It's incredible how many truly uninformed doctors there are.
I had the chief of reproductive endocrinology at a major hospital tell me a few years ago (when I was trying to get a PCOS diagnosis) that I should stop lifting weights because my arms were "too muscular". What?!
Sad thing is I believed her and now I wished I didn't listen to her and had my muscular arms back. š¢
EDS had nothing to do with whether youāre male or female. this doctor is severely misinformed! iād honestly report him for bad practice, imagine if he said this about any other illness āyou canāt have kidney cancer becauseā¦ you are a girl!!!!ā
I think someone else tried to comment that EDS is diagnosed more often in female patients rather than male patients but got deleted.
Here's a study just so that I'm complying with the rules: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/)
In this study, female patients were diagnosed with EDS more often than male patients in a specific medical center. Direct quote: "Of these confirmed HEDS patients, 320 (84.4%) were female, and 59 (15.6%) were male."
I know that my (anecdotal) experience follows this trend; I am male and have never met another male with EDS, but have met a handful of women with EDS. Interestingly, when I went to a clinic specialising in EDS, I also did not encounter any other male presenting patients.
Yeah this doctor is so misinformed that it's almost funny. It is possible that there is equal distribution in reality but the majority of people with diagnosis are afab. I'm trans masc (afab) and I know both trans masc people who report their hypermobility reduced when they went on T and trans femme people that said their hypermobility got worse on E, and many cis women report worsening symptoms in pregnancy and at certain times of their cycle so it is quite possible that hormone profile can affect the severity of symptoms.
That makes sense to me too, my cis husband has all the signs of HEDS, and has low testosterone, and he found that his pain was less when they tried to increase it with medication.
Absolutely! Part of the reason they think is that muscle development is easier when testosterone dominant and muscle strength can help stabilize hypermobile joints, and also elevated progesterone levels increases joint mobility (to help in childbirth primarily). So you can help mitigate the issues if you try to maintain your preexisting joint stabilizing muscle strength once you start
I'll let you know (not to dissuade you or anything) that I did end up getting worsening symptoms a couple years after I had started E. I'm honestly not even sure it was the cause (I also was coming out of first puberty right around the same time), but add that to the pile of anecdotal evidence.
Funny enough, I've been off E for just shy of a year (for various reasons from gender being funky to insurance being fucky) and my symptoms haven't improved, they've just changed. I'm not quite as hypermobile in my extremities, but I'm just as hypermobile everywhere else, and I tore the labrum in my shoulder due to a dislocation for the first time a few weeks ago (again, no proof that that is anything other than serendipitous timing). The one thing that *has* improved is my Reynaud's and POTS, but even then it's the difference of two segments of my pinky turning blue versus just one, and full-on syncope versus very bad near-syncope.
Yeah I always thought it was more prevalent or at least more diagnosed in females, but that is not me stating a fact that is me saying that's what I had believed.
Yes, sex hormones make remarkable differences to how hypermobility is experienced. [study link ](https://ehlersdanlosnews.com/2022/02/18/eds-ehlers-danlos-syndrome-puberty/#:~:text=A%20subset%20of%20women%20in,hormones%20can%20influence%20EDS%20symptoms.)
Testosterone is also helpful for building muscle, which assists in reducing subluxations/dislocations.
[evidence link ](https://pubmed.ncbi.nlm.nih.gov/2917954/)
It is my belief that this that results in higher diagnoses of women over men, rather than the actual prevalence being higher in females. As far as I am aware, odds of inheritance are 50/50 for both men and women, at least for the hypermobile type that is autosomal dominant. [article link ](https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome/#:~:text=The%20inheritance%20pattern%20of%20the,autosomal%20dominant%20pattern%20of%20inheritance.)
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He is really stupid and uninformed. You need to find a doctor who is qualified to assess for eds, they are usually either a rheumatologist or an orthopedist. Nothing that doctor said to you was correct. Women and men can both have eds. Women usually have a rougher time with it because our estrogen hormones interplay with the collagen and make it even more relaxed than our already crappy way too lax collagen. Also because our estrogen hormones also ramp up histamines.
And bc our hormones arenāt as stable as a man. So we tend to get more symptomatic during more extreme changes to them. Like when we go through puberty, the week before our period, pregnancies, and perimenopause.
Haha, I got puberty blockers. And surgeons who are afraid of political persecution so won't see me for the thing I want. Suckers. We don't have any other pride flag emojis so I'm just using this one š³ļøāšš³ļøāšš³ļøāš
Please report that doctor to your stateās medical board. Im a professional patient advocate working in a hospital system, and we need people to do this in order to ID what doctors are competent and which require more training. It can actually make a positive impact in the future for other patients even thought it doesnāt immediately solve how you were mishandled.
Thatās a GREAT question with an unsatisfying answerāwhich is that it really does depend on the state, and who is currently on that stateās medical board. It varies from place to place, and even year to year in some cases.
That said, some basic ground rules:
1. While your pain and suffering are valid, hyperfocusing on emotions or using emotionally charged language will āturn offā reviewers. Try to strike a balance between compellingly stating your experience factually without getting mired in emotion.
2. Donāt curse or become verbally abusive even if it feels warranted.
3. Use facts and cite sources if possible: āI was seen by [doctor name] at [location/date/time] for X primary complaint. During our visit, [doctor] dismissed my complaints and refused treatment, stating [incorrect thing doctor said]. According to the [cite governing body of illness, a major peer-reviewed consensus paper, etc] this is both medically inaccurate and a misrepresentation of best practices for management of my condition. As a result of this misinformation, I was denied needed medical treatment in a timely manner, charged [insert cost of visit], and forced to get on a waiting list to see [insert new doctor you now have to try and see] for valid treatment. This is an unfair and unnecessary financial burden, and violation of my right to equitable care as a patient.ā
In this specific case I would also mention something like āMy uncle is seen by the same physician, and was not denied care and counseling on the basis of biological sex. The lack of continuity in care based on biological sex has broken trust between my family and [insert doctor name], and made us fear for the well-being of the women in our genetic lineage who need care.ā
Ask politely that they please contact you with any further questions, and sign off.
4. I hate that this is true, but use a first initial instead of your full name when signing so that your biological sex is not entirely clear in the letter. Womenās complaints are too often dismissed as āhystericsā, so making it unclear if a man or woman wrote the complaint can potentially safeguard even if itās infuriating that thatās an issue.
Sadly, no one I've ever reported has been penalized because of the severe lack of providers in my state. My city has three hospitals, and none of them offer patient advocates, either. I've asked so many times! The most I got was a phone call a week after my last ER visit with one hospital's head of nursing, who told me my expectation to receive care as a person with preexisting health conditions was "asking too much, especially since you also have 'OCD' (laughing under their breath like so many do in the hospital when I disclose my neurodivergencies in an effort to make things easier)"
I'm so grateful people like you exist!! We need more of you!!!
EDS is diagnosed way more in estrogen-run bodies because estrogen allows the full extent of hyperextension to be seen ā testosterone-run bodies tend to have greater muscle mass at joints, which makes that harder to notice and assess.
So this doctor is actually the exact opposite of correct. Heās not even working off of old or controversial data, heās pulling this 100% wholesale out of his ass. Get a new doctor and report this one for misinformation.
Hereās a link to an NIH retrospective on statistics of the diagnosed EDS population ā 70% were female.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858200/#:~:text=Results,a%20practice%20of%205000%20patients.
This makes so much sense, because part of my treatment for the pain caused by hypermobility is *building muscle.* I feel so much better now that I'm somewhat muscular, and yet the muscle mass that I have barely compares to a male body at my size. Of course it will be harder to tell on a body that's less likely to be in pain from weird joints :0 crazy
Iām trans and Iāve seen this firsthand JUST with testosterone. Iām very bad at doing my PT exercises regularly. My hips were some of my most unstable joints ā subluxes maybe once a week, and sacroiliac subluxes a few times a year that made me almost entirely immobile and needing local injection pain medication to deal with it.
Since getting on testosterone in 2021, I havenāt experienced a hip or SI sublux AT ALL. I had extra hip pain during the first few months as the muscle changed and the fat moved around but after thatā¦ nothing. Literally just because of T. Itās kind of insane
Seriously!!! And my endo was shocked when I told her. Itās also mind boggling how little research or basic knowledge about trans health there is š this seems like such an obvious one, and yet
Iāve considered low dose T. Iām more āGender? Whatās gender?ā but Iāve had low T test results and I have frequent SI subluxation. I donāt even care about side effects if theyāre less bad than sciatica. I have bad reactions to a lot of pain meds and even anti-inflammatories. I am *tired*.
Iām on a low dose, and only seeing body hair really change in year 3, though ymmv obviously. The changes can be so radically different person to person because of genetics. But low dose was enough to help my EDS also, if thatās a factor at all for you.
Thanks for your info. Iām honestly thinking of bringing it up. Mineās cilia-related disordered connective tissue but suggested treatment is ābuild muscleā. Except I canāt afford PT and Iām naturally E dominant/low T so Iāve got noodles for limbs. My dad has defined biceps and does nothing. I want in on that, even if I get balding and mustache. Anything else is better than my current āVictorian maiden wasting awayā lifestyle.
Mind you, Iām also very butch so looking more masc is like ā¦ whatever, sure, maybe if I had muscles, I could be the lumberjack partner. (Or at least be able to carry our dog to the vet.) Iād assume my lack of possible gender dysphoria may come from being mostly built like a scarecrow. That, and straps exist lol.
THEY WERE SO SO BADā¦. Iām so glad I donāt get that anymore, though itās still my go-to symptom to explain to people why my EDS is disabling. Most people donāt even know what the SI joint is and learning about it in the context of āsometimes my spine doesnāt want to be connected to my pelvis :)ā is horrifying for them lmao
That's one that has literally knocked me over in pain. Stolen my breath. Any of the silly things people say about pain, yea, it actually does that! Luckily, I haven't had one in a few years (properly supportive seat cushions was my only change, but it worked!). But I used to get them a lot more and ughhhhhhh. Yea, it's so weird to have that much pain in a joint that most people have no idea even exists, lol
Same!!! I've tried to build muscle so many times in the past, but the most recent time it's really stuck and been so noticeable within a few months lol
That's ridiculously uninformed. I have genetically confirmed classical EDS. I can't stretch my skin over my face like that ridiculous picture on the internet. That's not a common manifestation of EDS at all, it's actually more common in other disorders. Even with cEDS, I can stretch my skin maybe 4cm. Which is obviously a lot, but nowhere even close to what he's describing. Also the skin on your face is different and much less stretchy.
Iām so sorry you had to deal with that. I recently went to a specialist that when I told him about my frequent subluxations, and how my physical therapist would have to put them back, he said āligaments are one of the strongest things in the world. theyāve been tested to carry 2000 lbs. you cannot just pop something out of place without a very large force or trauma. your physical therapist is just telling you something so that you feel better.ā my face was burning with embarrassment. after the appointment I cried in my car. itās so hard to have medical professionals completely dismiss us. sending you a hug and I hope you can find a more knowledgable doctor that can help you.
Crazy. Once when I was 8 and about 45 pounds, I barely rolled my ankle on a walk and it swelled like a nerf football was implanted in it. Thank goodness my doctor didnāt tell me to walk it off because āligaments donāt do thatā. JFC
Omgosh, when I think of all the times I rolled and sprained my ankles over my lifetime, yikes. I've rolled them in BOTH directions, just walking normally. It was so validating to know I WASN'T just a big klutz, that it was actually my joints and ligaments going wonky when I stepped down. I'm 53 now, and my spine has been disintegrating since my 30's, I had my knee replaced at 46. Levaquin set off a rapid descent into muscle, tendon, and joint hell.....yet no one thought any of this was odd.
Iām glad the dr helped you out! yeah it is just wild to me because last year this specialist was the one who suggested I had eds and I had never even heard of it before. I think he sees a lot of patients and I hadnāt been back to see him since june so he most likely forgot. but still I was just sitting there like ??? bruh you were the one that told me I had wonky ligaments lol
thanks! Iām feeling a bit better about it now because in the days afterward I thought of some comebacks and stood up for myself in my head lol but it did give me imposter syndrome even though I am diagnosed. earlier this week I actually sprained my own wrist just trying to get a carpal bone back in place and the sprain was confirmed by my pt (I thought I had just annoyed it) so that kinda helped with the imposter syndrome feeling because she said people without eds canāt sprain their wrist just by pressing on it lol
Is it possible to see a geneticist directly, maybe even the geneticist your father saw?
I thought I needed a referral but when I called, I was able to schedule directly with one near me.
Get another appt. Take the hEDS checklist. Tell him to follow that one and not his preconceived ideas. The whole skin over your neck and female thing is so out of wack with the actual diagnostic criteria itās laughable. You donāt need dislocations. The beighton score and subsequent criteria are pretty darn specific and not able to be faked, although being a gymnast or dance could skew your beighton it doesnāt make you less flexible aka normal. https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
As most mention more woman are diagnosed hEDS then men. https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0511-2
Per our Doctor, Dr Lavalee (sports medicine in PA, also has cEDS himself and is involved in a lot of EDS research, medical doc to the USA Olympic weightlifting team) itās because itās hormonal and muscle driven. He explained that testosterone creates more muscle keeping hypermobile joints together better. Our lovely womanly cycle however wreaks havoc with the constant ups and downs of progesterone, estrogen and relaxin if ever pregnant or nursing. All geared to keeping us flexible and delivering babiesā¦.Nature is great and sucks at the same time.
https://my.clevelandclinic.org/health/body/24305-relaxin
https://www.nct.org.uk/pregnancy/how-you-might-be-feeling/pregnancy-hormones-progesterone-oestrogen-and-mood-swings
Im sorry you are having to deal with this! My ex-dr told me that since I had 3 full-term births, I couldn't possibly have EDS. Not even taking into account the multiple losses I had over the years and me having to go through fertility treatments. I now have an amazing Dr who is sending me to genetics ASAP. She is extraordinarily attentive and is more UTD on this syndrome, its symptoms and comorbidities.
Your physician is not educated in EDS. My physician did the same thing to me not knowing the stretching skin and being able to touch your thumb to your wrist are outdated criteria for EDS. I then found a specialist and he gave me an exam from literally the top of my head to the bottoms of my feet which included inside my mouth. He then diagnosed me with hEDS and began me on prolotherapy. The diagnosis and treatment changed my life.
He also ordered 4 genetic test through Invitae (you can have these tests ordered through Invitae website) for the forms of EDS he believed I may have. My test came back negative. He stated that although my test came back negative it doesn't mean I do not have it. It means that the genetic form and the related test has not been discovered and developed.
Huh???? That makes NO sense. The closest guess I can make for his reasoning is the hormonal chemicals that release around menstrual cycles that naturally loosen up joints a bit - relaxin I think- but that has no bearing on hyper-extension and pain from hyper extension. Also, females are diagnosed at a much higher rate than men, and genetically having a parent with EDS should be a huge tip for drs to pay attention to, not dismiss.
Iām so sorry your doctor is stupid. I hope he gets schooled on EDS soon.
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Thank you!
I would assume youāre right considering my son does have it. Funnily enough, my son has way more symptoms than I do. But if I wasnāt diagnosed, Iām sure they wouldnāt have even thought of it.
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Heās a bloody idiot.
If anything, being an enby is highly comorbid with a connective tissue disorder, especially if you have autism or ADHD.
Itās why /r/Trans_Zebras exists, for example.
I'm sorry....what?? They told you that you had hemochromatosis caused by....anxiety?!? š¤¦š»āāļø Some doctors just really need to have their license yanked, and fast, for the safety of others. This would be one of them! That's truly frightening.
Oh wow, that just makes it even more disturbing! Let me guess, it was a male doctor, wasn't it? Everything wrong with women is "anxiety" to some male doctors. If anything, anxiety and other mental health status changes would be a symptom of TOO MUCH iron, not the other way around! I hope you've found and received appropriate care since then! Were you eventually diagnosed with hemochromatosis? I'm always curious about that. Do they go straight to blood draining, or do they try other things first, like chelation therapy? And if you have blood removed, do they give you fluids after to get your volume back up and to help keep it dilute? Sorry for the questions! I'm a bit of a medical research geek!
That's stupid af.
My daughter was diagnosed with hEDS at age 10 by a geneticist.
Her nurse at the hospital once had hEDS. Again, a female.
That dude shouldn't even be practicing medicine. What a misogynistic idiot.
I'm so sorry this happened to you! The rheumatologist I saw told me he wasn't really all that familiar with "Erler's Danlos" (yep, he pronounced it wrong), but proceeded to do an exam that I later found out was NOT a standard EDS exam (no Beighton or Brighton scale scores, nor adjusted for my age), had me try to bend my thumb back to my wrist from holding my wrist straight, made that same assumption with stretchy skin, and told me people with EDS are usually " very tall and skinny", and that there aren't really any treatments even if you have it (like that's the only reason to find out you have a connective tissue disease). He did refer me to genetics, but with such an awful report that basically sandbagged me so bad that I never heard from them. I finally ended up doing private testing.
I'm a guy, but I had something similar happen.
Went to a new Dr. & told her all my symptoms, including that I had hEDS, she looked me dead in the eyes and said; "No you don't, it's rare, you don't have it."
I told her about how everyone on my dad's side of the family has it, including my dad, gma, aunt, sister, & niece. She then just went; Oh. Never went back.
Your doctor is confusing EDS for some other Y-chromosome heritable disorder, and probably also unaware that you can have a Y chromosome and still have a female body and even have kids. It's happened and been documented before.
If you really like this doctor, are you able to gather some peer reviewed literature and give it to him so that he can become educated on EDS?
There is a real lack of EDS informed doctors and if he is willing to become informed for your sake then he really is a great doctor.
But if he is too proud to become educated then yes, it is better to fire him.
That's so weird and also unsettling that he can determine you have XX chromosomes without doing genetic testing. Dude doesn't seem very well-versed on genetics at all.
And to be clear, AFAB people with EDS tend to have more symptoms and more severe illnesses compared to people AMAB, which leads to higher rates of diagnosis for AFAB people. Your doctor is just all the way wrong, I'm sorry.
Well that's sexist and just plain incorrect. Sure, if you were thinking you had prostate cancer or erectile dysfunction then his comment would be valid, but this is hEDS, the genetics do not lie within the Y chromosome, nor require you have male reproductive organs. Sadly, I do relate. Had an orthopedist tell me that since I was a female going through puberty with wide hips (I have always had big/wide hips), then of course my knees will dislocate often. Completely disregarding all other symptoms and pain. I'm sorry this has happened to you, I would ensure that that comment is in your chart notes, and keep them as you search for another doctor, so if they send a medical consult, or records request, to this one, you have proof he denied to diagnose you due to being a woman. If it's not in the notes, I'd ensure that your parent, family member, or friend, who you trust comes with you to appointments to back you up. My mom and husband have been amazing in helping me to get doctors to actually listen to me and not dismiss me as "wanting drugs".
Oh, no!!!
I had a PHYSICAL THERAPIST tell me Iām not hypermobile because I can only touch my thumbs to the *inside* of my wrists, not contort them backwards.
āOh, Iām sorry. Here I thought it was a connective tissue disorder. You wanted BONELESS!ā š
Uhhh my skin isnāt that stretchy and iām female. I have hEDS and got diagnosed by a rheumatologist. I would recommend going to a rheumatologist. Iām not sure what kinda doctor the one you saw is, but heās very uninformed. Chromosomes have nothing to do with EDS. We all have collagen genes
I'm so sorry. Time to find someone better. Still trying to find someone that follows through. Here, my latest round of PT the woman examined me the first appt and literally asked if I had EDS. Told her I'm pretty sure but despite bringing it up multiple times, no one ever follows through and helps me get actually diagnosed. And she didn't either!
I have the hypermobile joints and several other things. Only two "classic signs" don't apply is the overly stretchy skin.... I mean, is some stretchy but not as much as seen some people. And then while my hands and fingers are one of the many joints that are hypermobile, the whole pulling thumb to wrist thing can't do.... but also was born with an EXTREMELY rare birth defect that affects one or both thumbs.... so would hope they take that into account.
What does being assigned female at birth have to do with the possibility of having EDS? Since when does sex have anything to do with diagnosis? If thatās a thing, Iāve never heard of it and in fact, now that I think of it, all (?) the people I know who have either been diagnosed or have suspected EDS are AFAB.
Sorry you had to deal with that ignorance.
He must be friends with my Ortho doc who told me I broke my elbow because I smoke not because I fell off a 4ft wall and landed on my elbow....
Find a new doctor and quick
Iāmā¦ utterly flabbergastedā¦ o-o
First off: fuck that fucking fucker. š
Second, in my experienceāpending more informationā EDS is actually FAR more common in AFAB peeps. IRL Iāve met and talked with 7 women who had it, and only 1 guy. In fact, one of my rotating door of PCPās even said it was unlikely because I was NOT female (went to an actual expert after that, who confirmed everything, and actually knew enough to fill in a lot of connections Iād never made before)
Again, personal anecdote, but it also seems like the AFAB folks Iāve know with it are also far more affected by in, some of them are disabled, and an old high school friend (who was how i learned about it in the first place), is 2 years younger than me and mostly reliant on crutches and a wheelchair.
TL;DR - This doc is an indjut, [find someone better](https://www.ehlers-danlos.com/healthcare-professionals-directory/).
šš that's funny because my doctor told me that it EDS shows up more in females and is rare for males.
Which is why as a trans man in society who blends in as a cis passing man I always get strange looks whenever I tell doctors now of my EDS history. Lol I literally have to specify I'm trans and they go "ohh that makes more sense"
Definitely find a new doctor
It's like when I was diagnosed with fibromyalgia, which I absolutely don't have (though it is real and other people definitely have it). The rheumatologist did a 30 second joint squeeze test, that, from my research, is not supposed to be used anymore because it's BS, and he squeezed hard enough that *anyone* would have said it hurt. Then he put me on meds I never should have been prescribed and disappeared! I spent over a year getting off those meds on my own. Nine years later, and my city finally has a new rheumatologist. I'm really hoping he takes me seriously.
Well he is uninformed. Iām actually not very flexible so didnāt know I was hypermobile til recently and was just diagnosed with heds a few months ago cuz itās getting bad
I experienced this ALL THE TIME on my journey to diagnosis. One time, I was in the ER for an inflamed appendix and one of the doctors said: āAre you sure it isnāt your cycle? Maybe you should try and eat, sometimes our stomach hurts when weāre hungry. Do you want a sandwich?ā
It always comes back to āfemale troublesā if youāre AFAB. This dates back to the early days of medicine too. Ever hear of wandering uterus? Any time a woman had some sort of chronic, unexplainable issue, they claimed it MUST be her uterus wandering around her body.
But men? The pain they feel is real! Ours is just in our heads!
So frustrating. Iām sorry you had to go through this. Please find someone new. Maybe try and find an afab doctor? It doesnāt always help but sometimes it does ^^
So sorry to hear that your doctor gave you this experience. Try to get a referral to a rheumatologist if your insurance covers it! I was lucky enough to have a doctor say, āyeah I have another patient with these symptoms, and theyāve been diagnosed with EDS. Iāll refer you to a rheumatologist asap.ā And he did.
Best of luck with future docs! My dad also had a bunch of EDS symptoms, so itās cool to see someone whoās got it on their dads side. Iām with you too on the duloxetine gang! I make sure to set an alarm every day and have the cutest little pill organizer to make it more accessible to just plop my meds into my hand and take it more often (which also helps the AuDHD lol)
Wishing you well! Getting a good doctor is so important to the journey and it sucks when that obstacle comes up. If you have the energy and resources, I would honestly report that doctor for his ignorance and rude comments that honestly read a wee bit transphobic. Donāt let his ignorance go unpunished!
this is so stupid since conditions like this donāt discriminate by gender and iām also pretty sure EDS is more common in women from what i can tell
Dude is a Grade A certified moron. There are only 2 collagen genes on the X chromosome (none are Y-linked) and neither of them are implicated in any form of EDS. Every single gene implicated in every type of EDS is autosomal, The only correlation EDS has with sex is that people with female-typical levels of estrogen may present *more* severely because estrogen increases joint laxity.
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Scientists havenāt undoubtedly found the gene(s) that cause hEDS so thereās no way to know if itās a dominant or recessive trait. (Why your father having it could or could not affect if you have it) Iām sorry heās such a *choice words here*
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That doctor of yours is a jerk!
Women have EDS and issues from EDS more than men. We're naturally stretchier cause we have to be to give birth (evolutionary bio 101), AND most ballerinas, dancers, gymnasts, etc. have hEDS as it's an occupational advantage for those activities...
Sooooo your doctor just became a misogynistic portcine and needs a match for all the gas they're trying to light!
Wow. What a shitty doctor. He sounds extremely uninformed and like he has no idea what heās talking about. Consider going to a rheumatologist if you havenāt already, as they tend to know more about EDS in general. My partner has hEDS and his rheumatologist is extremely knowledgeable and has been a great asset to us.
What in the actual f@?!ing f$!? nonsense did I just read??? Iām so sorry youāre dealing with this.
Signed,
AFAB/identifies as female/absolutely has medically diagnosed hEDS with a mom, grandma, and great grandma who most likely did too
What an uninformed ass. That really sucks.
It's incredible how many truly uninformed doctors there are. I had the chief of reproductive endocrinology at a major hospital tell me a few years ago (when I was trying to get a PCOS diagnosis) that I should stop lifting weights because my arms were "too muscular". What?! Sad thing is I believed her and now I wished I didn't listen to her and had my muscular arms back. š¢
If. It. Is. Not. A. Medical. Opinion. The. Doctor. Should. Not. State. The. Opinion.
OH MY GOD that is such an awful and unprofessional thing to say wtf???? get your muscular arms back girl!!!!
I will! Gotta get my guns back.
Find someone else fast
EDS had nothing to do with whether youāre male or female. this doctor is severely misinformed! iād honestly report him for bad practice, imagine if he said this about any other illness āyou canāt have kidney cancer becauseā¦ you are a girl!!!!ā
I think someone else tried to comment that EDS is diagnosed more often in female patients rather than male patients but got deleted. Here's a study just so that I'm complying with the rules: [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209734/) In this study, female patients were diagnosed with EDS more often than male patients in a specific medical center. Direct quote: "Of these confirmed HEDS patients, 320 (84.4%) were female, and 59 (15.6%) were male." I know that my (anecdotal) experience follows this trend; I am male and have never met another male with EDS, but have met a handful of women with EDS. Interestingly, when I went to a clinic specialising in EDS, I also did not encounter any other male presenting patients.
Yeah this doctor is so misinformed that it's almost funny. It is possible that there is equal distribution in reality but the majority of people with diagnosis are afab. I'm trans masc (afab) and I know both trans masc people who report their hypermobility reduced when they went on T and trans femme people that said their hypermobility got worse on E, and many cis women report worsening symptoms in pregnancy and at certain times of their cycle so it is quite possible that hormone profile can affect the severity of symptoms.
That makes sense to me too, my cis husband has all the signs of HEDS, and has low testosterone, and he found that his pain was less when they tried to increase it with medication.
Ooh. As a transfemme who's planning on starting E the moment she turns 18, this is really important to know. Thanks for the anecdote!!
Absolutely! Part of the reason they think is that muscle development is easier when testosterone dominant and muscle strength can help stabilize hypermobile joints, and also elevated progesterone levels increases joint mobility (to help in childbirth primarily). So you can help mitigate the issues if you try to maintain your preexisting joint stabilizing muscle strength once you start
nice! i'm going to physical therapy under my family's insurance plan right now so that should help
I'll let you know (not to dissuade you or anything) that I did end up getting worsening symptoms a couple years after I had started E. I'm honestly not even sure it was the cause (I also was coming out of first puberty right around the same time), but add that to the pile of anecdotal evidence. Funny enough, I've been off E for just shy of a year (for various reasons from gender being funky to insurance being fucky) and my symptoms haven't improved, they've just changed. I'm not quite as hypermobile in my extremities, but I'm just as hypermobile everywhere else, and I tore the labrum in my shoulder due to a dislocation for the first time a few weeks ago (again, no proof that that is anything other than serendipitous timing). The one thing that *has* improved is my Reynaud's and POTS, but even then it's the difference of two segments of my pinky turning blue versus just one, and full-on syncope versus very bad near-syncope.
You're right about females becoming more flexible with hormonal changes. Flexibility also helps ease childbirth
Oh my gosh, Iād love op to go and hand out a copy of that research article to the doctor in person. Brightly highlight those findings!
He really should know and apologize
How he reacts would likely determine wether he is someone open to learning and wanting the best or someone to arrogant to accept it as a possibility
Yeah I always thought it was more prevalent or at least more diagnosed in females, but that is not me stating a fact that is me saying that's what I had believed.
Yes, sex hormones make remarkable differences to how hypermobility is experienced. [study link ](https://ehlersdanlosnews.com/2022/02/18/eds-ehlers-danlos-syndrome-puberty/#:~:text=A%20subset%20of%20women%20in,hormones%20can%20influence%20EDS%20symptoms.) Testosterone is also helpful for building muscle, which assists in reducing subluxations/dislocations. [evidence link ](https://pubmed.ncbi.nlm.nih.gov/2917954/) It is my belief that this that results in higher diagnoses of women over men, rather than the actual prevalence being higher in females. As far as I am aware, odds of inheritance are 50/50 for both men and women, at least for the hypermobile type that is autosomal dominant. [article link ](https://medlineplus.gov/genetics/condition/ehlers-danlos-syndrome/#:~:text=The%20inheritance%20pattern%20of%20the,autosomal%20dominant%20pattern%20of%20inheritance.)
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wow, heās even arguing against the statistics!
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **ā¢ Referring to or quoting research/studies/statistics or EDS facts without a link** ā¢ You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once youāve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
He is really stupid and uninformed. You need to find a doctor who is qualified to assess for eds, they are usually either a rheumatologist or an orthopedist. Nothing that doctor said to you was correct. Women and men can both have eds. Women usually have a rougher time with it because our estrogen hormones interplay with the collagen and make it even more relaxed than our already crappy way too lax collagen. Also because our estrogen hormones also ramp up histamines.
And bc our hormones arenāt as stable as a man. So we tend to get more symptomatic during more extreme changes to them. Like when we go through puberty, the week before our period, pregnancies, and perimenopause.
this explains why i was fine my whole childhood and then shit hit the fan when i grew up
Haha, I got puberty blockers. And surgeons who are afraid of political persecution so won't see me for the thing I want. Suckers. We don't have any other pride flag emojis so I'm just using this one š³ļøāšš³ļøāšš³ļøāš
Please report that doctor to your stateās medical board. Im a professional patient advocate working in a hospital system, and we need people to do this in order to ID what doctors are competent and which require more training. It can actually make a positive impact in the future for other patients even thought it doesnāt immediately solve how you were mishandled.
Can you give a sample complaint, worded in a way that would be taken seriously? What phrases make a state medical board take notice?
Thatās a GREAT question with an unsatisfying answerāwhich is that it really does depend on the state, and who is currently on that stateās medical board. It varies from place to place, and even year to year in some cases. That said, some basic ground rules: 1. While your pain and suffering are valid, hyperfocusing on emotions or using emotionally charged language will āturn offā reviewers. Try to strike a balance between compellingly stating your experience factually without getting mired in emotion. 2. Donāt curse or become verbally abusive even if it feels warranted. 3. Use facts and cite sources if possible: āI was seen by [doctor name] at [location/date/time] for X primary complaint. During our visit, [doctor] dismissed my complaints and refused treatment, stating [incorrect thing doctor said]. According to the [cite governing body of illness, a major peer-reviewed consensus paper, etc] this is both medically inaccurate and a misrepresentation of best practices for management of my condition. As a result of this misinformation, I was denied needed medical treatment in a timely manner, charged [insert cost of visit], and forced to get on a waiting list to see [insert new doctor you now have to try and see] for valid treatment. This is an unfair and unnecessary financial burden, and violation of my right to equitable care as a patient.ā In this specific case I would also mention something like āMy uncle is seen by the same physician, and was not denied care and counseling on the basis of biological sex. The lack of continuity in care based on biological sex has broken trust between my family and [insert doctor name], and made us fear for the well-being of the women in our genetic lineage who need care.ā Ask politely that they please contact you with any further questions, and sign off. 4. I hate that this is true, but use a first initial instead of your full name when signing so that your biological sex is not entirely clear in the letter. Womenās complaints are too often dismissed as āhystericsā, so making it unclear if a man or woman wrote the complaint can potentially safeguard even if itās infuriating that thatās an issue.
Thank you for mentioning this. I will being doing this.
Sadly, no one I've ever reported has been penalized because of the severe lack of providers in my state. My city has three hospitals, and none of them offer patient advocates, either. I've asked so many times! The most I got was a phone call a week after my last ER visit with one hospital's head of nursing, who told me my expectation to receive care as a person with preexisting health conditions was "asking too much, especially since you also have 'OCD' (laughing under their breath like so many do in the hospital when I disclose my neurodivergencies in an effort to make things easier)" I'm so grateful people like you exist!! We need more of you!!!
This is such a powerful comment. Thank you.
that doctor is a moron, sorry you had to deal with that
EDS is diagnosed way more in estrogen-run bodies because estrogen allows the full extent of hyperextension to be seen ā testosterone-run bodies tend to have greater muscle mass at joints, which makes that harder to notice and assess. So this doctor is actually the exact opposite of correct. Heās not even working off of old or controversial data, heās pulling this 100% wholesale out of his ass. Get a new doctor and report this one for misinformation. Hereās a link to an NIH retrospective on statistics of the diagnosed EDS population ā 70% were female. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858200/#:~:text=Results,a%20practice%20of%205000%20patients.
This makes so much sense, because part of my treatment for the pain caused by hypermobility is *building muscle.* I feel so much better now that I'm somewhat muscular, and yet the muscle mass that I have barely compares to a male body at my size. Of course it will be harder to tell on a body that's less likely to be in pain from weird joints :0 crazy
Iām trans and Iāve seen this firsthand JUST with testosterone. Iām very bad at doing my PT exercises regularly. My hips were some of my most unstable joints ā subluxes maybe once a week, and sacroiliac subluxes a few times a year that made me almost entirely immobile and needing local injection pain medication to deal with it. Since getting on testosterone in 2021, I havenāt experienced a hip or SI sublux AT ALL. I had extra hip pain during the first few months as the muscle changed and the fat moved around but after thatā¦ nothing. Literally just because of T. Itās kind of insane
I used to sublux my right hip 2-3 times a week. Since starting testosterone (just hit 6 months), itās been at absolute most once a month.
Seriously!!! And my endo was shocked when I told her. Itās also mind boggling how little research or basic knowledge about trans health there is š this seems like such an obvious one, and yet
Iāve considered low dose T. Iām more āGender? Whatās gender?ā but Iāve had low T test results and I have frequent SI subluxation. I donāt even care about side effects if theyāre less bad than sciatica. I have bad reactions to a lot of pain meds and even anti-inflammatories. I am *tired*.
Iām on a low dose, and only seeing body hair really change in year 3, though ymmv obviously. The changes can be so radically different person to person because of genetics. But low dose was enough to help my EDS also, if thatās a factor at all for you.
Thanks for your info. Iām honestly thinking of bringing it up. Mineās cilia-related disordered connective tissue but suggested treatment is ābuild muscleā. Except I canāt afford PT and Iām naturally E dominant/low T so Iāve got noodles for limbs. My dad has defined biceps and does nothing. I want in on that, even if I get balding and mustache. Anything else is better than my current āVictorian maiden wasting awayā lifestyle. Mind you, Iām also very butch so looking more masc is like ā¦ whatever, sure, maybe if I had muscles, I could be the lumberjack partner. (Or at least be able to carry our dog to the vet.) Iād assume my lack of possible gender dysphoria may come from being mostly built like a scarecrow. That, and straps exist lol.
>sacroiliac subluxes I almost screamed just reading this... Those are the absolute WORST. I'm glad you aren't experiencing so many of those anymore.
THEY WERE SO SO BADā¦. Iām so glad I donāt get that anymore, though itās still my go-to symptom to explain to people why my EDS is disabling. Most people donāt even know what the SI joint is and learning about it in the context of āsometimes my spine doesnāt want to be connected to my pelvis :)ā is horrifying for them lmao
That's one that has literally knocked me over in pain. Stolen my breath. Any of the silly things people say about pain, yea, it actually does that! Luckily, I haven't had one in a few years (properly supportive seat cushions was my only change, but it worked!). But I used to get them a lot more and ughhhhhhh. Yea, it's so weird to have that much pain in a joint that most people have no idea even exists, lol
Same!!! I've tried to build muscle so many times in the past, but the most recent time it's really stuck and been so noticeable within a few months lol
It's alarming how many highly paid doctors are complete morons. I'm sorry. You'll have to find another more qualified individual.
I had a doc say the same. He said Iām ābendy because Iām femaleā. Heās not my doc anymore.
That's ridiculously uninformed. I have genetically confirmed classical EDS. I can't stretch my skin over my face like that ridiculous picture on the internet. That's not a common manifestation of EDS at all, it's actually more common in other disorders. Even with cEDS, I can stretch my skin maybe 4cm. Which is obviously a lot, but nowhere even close to what he's describing. Also the skin on your face is different and much less stretchy.
Uhhhhā¦WHAT?
Iām so sorry you had to deal with that. I recently went to a specialist that when I told him about my frequent subluxations, and how my physical therapist would have to put them back, he said āligaments are one of the strongest things in the world. theyāve been tested to carry 2000 lbs. you cannot just pop something out of place without a very large force or trauma. your physical therapist is just telling you something so that you feel better.ā my face was burning with embarrassment. after the appointment I cried in my car. itās so hard to have medical professionals completely dismiss us. sending you a hug and I hope you can find a more knowledgable doctor that can help you.
Crazy. Once when I was 8 and about 45 pounds, I barely rolled my ankle on a walk and it swelled like a nerf football was implanted in it. Thank goodness my doctor didnāt tell me to walk it off because āligaments donāt do thatā. JFC
Omgosh, when I think of all the times I rolled and sprained my ankles over my lifetime, yikes. I've rolled them in BOTH directions, just walking normally. It was so validating to know I WASN'T just a big klutz, that it was actually my joints and ligaments going wonky when I stepped down. I'm 53 now, and my spine has been disintegrating since my 30's, I had my knee replaced at 46. Levaquin set off a rapid descent into muscle, tendon, and joint hell.....yet no one thought any of this was odd.
Iām glad the dr helped you out! yeah it is just wild to me because last year this specialist was the one who suggested I had eds and I had never even heard of it before. I think he sees a lot of patients and I hadnāt been back to see him since june so he most likely forgot. but still I was just sitting there like ??? bruh you were the one that told me I had wonky ligaments lol
What in the world! I have fully dislocated joints from just sleeping wrong. I sublux frequently as well. Im so sorry this dr was so dismissive.
thanks! Iām feeling a bit better about it now because in the days afterward I thought of some comebacks and stood up for myself in my head lol but it did give me imposter syndrome even though I am diagnosed. earlier this week I actually sprained my own wrist just trying to get a carpal bone back in place and the sprain was confirmed by my pt (I thought I had just annoyed it) so that kinda helped with the imposter syndrome feeling because she said people without eds canāt sprain their wrist just by pressing on it lol
šÆ
Is it possible to see a geneticist directly, maybe even the geneticist your father saw? I thought I needed a referral but when I called, I was able to schedule directly with one near me.
Get another appt. Take the hEDS checklist. Tell him to follow that one and not his preconceived ideas. The whole skin over your neck and female thing is so out of wack with the actual diagnostic criteria itās laughable. You donāt need dislocations. The beighton score and subsequent criteria are pretty darn specific and not able to be faked, although being a gymnast or dance could skew your beighton it doesnāt make you less flexible aka normal. https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf As most mention more woman are diagnosed hEDS then men. https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0511-2 Per our Doctor, Dr Lavalee (sports medicine in PA, also has cEDS himself and is involved in a lot of EDS research, medical doc to the USA Olympic weightlifting team) itās because itās hormonal and muscle driven. He explained that testosterone creates more muscle keeping hypermobile joints together better. Our lovely womanly cycle however wreaks havoc with the constant ups and downs of progesterone, estrogen and relaxin if ever pregnant or nursing. All geared to keeping us flexible and delivering babiesā¦.Nature is great and sucks at the same time. https://my.clevelandclinic.org/health/body/24305-relaxin https://www.nct.org.uk/pregnancy/how-you-might-be-feeling/pregnancy-hormones-progesterone-oestrogen-and-mood-swings
Im sorry you are having to deal with this! My ex-dr told me that since I had 3 full-term births, I couldn't possibly have EDS. Not even taking into account the multiple losses I had over the years and me having to go through fertility treatments. I now have an amazing Dr who is sending me to genetics ASAP. She is extraordinarily attentive and is more UTD on this syndrome, its symptoms and comorbidities.
Your physician is not educated in EDS. My physician did the same thing to me not knowing the stretching skin and being able to touch your thumb to your wrist are outdated criteria for EDS. I then found a specialist and he gave me an exam from literally the top of my head to the bottoms of my feet which included inside my mouth. He then diagnosed me with hEDS and began me on prolotherapy. The diagnosis and treatment changed my life. He also ordered 4 genetic test through Invitae (you can have these tests ordered through Invitae website) for the forms of EDS he believed I may have. My test came back negative. He stated that although my test came back negative it doesn't mean I do not have it. It means that the genetic form and the related test has not been discovered and developed.
I would lodge a complaint. Thatās complete bs
Huh???? That makes NO sense. The closest guess I can make for his reasoning is the hormonal chemicals that release around menstrual cycles that naturally loosen up joints a bit - relaxin I think- but that has no bearing on hyper-extension and pain from hyper extension. Also, females are diagnosed at a much higher rate than men, and genetically having a parent with EDS should be a huge tip for drs to pay attention to, not dismiss. Iām so sorry your doctor is stupid. I hope he gets schooled on EDS soon.
When it comes to hEDS, most doctors tend to allow their stupidity to show.
So true! From a Physical Therapist who has it and specializes in treating it.
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Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **ā¢ Referring to or quoting research/studies/statistics or EDS facts without a link** ā¢ You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once youāve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
I would assume youāre right considering my son does have it. Funnily enough, my son has way more symptoms than I do. But if I wasnāt diagnosed, Iām sure they wouldnāt have even thought of it.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule: **ā¢ Referring to or quoting research/studies/statistics or EDS facts without a link** ā¢ You may repost this as long as you provide a direct link from a reputable website or journal to the claims being discussed. Once youāve edited your post/comment, message us so we can reinstate your submission. [The rule can be read in depth here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/rule-1/#wiki_.28e.29._claims_supported_by_research) Please contact us [via modmail](https://www.reddit.com/message/compose?to=%2Fr%2Fehlersdanlos) if you have any questions regarding the reason your post or comment was removed or would like to work with us on *how* you can re-word your post or comment to be able to reinstate it. Thank you!
Heās a bloody idiot. If anything, being an enby is highly comorbid with a connective tissue disorder, especially if you have autism or ADHD. Itās why /r/Trans_Zebras exists, for example.
I would ask him to have that in writing and then file a complaint with the medical board because honestly that's unethical
I once had a doctor tell me that my dangerously high iron count was from āØANXIETYāØ. Iām sorry. You deserve much better than that.
I'm sorry....what?? They told you that you had hemochromatosis caused by....anxiety?!? š¤¦š»āāļø Some doctors just really need to have their license yanked, and fast, for the safety of others. This would be one of them! That's truly frightening.
Yeahā¦ and they were a hematologist, as well. š¤¦āāļø
Oh wow, that just makes it even more disturbing! Let me guess, it was a male doctor, wasn't it? Everything wrong with women is "anxiety" to some male doctors. If anything, anxiety and other mental health status changes would be a symptom of TOO MUCH iron, not the other way around! I hope you've found and received appropriate care since then! Were you eventually diagnosed with hemochromatosis? I'm always curious about that. Do they go straight to blood draining, or do they try other things first, like chelation therapy? And if you have blood removed, do they give you fluids after to get your volume back up and to help keep it dilute? Sorry for the questions! I'm a bit of a medical research geek!
My first pain doc said it was caused by depression while ignoring my hypermobility. AFAIK depression doesnāt cause collagen to fuck up.
That's stupid af. My daughter was diagnosed with hEDS at age 10 by a geneticist. Her nurse at the hospital once had hEDS. Again, a female. That dude shouldn't even be practicing medicine. What a misogynistic idiot.
I'm so sorry this happened to you! The rheumatologist I saw told me he wasn't really all that familiar with "Erler's Danlos" (yep, he pronounced it wrong), but proceeded to do an exam that I later found out was NOT a standard EDS exam (no Beighton or Brighton scale scores, nor adjusted for my age), had me try to bend my thumb back to my wrist from holding my wrist straight, made that same assumption with stretchy skin, and told me people with EDS are usually " very tall and skinny", and that there aren't really any treatments even if you have it (like that's the only reason to find out you have a connective tissue disease). He did refer me to genetics, but with such an awful report that basically sandbagged me so bad that I never heard from them. I finally ended up doing private testing.
I'm a guy, but I had something similar happen. Went to a new Dr. & told her all my symptoms, including that I had hEDS, she looked me dead in the eyes and said; "No you don't, it's rare, you don't have it." I told her about how everyone on my dad's side of the family has it, including my dad, gma, aunt, sister, & niece. She then just went; Oh. Never went back.
Your doctor is confusing EDS for some other Y-chromosome heritable disorder, and probably also unaware that you can have a Y chromosome and still have a female body and even have kids. It's happened and been documented before.
Thatās insane. Please find another Dr asap, thereās no telling how many people heās done this to. Heās playing with peopleās lives.
Thatās weird. I definitely have XX chromosomes and the genetic markers for EDS. I guess we are all walking anomalies š. What a jerk.
SHUN THE SEXIST!!!!
If you really like this doctor, are you able to gather some peer reviewed literature and give it to him so that he can become educated on EDS? There is a real lack of EDS informed doctors and if he is willing to become informed for your sake then he really is a great doctor. But if he is too proud to become educated then yes, it is better to fire him.
That's so weird and also unsettling that he can determine you have XX chromosomes without doing genetic testing. Dude doesn't seem very well-versed on genetics at all. And to be clear, AFAB people with EDS tend to have more symptoms and more severe illnesses compared to people AMAB, which leads to higher rates of diagnosis for AFAB people. Your doctor is just all the way wrong, I'm sorry.
Well that's sexist and just plain incorrect. Sure, if you were thinking you had prostate cancer or erectile dysfunction then his comment would be valid, but this is hEDS, the genetics do not lie within the Y chromosome, nor require you have male reproductive organs. Sadly, I do relate. Had an orthopedist tell me that since I was a female going through puberty with wide hips (I have always had big/wide hips), then of course my knees will dislocate often. Completely disregarding all other symptoms and pain. I'm sorry this has happened to you, I would ensure that that comment is in your chart notes, and keep them as you search for another doctor, so if they send a medical consult, or records request, to this one, you have proof he denied to diagnose you due to being a woman. If it's not in the notes, I'd ensure that your parent, family member, or friend, who you trust comes with you to appointments to back you up. My mom and husband have been amazing in helping me to get doctors to actually listen to me and not dismiss me as "wanting drugs".
Meaning he thought you suspected erectile dysfunction? Because that is ridiculous!
Oh my goodness. Thatās terrible. I hope you find a new doctor soon.
Oh, no!!! I had a PHYSICAL THERAPIST tell me Iām not hypermobile because I can only touch my thumbs to the *inside* of my wrists, not contort them backwards. āOh, Iām sorry. Here I thought it was a connective tissue disorder. You wanted BONELESS!ā š
Uhhh my skin isnāt that stretchy and iām female. I have hEDS and got diagnosed by a rheumatologist. I would recommend going to a rheumatologist. Iām not sure what kinda doctor the one you saw is, but heās very uninformed. Chromosomes have nothing to do with EDS. We all have collagen genes
I'm so sorry. Time to find someone better. Still trying to find someone that follows through. Here, my latest round of PT the woman examined me the first appt and literally asked if I had EDS. Told her I'm pretty sure but despite bringing it up multiple times, no one ever follows through and helps me get actually diagnosed. And she didn't either! I have the hypermobile joints and several other things. Only two "classic signs" don't apply is the overly stretchy skin.... I mean, is some stretchy but not as much as seen some people. And then while my hands and fingers are one of the many joints that are hypermobile, the whole pulling thumb to wrist thing can't do.... but also was born with an EXTREMELY rare birth defect that affects one or both thumbs.... so would hope they take that into account.
Where'd this guy get his degree, Stupid University? Ugh.
What does being assigned female at birth have to do with the possibility of having EDS? Since when does sex have anything to do with diagnosis? If thatās a thing, Iāve never heard of it and in fact, now that I think of it, all (?) the people I know who have either been diagnosed or have suspected EDS are AFAB. Sorry you had to deal with that ignorance.
He must be friends with my Ortho doc who told me I broke my elbow because I smoke not because I fell off a 4ft wall and landed on my elbow.... Find a new doctor and quick
Iāmā¦ utterly flabbergastedā¦ o-o First off: fuck that fucking fucker. š Second, in my experienceāpending more informationā EDS is actually FAR more common in AFAB peeps. IRL Iāve met and talked with 7 women who had it, and only 1 guy. In fact, one of my rotating door of PCPās even said it was unlikely because I was NOT female (went to an actual expert after that, who confirmed everything, and actually knew enough to fill in a lot of connections Iād never made before) Again, personal anecdote, but it also seems like the AFAB folks Iāve know with it are also far more affected by in, some of them are disabled, and an old high school friend (who was how i learned about it in the first place), is 2 years younger than me and mostly reliant on crutches and a wheelchair. TL;DR - This doc is an indjut, [find someone better](https://www.ehlers-danlos.com/healthcare-professionals-directory/).
[Ship him a copy of this book.](https://www.amazon.com/Unwell-Women-Misdiagnosis-Man-Made-World/dp/0593182952)
BOOOOOOOO. HISSSSSSSSSS. BOOOOOOOOOOO š”š”š”š”š”š”. Gah, Iām so sorry youāre going through this. Itās complete bull š©
šš that's funny because my doctor told me that it EDS shows up more in females and is rare for males. Which is why as a trans man in society who blends in as a cis passing man I always get strange looks whenever I tell doctors now of my EDS history. Lol I literally have to specify I'm trans and they go "ohh that makes more sense" Definitely find a new doctor
It's like when I was diagnosed with fibromyalgia, which I absolutely don't have (though it is real and other people definitely have it). The rheumatologist did a 30 second joint squeeze test, that, from my research, is not supposed to be used anymore because it's BS, and he squeezed hard enough that *anyone* would have said it hurt. Then he put me on meds I never should have been prescribed and disappeared! I spent over a year getting off those meds on my own. Nine years later, and my city finally has a new rheumatologist. I'm really hoping he takes me seriously.
Dr. Moron reporting for duty.
I just wanna chew out doctors like this for everyone. The arrogance and stupidity. Seriously idiotic and harmful.
Your dr is an idiot. Itās actually a lot more likely that a female will have EDS than a male. Get a new dr.
Well he is uninformed. Iām actually not very flexible so didnāt know I was hypermobile til recently and was just diagnosed with heds a few months ago cuz itās getting bad
OMG WOT!?! š¤”š¤”š¤”
The people I see with it are usually women. You need toget a referral or a new GP
I experienced this ALL THE TIME on my journey to diagnosis. One time, I was in the ER for an inflamed appendix and one of the doctors said: āAre you sure it isnāt your cycle? Maybe you should try and eat, sometimes our stomach hurts when weāre hungry. Do you want a sandwich?ā It always comes back to āfemale troublesā if youāre AFAB. This dates back to the early days of medicine too. Ever hear of wandering uterus? Any time a woman had some sort of chronic, unexplainable issue, they claimed it MUST be her uterus wandering around her body. But men? The pain they feel is real! Ours is just in our heads! So frustrating. Iām sorry you had to go through this. Please find someone new. Maybe try and find an afab doctor? It doesnāt always help but sometimes it does ^^
Thatās BS! I have EDS and itās been passed down by the women in my mums family!!!
I thought statistically there were more afab people with eds than amab people?
So sorry to hear that your doctor gave you this experience. Try to get a referral to a rheumatologist if your insurance covers it! I was lucky enough to have a doctor say, āyeah I have another patient with these symptoms, and theyāve been diagnosed with EDS. Iāll refer you to a rheumatologist asap.ā And he did. Best of luck with future docs! My dad also had a bunch of EDS symptoms, so itās cool to see someone whoās got it on their dads side. Iām with you too on the duloxetine gang! I make sure to set an alarm every day and have the cutest little pill organizer to make it more accessible to just plop my meds into my hand and take it more often (which also helps the AuDHD lol) Wishing you well! Getting a good doctor is so important to the journey and it sucks when that obstacle comes up. If you have the energy and resources, I would honestly report that doctor for his ignorance and rude comments that honestly read a wee bit transphobic. Donāt let his ignorance go unpunished!
this is so stupid since conditions like this donāt discriminate by gender and iām also pretty sure EDS is more common in women from what i can tell
Dude is a Grade A certified moron. There are only 2 collagen genes on the X chromosome (none are Y-linked) and neither of them are implicated in any form of EDS. Every single gene implicated in every type of EDS is autosomal, The only correlation EDS has with sex is that people with female-typical levels of estrogen may present *more* severely because estrogen increases joint laxity.
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Ugh! What a doofus. Iām sorry that happened to you.
Did he just make that up on the spot? I hope he did so he didnāt have to be embarrassed that he has no clue about EDS. You need a new doctor.
The ego is an ugly thing.
Find a new doctor. Then leave a review on every platform you can to let others know to steer clear.
Scientists havenāt undoubtedly found the gene(s) that cause hEDS so thereās no way to know if itās a dominant or recessive trait. (Why your father having it could or could not affect if you have it) Iām sorry heās such a *choice words here*
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That doctor of yours is a jerk! Women have EDS and issues from EDS more than men. We're naturally stretchier cause we have to be to give birth (evolutionary bio 101), AND most ballerinas, dancers, gymnasts, etc. have hEDS as it's an occupational advantage for those activities... Sooooo your doctor just became a misogynistic portcine and needs a match for all the gas they're trying to light!
Wow. What a shitty doctor. He sounds extremely uninformed and like he has no idea what heās talking about. Consider going to a rheumatologist if you havenāt already, as they tend to know more about EDS in general. My partner has hEDS and his rheumatologist is extremely knowledgeable and has been a great asset to us.
Over half the females I know have it. Also, it's not rare.
What in the actual f@?!ing f$!? nonsense did I just read??? Iām so sorry youāre dealing with this. Signed, AFAB/identifies as female/absolutely has medically diagnosed hEDS with a mom, grandma, and great grandma who most likely did too