I am nearly 70. KZfaq 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’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 🙏🏼

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 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

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.

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.

You talk a lot about finding a team. How do I find even ONE doctor who knows what to do with it?

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

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.

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

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)!

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.

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.

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

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

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.

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!

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 😢.

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.

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.

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

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.

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.

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.

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. 🐸💖

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.

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

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.

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?

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.

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

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

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.

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

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.

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

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

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.

thanks so much for talking about this!

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

Excellent talk!!!!!!!

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

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

Thank you for this - really informative!

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

Dang! This explains so much!

This explains a lot about what i am experiencing

Thank you for this!

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.

thanks so much! This is a great video!!

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

A doctor in Oklahoma knows about EDS. I almost feel like I'm being gaslit. I had to go to Ohio to get diagnosed.

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.

Wow I just came across this while browsing through my KZfaq 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.

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.

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?

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!!!

Could you speak to the possible occurrence of the uterus rupturing or tearing.

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.

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

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

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

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.

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! ❤

My episiotomy and tears stretched soooo much after they healed. My pelvis felt like it was literally tearing apart too. The most painful thing ever when pregnant. I also retained placenta with my first child

So this is why I have urinary issues but I’ve never had children!

Question, some venous insufficiency in legs can cause pelvic congestion....so even if pain is not as present, if lack of sexual stimulation (despite the repeated attempts) that was once there but no longer...could this be part of the venous insufficiency? Who is best to investigate this...gynecology or vascular surgeon? Side note, no EDS diagnosis but HSD...but seem to have all comorbidities that EDSers also get.

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.

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!

What about uterine fibroids?

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.

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.

Thank you. My joints have been replaced, stomach problems and apparently a lifelong rash after mold exposure. Trying to figure out after scoliosis surgery for abdominal pain. Adhesions are also possible. I couldn't become pregnant

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. 😢

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.

Muito obrigada por colocar tradução em português tenho ehlers danlos e no Brasil essa sindrome é pouco conhecida, quando vocês compartilham essas informações sobre ela e como agir consigo aplicar na minha vida e ter uma saúde melhor, também fico mais tranquila por saber como agir. Gratidão doutor!

Do you have any advice on finding an obgyn that knows about eds? I used the provider search tool on the eds website but there isn't a single one registered in the US.

I have the vascular type. Passing out nosebleeds joint dislocations pain inability to heal lack of energy intolerance to heat/cold and a million other pain in the ass problems since I was 7 years old. I'm 43 and only heard about EDS a year ago.

Is a tilted cervix also something that comes with EDS?

What are your thoughts on EDS ans ND? Especially ADHD? Could EDS affect the dopamine receptors or the secretion of dopamine (same as you said about lubrication glands)? As they tend to go hand in hand. To the point of youre ADHD and pregnant be prewarned of early and fast labour.

I have cEDS and my OB/ GYN noticed that I have PCOS and I remember when I had my monthly cycles they were very painful and I would have heavy bleeding which them. Now I have frequent urination and I have had to resort to wearing Adult pull- ups because I have frequent accidents which I can’t get to the bathroom quickly enough and I end up wetting my pull- up. I am notorious for UTI’s and when I was in a fatal car accident that killed my mom, I had my bladder to rupture.

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

Is an anteverted uterus common with EDS? I suffer from chronic pelvic pain and bladder dysfunction.

I haven’t been diagnosed but I suspect I may have a form of EDS. My parents were told when I was a baby that I had “weak ankles” when I was learning to walk and had to have special shoes. I have sprained my ankles and wrists numerous times over the years. I can stack my fingers I use to do that all the time. 😂 I use to be able to put my foot behind my head when I was younger, my weight prevents that now. During my first pregnancy I carried very low, my ObGyn mentioned several times that she had never seen someone carry their first baby that low. I had a lot of pelvic pain but actually went into labor a week passed my due date. I tore pretty badly and had to have a vacuum extraction. The 2nd pregnancy was easier but I carried very high so I hurt in my low ribs mostly. He was also late and I was induced, that labor was a little easier, with zero tears but I hemorrhaged afterwards which was scary but it was fine. Now I’m 42yrs old and have chronic back pain. I have a sway back and can’t seem to build up my core strength anymore and everything feels loose in my back and hips. Is it possible that I do have a type of EDS or am I just being a hypochondriac?

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

What is your experience with H-EDS & premature ovarian failure/fatigue (early onset menopause with no medical or family history cause)? Have you seen a correlation?

I have hypermobile EDS. I had preterm labor issues with both pregnancies.

Oh wow. I had these problems with my children. One 1 month early, cesarean breach. One I dilated so fast I couldn't get the pain meds. Later had bladdercele sp and rectocele. Then fissure. Ended up with 3 surgeries on rectal/vaginal fistula, illiostomy bag and reversal, and one doctor cut my sphincter and had to wait 8 months for enough tissue to grow to get sphinctor repaired. Now my vagina has shrunk to nothing due to all scar tissue and heds. At 57 I can't have sex.

I have been diagnosed with hypermobility, but the NHS in the UK doesn't seem to want to correlate my other symptoms to the hypermobility. Except for the vascular thing I have everything you mention😮. I have been referred to the chronic pain management team so I can live to learn with the pain after many, many injuries. How can I get the GP to take me seriously?

Dr Babb! This is what I ended up being diagnosed with. Very cool that you address EDS.

Is it possible that after emptying a particularly full bladder that a few minutes later there is stabby pain? In my head I imagine that the bladder dropped when full and the pain is when it snaps back up to where it normally sits. Its definitely not the kind of pain when it's infected where it happens at the end of urination. This is a short time later. If so, could that be related to EDS?

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 .

Great videos!

What about pelvic congestion can that be related to ehlers-danlos syndrome?

Is there a national register of doctors in each state that treat this

I think it’s way more common than the medical field says it is.

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!

What about abnormal cytologic smears? I have never had a normal PAP smear. I have seen medical studies online indicate 19% of EDS patients have recurrent abnormal smears. I was finally diagnosed last year at 42 and my current gyno does not think EDS is the cause. In fact he rolled his eyes at me. Anyway, I feel he just isn’t educated on the condition enough to know. And I end up with a colposcopy with biopsy every year and it flares up my symptoms and I’m in pain for days after. What are your thoughts on this?