An overwhelming 93% of women have felt dismissed when seeking medical help, according to a survey by FemTech World.
It’s frustrating—and honestly, unacceptable—that so many still face this kind of treatment.
Just take a look at Reddit, where women are speaking out about being ignored, misdiagnosed, or told their symptoms are “all in their head.” How many more experiences like these will it take before women are finally believed?
#1
The IUD won't hurt, it is just a pinch.
I vomited from the pain and passed out in my car right after.
IntoStarDust:
If you ever have to have a hysterectomy be prepared for the wire brush with no pain meds or numbing agents. That is brutal. So is having a biopsy done of your cervix or uterus. No pain meds back in my day. Women are made to suffer.
Monochromesong:
God I had a uterine biopsy done, and it is easily the worst pain I felt. I screamed even though it only lasted 10 seconds, the nurses let me rest in the room for as long as I needed to get my brain in working order to leave.
I cried in the car, I cried to my husband, and had a whole existential crisis LMAO that pain was no joke!!
I vomited from the pain and passed out in my car right after.
IntoStarDust:
If you ever have to have a hysterectomy be prepared for the wire brush with no pain meds or numbing agents. That is brutal. So is having a biopsy done of your cervix or uterus. No pain meds back in my day. Women are made to suffer.
Monochromesong:
God I had a uterine biopsy done, and it is easily the worst pain I felt. I screamed even though it only lasted 10 seconds, the nurses let me rest in the room for as long as I needed to get my brain in working order to leave.
I cried in the car, I cried to my husband, and had a whole existential crisis LMAO that pain was no joke!!
57points
#2
I had swelling under my chin and my doctor kept calling it a double chin and I would be like I’m not fat. I’m actually underweight why would I be accumulating fat in this specific place and he would say genetics. I asked a couple different doctors. They were very dismissive. Then one day, my mouth was really dry and I couldn’t swallow anything. I went to an urgent care and they x-rayed me. My chin swelling was actually a tumor on my sublingual salivary gland. I needed a major surgery to have it removed. It took 6 months to recovery. Keep advocating for yourself. Mine didn’t end up being cancerous, but what if I had just given up and thought oh I guess I just have some excess chin fat.
lemonlegs2:
12 years to finally get an x-ray confirming exactly what I'd been saying for all those 12 years- it feels like I have a broken bone in my back and the bones are rubbing together.
I was told I should just stretch more. Which is even more ridiculous seeing as I have hypermobile ehlers danlos and have always been insanely flexible.
lemonlegs2:
12 years to finally get an x-ray confirming exactly what I'd been saying for all those 12 years- it feels like I have a broken bone in my back and the bones are rubbing together.
I was told I should just stretch more. Which is even more ridiculous seeing as I have hypermobile ehlers danlos and have always been insanely flexible.
46points
#3
In 2012 I was in Walgreens, stepped on an eyeliner pencil that was laying in the floor and fell. I didn't think I was physically hurt at the time, but within a week, my lower back was k**ling me.
I went to my doctor, and he prescribed a muscle relaxer. This went on and on, and my back never got any better. If anything, it hurt more.
I went back to my doctor and explained to him that I didn't think my back pain was from my fall. I thought something else was going on.
He literally rolled his eyes and told me I fell and hurt my back. Nothing else was going on.
I went on to tell him that my dad had "hurt his back" and was being treated for that. Finally, after weeks of not improving, they did an MRI and found out it was actually an aneurysm. And, my sister was also treated for back pain after a fall, only to find out she had cancer.
He acted pissed off. Told me to not be a hypochondriac. This was the first time I had EVER complained about anything to him. He made me feel like I was stupid.
The very next day, I had a gynecologist appointment. She always would question me about my life, what was going on, etc..
She was a great doctor. ( has since retired). I told her about my back. She asked where it hurt, I told her, and she said it might be my kidneys.
She referred me to a urologist. I had " the biggest kidney stone he had ever seen". He told me it was blocking the entrance in my left kidney. He said if I had not came in when I did, I would have lost my kidney.
I fired my pc and told him why.
1127_and_Im_tired:
If you complain of pain and want relief, you're a drug seeking a****t. If you complain of pain and don't want to just be given meds, you're attention seeking. There's no winning with some doctors. Ugh.
I went to my doctor, and he prescribed a muscle relaxer. This went on and on, and my back never got any better. If anything, it hurt more.
I went back to my doctor and explained to him that I didn't think my back pain was from my fall. I thought something else was going on.
He literally rolled his eyes and told me I fell and hurt my back. Nothing else was going on.
I went on to tell him that my dad had "hurt his back" and was being treated for that. Finally, after weeks of not improving, they did an MRI and found out it was actually an aneurysm. And, my sister was also treated for back pain after a fall, only to find out she had cancer.
He acted pissed off. Told me to not be a hypochondriac. This was the first time I had EVER complained about anything to him. He made me feel like I was stupid.
The very next day, I had a gynecologist appointment. She always would question me about my life, what was going on, etc..
She was a great doctor. ( has since retired). I told her about my back. She asked where it hurt, I told her, and she said it might be my kidneys.
She referred me to a urologist. I had " the biggest kidney stone he had ever seen". He told me it was blocking the entrance in my left kidney. He said if I had not came in when I did, I would have lost my kidney.
I fired my pc and told him why.
1127_and_Im_tired:
If you complain of pain and want relief, you're a drug seeking a****t. If you complain of pain and don't want to just be given meds, you're attention seeking. There's no winning with some doctors. Ugh.
40points
#4
When I was 13 I suddenly got very clumsy and started tripping over nothing and everything. People chalked it up to puberty and my limbs growing-fair enough. A few months later I got severe constant vertigo along with vomiting. I was out of school for an entire semester because I couldn't walk a straight line without throwing up. Several different doctors were consulted and all came back with the diagnosis that I was a hysterical teenage girl and faking it to get out of going to school. Finally I saw an ENT who looked into my ear and discovered... nothing there. And I mean nothing; no ear drum, no inner ear bones, no tissue of any kind. It so happens that the case is Scarlet Fever I had the summer prior had eaten away everything and was still attempting to eat its way into my skull. I lost total hearing in that ear, as well as partial hearing in the other ear, because no doctor bothered to look into my ears when presented with an obvious case of inner ear trouble.
MOONWATCHER404:
So is your inner ear basically a direct hole into your skull? (If I may ask)
IcedMercury (OP):
They caught it before it breached the bone completely but basically my ear is just an empty tunnel that branches off at some point for about an inch toward the skull. I know the length because that side tunnel fills with wax and other gunk that has to be removed by an ENT every once in a while. But I don't know any more specifics on direction or placement inside my head as I've never seen it myself or asked my ENT to sketch it for me.
MOONWATCHER404:
So is your inner ear basically a direct hole into your skull? (If I may ask)
IcedMercury (OP):
They caught it before it breached the bone completely but basically my ear is just an empty tunnel that branches off at some point for about an inch toward the skull. I know the length because that side tunnel fills with wax and other gunk that has to be removed by an ENT every once in a while. But I don't know any more specifics on direction or placement inside my head as I've never seen it myself or asked my ENT to sketch it for me.
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37points
#5
"Looks like a minor infection, but since you're a lesbian and won't be having children we don't need to treat it."
Report
34points
#6
It took me over 5 years to be diagnosed with PCOS and endometriosis. I had horrible, painful periods, facial hair, and hit all the clinical markers—except I wasn’t overweight. Because of that, I was repeatedly told I “didn’t look like” I had PCOS and dismissed over and over again. Eventually, I convinced a doctor to scan my pelvis. It was textbook PCOS. I ended up needing surgery to remove a giant ovarian cyst, and during that, they discovered I had endometriosis too.
On top of that, I’m high risk for cervical cancer and need regular Pap smears and colposcopies to monitor it. I can honestly say it’s the most painful procedure I’ve ever experienced—and that includes getting an epidural too late and having a natural birth. Still, I haven’t been able to find a doctor willing to perform it under any kind of sedation or pain relief. I keep being told it’s “standard” and “not that bad,” even though it absolutely is.
So… not the same situation exactly, but I deeply feel the frustration and pain of being ignored or minimized.
Fluffy-lotus606:
My ex gave me hpv as an std and it turned into cervical. The colposcopies are absolutely awful. I told my gyno I bleed a lot and she didn’t listen and had to shove her hand up there for 20 minutes after I bled all over the table and floor and everything. I also have PCOS, spent thousands on laser hair removal, etc but I think PCOS also makes you more susceptible to hpv turning into cancer. I have two female cousins on the same side that my grandmother died of ovarian cancer and all three of us have PCOS and have had cervical cancer with super early diagnosis on the lesions because we knew we were high risk.
On top of that, I’m high risk for cervical cancer and need regular Pap smears and colposcopies to monitor it. I can honestly say it’s the most painful procedure I’ve ever experienced—and that includes getting an epidural too late and having a natural birth. Still, I haven’t been able to find a doctor willing to perform it under any kind of sedation or pain relief. I keep being told it’s “standard” and “not that bad,” even though it absolutely is.
So… not the same situation exactly, but I deeply feel the frustration and pain of being ignored or minimized.
Fluffy-lotus606:
My ex gave me hpv as an std and it turned into cervical. The colposcopies are absolutely awful. I told my gyno I bleed a lot and she didn’t listen and had to shove her hand up there for 20 minutes after I bled all over the table and floor and everything. I also have PCOS, spent thousands on laser hair removal, etc but I think PCOS also makes you more susceptible to hpv turning into cancer. I have two female cousins on the same side that my grandmother died of ovarian cancer and all three of us have PCOS and have had cervical cancer with super early diagnosis on the lesions because we knew we were high risk.
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33points
#7
I went to the doctor for extreme abdominal pain, so bad that I could barely walk and had to stop working. They insisted it was lactose intolerance and I was just being dramatic about the pain. I am lactose intolerant, but it doesn't cause pain anywhere near that bad.
Turns out it was appendicitis and I had to be rushed into emergency surgery because I waited so long to go the hospital. The ER doc diagnosed me in 2 seconds after hearing my symptoms which were "classic appendicitis" signs.
LewsTherinIsMine:
When I had appendicitis I had all of the classic signs but had to wait for hours because the ER doctor said I didn’t “look like an appendix patient”.
Turns out it was appendicitis and I had to be rushed into emergency surgery because I waited so long to go the hospital. The ER doc diagnosed me in 2 seconds after hearing my symptoms which were "classic appendicitis" signs.
LewsTherinIsMine:
When I had appendicitis I had all of the classic signs but had to wait for hours because the ER doctor said I didn’t “look like an appendix patient”.
31points
#8
I am a husband who has to go into the doctor with my non-native English speaking wife, or everything will be ignored.
Not joking. The ER will actually do proper care, but general practitioners and even the specialist we’ve seen just ignore her. If I’m there at least I can push them a bit.
Least-City2300:
I brought my male cousin to a doctor’s appointment once and introduced him as my fiance.
I talked to my cousin in advance and told him I was having a 9 month long problem and was trying to get a dr to listen to me. He didn’t get why a dr wouldn’t—as a lot of men don’t—but agreed to the ruse. Once we got to the medical building, he even asked again, “you still want me to go into the exam room with you?” I said yes. I need a dr to do their job.
In the exam room: I explained everything—the dr actually let me explain everything without cutting me off for once—but he was still ready to dismiss it.
Keep in mind-I’m sitting on the exam table, my cousin is sitting in the chair, and the doctor is standing by the door. My cousin hadn’t heard all of it, pain and suffering, symptoms, etc before until I was talking to the doctor, who never looked up from the folder. My cousin looked like he was either going to faint or vomit.
Once I finished talking, and the doctor was dismissing it and about to walk out, my cousin asked “you’re not even going to examine her? After hearing all that?”
The dr said I don’t think “it’s necessary”. My cousin just looked at him and said, ‘Well I do. “
The dr said “everything she described sounds like something very common. I’ll prescribe her something”.
My cousin asked, “how are you going to prescribe her something when you don’t know what’s wrong? You literally haven’t touched her!
There was a pause.
Luckily my cousin doubled down and say “This is the woman I’m going to marry. The last 9 months she has not been herself, in constant pain. You do your job or we’ll wait here for another dr to finish up and get him to do it.” (FYI-my cousin and I grew up together, closer than siblings, so he did know something was definitely off with me for most of the year)
The dr walked out. My cousin went in search of another dr. I heard him coming back down the hallway saying “we’re not paying a bill until someone pays attention to her and actually treats her”
The dr he found actually walked in the room and started examining me…feeling my throat, neck, using his stethoscope. Dr never ordered any tests though. I ended up having to find a doctor in another state who gave a s***t.
The whole experience had a Profound impact on my cousin. When he married his wife, and she started having medical concerns, he went to every appointment with her. He Became Her Advocate.
Not joking. The ER will actually do proper care, but general practitioners and even the specialist we’ve seen just ignore her. If I’m there at least I can push them a bit.
Least-City2300:
I brought my male cousin to a doctor’s appointment once and introduced him as my fiance.
I talked to my cousin in advance and told him I was having a 9 month long problem and was trying to get a dr to listen to me. He didn’t get why a dr wouldn’t—as a lot of men don’t—but agreed to the ruse. Once we got to the medical building, he even asked again, “you still want me to go into the exam room with you?” I said yes. I need a dr to do their job.
In the exam room: I explained everything—the dr actually let me explain everything without cutting me off for once—but he was still ready to dismiss it.
Keep in mind-I’m sitting on the exam table, my cousin is sitting in the chair, and the doctor is standing by the door. My cousin hadn’t heard all of it, pain and suffering, symptoms, etc before until I was talking to the doctor, who never looked up from the folder. My cousin looked like he was either going to faint or vomit.
Once I finished talking, and the doctor was dismissing it and about to walk out, my cousin asked “you’re not even going to examine her? After hearing all that?”
The dr said I don’t think “it’s necessary”. My cousin just looked at him and said, ‘Well I do. “
The dr said “everything she described sounds like something very common. I’ll prescribe her something”.
My cousin asked, “how are you going to prescribe her something when you don’t know what’s wrong? You literally haven’t touched her!
There was a pause.
Luckily my cousin doubled down and say “This is the woman I’m going to marry. The last 9 months she has not been herself, in constant pain. You do your job or we’ll wait here for another dr to finish up and get him to do it.” (FYI-my cousin and I grew up together, closer than siblings, so he did know something was definitely off with me for most of the year)
The dr walked out. My cousin went in search of another dr. I heard him coming back down the hallway saying “we’re not paying a bill until someone pays attention to her and actually treats her”
The dr he found actually walked in the room and started examining me…feeling my throat, neck, using his stethoscope. Dr never ordered any tests though. I ended up having to find a doctor in another state who gave a s***t.
The whole experience had a Profound impact on my cousin. When he married his wife, and she started having medical concerns, he went to every appointment with her. He Became Her Advocate.
31points
#9
I had stage 3 endometriosis and infertility because of it, and had to advocate for myself for years. Was constantly being told, by women doctors, everyone had difficult periods.
Charming_Garbage_161:
I honestly ignored my symptoms bc of stigma about periods. I had stage 3 endo and got a hysterectomy a few years ago. When I first walked into the specialist clinic the lady told me she’d check my pelvic floor real quick to see how bad it is. I have never before or since immediately screamed at someone and scooted away. I am still convinced she did something to make it hurt worse so I could get my hysterectomy through insurance.
Charming_Garbage_161:
I honestly ignored my symptoms bc of stigma about periods. I had stage 3 endo and got a hysterectomy a few years ago. When I first walked into the specialist clinic the lady told me she’d check my pelvic floor real quick to see how bad it is. I have never before or since immediately screamed at someone and scooted away. I am still convinced she did something to make it hurt worse so I could get my hysterectomy through insurance.
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30points
#10
I had a low grade fever for about a month straight and decided to go to the ER. One of the first questions the doctor asked is if I have an STD or if there’s any chance my partner at the time was fooling around. I answered no.
The doctor ended up running a full STD panel before giving me an IV. He eventually sent me home with instructions to take Tylenol to lower my fever.
Ended up being an autoimmune disease 🤦🏻♀️.
book_of_black_dreams:
I also had a doctor run an STD panel on me without my consent as an 18 year old with no s*xual history. Ended up getting a false positive and having unnecessary testing done, which was f**ked up because I already had medical PTSD and it was difficult to do even routine labs. I actually reported her and the state medical board refused to take any action.
The doctor ended up running a full STD panel before giving me an IV. He eventually sent me home with instructions to take Tylenol to lower my fever.
Ended up being an autoimmune disease 🤦🏻♀️.
book_of_black_dreams:
I also had a doctor run an STD panel on me without my consent as an 18 year old with no s*xual history. Ended up getting a false positive and having unnecessary testing done, which was f**ked up because I already had medical PTSD and it was difficult to do even routine labs. I actually reported her and the state medical board refused to take any action.
26points
#11
Months of feeling off, coming off the back of a cold , turned into chronic night sweats , ab pain, fatigue …. Docs just told me to take antibiotics , i was probably perimenopausal. I’m “fit and healthy at 39 and haven’t ever been to see them in 8 years”. Rash and swollen lymph node popped up and they didn’t deem it relevant to see me in person “just send photos”. When I complained they agreed to see me but just gave me a different antibiotic and stronger antihistamine.
Pushed for bloods finally and saw his face drop the day they came in. Even then , I had to wait for a referral … and during that week I was in and out of A&E with them also dismissing my pain , till a female doc ordered a CT and that’s when they saw everything lit up.
Still took another week and a half on top of that to get my diagnosis (cultures , biopsies etc) : cancer. Hodgkin’s lymphoma stage 4.
But ye know, I didn’t fit any of the criteria for that … so if I hadn’t been in agony and off to A&E…. F**k knows what state id have been in waiting for that haematology referral.
cingalls:
I’m not a doctor but I read a lot of medical science books and before the end of your first sentence I knew you were going to say Hodgkin lymphoma. Your doctor was a flicking moron for not immediately testing.
Pushed for bloods finally and saw his face drop the day they came in. Even then , I had to wait for a referral … and during that week I was in and out of A&E with them also dismissing my pain , till a female doc ordered a CT and that’s when they saw everything lit up.
Still took another week and a half on top of that to get my diagnosis (cultures , biopsies etc) : cancer. Hodgkin’s lymphoma stage 4.
But ye know, I didn’t fit any of the criteria for that … so if I hadn’t been in agony and off to A&E…. F**k knows what state id have been in waiting for that haematology referral.
cingalls:
I’m not a doctor but I read a lot of medical science books and before the end of your first sentence I knew you were going to say Hodgkin lymphoma. Your doctor was a flicking moron for not immediately testing.
25points
#12
I was ill for a decade. All I heard is that I was overweight by 20-40lbs, when I lost that weight they said it must be anxiety. I kept trying even though everyone in my life thought it was in my head. Finally my liver enzymes got high enough in some blood work and they discovered a tumor half the size of my liver. They removed it along with a third of my liver. Turns out your liver is hella important! The surgery left me with type 1 diabetes and crazy scars. But I’m still here 9 years later and that in itself is a victory!
25points
#13
Not quite on topic but related: When I was younger, my body was resistant to local anesthesia and required double the normal dose for the same effect. I was facing serious cervical cancer issues at the time, and my male doc thought I was lying about my resistance or he didn't want to dish out $ for it. He performed a LEEP biopsy on my cervix -- which uses electricity to slice a piece off! I could feel everything and arched my back and screamed from the pain. The nurse had to use alcohol wipes under my nose to keep me from fainting. Afterwards, he called me a baby.
24points
#14
If psychiatrists count, my ADHD was dismissed as depression to the point I did develop depression because of how badly I was failing school. My ADHD is severe and it was to a point I could hardly do addition anymore because my mind genuinely wouldn't stay still. I was exhausted constantly, I tried to end my life over it. They put me on bipolar medication that caused me to have tics for about a week until I stopped taking them. Finally, I was tested and put on proper medication. I'm now in a special needs school and top of my class. And math is my best subject. I just wish they didn't keep dismissing me because "several teenage girls have depression, it's probably what you have too." I was at a 2nd-grade reading level in sixth grade. Years of my life wasted thinking I was just stupid and beyond repair because they refuse to believe anybody besides 7 year old boys can have ADHD.
23points
#15
Not me, but my mother in law. She was having back surgery and didn’t really know how to explain things or what to expect. I went with her to her appointment. First, we waited 2 hours for her doctor. He was a jerk. Very full of himself. He tried to rush us, but I had questions. He was so mad and red by the time he was done, I told him waiting two hours to see him didn’t mean we were gonna be cut short.
23points
#16
I've had many, but a friend is having an experience that is heartbreaking. She was suffering severe back pain, with the doctor dismissing it and telling her it would get better, that she probably just needed to lose some weight. She came back some time later with even more unbearable pain. They finally do scans this time and find cancerous tumors that have metasticized. The doctors say it's too late, can't help her. She has about a couple of weeks left to live right now.
21points
#17
Had a doctor tell me to rub vitamin E oil on my breast for a breast mass. I had stage 2 breast cancer with spread to my lymph nodes at 34 years old.
21points
#18
My wife has dealt with chronic pain and fatigue for nearly a decade. Doctors just write her off and don't really try tu help. She's been to every specialist in the tri-state area.
About 2 years ago, I finally started going with her. She said the attention she receives when I'm with her is like night and day. They haven't solved the issues but they take her seriously when I'm just in the room.
The doctors instinctively look at and talk to me. And I just tell them 'she's the patient. Not me. Talk to her".
About 2 years ago, I finally started going with her. She said the attention she receives when I'm with her is like night and day. They haven't solved the issues but they take her seriously when I'm just in the room.
The doctors instinctively look at and talk to me. And I just tell them 'she's the patient. Not me. Talk to her".
20points
#19
He listens to me now because I’ve proven that I’m well informed. But I have an autoimmune condition that impacts my thyroid. I could tell when things were off and which way I had swung (hyper vs hypo). The first few appointments he’d suggest that maybe my perception was opposite the situation, but I kept getting it right. Now I basically inform him how I plan to change meds if my labs are off. When we have chronic conditions we so often become the expert.
MC-ClapYoHandzz:
I have hashimotos and it took roughly 5 years and 4 docs to be diagnosed. On the cusp of hypo every blood test but had all the symptoms - fatigue, difficulty losing weight, always cold, MASSIVE freaking goiter and multiple nodules. It'd be considered hypo now a days with updated ranges. Always asked about hashis but was told my labs were "fine". Never any resolution. Why did I have a goiter? "Sometimes that just happens." Okie doke.
A new endo came in and ran a tpo test - the test for hashis. Mine was over 100 when it should be less than 35. Never been tested in all those years, even when I specifically asked about it. By this point the goiter was large enough, my entire thyroid had to be surgically removed. Absolutely no reason it should've taken 5 years to run a single blood test.
MC-ClapYoHandzz:
I have hashimotos and it took roughly 5 years and 4 docs to be diagnosed. On the cusp of hypo every blood test but had all the symptoms - fatigue, difficulty losing weight, always cold, MASSIVE freaking goiter and multiple nodules. It'd be considered hypo now a days with updated ranges. Always asked about hashis but was told my labs were "fine". Never any resolution. Why did I have a goiter? "Sometimes that just happens." Okie doke.
A new endo came in and ran a tpo test - the test for hashis. Mine was over 100 when it should be less than 35. Never been tested in all those years, even when I specifically asked about it. By this point the goiter was large enough, my entire thyroid had to be surgically removed. Absolutely no reason it should've taken 5 years to run a single blood test.
19points
#20
I had strange scary symptoms that started when I became an adult after being a fairly healthy child.
Got dismissed for 7 years being told:
"Women are all crazy and can't handle stress!"
"It's all in your head."
"You are young so just deal with it."
"You just don't want to get better."
"I see patients worse off then you so don't come back."
Finally found a Doctor who listened and truly cared and promised to do everything in his power to help me.
Got diagnosed with Ehlers-Danlos Syndrome shortly after.
I hate that it took so long to get an answer and I was really scared the entire time thinking that I might be slowly dying.
DorianPavass:
It took both spinal and internal complications until someone would actually write it down. I had years of soft diagnoses where docs would say "well I think it's EDS but I wasn't trained on that so I'm not comfortable diagnosing it, you need a specialist."
Insurance wouldn't cover the specialist until someone diagnosed me. Which didn't happen until I had an incomplete spinal cord injury (spines don't like being wiggly), sepsis from a bulging organ getting randomly infected, and misdiagnosis of some weird malformation of my liver than made them think I had a fatal disease that I didn't.
All while still a teenager. Then and only then, did someone at a teaching hospital have the balls to write it down.
This was all just before the medical world realized it's not actually a rare disease. They were just doing the equivalent of only calling crushed bones 'broken', and telling the person with a snapped in half bone that they're dramatic, and telling the one with a bad crack that they need intense mental health for their hysteria.
I still can't get the insurance to cover a geneticist to find out if I have mild vascular EDS (likely) or severe hEDS. Because vEDS is rare and insurance refuses to acknowledge my own personal risks. They only care that it's very rare, and it's probably hEDS based on statistics, so they don't want to pay for it. It's been 8 years trying to get it covered.
I'd really like to know considering the lifespan difference.......
Got dismissed for 7 years being told:
"Women are all crazy and can't handle stress!"
"It's all in your head."
"You are young so just deal with it."
"You just don't want to get better."
"I see patients worse off then you so don't come back."
Finally found a Doctor who listened and truly cared and promised to do everything in his power to help me.
Got diagnosed with Ehlers-Danlos Syndrome shortly after.
I hate that it took so long to get an answer and I was really scared the entire time thinking that I might be slowly dying.
DorianPavass:
It took both spinal and internal complications until someone would actually write it down. I had years of soft diagnoses where docs would say "well I think it's EDS but I wasn't trained on that so I'm not comfortable diagnosing it, you need a specialist."
Insurance wouldn't cover the specialist until someone diagnosed me. Which didn't happen until I had an incomplete spinal cord injury (spines don't like being wiggly), sepsis from a bulging organ getting randomly infected, and misdiagnosis of some weird malformation of my liver than made them think I had a fatal disease that I didn't.
All while still a teenager. Then and only then, did someone at a teaching hospital have the balls to write it down.
This was all just before the medical world realized it's not actually a rare disease. They were just doing the equivalent of only calling crushed bones 'broken', and telling the person with a snapped in half bone that they're dramatic, and telling the one with a bad crack that they need intense mental health for their hysteria.
I still can't get the insurance to cover a geneticist to find out if I have mild vascular EDS (likely) or severe hEDS. Because vEDS is rare and insurance refuses to acknowledge my own personal risks. They only care that it's very rare, and it's probably hEDS based on statistics, so they don't want to pay for it. It's been 8 years trying to get it covered.
I'd really like to know considering the lifespan difference.......
19points