Ehlers-Danlos Syndrome in Gynecology

[@sbender3787]

I am nearly 70. KZbin 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.

[@christinap-c]

Thank goodness you know now. 😢

[@heatherburch6760]

I hope the answer now helps your family you have. I passed it to my kids

[@megangardner2766]

I hear you- I’m 60 and found out recently- good to get answers and therefore management. I gave birth 9 weeks early for example- after 8 threatened miscarriages during that pregnancy. …So annoying we didn’t know sooner!

[@maureenharrah931]

Right.....I will soon be 70...... SO ME ALL MY LIFE.

[@ehlersdanlosmom6847]

@@megangardner2766 it really is tragic to have gone though all of that not knowing.

[@Boo-YouDoYou]

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.

[@amydietz2151]

I’m feeling so much for you. You still persevere, even with all you have to deal with. I wish that you find someone who can help you recover. Healing is out there but hard to find, I know. Good luck my friend. Peace

[@JessicaHernandez-dn8fg]

I’m on the same boat and I’m not disabled officially but I’m having the hardest doing anything even healthy things like exercise. I’m so distressed and I don’t know what to do.

[@sheilasmith1109]

Do you ever get severe muscle cramps that don't stop?

[@melindajennings8257]

Look into prolotheraphy

[@shannongreenwell1278]

I feel your pain, I have cEDS and I feel the same exact way! Geez when is it ever going to end?

[@hipdip1505]

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❤

[@judithvorster2515]

This would have been funny - if it weren't so sad ;(

[@giakolou2876]

Is there preventative care?

[@DMAC1301]

My uterus prolapsed before I even had my first period. That was just the beginning. Well my double club foot at birth actually was but what I was aware of myself as the first.

[@mamajoker24]

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

[@staciewhite6442]

So helpful to be validated!

[@MamaBearHomeschools]

It's such a validating relief just to get that diagnosis!

[@TheAndibk]

I am in my late 70’s . All my life I knew my body was different.. from age 10-12 years. Imagine how vindicated and Validated I felt to finally have a doctor look at my entire body! I have pursued it for future generations… and God gave me the diagnosis just when ONE grand-daughter needed it! She is 18. She was a gymnast and is a dancer. She recently has been having physiotherapy to learn NOT to stretch as far as she does normally. NOW she has the name … her life will be so different than mine has been and I thank God she will go through life with the POWER the diagnosis carries!

[@TheAndibk]

I split my pelvis having our daughter! the OB Doc congratulated me: I was having natural birth and she said I was also experiencing the pain of having a major bone break.

[@Truerealism747]

​@@TheAndibkI've got it found out I have it at 43 my mum had proloaspsrs detached retinas then severe ms who I've just lost and found out before she died my grandfather told us were diffarant can trace it back to 1825 I have pelvic pain CFS fybromyalgia IBS and don't forget link to Asperger's add for which we have and now my son what a journey do you have fybromyalgia my grandfather did the 3 min mile I no now why

[@amychidley3906]

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.

[@maryr7593]

Same in US except no national health system. Just getting to diagnosis for those of us over 50...is a problem. I self-diagnosed myself (most drs these days roll their eyes when you say you consulted internet research). I kept getting the age old thing, "just because you have hypermobile joints doesn't mean you have HSD or EDS-H" and then refuse to do the evaluations to ensure one way or another. We even have an electronic health record system where all your drs are listed, your meds, your test results, etc....drs can message each other..yet most drs say...ask the x dr about this, ask the y dr about that...by the time you actually see those drs (months later) and if you remember to ask those questions....if the dr x says why did they want you to ask me about that? Unfortunately I almost never remember the why and the issue gets dropped. Drs have reasons for their questions with background info that we do not have....why can't they ask the questions directly (or have assistants do it), record in chart so it is there for everyone to see.

[@naomisherred166]

Thank you for saying this. I have EDS and have no specialist team at all. I get ignored even when I have multiple dislocations as they think I should be used to it. Just because I don't scream my lungs out doesn't mean my very awful pain isn't real. 😐

[@christinahurt7505]

Yes very much the same issues in the US health system. Unfortunately, we must also pay exorbitant health insurance premiums, then still pay high deductibles, copayments for every RX, every office visit, every test, every hospital visit, etc etc. Due to the number of specialists required to treat all the conditions caused by EDS, it is impossible for the average person here to afford appropriate treatment.

[@SobrietyandSolace]

I don’t understand how I can spend 16 years without a diagnosis, see multiple NHS rheumatologists, have them all say nothing is wrong, then go private and they immediately give me a 9/9 Beighton score

[@MamaBearHomeschools]

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.

[@MamaBearHomeschools]

Also, took a very long time for my 2nd C-section to heal and left a gnarly scar.

[@miriamstevens532]

It’s not that is rare, it’s that doctors are not educated as silly as it sounds

[@TeresaLipot]

@@miriamstevens532 I correctly diagnosed a Neurosurgeon's wife and sent him to the national expert, Dr. Lawrence Afrin. I HAVE NO MEDICAL TRAINING!!!

[@LeanneArons]

Adding to the lack of professional education regarding EDS is the issue of EDS presenting in such a variety of ways. No 2 of us are alike.

[@jphanks]

Rarely diagnosed

[@emilymarilynn]

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.

[@leannejones7080]

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 🙏🏼

[@ivybichon8582]

Hi, did you see a rheumatologist or Genesis for your diagnosis?

[@leannejones7080]

Rheumatologist diagnosed the Fibromyalgia then went on a pain management residential program and the Consultant who ran the course was an EDS specialist diagnosed the EDS

[@karencarney7595]

Hot yoga ,intermittent fasting (16:8) which means 16 hrs off, 8 hour eating window, ketogenic diet. Connective tissue holds memory and we are hypersensitive. Connective tissue and fascia that is stretched properly reduces anxiety, pai , nervous system fight and flight (sympathetic mode) . Intermittent fasting allows your body to heal GI issues, reduces inflammation, detoxes and allows your digestive system to process and eliminate food better. By introducing keto you will find animal proteins, veggies and no sugar, low-carb lifestyle reduces inflammation and symptoms while alao increasing HGH(human growth hormone) ,regenerate stem cells in intestines & eliminates POTS in many people. Red light therapy helps, trentinoin. Electrolyte water, movement. And supporting the emotional and neuro effects of EDS through less blue light, atleast 20, min of sunlight a day, Cod Liver Oil.

[@theweirdgamer2833]

My ex left me because of this condition. Because I'm sick too often. Have too many problems. This collection of a VARIETY of syndromes is just absolutely horrible. Despite now getting better physically I feel so horrible mentally

[@MissMellyDi]

I feel this. **HUGS** to you from way over here ❤️

[@SobrietyandSolace]

Mine just left me a few weeks ago too. He was even paid to be my carer and only ever had to go to one appointment but it was still too much

[@primrosedahlia9466]

No wonder we feel awfull mentally with all the health issues and then the domino bricks that fall regarding relationships failure, financial issues and not being able to do all the things that normal people do...not to mention how we all look so "healthy" so people think we are faking it

[@TheEnigmaticmuse]

Lots of men would. They're 6x more likely to leave a terminal spouse than a woman is so leaving a chronically ill spouse isn't shocking. My husband hasn't left me but he has plenty of his own issues.

[@ashm676]

Same here, better to find out he is a weak pathetic excuse for a human now than if he wasted more years of my life and probably abandoned me when I was in a deadly situation later, I build my family tight like mafia we all look out for each other equally

[@qtktpi]

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 😢.

[@Commentraider3]

I hope everything worked out well for you 🤍

[@NikkieRoxxx]

I INSISTED for a c section. Didnt wanted risking a tear and or prolapse of my bladder and or vagina and or uterus and or intestined

[@claudeyaz]

Did your birth go okay?

[@pinkflaminggo3797]

Pregnant with EDS is hard. I almost died after my ob pull the cord too hard and it pulled out my whole fragile uterus with it. My hips,legs and tail bone also affected so bad after labor. It moved like crazy and she didnt even believe me. I got laparotomy at the end and it took 2 year to finaly pain free on the incission. Thats how they found out i have eds. So keep advocating your self.

[@burgerousbabieous]

Cardiac issues are only associated with vEDS I thought.

[@timmiemarshall3978]

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

[@j.svensson7652]

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.

[@maeve_a]

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.

[@bonniemoerdyk9809]

A big gentle hug to you mizmart! I too had severe menorrhagia, and was told I was basically a Female Haemophyliac. I was born in 1955, and have lots of bleeding problems, but when I have mentioned this to new doctors, they laugh their head off at me. Wish I had my records from the 1950's and 60's! Yes, the younger folks are getting better care than we did....all I was told was that we were a "Bendy Bunch"!!

[@Muliebritie]

I am 24!! I have the pain and periods that last months and hyper flexibility... imma call my Dr in the morning I think I have finally finally find a reason. I hope ❤

[@KineticSoul2]

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!

[@AslansAngel1]

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.

[@2degucitas]

I'm overwhelmed by everything you went thru. I don't know how you coped. Have you found a doctor that understands EDS?

[@TsukiNohime16]

The sprains, strains, torn ligaments I get all the dang time! I’m literally off from work from a partial tear to my achilles tendon from sitting on my knees. Also: I have never met someone else who has dislocated at the sciatic, so I so understand that pain. I’m thinking I have EDS, but going to find out could be tricky.

[@michelleflorindahoughton4710]

Diagnosed at age 36 after severe injuries at the gym,went misdiagnosed ,always thought something was wromg with me, felt insecure about my vagina,losing teeth hair body pains,headaches, joint pain,fatigue frequent urination, all misdiagnosed and finally it took an acl injury post 2 years for my god semd doctor who diagnosed me, currently awaiting surgical bracing for both knees.😢i wish positivity love and light to all those in suffering

[@michellejohnson7079]

I really wished I had been diagnosed when I was a teen. Painful, heavy periods followed by 3 children born within 3 years really took its toll. I actually had to be induced with my second child (15 months after my first) because my hips were so painful and subluxation was causing me to fall. I had a uterine ablation when I was 40 (wish I’d had it 14 years earlier after my last pregnancy). Any type of gynaecological procedure that causes pain sends me into a vaso vagal reaction (low blood pressure is also an issue!). I even had both of my knees totally replaced at 46. It was the 6 knee surgeries and revisions that first put me on to possible EDS. And now I’ve just been diagnosed with hEDS at 51. The pain I could have avoided (not to mention being treated like a hypochondriac by doctors and family my whole life) if someone had taken all of my medical issues seriously. Instead you get labelled as anxious and depressed and fed a bunch of drugs that you probably don’t really need. And you spend every day in pain, but worrying that it’s all in your head. I’m disappointed, frustrated and just a little bit angry that I’ve had to live the last 50 years basically on “hard” mode. I wouldn’t wish this on anyone.

[@shaunballard3614]

Dr.'s hate it when you educate and advocate for yourself.

[@gwendolion3295]

I’ve been trying to figure out what was wrong with me for over 50 years!! Finally my orthopedic and podiatrist both diagnosed it. Once I started to research it, it finally all made sense! All my various issues were looked at in silos instead of an integrative, whole body approach.

[@christinahurt7505]

Very happy for you to have finally received a diagnosis. The absence of integrative wholistic approach in mainstream medicine is the biggest problem for many of us. I am 57 and just now finally starting to get a diagnosis despite trying very hard to do so for 30 yrs.

[@IvySnowFillyVideos]

Very interesting. Would be interested to see video on EDS & uterine fibroids. In advance....Thank you

[@LadyRenira]

Been there, done that, removed the uterus, and now dealing with a cystocele and IC, lol. Can't win, but I'm so happy to be done with the troublesome uterus. It's amazing how much more energy you have when you aren't mega bleeding for 8 days every 3 weeks. >

[@ehlersdanlosmom6847]

Such an informative video, thank you! I was diagnosed with hEDS at 44, after the birth of my daughter at 38 yrs old. I had a leep procedure many years prior, and hemorrhaged from it. My OBGYN was concerned i may have an incompetent cervix for pregnancy, but it turns out I had a cervix scarred shut. My water broke but my cervix would not open. My dr. manually broke open the tissue and i was able to fully dilate. Ultimately, I ended up with a c-section and once the baby was removed from my uterus, it collapsed rather than contracted. I hemorrhaged once again. Again, we did not know I had hEDS. Fortunately I healed well from the C-section. For birth control I decided to have an IUD (mirena) inserted. All went as planned until my Dr couldn't find the strings during a check-up. We let things roll for a few years until I decided I wanted it out and my partner chose to get a vasectomy. Well, the IUD was lost in my uterus, so I ended up with a D&C, but she got it out and I healed well after the procedure. My body never bounced back fully after pregnancy and I struggle with back issues, dislocating hips (which were like that prior to pregnancy) and painful periods, more than pre-pregnancy. I'm now 50, so at the age where i'm at some stage of perimenopause, and my cramps are horrific. They are debilitating. I really hope I go through menopause soon because it's ridiculously painful. All this said, i would do it all again for my daughter who is now 12 and just amazing. She does not appear to have hEDS! I share this info not to scare or alarm anyone, but to share my experience so we can all learn how to better manage hEDS. Thank you again for sharing so much information.

[@danicaersland3686]

I was told by a doctor to take one ibuprofen a day like a vitamin in the week leading up to my period to avoid the buildup of prostaglandins, the inflammatory molecule that increases cramps. YMMV but it worked surprisingly well for me, and I'd had cramps that made me faint before. My periods are nonsensically irregular, but I always get severe breast pain the week before, so I just start the Ibuprofen with that.

[@primrosedahlia9466]

Shes only twelve tho. EDS symptoms show up 100% in post puberty in girls, so 17-20 and in boys its when they hit puberty. Make sure to check her copper levels through hair mineral test, because copper deficiency or dysregulation is the issue...so supplement ing copper bisglycinate can help

[@ehlersdanlosmom6847]

@@danicaersland3686 I'm glad you found something that works, and seems safe & manageable. I'm highly allergic to all NSAIDS including ibuprofen so cannot take any over the counter pain reliever. I do have tramadol for bad cramps but it's perscription, and doesn't have the ant-inflammatory properties of NSAIDS, just pain relief. I wasn't always allergic to NSAIDS, which makes me wonder why I developed this allergy in my 30's...I technically was diagnosed with AERD as it came along with sinus issues & polyps...but when I went for MCAS testing, it was a flag leaning towards MCAS (my results were inconclusive, some markers were positive for MCAS, some negative, then some weird things they 'flagged' like this). I wonder if your cycle will get more regular, or if this is how yours will be for you. I hope you continue to be able to manage it, it's really unfortunate to have to go through fainting pain during our cycles. Thankfully I was able to have a healthy pregnancy & child and am at the end of my fertility years. I'm eager to get this part behind me!

[@Staceyintampa]

Please check out estrogen therapy, progesterone should help with periods tremendously. Menopause was a complete nightmare due to the increased joint pain, loss of hormones, and so many other issues. I don't even want to talk about it because it robbed 10 years of my life.

[@GoodnightJLH]

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.

[@robinmattingly3745]

I wish I could of found you when I still lived in Tulsa. After so many gyno's and being blown off this just makes an "ah-ha" moment for me.

[@magdapinto4164]

I just saw your video. I was born in 1963. I was not diagnosed till around 2011, when my twins were 4. One of my twins was diagnosed with it. I am due a hysterectomy end of October. I hope I can get my surgeon to watch this. Im so angry that I have suffered for years. No doctor told me EDS affects womb too. Now my daughters both have issues, PCOS and PMDD.

[@BrettTheHauntedSarcastic]

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.

[@suru01]

More doctors like this please. Found out at 39 via social media (confirmed dx by a specialist). Started to lose all faith in the medical system. How can so many of us have gone our whole lives undiagnosed? Why do people on TikTok legit seem to know more about this than actual doctors? At least this one is informed. Thank you!

[@mandyrobbins2160]

This has been really informative. I wish all doctors were as informed as you are. Unfortunately, it's difficult to get a diagnosis when you're a zebra, much less a highly qualified team to treat the many issues. I've struggled my whole life with various issues that all could be tied to EDS or at the very least, HSD, but no doctor will diagnose it. In the meantime, I'm 44 and falling apart, constantly being shuffled around to various specialists, none of whom want to put all of the pieces together and view this as a systemic collagen issue.

[@candyland8903]

I'm 39, and was finally able to see a specialist in neurology who put all the pieces together for me and diagnosed me yesterday

[@camilamorelli1]

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)!

[@Tambryl]

Yes ! Thank you !

[@traceyatdefiningelegance1250]

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.

[@mickie1154]

OmGosh! I'm late to the party. Its too late for me as I'm 'aged' by now ...but, I am feeling so vindicated when I listen to this vid! My thumb reaches back to the wrist, fingers bend backwards (cannot operate things with push buttons easily)....and have always endured pain when having sex as you described. Have never found a provider that has helped all these many years

[@carollane7296]

It should never be too late for us older folks.

[@sufiharvy7063]

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.

[@PhoenixGoddess4444]

I was diagnosed with EDS in 2019 when I was 48. I had placenta abruption with my 2nd pregnancy in 2000. With both of my pregnancies I had loose pelvic bones that would rub together when getting in and out of a car and a lot of other frequent movements we make. Hindsight is always 20/20

[@merriahbrock4002]

Thank you for bringing this to attention! I am showing this to my GYN and EDS group. I was diagnosed after delivery of all three kids 2008,11,14. I am an L&D nurse and knew my pregnancy issues were not normal but no one could tell me why. I was diagnosed after POTS kicked in from almost dying of sepsis from pneumonia. I lost my career and have been physically disabled since. My hips separated during pregnancies and no help after (told in my head) now I struggle to walk cause my hips because they hyper-flex and I fall A-LOT! I live in pain, one thing that is not talked about with EDS is the PAIN constantly and how it affects your daily living. I was diagnosed in 2017, and still grieving losing my career. I only had 1.5 years left to be a midwife. 😢 Now I am permanently disabled and can’t work unless I can be mobile and can’t get anything to be mobile. Thanks again for bringing more info to this subject!

[@curiouslittlefrog]

Thank you so much for being a doctor who talks about this! Every doctor I have had so far, I’ve known more about my own disability. Had my excision surgery 6 months ago from a specialist excision surgeon and I feel SO much better in remission. 🐸💖

[@SailorYuki]

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.

[@shirleelaw7160]

How common do you find Pubis Diastastis in hEDS patients? I am now 55 and recently diagnosed with hEDS and when my son was born when I was 39, I suffered Pubis Diastastis to the point where I was in a wheelchair for the first few months, a walker until about 5 months in and had to use a cane for many months after. I so wish I could go back in time and have know my hEDS condition and had a gyno like you! Thank you for your posts they are so incredibly educational and helpful.

[@mikamcdonald9974]

I’m 53 and you just ROCKED MY WORLD!!!!! I was diagnosed ADHD as a young child and the diagnosis was dismissed by my parents but the more I am researching it the more I am learning about why my body and mind behave the way they do. As I’m entering menopause now I have new and or worsening symptoms that none of my doctors understand or can help with. Pain in joints, pain during intercourse, pain in my feet and I now have a whole new avenue to look at for potential help with my problems. I am very excited to share this info with my doctors but I’m unsure how to present it to them so that they will take it seriously. Can you tell me where I might find the best reference materials to share with my medical professionals who may not be familiar with EDS?

[@puggirl415]

This is so true. I was always "double jointed" but no one paid attention until I dislocated my knee at 13 simply bending over a coffee table. As a young adult I wasn't insured in this wonderful country so I had to take care of all my injuries. Now that I'm aging all the injuries over the years are making a lot of pain for me. I have bladder problems, sex pain problems, FAI problems, torn labrum problems, strangely shaped joints in the hips. Thing is they aren't actually diagnosing me with anything. I have talked EDS with all of them. They think it's rare. I even have clues in my family that this is a genetic thing. They will not test me beyond the flexibility tests. So I get to live a life in pain, not having sex anymore because it's painful and continued injury and pain.

[@TMSim88]

​@@puggirl415 It's so very hard when you have clear symptoms of something wrong, you KNOW your body is trying to tell you things aren't right, and doctors refuse to take you seriously. And it seems you're laughed off more if you're female! I'll be 79 in a couple of weeks, and wasn't taken seriously until I was in my mid-forties. Even then, most doctors STILL don't take me seriously, even when I tell them my diagnosis of CvEDS. I'm one of LESS THAN A THOUSAND in North America with this diagnosis confirmed. Yet because most doctors have still never even heard of it, much less understand it, they seem to think it's not important enough to learn about. So frustrating!

[@Evelyn_2401]

Reference materials can be found on the EDS society website

[@serenacoils1866]

Never seen a video like this before, not one that covered the subjects you have covered, thanks for sharing, i was diagnosed with Fibromyalgia after being diagnosed with EDS also POTS

[@cocoraia]

This video was wonderfully educational. I don’t have hyper mobile issues, so drs always say I can’t have EDS. But I have pelvic prolapse issues, retroverted uterus, dysautonoma, slow skin healing, easy scaring, jaw dislocation from tbj, and more. I’m going to speak to my doctor about genetic testing. Thank you for this!

[@vedeliatrujillo-hoey8253]

I am 47 years old, and I believe I have EDS. It all started with me wanting to buy a gun, and the guy commented on how I was holding the gum wrong with my thumbs. I said, “well I’m double jointed, so holding it this way is comfortable.” I left there thinking do other people that are “double jointed”, have issues like this? And down a rabbits hole I went. I have so many of the symptoms. In fact many times I felt like a hyperchondriac because I have so many problems of so many organ systems, that I questioned myself if I was makeup all this pain and problems up. I stumbled upon your video and it brought back so many problems I had during my 3 pregnancies and c-section, to my heavy periods and vaginal dryness and pelvic floor spasms, (that I even had pelvic floor therapy). Thank you for your video. I now will f/u with a providers to get tested, but your video has helped so much. Have a blessed day.

[@mindymorgan8479]

Good luck getting tested. I've heard this from 4 doctors and there are no referrals valid for me in Oklahoma. So stupid that all doctors aren't on the same page. Right?

[@teresareinert8271]

Oh! Thank you. I had very heavy periods from age 9. I had a uterine ablation after I started on blood thinners the bleeding was VERY heavy. I’ve just recently been diagnosed as HEDS and waiting on more DNA testing for other issues. I never thought my heavy bleeding was part of my EDS symptoms. I seem to learn something new everyday.

[@Rop6ckc]

Thank you! I am 75 and self-diagnosed with HEDS. I have often suspected my gynecologic issues stemmed from this.

[@MrBurningxembers]

I have eds from my maternal side. I was born very early and suddenly. The doctor called it an "incompetent cervix" back then. My Nana had early sudden births for all of her children as well. Even 10 years ago doctors had very little awareness of eds and pelvic floor issues. I'm glad doctors like you are out there doing the work.

[@barbarapace5826]

All I can say is WOW !!! You are spot on with all the info you give here . Finally someone who knows and understands EDS. U give enough info so that people can start researching and speaking wih their own doctors if they have symptoms. THANK YOU

[@maddycorper4893]

I was diagnosed by an osteopath with hEDS. It explains my lifelong joint pains, gastric issues, my party tricks (I can touch my toes and get my thumbs onto my forearms) plus having difficulty walking when pregnant. It felt like my pelvis was falling apart! It was weird! Thank you for your explanation.

[@TeresaLipot]

You left out Intercystital Cystitis correlated to Mast Cell Activation Syndrome and or Postural Orthostatic Tachycardia Syndrome.

[@christinaspear2764]

I’m just recently dealing with MCAS along with sooooo many other (autoimmune) disorders including EDS. What a nightmare trying to find a doctor that either knows anything about these conditions or will believe you. Because Western medicine primarily addresses the symptoms rather than the root cause of the problem. (While this approach can be affective in treating common illnesses or injuries, and perhaps even serious conditions, it tends to be less focused on prevention). Holistic healthcare focuses on both treatment and prevention. I am finding that Eastern medicine and their providers are much, much more helpful for the types of conditions I’m dealing with.

[@DreuThomas-tf2ts]

Yes!

[@sheenahope3586]

OMG I have IC

[@TeresaLipot]

@@christinaspear2764 Google "Carnivore Doctors". Dr. Berry, Chaffee, Sean Baker. Dr. Robert Kiltz treats infertility and has a killer ice cream recipe!!! Dr. Boz is more Keto. And there's a fantastic woman opthalmologist who will blow your mind on eye health and "a meat based diet".

[@TeresaLipot]

@@sheenahope3586 I also joined my local YMCA to bounce in their pool to increase vitamin D and increase physical activity. 😁

[@emilypenick9414]

Thanks so much! I really appreciate hearing about the full lifecycle. So often post-menopausal people are left out. The information you shared is empowering and will help people prepare. Thank you!

[@kristaskyangel1965]

Thank you so much! This explains most of my life! Connective tissue disorder! Pelvic tightness, pain constantly!

[@christinap-c]

Oh wow I can tell you’ve had many EDS patients. I’m so impressed!!! As far as pregnancy, I wanted to add a couple of things: •pelvis symphysis dysfunction can make it difficult to walk. Using a supportive hip brace can help so much. •my epidural did not really take. Be prepared for that. You’re in Tulsa, Doc? You’re pretty close to me. Are you taking new patients? Thank you.

[@smc5678]

Every time i see a new video i have to add to my symptoms list things i just lived with and didn't know until now of why i went through it .good video and thanks

[@vanessacee4154]

Thank you for this. I’m 52 and just had genetic confirmation of EDS. It makes a lot of sense out of my physical & reproductive health throughout all life stages.

[@Hanna-s5j]

Hi. Would you mind to share what tape or genetic testing did you do for EDS ? and did you had it done on NHS? (if in UK)..Thank you in advance.

[@vanessacee4154]

If you’ve done other DNA testing like Ancestry or 23andme, the Sequencing website does allow you to upload those results and run a free, limited version of the rare disease screening report. You could use that to take a cursory look at some EDS-related genes to check for single or both (homozygous) genetic mutations associated with EDS.

[@melissaschlickenmayer362]

I have EDS and had c-sections w/both. After first child I had an ilues stomach opted not to work for three days and had NG tube. Second child I had my bladder stop working and went home with a catheter for three weeks. There was no child #3 😄. After other surgeries with bleeding issues such as a severe GI bleed, I ended up in the ICU, BP 54/36, rapid transfused 4 units of blood 2 at a time. It was finally after this I was diagnosed with EDS multiple types. Thank you for educating people on this condition!!! 🥰 Greatly appreciated!!!

[@Erin_McEwen]

I’m 37, I got diagnosed with hEDS about a year and a half ago. I have fibroids and a period so heavy I have to wear the same depends I wore after I gave birth at night. I blow through a super plus tampon in an hour or less. This all happens in about 2 days. I use to not have cycles this intense. I’m scheduled for a hysterectomy (just uterus) in January. Can you speak to that with EDS. What healing looks like, PT requirements and pain med completions. Thank you, and thank you for this video. I feel seen. My joints have bothered me since I was a kid, it just got really bad in my early 30s.

[@GenDobry]

This is an excellent video. It's very informative and clear. I recently received confirmation of hypermobility diagnosis by a rheumatology consultant. I have many of the symptoms you described and unexplained chronic pain all my life.

[@smeastwest]

This is the best information I've found about EDS! THANK YOU!!!

[@NScott-mp3ky]

This video made me cry. Explains so much! Would love to see a vid and more info on prolapse and preventing it. EVERY OB/GYN should tell us about that at the very first pelvic exam. Also we need more info on treatments. right now surgery looks like a pretty big fail for us. Thank you for talking about EDS and especially as it relates to gynecology.

[@womanatwellworshiptheFather]

I bleed so much during my period. My endometrium measured 3cm instead of 3mm. I get horrible pain too. Also my ovaries hang down to my cervix if i have a cyst too. I have never been dx with EDS but i was extremely flexible and now my thumbs pop out of my joint and cause lots of pain. I have a crooked middle finger which is also painful as well. My mom had early hip replacement and subluxations of major joints run in my family. My 9 year old can rotate his leg externally until his foot is on his chest 😮. Thank you for your videos

[@michellemabelle123]

Wow. I have so many of these things with eds. I had no clue some of them were related. Thank you!!!

[@FeralDJ]

Wow I just came across this while browsing through my KZbin on TV. I was recently diagnosed with EDS and have seen multiple Gynos and had a horrible IUD experience and then found out I had a retroverted Uterus. I wish you were still in Bville cuz the ones here are terrible and barley knew was EDS was and told me it was all in my head.

[@taraa3456]

No babies, but 15 losses here - hadn’t even occurred to me it could be linked to EDS. Need to check this out… 😮

[@louisehogg8472]

Ouch! What did Queen Anne have?

[@LadyRenira]

Oof. So sorry to hear. :(

[@cab26]

😢❤

[@MrsXx]

Thank you for this video. Unfortunately it took 10 years of actively finding a diagnosis to get diagnosed with Ehler's Danlos syndrome in myself, although it was seen often since birth. I'm now pregnant with my first child & scared as no one professionally understands or has heard of my condition and I've also got type 1 diabetes that complicates things further although we keep it well controlled. I'd feel much more reassured if my OB team had at least heard of my condition.

[@ec8164]

I have 3 c section and have eds , am.now starting to suffered with heavy periods and low blood pressure aswell after pregnancy .. hope ya pregnancy OK and do lots of strengthen training xx

[@ashm676]

Misdiagnosed with classical eds in 2011, diagnosed with kEDS after loosing eyesight in one eye in 2016 with blood test I paid heavily for. 41 never pregnant before but trying and scared as it's now or never for a family. No information or doctor in my country. Would love to hear from others with kEDS and even better if you can give me info on pregnancy and labour to learn from. Best wishes to all, live and let live, life's too short and tough sometimes ❤

[@DSmith-yg4kg]

I'm so happy to come across your video. My teen daughter was recently diagnosed with EDS and I have two more daughters. We live in Tulsa! Dr. David Chorley is a pcp who specializes in EDS practicing in Bixby (south Tulsa).

[@claudinehellmuth]

Such a great video. It’s so refreshing to see a Dr really understand EDS. I have multiple prolapses and never had any pregnancies.

[@mareshahpeterson9940]

I just stumbled across this and one other informative video and I'm not a doctor BUT did you read my charts??😅

[@beanardo09]

You did an amazing job explaining Ehlers Danlos, aside from how it affects gynecology! I wish someone explained what being "double-jointed" really meant when I was younger, like you did here. How differently I would've lived my life! Such a gross deficit in the knowledge of the medical field for such a debilitating condition that can actually ruin your life! I'm now on disability after a life of trauma & working way too hard, with a plethora of issues that fall under the blanket of EDS. From the joints, to the digestive system, skin, sexual organs, and blood vessels. The countless sprains and bones breaking from turning my unstable ankles so often. It all makes sense now! End stage osteoarthritis diagnosed at only 45, 2 new hips now at 47, a wrecked spine in 3 areas, feet need bunion surgery, and arthritic hands that altogether prevent me from working or even doing the things I love, like gardening or playing guitar. Such a bummer! The first time any medical professional even mentioned it wasnt even the Dr. at my Rheumatologist's office. It was the physicians assistant. And I wonder if even SHE would've known or said anything if she herself didn't have EDS! But it was almost like in passing. Not even an official diagnosis of EDS for me. Just a note of Joint Hypermobility! Then they handed me a dictionary sized packet called "Living With Ehlers-Danlos Syndrome and Joint Hypermobility." Like, yup, this could explain ALL your debilitating health issues, but don't worry about it. Here's a packet you'll never get through. Thank you infinity for helping to fill that huge void in medical education and taking the time, brother! This video alone is priceless!

[@Itsyouactually]

Great video! I have hEDS but suspected to have actually classic or classic-like … this pretty much sums up many of the issues I have experienced. I’ve been told to an inverted uterus and there’s pelvic congestive syndrome 😅

[@kelseybarnes7854]

I'm 27 weeks pregnant with my first baby with hypermobile EDS. We also have a higher rate of things like endometriosis and recurrent pregnancy loss, although I don't think there's been much research into why that may be

[@jenc4016]

I have hEDS too, and my pregnancies were really painful, especially my last one (with my son). I have two children, and lost two babies through miscarriages. I also have endometriosis and have had surgery to remove some of the lesions and scar tissue before I had my kids. How was your labour?

[@Moonyeyedmeteor]

your doctor that treats the EDS can tell you why.

[@kelseybarnes7854]

@@jenc4016 my labor was surprisingly easy! I was induced at 38w due to FGR though. Barely tore, only had 4 stitches, although none of them actually dissolved. I'd go through labor/delivery a million times to have another baby, but I DO NOT want to be pregnant again.

[@kelseybarnes7854]

@@Moonyeyedmeteor I know why we have a higher rate of pregnancy loss, but I haven't found anything about EDS and endometriosis being linked

[@maryr7593]

Google it, I have been quite surprised by the amount of research that has been done. Tons of academic research papers. Also, if you havent joined the EDS/HSD registry...you might consider it. For all countries. It is for future research inquiries...they see how many ppl have x comorbidity and may want to know why. If number is high enough, they can put specific number in grant proposal. And if grant is approved, then they know exactly who to contact to see if they want to participate. Last week I got an invite to participate ...they are going to try to find the gene(s) for EDS-h and HSD. Hooray....dont know how long it will take but at least it is being done. (AI technology has made this alot easier...)

[@psychRN11]

I have EDS and had a severe PPH (3L blood loss) due to retained placenta during the fourth stage of labor. I did not have placenta accreta. My doctor said uterine atony is a common problem with EDS. But, I wasn’t diagnosed until 4 years after delivery, so we didn’t know to be on the lookout for it.

[@Segra13]

Any suggestions on how or where to find providers that will listen?.. I've been trying to for years and no luck. At this point I just deal with my health issues the best I can and don't bother talking to health care providers because the gas lighting is so awful.

[@jadedandcynical-sc9ri]

Segra13, Same here. It is hard to find any m.d. who will even listen to you. Ageism and and misogyny seem to be s.o.p.

[@tl9859]

Ehlers Danlos Society website has resources for practitioners

[@Segra13]

@@tl9859 Thank you!

[@TrinaMadeIt]

As a EDS sufferer who has had 5 kids I can totally relate to this. My longest labour was 2.5 hours. All were early (between 36 and 38 weeks). Extreme pain during end of pregnancy. I generally do all my dilation in 1 contraction, literally from 1 or 2 cm’s to fully dilated in 1 5 minute long contraction. I’ve also suffered with chronic knee dislocations, sprained ankles, hyper flexibility and joint pain my whole life.

[@warriormamma8098]

Thank you! So rare that EDS is talked about. We are told it is SO rare. My sister & niece have it. I am certain I have it but my rheumatologist wouldn’t even consider it saying it was SO rare. He did not even do Brighton scale!? I have had anemia on and off 30 yrs due to heavy menstrual cycles. Gyno did nothing other than say eat more iron rich foods. GP sd see gyno. My dad’s father about 1951 newly in America from Ukraine when he was just 4 died suddenly. He recalls his mom saying his dad’s heart exploded! Before I had kids I noticed urine leakage by age 17. Super flexible and GP told my mom I was “double jointed” bc she worried about my sprains and strains. I was 16. Diagnosed with CFS then after no fibromyalgia at age 22. Then SLE at age 33. Now auto antibodies are undetectable. But constant joint and muscle pain. Bulging vaginal wall since age 24. Poor wound healing and cigarette paper scars. Velvety soft skin. Dental issues. GI issues and on and on. My youngest daughter was going though genetic tests and they looked for EDS and sd no. I strongly suspect there are more variations of it and it is being HUGELY dismissed among women especially. I have ribs, fingers, knees, elbows that seem to snap out and hurt until I shift them back in. I am sharing this with my sister & niece. So hard to find any dr who has read more than a paragraph about EDS in Central Florida!

[@bethg7026]

Try getting your GP to refer you to a geneticist, make sure they tell them you show signs of hypermobility, and skin elasticity and fragility, and that your sister is diagnosed already. Rheumatologists should know about EDS but honestly, they are so up to their eyeballs with other diseases that are more clearly in need of rheumatology intervention that some of them kind of ignore EDS. If your sister was formally diagnosed, that makes you an automatic potential EDSer due to its autosomal dominance.

[@Familylawgroup]

Would you consider doing a follow up to this video discussing relapsing polychondritis and Wegner’s granulomatosis? Wegner’s is vascular, if I remember correctly. Are there similarities between Wegner’s and vascular EDS, as far as complications for the patient?

[@cathierainwater]

6:47 I didn't know I had hEDS, but with my 3rd pregnancy, I complained that my hip hurt really bad and felt like it was going to pop out of socket when I would walk. So the advice the OB gave me was literally to not walk. I was asking for a way to prevent the pain so I could continue walking. Ultimately, I saw a prenatal chiropractor and she was able to make it possible. It was 8 years later that I found out I have hEDS. And with that same pregnancy, but not my prior two, I went from 5cm to 10 cm in about 15 minutes...the nurses were in disbelief.

[@maureen3770]

Thank you for this - really informative!

[@JosieStev]

This explains a lot about what i am experiencing

[@nanon1]

EDS in pregnancy and menopause is a bitch, and I wish there was more research on it.

[@ChrystalSafariRoy]

Dang! This explains so much!

[@iamlight1]

What about uterine fibroids?

[@rosawalker3362]

Miscarriages and infertility are also more frequent. It has been discovered a genetic problem with folic acid absortion. It is revommended folic acid ( vit B9) from 15 years on.

[@WayFlowHub]

Do you mean methylfolate instead?

[@ashm676]

​@@WayFlowHubI think that's what I've started to take as it's more absorbable

[@TheSpeedyone2]

Excellent talk!!!!!!!

[@TMSim88]

I have CvEDS. I had uterine suspension surgery for a prolapsed uterus at age 19, and a full hysterectomy 2 days after my 27th birthday, after 2 complicated live births and 7 miscarriages, when I was told my reproductive organs were like old, rotten ground hamburger meat, and I had internal varicose veins 5 cm. in diameter. Yet I wasn't correctly diagnosed with CvEDS until my first 2 heart attacks (3 weeks apart) when I was 43. I've had a third heart attack, 3 brain bleeds, and I've "developed" 4 autoimmune conditions, including MS and RA. Somehow I've managed to stay alive for 78 years and, God willing, will see my 79th birthday on February 16. But I can't help but wonder how much less suffering I'd have endured if I'd been diagnosed correctly much earlier. The saddest part is that bith of my sons, and both grandsons have also been diagnosed with CvEDS. I made sure they were tested! I have great-granddaughters 9 and 11, who haven't been tested yet. I'm praying that they DON'T test positive, so they won't have to go through what I have been through!

[@ashm676]

Happy belated birthday

[@DMAC1301]

I am gonna ask my primary at my next annual it’s coming up this month. There is a dr about an hour away that is supposed to work with this. It would be nice to finally have this named.

[@pacificangel7]

Thank you for your video, helpful. One thing I disagree with though is the idea that someone with EDS needing forceps to have a baby delivered... This is very problematic because EDS is genetic and the likelihood of the baby also having EDS is fairly high. Forceps delivery on a baby with EDS can cause dislocations and other injuries... not a good idea. I would suggest using gravity to assist in delivery if the patient is not progressing in childbirth.

[@amberfaye9338]

thanks so much! This is a great video!!

[@Bendylife]

This was super helpful, thank you! I was Diagnosed last year with EDS and there is surprisingly little infornation on how it can affect the reproductive system. I never knew that my very heavy periods could have also been a symptom! Its definitely going to he interestibg should i have any kids. Im still debating if it will be a good idea or not because of the chance i could end up with worse symptomes after

[@LuthienC]

If he hasn't mentioned it, at the skin pull, bet this guy has EDS himself, hence all the extra knowledge and interest. 💚 The ignorance i run into in nearly every medical encounter gets so tiring. One of the hardest ones most recently was a physiatrist arguing with me about how rare it is to have Endo and PCOS, and PMDD with great disbelief, questioning my reliability...and then when I mentioned it actually seems to be pretty common in the EDS population to have more than one of these conditions co occurring, he literally said "i don't even think EDS exists" he then went on to completely screw me on my MVA insurance claim by saying I would definitely have healed by now, and he can assure me any issues I am currently having are from my preexisting condition, which he greatly downplayed, and answered direct questions the adjuster had asked VERY incorrectly. 🙄

[@Fuphyter]

I hemorraghed after 3 deliveries. I had to get a shot to stop it. My uterus and bladder prolapsed at 37. I had a hysterectomy at 38! I gave 2 pints of my own blood just in case. He used both due to bleeding. The odd thing is I didn't get my period until I was 16 and had 3 day mild ones.

[@phyllisekdom9279]

Wow! Thank u so much for this info. Things are starting to make more sense now. God bless u

[@thatonechick6744]

Thank you so much for sharing! ❤

[@SusieStaplehurst]

Just recently got a HSD diagnosis. My fight for a diagnosis didn’t begin until 2018, two years after a double microdiscetomy, after my nephew was diagnosed with hEDS. Ultimately I will fight for a hEDS diagnosis, but I live in Belgium, where there is only one specialist hospital in the entire country, who basically ignore you unless you might have a rare type, where they can test genetically for! All throughout the revalidation for my back, when I could touch my toes again and contort somewhat, I was just faced with surprise at how flexible I was! No one suggested something else might be going on. I had to look into everything myself. Anyway, so many things in the video make sense, things I didn't even think of before like dryness; I have had skin splitting because of it. It seemed like a "small" issue at the time (and I didn't want to speak up), but all these "small" things add up. I might not have had kids, but I don't know if I want to risk it with unstable SIJs (and no doctor I've ever spoken to believes that they can dislocate). Just so many things to consider! I'm just a huge puzzle that doesn't fit together properly because I'm riddled with faulty collagen.

[@SarahDuckhart-mi3wk]

Hi! I’m wondering if you have any information on EDS and Hysterectomy’s? Healing process and if it’s typical to have any organ damage post surgery?

[@tjdevon0092]

Unfortunately in the UK the NHS don't want to know about your EDS symptoms, sons had major issues since puberty, finally checked his heart, all good but not concerned about his painful loose joints, chronic pain and Scoliosis. 😢

[@SausageRoll4u]

Go private but it totally understand

[@Sunnyfield323]

Nope .. Don’t rely on the medical system location for it so now would be interested to invest in further study … a wellness chiro and Pilates is good. My scoliosis and back pain responds well to regular chiro and Bowen treatment.. I also take collagen powder peptides I’m not sure if it helps but it agrees with me for protein drink and likely to help so I keep taking it

[@ailimeify]

I told my GP about the joint pain, was referred to Rheumatology Clinic at Guy's Hospital (I live in London) and was seen last week. The moment I started describing my symptoms Dr was nodding and confirming it. It was very reassuring. Someone finally acknowledged my fatigue. They ordered a lot of blood tests. Way beyond the basic one ordered by my GP. I hope the same will happen in your son's situation!

[@joranger7389]

Sheffield hospitals (either the general northern hospital or the Sheffield children’s hospital) were fab for me. Got diagnosed at the general northern at the age of 21.

[@sneezymonkey]

Don't give up! Keep badgering them & pushing your point with the G.P.!

[@EmilySewell-n7n]

My older brother was our first family member diagnosed with EDS. Then our mom and then her mom. I’m not officially diagnosed. However I have a variety of issues that were mentioned in this video. My labors have been super fast, urine incontinence and hypermobility… etc. My cousin on my bio father’s side was diagnosed about two years ago with EDS.

[@Misslou2425]

Eds Hypermobility type here. Five pregnancies...4 live births ( 1 early loss) . Very very physically painful pregnancies...hip joints felt dislocated. Lots of pelvic pain. But labor was a breeze and FAST! 1st baby - 6hrs frkm first pain to delivery. 2nd baby...all natural 2 hrs first pain to delivery...all natural rapid labor. First pain to delivery. Third baby....my partial placenta abruption. 3 hrs total. 4 th arrived at hospital at 10cm. Bam! All vaginal.

[@spaceybun]

thanks so much for talking about this!

[@CupsOfCake1]

Thank you. This has helped add to the things I’m going to take to the doctors and help me get my diagnosis. Keep up the great work! ❤

[@ivybichon8582]

Who do people first consult if you’re considering you may have this disorder?

[@TMSim88]

​@@ivybichon8582 Because we want, need, and deserve a CORRECT diagnosis! Especially after being laughed at or ignored by doctors for most of our lives.

[@dancingnature]

I have the hypermobility , easy bruising , frequent nosebleeds as a child , and horrible heavy painful periods that lasted for 2 weeks. I’d dislocated my ankles a few times . I couldn’t walk after I was 5 months pregnant because my hips would dislocate. Rapid labor of 3 hours with both kids .

[@EagleArrow]

After my two youngest, I had hip issues that would then lead to a tight periformis muscle which would irritate my sciatica. After 6 years of pain, a physical therapy doctor realized the stretching they were having me do was making my pain worse and that I was very flexible. So she told me not to stretch at all. It did help. Then I got cortisone shots in my hips as my hips did not go back after the births. This helped tremendously.

[@AuditioningByHeart]

Is there a certain specialist who would have a better chance of knowing something about EDS?