it’s important that doctors explain to family members that the limitations are real.

I’m 51 and was diagnosed with fibromyalgia 8 yrs ago….which led to a diagnosis of EDS, listening to this makes my difficulties validated !! 4 prem babies, horrendous periods, scars not healing, popping open, CONSTANT pain, I could go on. So refreshing to listen to someone who makes me not feel crazy !!! Thank you 🙏🏼

Thank you for this. A lot I know already. What is so distressing for us EDS patients is that good people like yourself stress that we need a multidisciplinary team around us but it just isn't available. Even finding one clinician who understands EDS is so hard and we often have loads of consultants, precisely because it is multisystemic. They don't communicate with each other and we become the ball in patient tennis. You are right that we have to be our own advocates but that is a battle, and almost impossible for some. The UK has some amazing people with expertise but being able to access them is for the privileged only. I work in patient advocacy in the NHS. Health inequalities are high on the agenda but EDS patients who have the greatest need for MDTs are not included in the discussion with any seriousness. It's so very hard.

I have EDS. When I was 25, I had a c-section, after which I continued to bleed, and 3 months later, a complete uterine rupture with massive hemorrhage. I thank the doctor who saved my life that day, every day.

Great video, Dr Corey! Gynecologist from Brazil here. Two other complaints EDS patients may present: lipedema and aesthetic discontent with vulvar appearance (hipertrophy of the labia minora, flabbiness of the labia majora)!

67 yrs old. Three premature babies. Super severe rectocele that no doctor has ever done anything about "Wow! That's bad" I have EDS but nobody cares. Thank you for educating folks. I wish I'd known this stuff earlier.

What a great doctor fully aware of EDS as it goes through the spectrum of a woman's life with EDS. Bravo!

I been trying to figure out what was wrong with me since I was 14... I'm 43 and it was my OBGYN that actually figured out I have EDS! And all because I was sent to her because of my urine leaking issue... I cried because now I know what is wrong finally

Hypermobility Ehlers-Danlos Syndrome here✋. Scoliosis was a major issue in my childhood. Now I've had dozens of joint and tendon repair surgeries, but it's great to hear a doctor talk about EDS as a whole, not just dislocations. At 42, I have stage 2 pelvic prolapse of my bladder and colon. 2 pregnancies in my 30s caused a hiatal hernia, GERD/Reflux, my spine to move around, and my ribs to expand. All of these things cause a lot of pain, but my 2 precious daughters are worth every late night in pain.

We need a team, just there's no chance to get one. Sour video was eye opening, thank you so much for that! In Austria there's hardly any doctor understanding EDS on more than "oh you're hypermobile" level. It's heartbreaking actually.

First baby came at 36 due to preeclampsia. Pitocin got me into labor and fully delivered in just over 1 hour. 2nd baby polyhydramnios, pots dx, spontaneous delivery at 31 weeks. 3rd baby delivered at 35w due to cholestasis. 4th baby pancreatitis in 2nd trimester, in the hospital for a month in labor, finally delivered due to severe polyhydramnios at 35 weeks. Currently dealing with unbearable pubic symphysis pain that gets worse by the day. Nobody believes me. I’m 1 1/2 years post partum and feel like there’s a flaming chainsaw to the pubic symphysis. Thank you so much for sharing this data. It’s too late for me, but I hope this reaches all the people that need it.

Thank you! This answered basically all my questions about my pelvic/vaginal pain. I thought I had endometriosis, but that was dismissed by a GYN. I have been diagnosed with hEDS by a research scientist, but she's not a medical doctor, so she can't make it formal. She wrote a long description in my journal as to why I ticked all the boxes of hEDS and that my GP would just formalise the diagnosis. But no. Every single doctor I've spoken to dismisses it off hand. I'll bring this up with my GYN next time I see her.

Had preterm labor at 25 weeks (baby didn’t make it), have had 3 ACL years, 1 Meniscus tear, diagnosed chronic exertional compartment syndrome (in all four limbs), herniated discs, arthritis in neck and elbows….. finally diagnosed with hEDS at the age of 43. Thank you for helping to spread word about these syndromes!

Thank you for this video. Firstly I would like to thank you on a personal level. EDS is rare to the point where many Drs don’t even know what it is. In this video you will have validated many women’s symptoms, I’m talking about women who only now watching your video that may be realising that EDS could be what they have suffered unknowingly like I had. A massive thank you on behalf of all EDS warriors for bringing AWARENESS to EDS. By bringing awareness you may have saved God knows how many people from suffering with undiagnosed EDS for decades without treatment. This video has great potential in getting an early diagnosis of EDS. I honestly cannot thank you enough, from the bottom of my Australian heart. 😊What I write below are the answers/reasons why I had the health issues from a young age. I am 48 years old and was finally diagnosed with EDS. I had all the pregnancy issues you mentioned including also Diastasis Pubis Symphasis separation where I had to ear the belt around my hips to try to stabilise my pelvic bones. Right up to this day I still get the terrible pain from that separation and I’m assuming it is because I am in menopause right now. I had pre term labours at 28 weeks that were thankfully stopped. I also had all the other things you mentioned ie extremely heavy periods, painful periods from cramping to back pain. Painful intercourse which I feel deep inside also causing bowel pain during intercourse. Labial varicose veins were painful and I still have vascular aching if I stand up for too long. I came across your video randomly and explained exactly why I had all those symptoms etc going on. Thank you so much because if you answered for a lot of my life’s women’s issues with EDS then I’m sure you have done the same for many others.

I wasn't diagnosed with a hypermobility syndrome until post menopause but in retrospect, it explained the severe menorrhagia. 😢 (Among other things) It can get really crazy. Not only heavy and painful, but sometimes lasting months. I feel like the next generations are getting better support and recognition as more Drs are learning, and more is known and available to learn. ❤ Thank you for talking about the effects. And to anyone experiencing this, big gentle hugs.

I have EDS and I’m pregnant currently and my OB only said to get a cardiac workup and said nothing else about risks and thoughts about birthing plans. I wish that MDs had more awareness of certain disorders because there’s nobody to truly counsel some of us on the best medical options for situations because they have no clue 😢.

Just wow. It's all coming together for me. I had dislocations, sprains, torn ligaments, hypermobility my entire life. I had 5 high risk pregnancies that were extremely painful, and was on bedrest for premature labor for a total of 2 years between the 5. All of them were premature. All were lightning fast deliveries. My sacroiliac joint dislocated and my pubic bone broke during my 4th labor, and both rebroke from the weight of baby #5 during my pregnancy. So much more but I was just sent for testing for EDS by my orthopedic doc, and looking back over my life and it truly is eye opening.