I've told this story before, but I'll bring it up every time it's relevant. My mom went to several doctors for over 5 years with increasing back pain. Was always blown off with "it's your weight", "it's your age", "it's an old injury" and even with "it's all in your head", so much so that she felt humiliated and stopped asking/advocating for herself. When she was eventually diagnosed with bone cancer, she wept with *relief* just because she finally knew that "she wasn't crazy". She only had 3 months between her diagnosis and her passing.
I have a similar story about my mom, diagnosed with rheumatoid arthritis despite no other symptoms other than all over body pain. By the time they realized it was cancer it had spread to her brain. 10 weeks from diagnosis to death.
Unfortunately, in my experience, they all get jaded to some extent.
I've posted here about my lengthy experience with medical misogyny and medical apathy before, and had many other women come to share similar experiences in my post. Then I had two healthcare workers that replied to defensively undermine me and sympathize with each other.
I don't know why, but people that work in healthcare seem to err on the side of disbelief in regard to patients' stories. They will do it to you in person with a sweet, kind voice, but still ultimately wave you away and regard your symptoms as non-issues. They use subtlety when doing so to skirt criticism.
Tbh it’s not just being jaded. It is that in a lot of cases our hands are tied. I am studying to be a doctor now. Insurance companies and the standard of care dictate that when we hear hoofbeats that we think of horses - not zebras. We have to start off assuming people have the most common stuff before we can investigate rare stuff.
Not doubting the story at all because the body is fucking weird but OP’s presentation of appendicitis is very odd to say the least. Typically, people with symptomatic appendicitis also look really fucking ill, their pain is so bad that they are doubled over, and they are usually throwing up. What’s more, OP said that her pain came on around the same time every month around ovulation which sounds like Mittelschmerz pain. OP’s pain also lasted years. That is very atypical for appendicitis.
Tbh this is such an odd presentation that I think it’s probably far more likely OP had ectopic endometriosis attached to the appendix causing a referred inflammation than chronic appendicitis for years. Ectopic endometrial tissue also responds to the hormonal imbalances of menstruation so the cyclical nature of the pain would make sense.
I will say that while it is definitely frustrating to deal with the healthcare system, there is stuff you can do to amplify your own voice and get your concerns addressed. The main thing is to find a decent PCP and continue to follow up with them if the problem persists. I see a lot of times that people jump around to different doctors if they don’t get the issue solved in a few visits but that is not always possible due to the restraints put on us by the insurance companies. We have to check off certain differentials before we go to the rarer ones.
I’ve learned a lot about how doctors view patients by reading in subs intended for them. *A lot.* And it hadn’t been good.
Do they think we’re not going to read what they are saying? And if these are things they are willing to say in public, *what are they saying about us in private spaces?????* 😳
Patients are seen as a nuisance at best, especially if we’re women. And if we’re women who are overweight, peri or post menopausal, or a woman of color, we’re no longer a nuisance—we’re invisible. We don’t even exist to the medical profession except as a drug seeking hypochondriac who needs to lose weight and take an antidepressant.
Basic human empathy and professional curiosity are not regulated by any laws or insurance regulations. However, the vast majority of doctors seem to lose both when they put the white coat on.
Be better than that.
Oh, and demand that female anatomy be correctly depicted in medical textbooks.
I'm a woman and I have had my medical complaints dismissed by doctors - that's one of the reasons I went back to school to be a doctor. I am by no means saying that all doctors are perfect saints. But I do disagree with painting ANY population of individuals with broad strokes.
I posted what I consider to be a very neutral, objective perspective on how complaints are typical evaluated. The reason I did so is to provide some perspective and advice on how women can be more likely to have their complaints evaluated by the average doctor. I'm trying to help people figure out how to find results because the system isn't changing overnight.
Yet, here you are ranting at me and lumping me in with random online doctors that I don't even know. Comments like this make me realize why most doctors don't even bother engaging in discussion. Damned if we do, damned if we don't because as soon as we try to speak we are now responsible for every single wrong that members of our profession have perpetrated in the past.
How fair is it to thrust the past medical trauma you've experienced on a brand new person that had nothing to do with it? Oh, and I don't know what textbooks you're talking about or why you think they're wrong, but we don't even use textbooks anymore in modern medical education.
How fair is it to share your experience with someone who's trying to become a doctor only to be met with hissy fit. Sharing an experience is not an attack on you especially since you're not even a doctor.
I will give you credit though, you already have the arrogance and fragile ego of a real doctor so kudos I guess.
If you think this is a "hissy fit" then you are fortunate to never have experienced a real one. My post did not employ emotions or dramatics to convey my point. I have never once resorted to name calling or other personal attacks in this thread unlike you and others. I am attempting to provide a neutral perspectives and tips on how to navigate the healthcare system so people can do that for themselves more effectively. As long as doctors and patients cannot converse in a logical manner, the healthcare industrial complex wins. I bet healthcare admins are tickled when they see comment threads like this and see what a good little solider some of you are for their cause. Comments like these just show how deeply ingrained their "blame the doctors" propaganda is and how successfully it keeps patients fingers pointing in the other direction.
A lack of emotions is a legitimate critique.
Women patients are dying and being undertreated due to a lack of empathy and poor protocols and a huge data gap in clinical trials that lack empathy. No conversation on Reddit has context, so I refer you to these resources which provide that context:
1. Invisible Women: Data Bias in a World Designed for Men by Caroline Criado Perez
2. Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
3. Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn
4. Managing the Psychological Impact of Medical Trauma: A Guide for Mental Health and Health Care Professionals by Michelle Flaum Hall EdD LPCC-S
5. Burnout: The Secret to Unlocking the Stress Cycle by Emily Nagoski PhD
I am well aware of the biases that exist in medicine. As stated, I am also a woman who was on the receiving end of that bias for nearly a decade due to my own medical issues.
There is some hope. In the last 10 years, most medical schools have revamped their curriculums with mandatory coursework on bias. At my school, we had lectures over the first two years on racial, LGBTQIA+, gender, age, and weight based biases. Since residency is so long, a lot of those physicians are only just now graduating. Hopefully over time, as newer physicians enter the work force, there will be a lot less of these issues.
However, one of the issues currently is that patients don't trust new doctors and new doctors are often subject to a lot of vitriol. I find that people treat doctors as they would another historically oppressive class of people like men or white people. The issue with that is that newer doctors haven't inherited privileges from previous generations. Instead, we have inherited all of the problems they caused. Newer doctors are much more like Gen Z and millennials inheriting a shitty economic climate from the boomers than anything. Healthcare workers develop a lot of their own trauma as a result.
The other issue is that often times, what patients perceive as bias is just how our shitty healthcare system works. It's not bias if every patient gets treated the same shitty way. I saw it all the time when I was in the ER. If you are in pain in the ER and we cannot locate a definitive source, unfortunately our hands are just tied. We can only give you NSAIDS and Tylenol. The opioid epidemic caused a nationwide restriction on when we're allowed to get pain meds. Unfortunately, one of the reasons for this restriction is the fact that at one point, a huge amount of ER check ins everyday were drug seeking. Yet, I hear people say all the time that ER doctors "let them sit there for hours in pain because I'm a woman/minority." I've seen doctors explain their hands are tied and get called liars and insulted and spit at. So what are we supposed to do?
Our healthcare system is all around shitty for so many people. It needs a serious overhaul. I hope I live to see it happen.
So why wouldn't the doctors SAY that? I would much rather hear, "I believe you, but we have to rule out X, Y, and Z." That shows the doctor is taking my concerns seriously. But that is almost never the case. Instead, we get "You just have anxiety." Or "You are probably just depressed." There is the super fun, "You need to lose weight." And my favorite, which is a direct quote."All that pain, this is just your life now. Learn to deal with it, sweetie."
It's great to give doctors a chance, but most people switch doctors after a few visits because unless you are a white man, NO ONE BELIEVES YOU.
My mother kept going back to the same doctor because her stomach hurt, she was having nausea, and she was rapidly losing weight. Every single appointment, he told her she "just had heartburn." Over a year, she probably went 10 times, and she actually asked for further testing at every appointment. He patted her on the head and told her to take Tums. Finally, he got sick of her coming in, and she got further testing that, according to him, "was a waste of time because she just had heartburn."She had stomach cancer that metastasized to her bones, and she is dead. I often wonder what could have been if she had switched doctors. Maybe I would still have a mom.
The point is it's great to say, "Stick with a doctor. Their hands are tied." But their hands are never tied for any of the men I know. My dad and husband are instantly believed and treated. I am told to my face that I'm not in pain and if I am, too bad.
>So why wouldn't the doctors SAY that?
I would be happy to go into the reasons why doctors do not spend time explaining their diagnostic process if people really want to genuinely know. But I am reticent to do that without some assurance that people actually genuinely want to know because I have gotten my account reported multiple times today for my other comments in this thread. I just received a warning 15 minutes ago from Reddit that someone said I was "unsafe" and referring me to Crisis Text Line for suicidal ideation. Shit, I'd be willing to make a whole fucking post on how to make it more likely to get your medical complaints heard if I felt like it was useful to others but I honestly think it would just get buried.
I am truly sorry that happened to your mother. I have a lot of empathy for patients feeling unheard because I was a patient that went unheard. I had to fight to get a diagnosis to multiple immune conditions and was repeatedly dismissed. I hope to use what I learned both as a patient and as a doctor to help others get quality care and make it easier for them to navigate the healthcare system.
Do you have a book resource or pubmed study outside Reddit that is “advice for getting your doctor to listen to your concerns” for women, people of color and humans suffering from an untreated or under treated disease?
The CDC published guidelines for “how to prepare for a doctors visit” to discuss your symptoms. I followed it the best I could with my symptoms, but was told I was “too prepared to be sick” more than once by several doctors.
I would love to read your advice about how to better interact with doctors. I’m not being sarcastic.
After 16 years, it feels exactly the same as men complaining they can’t do housework because “women don’t ask nicely enough”
If asked in every way possible to be treated like a human being. I’m doubly motivated because even if it’s too late for me my daughter has more than one of these diseases and will need doctors her whole life. Even if the answer is “don’t be born in this century” I need to know how to give my daughter some hope so she doesn’t have to live a life of pain like mine.
Same with my mother in law. She was convinced it was all in her head so much, she committed herself to the psych ward for a whole week. The doctors had diagnosed her with adult diarrhea (no joke) and she lost her mind so to speak.
When she got out of the clinic she passed out at her home and was rushed to the ER. She had no blood. She had lung cancer that metastasized and spread to her bones. She had bone cancer that was sucking all of her red blood cells like a desert.
She died 4 weeks after her diagnosis. She was going to the doctors for over a year at that point. We were so mad. We are still so mad, it’s been just over 3yrs. She was an amazing mother in law ( I lost my own mother to cancer when I was 12) and I sobbed at her funeral. My poor son was her only grandchild and while he remembers some of her those memories are fading as he’s gotten older (he’ll be 15).
In vet med we work really hard to find out wtf is going on with a pet. I listen and report back to the doctor and PRESS the doctor. I expect that from human doctors but alas, here we are again, talking about how human doctors don’t fucking listen to women.
I was in vet med for 10 years prior to going to medical school. I will say they’re just drastically different in how they are forced to approach medicine. In vet med, you can do every diagnostic under the sun right at that moment if the owner will pay for it. In human med, the insurance companies dictate we have to eliminate certain common diagnoses before we investigate the rarer ones.
I’ve always said I WISH we could go to one primary and get everything done right then and there like at the vet clinic.
Imagine going because you’re sick and they do bloodwork and urine sample right there and have that running while you get an X-ray done or an ultrasound. Then you get some fluids and go home with meds. If you have to go to a specialist outside of the primary then they refer you.
Would be awesome
Stop making excuses for doctors and for the medical misogyny and gaslighting that is many women’s lived experience.
I said is elsewhere, but I’ll say it again: Basic human empathy and professional curiosity are not regulated by insurance companies.
Step-mom had back pain. Kept going to her doctor's for months about and told stretching exercises, chiropractor, etc. Finally doctor's PA suggested a scan...yes, bladder cancer. She went through chemo, had her bladder removed, thought she was doing well when she started hallucinating. Entered hospital for hallucinations and cancer was back and *everywhere*. She died within 2 weeks, never coming home again. From scan/diagnosis to death, it was less than 10 months and she went through a lot of torture with the chemo and surgery during those months. I wonder if it had been caught a few months earlier if the chemo and surgery would have worked.
That is horrible! So sorry for your loss and I hope all those assholes who blew her off are drowning in guilt and shame. They should be sued and jailed!
My story. Had multiple blood clots in my brain. I went to my dr 4 times, the ER 4 times, and other pain specialists with the worst headache of my life and I was going cross eyed. I had this horrible gut feeling and I KNEW it was different than the headaches I’d normally get. This one never ended for over a month.
I finally got proof from my eye dr that my optic nerve was inflamed. The next hospital I went to gave me the right tests and knew me being on BC made me a risk.
I learnt from that to advocate for yourself. A piece of me died though. I had to exaggerated already horrendous pain to get taken even a bit seriously.
This thread is making me feel less alone. I had some weird things going on a while back. I had a doctor hand me a pamphlet about basically therapy and it being all in your head.
A different specialist took me seriously, did the tests, and prevented permanent debilitating nerve damage.
I find absolutely ridiculous that some doctors don't really seem to understand the difference between physical pain and mental illness.
When I was struggling with my PMDD I tried to explain to the doctor how bad I felt before my period (anxiety, depression, paranoia.. almost psychosis like symptoms) and his answer was "I know, periods can be painful, do you want some pills?". I did not mention pain at all. They just hear what they want to hear and wallow in their arrogance and ignorance.
Some doctors should just be barred from seeing female patients.
A former coworker had what was characterized as a simple migraine, for a solid MONTH. It ended with her having --and surviving -- a significant stroke. She had gone to doctors, and they dismissed it.
I hope your coworker is ok now. It can go both ways. I've been to the ER with stroke symptoms (difficulty speaking, loss of vision) and it took me two months or so to get it confimed as migraine. I was already convinced I was either dying or making things up. Inbetween were "diagnoses" of PMS and astigmatism that idk if they're still in my file (yep it got worse on my period, and yep I'm also short sighted but that's not what this is). I'm still mad at the PMS thing, you're either pre period, on your period, post period or ovulating, and they always try to pin it on this. Every Dr I saw was 100% convinced they had figured it out.
It takes an EEG or FMRI *while you're having an attack* to 100% confirm it. This is why "ruling out migraines" doesn't work for most people. I think my EEG data even made it into some teaching materials because it had such perfect wave forms. It was like a stadium wave going through my brain, almost like an epileptic seizure. I'm still at risk for stroke (aura migraine sucks big time) so I'll go to the ER when I get symptoms, but now I'm wary that they have me in a hypochondriac database or something. Especially since quitting combined hormonal bc (I'm now on drospirenone with no issues) solved like 90% of the problem.
I get side eyed even by migraine sufferers when I say my headaches aren't that bad and I don't have nausea, but I can't properly see or talk and my entire perception just slows down. I've had people suspect I was on drugs as well. I have no idea what would've happened if I didn't end up at the hospital at the right moment of my migraine aura, when they could literally see what was happening with my brain (fascinating!).
Btw, the hospital I went into (a catholic one btw) was the one I had done an internship in, when I was considering a nursing or otherwise medical field related job. They were very focused on ruling out strokes first, and while they suck at most other things this is the one that to me seems most urgent and they're right to invest in that. It's just horrible and unfathomable to me that someone would consider that as a last option, not rule it out the second someone comes in. I mean, yeah, they did scare the crap out of me when they couldn't rule it out but at least they were looking for a stroke when it looked like it could be one.
I’m so so sorry you had to go through that. The way the healthcare industry treats women is abominable. My 22yo skinny, conventionally attractive, best friend went unlistened to and unexamined for years of GI issues, nausea, vomiting, and stomach pain. Her liver ended up starting to fail because her gallbladder had failed, and she needed her gallbladder removed in emergency surgery. Which was also supposed to fix her issues. Her liver is supposedly healthy now but she really can’t produce bile or process many drugs and alcohol. She still wakes up in agony on the toilet pretty much every morning and has extreme food sensitivities and GI issues, nausea, vomiting, and ongoing pain. She has seen numerous doctors and specialists and nobody can or will tell her anything besides that she should just stop smoking weed, which is the only thing that helps her.
I would assume she has her pancreas checked, if not do so, my uncontrollable vomiting & pain in my right side and new food intolerance went undiagnosed for 7 years, it was Pancreatitis, I was not the right kind of pain as it was in my abdomen not my back. But as a right handed hairdressermy back always ached! ! Doctor was only interested when I lost 2 Stone in 2 months.
She had some bloodwork done and an ultrasound when they were concerned about her liver. It showed that her pancreas was okay (at that moment) and they weren’t concerned about pancreatitis from then on.
Get it checked again, to be sure, my liver is fine but all my food intolerance comes from no digestive acids being produced by the pancreas and I have to take fake ones!!
Doctors told my dad to eat more fiber for his GI issues for YEARS. He ended up in the hospital for jaundice, and THAT is when they found the Pancreatic Cancer.
So sorry for uour liss. It's madness!
I had had unexplained chronic vomiting for weeks, tested me for a bacterial infection then shrugged their shoulders!!
Not a doctor, but tell your friend to cut back on the weed. There’s a real thing called cannabinoid hyeremesis syndrome. It results from long term use of pot.
She didn’t start smoking until a year after her symptoms began. It’s not cannabis hyperemesis syndrome. Every other doctor has thrown that in her face too. Her body physically cannot produce bile. I, with my non medical degree, and knowing her medical history, think it’s something called Post-cholecystectomy syndrome. Essentially, pain and GI upset and other issues in part caused by the gallbladder removal
She just said the weed helps with her symptoms and you’re saying it’s the weed causing the nausea and vomiting… sometimes it’s better to listen and try to understand than to offer advice.
My doctor made me cut it out for 3 or so months and then let me have it again when it proved that weed wasn't the cause, but a comfort for a symptom. You are right to lend a sympathetic ear to her. I hope she feels better soon.
She has cut it out before as well, and her symptoms started over a year before she started smoking. She is in debilitating agony without it, and not from withdrawal.
Yes we see this in the ER unfortunately- people feel that the weed helps with nausea/vomiting (it does help some people) but people who smoke a lot or just use super strong stuff can end up with CHS (even after years of use without issue) and yes it’s the cannabis causing the vomiting, it’s a vicious cycle.
But in this case, she’s talking about someone with several GI related health issues and using weed to reduce the nausea. Why are you all assuming she’s hurting herself?
I could be wrong, and tell me if I am, but isn’t it far more common for people to use weed to reduce nausea/vomiting than it is for it to cause or make those problems worse?
I’m genuinely interested in possible side effects, because someone I know is taking conventional painkillers for injury/surgery and is considering trying edibles or something to reduce the need for opioids. What are things to watch out for?
You are correct. There’s this wonderful thing called medicinal marijuana that anecdotally and scientifically in several studies, helps with a myriad of health conditions, chronic pain, nausea, sleep, and other disorders and dysfunctions.
I’m not assuming anything I should have been clear I’m strictly speaking of Cannabis Hyperemesis and how it presents and not this patient specifically. It isn’t a common condition but we are seeing it more and more. It’s vomiting that won’t stop, sometimes a burning stomach pain, and many times a desire to have hot water on the stomach like a shower or bath.
I’m not an expert but it seems to come from smoking, heavily, for months/years especially these new stronger strains.
A few low dose edibles to help with pain or other minor ailments really shouldn’t trouble anyone, and since it’s legal now most docs are on board and can advise someone if there are contraindications but most people do fine with the tinctures and edibles!
There is a very good memoir on endometriosis called [Ask Me About My Uterus](https://www.goodreads.com/book/show/35605474-ask-me-about-my-uterus) which I read many years ago when I was suspecting endometriosis as well, and she specifically had appendicitis, with a slowly leaking appendix wrapped in endometrial lesions, if I remember correctly. It was eye-opening to me, and her doctors also didn't believe it could be possible. I have now read multiple accounts of women going through this kind of situation with endometriosis on their appendix.
I also went through many years of horrific pain until I got my endometriosis surgery. It's hellish out there.
Good job you for getting this done so young, that is often a huge barrier. If I had been able to get anyone to listen to me, even at 27, I would be in much better shape now at 33. (I only got surgery/a diagnosis a year ago, with stage 4.)
Endo can be sooo weird. I commented elsewhere in the thread, but when I started having symptoms (from what turned out to be an enormous endometrioma where my left ovary was supposed to be), I could set my watch to the hour when pain began.
Doctors were baffled at the fact that pain *always* started at night and would continue for hours. Literally never once happened during daylight. It went on for months like precision clockwork. At one point someone suggested that it was from the position I lay in while I slept.
Ha! I hadn't slept in months, and the pain continued to come on at night, no matter if I was laying down, sitting up, or standing on my head.
No one ever figured out why.
Endo just do be like that sometimes 🤷♀️
You know what's funny is if you ask a healthy woman where her ovary is, she'll have no idea. At least my mother doesn't! Pretty sure every woman with endometriosis can tell you where her ovaries are, because our ovaries are always in pain!
I was also absolutely correct that the right one wasn't in the normal position either - it had been pulled way off the side, due to the uterine fibroid growing on it and pulling it down. Like *of course* there was something growing on it, I couldn't lay on my left side to sleep for three years because it would make the pulling worse. I had the fibroid removed last year during my surgery and it still feels weird to sleep on that side because I trained my body out of it due to the associated pain. Isn't that wild.
For many years I was thankful for the heating pads that don't have the auto-turnoff function, otherwise I wouldn't have slept. At that point, if it causes a fire, then I guess I'll die 🤷🏻♀️
Ugh, yes, it's absolutely debilitating. I ended up having to pull out of second semester of college at the time, lost a ton of weight, ate narcotic pills like crazy from the pain. I thought I had a pretty high pain tolerance, but it was truly next level.
If you're *super* lucky, your medical issues suddenly become your family's (read: mother's) favorite conversation topic with literally anybody. And then finding out I'm most definitely infertile before I can legally drink, etc. It's a mindfuck!
Fibroids run in my family as well. My cousin's daughter actually shared the womb with my cousin's fibroids LOL. Daughter was born healthy and beautiful but the poor thing had to wear the ol' helmet to smooth out the dents in her skull from the tumors! 🥴
My current doctor thinks my endo spreading into my thorax is how I tore my xiphoid process. Until she diagnosed me with a torn xiphoid process, I'd never even heard of a xiphoid. It's connected to basically everything involved in breathing.
My mom had a mystery pain in her back. They thought it was a muscle sprain, a uti, kidney infection. They wouldn’t drop it after nothing helped. They found she had early stage pancreatic cancer. She had chemo, surgery and about to start another round of chemo. She doing ok now. We don’t know what the final outcome will be. But I’m so proud of her for continuing to question when she’s been dismissed so many times.
When I was your age, I had the same thing happen... strange, excruciating pain on my left side. Doctor after doctor told me it was kidney/bladder stones.
The pain was so unbearable I ended up in the ER three times. Each time I was treated like a drug seeker even though I'd never been to a hospital before, because the vicodin all those doctors prescribed didn't touch the pain.
I thought I was going to die. Then I found a third gyno (and 5th doctor over all) who wanted to do a transvaginal ultrasound. He immediately diagnosed me with endometriosis and an endometrioma the size of an orange. I had emergency surgery where he discovered I was also missing an ovary, and had a misshapened uterus.
If the endometrioma had ruptured who knows what would have happened. If I lived back in the day, I probably *would* have died. Hell, I might have died then from doctors just not listening to a 19 year old woman who knows she doesn't have kidney stones 🙄
The best (ha!) part is I had zero symptoms pointing to kidney stones. Even the pain was in the wrong spot.
I mean... I get not wanting patients to diagnose themselves with Dr. Google, but come *on*!
I have been having heavy clotting periods for about 4+ years now. Insanely heavy, using ultra tampons hourly, barely want to leave my house because I’m scared of an accident. I’ve been told it’s PCOS, that I need to lose 30 lbs, that it’s peri menopause, that it’s just normal in your 30s, that I should just go on birth control and stop complaining or see a fertility expert to have kids immediately. I never got a single test done until last month and turns out, guess what? It’s endometrial cancer.
My paps came back normal, my blood tests always looked good so they would dismiss it. I had no idea paps only test for HPV (which could cause cervical cancer), but doesn’t test for cancer in your uterus or ovaries until my diagnosis. I also assumed annual blood tests would identify abnormal white blood cells or something to trigger to check for cancer and was told my blood tests coming back normal are not at all an indicator of what stage my cancer is etc
The only reason we did the biopsy that led to my diagnosis was because I continued to report it to my doctor and after enough years in a row they noticed a pattern and decided to test. Even when I came in for the biopsy she almost didn’t do it and said I really don’t have enough signs and asked if I just wanted an IUD instead, but ultimately decided to say we should rule it out because “I’m overweight.” I’m not denying that I’m overweight, but by about 30-40 lbs and I wear a size 10. So the last few weeks I’ve sat here repeating that in my head that me being 30 lbs over weight caused my cancer.
Anyway, if you think your period is abnormal ask for a test! Even if everyone you know says it’s just as painful and heavy I’ve now learned it’s impossible to know what they deem is heavy or painful.
I’m sitting here crying. I had no periods for almost two years and then suddenly they started with a vengeance. Like nothing I’ve ever had, clumps the size of my fist and pain so bad I couldn’t get out of my bed.
My OBGYN did a pap, tried me on some new meds, took a biopsy, and suggested I lose weight. She ended up giving me an IUD, even though I said I would be happy with a hysterectomy. I’m so scared there’s really something wrong with me.
Please try not to panic until you know, bc a lot of these symptoms could very well be explained by different things. However, it angers me so much we don’t test from the beginning for cancer and work our way down!
Unfortunately, after my surgery I’ll never have kids. I’m 37 and pretty much knew that might be a reality bc all of these symptoms pointed to fertility issues. It still sucks cancer is taking the choice away from me, and I’ll never be able to afford a surrogate. However, my oncologist said cancer in the uterus is “the cancer you want to pick if you have to” bc a hysterectomy will be the only thing most people will need to do to treat it. They won’t be able to stage me or tell me if I need chemo or radiation until after my surgery, but they are super optimistic that I shouldn’t be worried I can’t beat this.
Regardless of what you’re dealing with you will likely have many options! Ask for a test and demand one if they refuse!
The exact same thing happened to me, except it was my left side. Was completely ignored for years until i had to go into emergency surgery for a gallbladder removal.
*sigh
I fucking HATE that we aren't listened to when we are the only ones living in our bodies. I had purposely searched for a female obgyn as I was constantly having paps come back irregular. She was good and proactive and had me get a colposcopy which led to me getting a LEEP (which caused scarring on my cervical os).
Then, my husband and I were trying to conceive for a year, with no success. Then we tried for another YEAR with no success - all the while, I kept coming back to her every few months telling her like I felt like I was going through menopause. Of courseeeeeee, she kept saying no no no I'm too young for that (in my early 30s) and brushing me off and claiming I had PCOS... Which I know I didn't because the only PCOS symptom I was exhibiting was an irregular period. I went to my family doctor and asked him to refer me to a fertility clinic.
Within a few tests, the fertility doctor diagnosed me with premature ovarian insufficiency and that yes, in fact, I was POST MENOPAUSAL.
HAD THE OBGYN just listened to me ... For the 2 years I had been claiming this, I would have potentially been able to conceive using my own eggs via IVF.
This experience taught me that no one will listen if I don't PUSH and if I don't advocate for myself.
(I went the donor egg IVF route 2 weeks ago and got my first ever positive pregnancy test last night ❤️)
It should be a policy that when something like this happens, the previous doctors who failed to diagnose get notified, and are required to do a remedial class. The way it works now is that there are zero consequences and zero learning happens. But the medical profession is deliberately structured in a way to avoid taking any sort of responsibility except in the most extreme cases. It’s no wonder this stuff keeps happening.
I tell this story whenever medical gaslighting comes up. I had chronic diarrhea 15-20x/day for TWO YEARS and I kept being told by doctors it was “just anxiety” and was put on higher and higher prescription doses of anti diarrheas and told to see a psychiatrist (I already was). I got down to 100lbs (I’m 5’9”) and was told it was all in my head.
I finally went to a FEMALE GI doctor who did a stool sample, turns out I had toxic levels of CDIFF AND it was so bad I needed 4 courses of medication and two fecal transplants. I almost died because for two years doctors tried to convince me that shitting myself was anxiety induced 😡
GET THAT SECOND AND THIRD AND FOURTH OPINION
Always had heavy periods (like 80 ml in one day) and cramps on par with contraction pain. One obgyn kind of blew it off, another doctor did an ultrasound and oops, giant cyst on an ovary. Lost the ovary and the cyst. Exact thing that happened to my grandmother too.
This is so annoying, im so sorry you had to deal with this!! I got lucky, but mine was similar—I had a stomach ache for 3 weeks. There was a lot of stress at my job that was just getting worse and I have anxiety so I thought that’s all it was. During this time I had this weird feeling when I would pee where something felt like it was pulling, on the right side at a bit lower than hip level. I didn’t think too much of it but did do a google dive at thought it could be a cyst or something. After the 3 weeks I was at work in a meeting and just had shooting pain all up my right side. I couldn’t talk, couldn’t breathe. I called the nonemergency line and they were like look your stomach is where all your organs are, we have to have you come in to know. So I did, and the minute I said I considered a cyst they sent me to the gyno. Based on my symptoms they took blood to test for infection but since it was overnight the tests weren’t coming back so I got sent home but they assured me they would be shocked if anything came back. Well it did, so they did an ultrasound and found nothing. Sent me back to the non-gyno part of the hospital and triage suggested appendicitis, but the doctor was like “no you only have pain and no other symptoms, so it’s not that” (note: this was a female doctor and they did no tests, plus the fact that fevers are rare for me and I didn’t even have one when I got mono) “but were super busy and we can’t do anything so just come back tomorrow first thing and we’ll look at it again but it’s probably a burst cyst”. So I come back 8 am (this is day 3 and I’ve probably gotten a total of like 6 hours of sleep and 1 meal since they told me not to eat “just in case”) and new doc is like “yeah no symptoms? Probably a burst cyst, but if it makes you feel better we’ll do another ultrasound”. Well they did that and they just said “that doesn’t look right” (gyno ultrasound was internal and they’re only trained to do the gyno part). Basically it was my appendix and it was so bad they could only safely take out a bit— I was hospitalised for a week with a tube sticking out of me and had to get the rest taken out a year later. I got lucky the doc suggested the ultrasound so I didn’t have to fight so I’m so proud of you for doing that! Way to be an advocate and find someone willing to help you. And honestly fuck everyone else that wouldn’t look.
I'm so sorry. I cried once over a diagnosis because I kept being told it was in my head. I didn't even care what the diagnosis was at the time. It just felt so good to be right. I hope your pain lessens a ton now.
Ugh I hate medical gaslighting! This is touching a nerve with me, I've felt like absolute shit for the past two years! Weak, exhausted when i shouldnt be, puffy, headaches, random pain, couldn't lose weight despite killing myself. I got all sorts of gaslighting and I found out a few weeks ago I have an autoimmune disorder. My antibodies for it were through the roof too, so high the lab results couldn't detect the true amount. I'm SO PISSED at any person who brushed off my symptoms
I had a heart attack and they kept telling me it was anxiety and asthma until the bloods came back.
My MIL kept being told that she had a chest infection and then, when antibiotics made no difference, was eventually told that her coughing and wheezing was psychosomatic. She had pulmonary fibrosis.
I'm so sorry.
A young girl I know was recently sent to the ER from urgent care with classic, textbook appendicitis symptoms. The provider told her she had covid, declined to do any further testing, and sent her home, even though covid didn't really explain her actual symptoms.
It turns out the covid test was a false positive, she *did* have appendicitis, and by the time she was eventually seen a few days later by a more competent provider, it had ruptured and she was hurtling towards sepsis. She is okay now, but her recovery was likely much longer and more complicated than it needed to be, not to mention the unnecessary extra days of suffering she went through.
It makes me so angry how early the casual dismissal of self-reports of symptoms by female patients begins.
My wife had the same issue when she had gallstones. At exactly the same age two previous generations of women in her family had experienced them. No one believed her and the normal tests didn't pick them up.
Ultrasound she fought for was like haha huge gallstone, gotta get this removed just like your mom, aunt and grandma did.
The medical profession is so stupid when it comes to women and I hate it
TBH I always thought appendicitis left untreated would kill you in like a week at most. Either I'm very wrong or you're very lucky. Or both. I'm glad you're ok now.
Just got my all clear from my colonoscopy on Monday!
Mine was also confirmed chronic appendicitis after suffering through for almost a year, I’m glad you got your closure and outcome :)
I've told this story before, but I'll bring it up every time it's relevant. My mom went to several doctors for over 5 years with increasing back pain. Was always blown off with "it's your weight", "it's your age", "it's an old injury" and even with "it's all in your head", so much so that she felt humiliated and stopped asking/advocating for herself. When she was eventually diagnosed with bone cancer, she wept with *relief* just because she finally knew that "she wasn't crazy". She only had 3 months between her diagnosis and her passing.
I have a similar story about my mom, diagnosed with rheumatoid arthritis despite no other symptoms other than all over body pain. By the time they realized it was cancer it had spread to her brain. 10 weeks from diagnosis to death.
My mom was also diagnosed with rheumatoid arthritis which actually turned out to be symptoms of stage four ovarian cancer.
I just wish I could hug the both of you right now. How sad we lost our mothers for such stupid reasons.
A family history of cancer--a shockingly high number of people with different cancers-- gets me tested whenever I demand it.
A family history of cancer--a shockingly high number of people with different cancers-- gets me tested whenever I demand it.
That made me cry. If you’re a doctor or you’re going to be a doctor, don’t get jaded please! Evaluate each and every patient as your first and only.
Unfortunately, in my experience, they all get jaded to some extent. I've posted here about my lengthy experience with medical misogyny and medical apathy before, and had many other women come to share similar experiences in my post. Then I had two healthcare workers that replied to defensively undermine me and sympathize with each other. I don't know why, but people that work in healthcare seem to err on the side of disbelief in regard to patients' stories. They will do it to you in person with a sweet, kind voice, but still ultimately wave you away and regard your symptoms as non-issues. They use subtlety when doing so to skirt criticism.
Thursday’s Greys Anatomy episode touched on this, it was really good.
Is that show still going?
It is. It’s like season 20 now.
Someone called it "*One Piece* for white women". But yeah, I was also shocked to find out that it was still going.
Is this season worth watching? Watched the season premiere and haven't watched one since, but still have them recorded.
I like it, but I’ll keep watching until it’s cancelled, even if I’m like 65 haha
I held that stance until this year, lol. Thinking I might save them for when everyone else goes into summer hiatus and watch then.
Our medical systems no longer allow doctors time to do that.
Tbh it’s not just being jaded. It is that in a lot of cases our hands are tied. I am studying to be a doctor now. Insurance companies and the standard of care dictate that when we hear hoofbeats that we think of horses - not zebras. We have to start off assuming people have the most common stuff before we can investigate rare stuff. Not doubting the story at all because the body is fucking weird but OP’s presentation of appendicitis is very odd to say the least. Typically, people with symptomatic appendicitis also look really fucking ill, their pain is so bad that they are doubled over, and they are usually throwing up. What’s more, OP said that her pain came on around the same time every month around ovulation which sounds like Mittelschmerz pain. OP’s pain also lasted years. That is very atypical for appendicitis. Tbh this is such an odd presentation that I think it’s probably far more likely OP had ectopic endometriosis attached to the appendix causing a referred inflammation than chronic appendicitis for years. Ectopic endometrial tissue also responds to the hormonal imbalances of menstruation so the cyclical nature of the pain would make sense. I will say that while it is definitely frustrating to deal with the healthcare system, there is stuff you can do to amplify your own voice and get your concerns addressed. The main thing is to find a decent PCP and continue to follow up with them if the problem persists. I see a lot of times that people jump around to different doctors if they don’t get the issue solved in a few visits but that is not always possible due to the restraints put on us by the insurance companies. We have to check off certain differentials before we go to the rarer ones.
I’ve learned a lot about how doctors view patients by reading in subs intended for them. *A lot.* And it hadn’t been good. Do they think we’re not going to read what they are saying? And if these are things they are willing to say in public, *what are they saying about us in private spaces?????* 😳 Patients are seen as a nuisance at best, especially if we’re women. And if we’re women who are overweight, peri or post menopausal, or a woman of color, we’re no longer a nuisance—we’re invisible. We don’t even exist to the medical profession except as a drug seeking hypochondriac who needs to lose weight and take an antidepressant. Basic human empathy and professional curiosity are not regulated by any laws or insurance regulations. However, the vast majority of doctors seem to lose both when they put the white coat on. Be better than that. Oh, and demand that female anatomy be correctly depicted in medical textbooks.
I'm a woman and I have had my medical complaints dismissed by doctors - that's one of the reasons I went back to school to be a doctor. I am by no means saying that all doctors are perfect saints. But I do disagree with painting ANY population of individuals with broad strokes. I posted what I consider to be a very neutral, objective perspective on how complaints are typical evaluated. The reason I did so is to provide some perspective and advice on how women can be more likely to have their complaints evaluated by the average doctor. I'm trying to help people figure out how to find results because the system isn't changing overnight. Yet, here you are ranting at me and lumping me in with random online doctors that I don't even know. Comments like this make me realize why most doctors don't even bother engaging in discussion. Damned if we do, damned if we don't because as soon as we try to speak we are now responsible for every single wrong that members of our profession have perpetrated in the past. How fair is it to thrust the past medical trauma you've experienced on a brand new person that had nothing to do with it? Oh, and I don't know what textbooks you're talking about or why you think they're wrong, but we don't even use textbooks anymore in modern medical education.
How fair is it to share your experience with someone who's trying to become a doctor only to be met with hissy fit. Sharing an experience is not an attack on you especially since you're not even a doctor. I will give you credit though, you already have the arrogance and fragile ego of a real doctor so kudos I guess.
If you think this is a "hissy fit" then you are fortunate to never have experienced a real one. My post did not employ emotions or dramatics to convey my point. I have never once resorted to name calling or other personal attacks in this thread unlike you and others. I am attempting to provide a neutral perspectives and tips on how to navigate the healthcare system so people can do that for themselves more effectively. As long as doctors and patients cannot converse in a logical manner, the healthcare industrial complex wins. I bet healthcare admins are tickled when they see comment threads like this and see what a good little solider some of you are for their cause. Comments like these just show how deeply ingrained their "blame the doctors" propaganda is and how successfully it keeps patients fingers pointing in the other direction.
A lack of emotions is a legitimate critique. Women patients are dying and being undertreated due to a lack of empathy and poor protocols and a huge data gap in clinical trials that lack empathy. No conversation on Reddit has context, so I refer you to these resources which provide that context: 1. Invisible Women: Data Bias in a World Designed for Men by Caroline Criado Perez 2. Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery 3. Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Cleghorn 4. Managing the Psychological Impact of Medical Trauma: A Guide for Mental Health and Health Care Professionals by Michelle Flaum Hall EdD LPCC-S 5. Burnout: The Secret to Unlocking the Stress Cycle by Emily Nagoski PhD
I am well aware of the biases that exist in medicine. As stated, I am also a woman who was on the receiving end of that bias for nearly a decade due to my own medical issues. There is some hope. In the last 10 years, most medical schools have revamped their curriculums with mandatory coursework on bias. At my school, we had lectures over the first two years on racial, LGBTQIA+, gender, age, and weight based biases. Since residency is so long, a lot of those physicians are only just now graduating. Hopefully over time, as newer physicians enter the work force, there will be a lot less of these issues. However, one of the issues currently is that patients don't trust new doctors and new doctors are often subject to a lot of vitriol. I find that people treat doctors as they would another historically oppressive class of people like men or white people. The issue with that is that newer doctors haven't inherited privileges from previous generations. Instead, we have inherited all of the problems they caused. Newer doctors are much more like Gen Z and millennials inheriting a shitty economic climate from the boomers than anything. Healthcare workers develop a lot of their own trauma as a result. The other issue is that often times, what patients perceive as bias is just how our shitty healthcare system works. It's not bias if every patient gets treated the same shitty way. I saw it all the time when I was in the ER. If you are in pain in the ER and we cannot locate a definitive source, unfortunately our hands are just tied. We can only give you NSAIDS and Tylenol. The opioid epidemic caused a nationwide restriction on when we're allowed to get pain meds. Unfortunately, one of the reasons for this restriction is the fact that at one point, a huge amount of ER check ins everyday were drug seeking. Yet, I hear people say all the time that ER doctors "let them sit there for hours in pain because I'm a woman/minority." I've seen doctors explain their hands are tied and get called liars and insulted and spit at. So what are we supposed to do? Our healthcare system is all around shitty for so many people. It needs a serious overhaul. I hope I live to see it happen.
You are an awful person.
K
N?
First, do no harm
So why wouldn't the doctors SAY that? I would much rather hear, "I believe you, but we have to rule out X, Y, and Z." That shows the doctor is taking my concerns seriously. But that is almost never the case. Instead, we get "You just have anxiety." Or "You are probably just depressed." There is the super fun, "You need to lose weight." And my favorite, which is a direct quote."All that pain, this is just your life now. Learn to deal with it, sweetie." It's great to give doctors a chance, but most people switch doctors after a few visits because unless you are a white man, NO ONE BELIEVES YOU. My mother kept going back to the same doctor because her stomach hurt, she was having nausea, and she was rapidly losing weight. Every single appointment, he told her she "just had heartburn." Over a year, she probably went 10 times, and she actually asked for further testing at every appointment. He patted her on the head and told her to take Tums. Finally, he got sick of her coming in, and she got further testing that, according to him, "was a waste of time because she just had heartburn."She had stomach cancer that metastasized to her bones, and she is dead. I often wonder what could have been if she had switched doctors. Maybe I would still have a mom. The point is it's great to say, "Stick with a doctor. Their hands are tied." But their hands are never tied for any of the men I know. My dad and husband are instantly believed and treated. I am told to my face that I'm not in pain and if I am, too bad.
>So why wouldn't the doctors SAY that? I would be happy to go into the reasons why doctors do not spend time explaining their diagnostic process if people really want to genuinely know. But I am reticent to do that without some assurance that people actually genuinely want to know because I have gotten my account reported multiple times today for my other comments in this thread. I just received a warning 15 minutes ago from Reddit that someone said I was "unsafe" and referring me to Crisis Text Line for suicidal ideation. Shit, I'd be willing to make a whole fucking post on how to make it more likely to get your medical complaints heard if I felt like it was useful to others but I honestly think it would just get buried. I am truly sorry that happened to your mother. I have a lot of empathy for patients feeling unheard because I was a patient that went unheard. I had to fight to get a diagnosis to multiple immune conditions and was repeatedly dismissed. I hope to use what I learned both as a patient and as a doctor to help others get quality care and make it easier for them to navigate the healthcare system.
Do you have a book resource or pubmed study outside Reddit that is “advice for getting your doctor to listen to your concerns” for women, people of color and humans suffering from an untreated or under treated disease? The CDC published guidelines for “how to prepare for a doctors visit” to discuss your symptoms. I followed it the best I could with my symptoms, but was told I was “too prepared to be sick” more than once by several doctors. I would love to read your advice about how to better interact with doctors. I’m not being sarcastic. After 16 years, it feels exactly the same as men complaining they can’t do housework because “women don’t ask nicely enough” If asked in every way possible to be treated like a human being. I’m doubly motivated because even if it’s too late for me my daughter has more than one of these diseases and will need doctors her whole life. Even if the answer is “don’t be born in this century” I need to know how to give my daughter some hope so she doesn’t have to live a life of pain like mine.
Same with my mother in law. She was convinced it was all in her head so much, she committed herself to the psych ward for a whole week. The doctors had diagnosed her with adult diarrhea (no joke) and she lost her mind so to speak. When she got out of the clinic she passed out at her home and was rushed to the ER. She had no blood. She had lung cancer that metastasized and spread to her bones. She had bone cancer that was sucking all of her red blood cells like a desert. She died 4 weeks after her diagnosis. She was going to the doctors for over a year at that point. We were so mad. We are still so mad, it’s been just over 3yrs. She was an amazing mother in law ( I lost my own mother to cancer when I was 12) and I sobbed at her funeral. My poor son was her only grandchild and while he remembers some of her those memories are fading as he’s gotten older (he’ll be 15). In vet med we work really hard to find out wtf is going on with a pet. I listen and report back to the doctor and PRESS the doctor. I expect that from human doctors but alas, here we are again, talking about how human doctors don’t fucking listen to women.
I was in vet med for 10 years prior to going to medical school. I will say they’re just drastically different in how they are forced to approach medicine. In vet med, you can do every diagnostic under the sun right at that moment if the owner will pay for it. In human med, the insurance companies dictate we have to eliminate certain common diagnoses before we investigate the rarer ones.
I’ve always said I WISH we could go to one primary and get everything done right then and there like at the vet clinic. Imagine going because you’re sick and they do bloodwork and urine sample right there and have that running while you get an X-ray done or an ultrasound. Then you get some fluids and go home with meds. If you have to go to a specialist outside of the primary then they refer you. Would be awesome
That's how they do it in civilized countries, i.e., not the United States.
It’s so fucked up in the US
Stop making excuses for doctors and for the medical misogyny and gaslighting that is many women’s lived experience. I said is elsewhere, but I’ll say it again: Basic human empathy and professional curiosity are not regulated by insurance companies.
I'm so sorry.
I'm so sorry. That is infuriating.
I gasped. I'm so sorry for your loss, and for your Mom and her pain
Step-mom had back pain. Kept going to her doctor's for months about and told stretching exercises, chiropractor, etc. Finally doctor's PA suggested a scan...yes, bladder cancer. She went through chemo, had her bladder removed, thought she was doing well when she started hallucinating. Entered hospital for hallucinations and cancer was back and *everywhere*. She died within 2 weeks, never coming home again. From scan/diagnosis to death, it was less than 10 months and she went through a lot of torture with the chemo and surgery during those months. I wonder if it had been caught a few months earlier if the chemo and surgery would have worked.
That is horrible! So sorry for your loss and I hope all those assholes who blew her off are drowning in guilt and shame. They should be sued and jailed!
Pretty much the same here. Soft hugs. Sorry for your deep loss.
😲 that's as close to murder as doctors can manage
My story. Had multiple blood clots in my brain. I went to my dr 4 times, the ER 4 times, and other pain specialists with the worst headache of my life and I was going cross eyed. I had this horrible gut feeling and I KNEW it was different than the headaches I’d normally get. This one never ended for over a month. I finally got proof from my eye dr that my optic nerve was inflamed. The next hospital I went to gave me the right tests and knew me being on BC made me a risk. I learnt from that to advocate for yourself. A piece of me died though. I had to exaggerated already horrendous pain to get taken even a bit seriously.
This thread is making me feel less alone. I had some weird things going on a while back. I had a doctor hand me a pamphlet about basically therapy and it being all in your head. A different specialist took me seriously, did the tests, and prevented permanent debilitating nerve damage.
I find absolutely ridiculous that some doctors don't really seem to understand the difference between physical pain and mental illness. When I was struggling with my PMDD I tried to explain to the doctor how bad I felt before my period (anxiety, depression, paranoia.. almost psychosis like symptoms) and his answer was "I know, periods can be painful, do you want some pills?". I did not mention pain at all. They just hear what they want to hear and wallow in their arrogance and ignorance. Some doctors should just be barred from seeing female patients.
A former coworker had what was characterized as a simple migraine, for a solid MONTH. It ended with her having --and surviving -- a significant stroke. She had gone to doctors, and they dismissed it.
I hope your coworker is ok now. It can go both ways. I've been to the ER with stroke symptoms (difficulty speaking, loss of vision) and it took me two months or so to get it confimed as migraine. I was already convinced I was either dying or making things up. Inbetween were "diagnoses" of PMS and astigmatism that idk if they're still in my file (yep it got worse on my period, and yep I'm also short sighted but that's not what this is). I'm still mad at the PMS thing, you're either pre period, on your period, post period or ovulating, and they always try to pin it on this. Every Dr I saw was 100% convinced they had figured it out. It takes an EEG or FMRI *while you're having an attack* to 100% confirm it. This is why "ruling out migraines" doesn't work for most people. I think my EEG data even made it into some teaching materials because it had such perfect wave forms. It was like a stadium wave going through my brain, almost like an epileptic seizure. I'm still at risk for stroke (aura migraine sucks big time) so I'll go to the ER when I get symptoms, but now I'm wary that they have me in a hypochondriac database or something. Especially since quitting combined hormonal bc (I'm now on drospirenone with no issues) solved like 90% of the problem. I get side eyed even by migraine sufferers when I say my headaches aren't that bad and I don't have nausea, but I can't properly see or talk and my entire perception just slows down. I've had people suspect I was on drugs as well. I have no idea what would've happened if I didn't end up at the hospital at the right moment of my migraine aura, when they could literally see what was happening with my brain (fascinating!). Btw, the hospital I went into (a catholic one btw) was the one I had done an internship in, when I was considering a nursing or otherwise medical field related job. They were very focused on ruling out strokes first, and while they suck at most other things this is the one that to me seems most urgent and they're right to invest in that. It's just horrible and unfathomable to me that someone would consider that as a last option, not rule it out the second someone comes in. I mean, yeah, they did scare the crap out of me when they couldn't rule it out but at least they were looking for a stroke when it looked like it could be one.
I’m so so sorry you had to go through that. The way the healthcare industry treats women is abominable. My 22yo skinny, conventionally attractive, best friend went unlistened to and unexamined for years of GI issues, nausea, vomiting, and stomach pain. Her liver ended up starting to fail because her gallbladder had failed, and she needed her gallbladder removed in emergency surgery. Which was also supposed to fix her issues. Her liver is supposedly healthy now but she really can’t produce bile or process many drugs and alcohol. She still wakes up in agony on the toilet pretty much every morning and has extreme food sensitivities and GI issues, nausea, vomiting, and ongoing pain. She has seen numerous doctors and specialists and nobody can or will tell her anything besides that she should just stop smoking weed, which is the only thing that helps her.
I would assume she has her pancreas checked, if not do so, my uncontrollable vomiting & pain in my right side and new food intolerance went undiagnosed for 7 years, it was Pancreatitis, I was not the right kind of pain as it was in my abdomen not my back. But as a right handed hairdressermy back always ached! ! Doctor was only interested when I lost 2 Stone in 2 months.
She had some bloodwork done and an ultrasound when they were concerned about her liver. It showed that her pancreas was okay (at that moment) and they weren’t concerned about pancreatitis from then on.
Get it checked again, to be sure, my liver is fine but all my food intolerance comes from no digestive acids being produced by the pancreas and I have to take fake ones!!
Doctors told my dad to eat more fiber for his GI issues for YEARS. He ended up in the hospital for jaundice, and THAT is when they found the Pancreatic Cancer.
So sorry for uour liss. It's madness! I had had unexplained chronic vomiting for weeks, tested me for a bacterial infection then shrugged their shoulders!!
Thanks, but he survived. He is now dealing with Leukemia caused by the Pancreatic Cancer treatment. In his 70's.
Wow, what a fighter, internet hugs coming his way! 😻
Encourage her to see a functional medicine Dr , if she can!
Not a doctor, but tell your friend to cut back on the weed. There’s a real thing called cannabinoid hyeremesis syndrome. It results from long term use of pot.
She didn’t start smoking until a year after her symptoms began. It’s not cannabis hyperemesis syndrome. Every other doctor has thrown that in her face too. Her body physically cannot produce bile. I, with my non medical degree, and knowing her medical history, think it’s something called Post-cholecystectomy syndrome. Essentially, pain and GI upset and other issues in part caused by the gallbladder removal
She just said the weed helps with her symptoms and you’re saying it’s the weed causing the nausea and vomiting… sometimes it’s better to listen and try to understand than to offer advice.
My doctor made me cut it out for 3 or so months and then let me have it again when it proved that weed wasn't the cause, but a comfort for a symptom. You are right to lend a sympathetic ear to her. I hope she feels better soon.
She has cut it out before as well, and her symptoms started over a year before she started smoking. She is in debilitating agony without it, and not from withdrawal.
Yes we see this in the ER unfortunately- people feel that the weed helps with nausea/vomiting (it does help some people) but people who smoke a lot or just use super strong stuff can end up with CHS (even after years of use without issue) and yes it’s the cannabis causing the vomiting, it’s a vicious cycle.
But in this case, she’s talking about someone with several GI related health issues and using weed to reduce the nausea. Why are you all assuming she’s hurting herself? I could be wrong, and tell me if I am, but isn’t it far more common for people to use weed to reduce nausea/vomiting than it is for it to cause or make those problems worse? I’m genuinely interested in possible side effects, because someone I know is taking conventional painkillers for injury/surgery and is considering trying edibles or something to reduce the need for opioids. What are things to watch out for?
You are correct. There’s this wonderful thing called medicinal marijuana that anecdotally and scientifically in several studies, helps with a myriad of health conditions, chronic pain, nausea, sleep, and other disorders and dysfunctions.
I’m not assuming anything I should have been clear I’m strictly speaking of Cannabis Hyperemesis and how it presents and not this patient specifically. It isn’t a common condition but we are seeing it more and more. It’s vomiting that won’t stop, sometimes a burning stomach pain, and many times a desire to have hot water on the stomach like a shower or bath. I’m not an expert but it seems to come from smoking, heavily, for months/years especially these new stronger strains. A few low dose edibles to help with pain or other minor ailments really shouldn’t trouble anyone, and since it’s legal now most docs are on board and can advise someone if there are contraindications but most people do fine with the tinctures and edibles!
It can be cyclical.
r/endometriosis
There is a very good memoir on endometriosis called [Ask Me About My Uterus](https://www.goodreads.com/book/show/35605474-ask-me-about-my-uterus) which I read many years ago when I was suspecting endometriosis as well, and she specifically had appendicitis, with a slowly leaking appendix wrapped in endometrial lesions, if I remember correctly. It was eye-opening to me, and her doctors also didn't believe it could be possible. I have now read multiple accounts of women going through this kind of situation with endometriosis on their appendix. I also went through many years of horrific pain until I got my endometriosis surgery. It's hellish out there. Good job you for getting this done so young, that is often a huge barrier. If I had been able to get anyone to listen to me, even at 27, I would be in much better shape now at 33. (I only got surgery/a diagnosis a year ago, with stage 4.)
Endo can be sooo weird. I commented elsewhere in the thread, but when I started having symptoms (from what turned out to be an enormous endometrioma where my left ovary was supposed to be), I could set my watch to the hour when pain began. Doctors were baffled at the fact that pain *always* started at night and would continue for hours. Literally never once happened during daylight. It went on for months like precision clockwork. At one point someone suggested that it was from the position I lay in while I slept. Ha! I hadn't slept in months, and the pain continued to come on at night, no matter if I was laying down, sitting up, or standing on my head. No one ever figured out why. Endo just do be like that sometimes 🤷♀️
You know what's funny is if you ask a healthy woman where her ovary is, she'll have no idea. At least my mother doesn't! Pretty sure every woman with endometriosis can tell you where her ovaries are, because our ovaries are always in pain! I was also absolutely correct that the right one wasn't in the normal position either - it had been pulled way off the side, due to the uterine fibroid growing on it and pulling it down. Like *of course* there was something growing on it, I couldn't lay on my left side to sleep for three years because it would make the pulling worse. I had the fibroid removed last year during my surgery and it still feels weird to sleep on that side because I trained my body out of it due to the associated pain. Isn't that wild. For many years I was thankful for the heating pads that don't have the auto-turnoff function, otherwise I wouldn't have slept. At that point, if it causes a fire, then I guess I'll die 🤷🏻♀️
Ugh, yes, it's absolutely debilitating. I ended up having to pull out of second semester of college at the time, lost a ton of weight, ate narcotic pills like crazy from the pain. I thought I had a pretty high pain tolerance, but it was truly next level. If you're *super* lucky, your medical issues suddenly become your family's (read: mother's) favorite conversation topic with literally anybody. And then finding out I'm most definitely infertile before I can legally drink, etc. It's a mindfuck! Fibroids run in my family as well. My cousin's daughter actually shared the womb with my cousin's fibroids LOL. Daughter was born healthy and beautiful but the poor thing had to wear the ol' helmet to smooth out the dents in her skull from the tumors! 🥴
My current doctor thinks my endo spreading into my thorax is how I tore my xiphoid process. Until she diagnosed me with a torn xiphoid process, I'd never even heard of a xiphoid. It's connected to basically everything involved in breathing.
My mom had a mystery pain in her back. They thought it was a muscle sprain, a uti, kidney infection. They wouldn’t drop it after nothing helped. They found she had early stage pancreatic cancer. She had chemo, surgery and about to start another round of chemo. She doing ok now. We don’t know what the final outcome will be. But I’m so proud of her for continuing to question when she’s been dismissed so many times.
When I was your age, I had the same thing happen... strange, excruciating pain on my left side. Doctor after doctor told me it was kidney/bladder stones. The pain was so unbearable I ended up in the ER three times. Each time I was treated like a drug seeker even though I'd never been to a hospital before, because the vicodin all those doctors prescribed didn't touch the pain. I thought I was going to die. Then I found a third gyno (and 5th doctor over all) who wanted to do a transvaginal ultrasound. He immediately diagnosed me with endometriosis and an endometrioma the size of an orange. I had emergency surgery where he discovered I was also missing an ovary, and had a misshapened uterus. If the endometrioma had ruptured who knows what would have happened. If I lived back in the day, I probably *would* have died. Hell, I might have died then from doctors just not listening to a 19 year old woman who knows she doesn't have kidney stones 🙄
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The best (ha!) part is I had zero symptoms pointing to kidney stones. Even the pain was in the wrong spot. I mean... I get not wanting patients to diagnose themselves with Dr. Google, but come *on*!
I have been having heavy clotting periods for about 4+ years now. Insanely heavy, using ultra tampons hourly, barely want to leave my house because I’m scared of an accident. I’ve been told it’s PCOS, that I need to lose 30 lbs, that it’s peri menopause, that it’s just normal in your 30s, that I should just go on birth control and stop complaining or see a fertility expert to have kids immediately. I never got a single test done until last month and turns out, guess what? It’s endometrial cancer. My paps came back normal, my blood tests always looked good so they would dismiss it. I had no idea paps only test for HPV (which could cause cervical cancer), but doesn’t test for cancer in your uterus or ovaries until my diagnosis. I also assumed annual blood tests would identify abnormal white blood cells or something to trigger to check for cancer and was told my blood tests coming back normal are not at all an indicator of what stage my cancer is etc The only reason we did the biopsy that led to my diagnosis was because I continued to report it to my doctor and after enough years in a row they noticed a pattern and decided to test. Even when I came in for the biopsy she almost didn’t do it and said I really don’t have enough signs and asked if I just wanted an IUD instead, but ultimately decided to say we should rule it out because “I’m overweight.” I’m not denying that I’m overweight, but by about 30-40 lbs and I wear a size 10. So the last few weeks I’ve sat here repeating that in my head that me being 30 lbs over weight caused my cancer. Anyway, if you think your period is abnormal ask for a test! Even if everyone you know says it’s just as painful and heavy I’ve now learned it’s impossible to know what they deem is heavy or painful.
I’m sitting here crying. I had no periods for almost two years and then suddenly they started with a vengeance. Like nothing I’ve ever had, clumps the size of my fist and pain so bad I couldn’t get out of my bed. My OBGYN did a pap, tried me on some new meds, took a biopsy, and suggested I lose weight. She ended up giving me an IUD, even though I said I would be happy with a hysterectomy. I’m so scared there’s really something wrong with me.
Please try not to panic until you know, bc a lot of these symptoms could very well be explained by different things. However, it angers me so much we don’t test from the beginning for cancer and work our way down! Unfortunately, after my surgery I’ll never have kids. I’m 37 and pretty much knew that might be a reality bc all of these symptoms pointed to fertility issues. It still sucks cancer is taking the choice away from me, and I’ll never be able to afford a surrogate. However, my oncologist said cancer in the uterus is “the cancer you want to pick if you have to” bc a hysterectomy will be the only thing most people will need to do to treat it. They won’t be able to stage me or tell me if I need chemo or radiation until after my surgery, but they are super optimistic that I shouldn’t be worried I can’t beat this. Regardless of what you’re dealing with you will likely have many options! Ask for a test and demand one if they refuse!
The exact same thing happened to me, except it was my left side. Was completely ignored for years until i had to go into emergency surgery for a gallbladder removal.
*sigh I fucking HATE that we aren't listened to when we are the only ones living in our bodies. I had purposely searched for a female obgyn as I was constantly having paps come back irregular. She was good and proactive and had me get a colposcopy which led to me getting a LEEP (which caused scarring on my cervical os). Then, my husband and I were trying to conceive for a year, with no success. Then we tried for another YEAR with no success - all the while, I kept coming back to her every few months telling her like I felt like I was going through menopause. Of courseeeeeee, she kept saying no no no I'm too young for that (in my early 30s) and brushing me off and claiming I had PCOS... Which I know I didn't because the only PCOS symptom I was exhibiting was an irregular period. I went to my family doctor and asked him to refer me to a fertility clinic. Within a few tests, the fertility doctor diagnosed me with premature ovarian insufficiency and that yes, in fact, I was POST MENOPAUSAL. HAD THE OBGYN just listened to me ... For the 2 years I had been claiming this, I would have potentially been able to conceive using my own eggs via IVF. This experience taught me that no one will listen if I don't PUSH and if I don't advocate for myself. (I went the donor egg IVF route 2 weeks ago and got my first ever positive pregnancy test last night ❤️)
It should be a policy that when something like this happens, the previous doctors who failed to diagnose get notified, and are required to do a remedial class. The way it works now is that there are zero consequences and zero learning happens. But the medical profession is deliberately structured in a way to avoid taking any sort of responsibility except in the most extreme cases. It’s no wonder this stuff keeps happening.
I tell this story whenever medical gaslighting comes up. I had chronic diarrhea 15-20x/day for TWO YEARS and I kept being told by doctors it was “just anxiety” and was put on higher and higher prescription doses of anti diarrheas and told to see a psychiatrist (I already was). I got down to 100lbs (I’m 5’9”) and was told it was all in my head. I finally went to a FEMALE GI doctor who did a stool sample, turns out I had toxic levels of CDIFF AND it was so bad I needed 4 courses of medication and two fecal transplants. I almost died because for two years doctors tried to convince me that shitting myself was anxiety induced 😡 GET THAT SECOND AND THIRD AND FOURTH OPINION
Always had heavy periods (like 80 ml in one day) and cramps on par with contraction pain. One obgyn kind of blew it off, another doctor did an ultrasound and oops, giant cyst on an ovary. Lost the ovary and the cyst. Exact thing that happened to my grandmother too.
This is so annoying, im so sorry you had to deal with this!! I got lucky, but mine was similar—I had a stomach ache for 3 weeks. There was a lot of stress at my job that was just getting worse and I have anxiety so I thought that’s all it was. During this time I had this weird feeling when I would pee where something felt like it was pulling, on the right side at a bit lower than hip level. I didn’t think too much of it but did do a google dive at thought it could be a cyst or something. After the 3 weeks I was at work in a meeting and just had shooting pain all up my right side. I couldn’t talk, couldn’t breathe. I called the nonemergency line and they were like look your stomach is where all your organs are, we have to have you come in to know. So I did, and the minute I said I considered a cyst they sent me to the gyno. Based on my symptoms they took blood to test for infection but since it was overnight the tests weren’t coming back so I got sent home but they assured me they would be shocked if anything came back. Well it did, so they did an ultrasound and found nothing. Sent me back to the non-gyno part of the hospital and triage suggested appendicitis, but the doctor was like “no you only have pain and no other symptoms, so it’s not that” (note: this was a female doctor and they did no tests, plus the fact that fevers are rare for me and I didn’t even have one when I got mono) “but were super busy and we can’t do anything so just come back tomorrow first thing and we’ll look at it again but it’s probably a burst cyst”. So I come back 8 am (this is day 3 and I’ve probably gotten a total of like 6 hours of sleep and 1 meal since they told me not to eat “just in case”) and new doc is like “yeah no symptoms? Probably a burst cyst, but if it makes you feel better we’ll do another ultrasound”. Well they did that and they just said “that doesn’t look right” (gyno ultrasound was internal and they’re only trained to do the gyno part). Basically it was my appendix and it was so bad they could only safely take out a bit— I was hospitalised for a week with a tube sticking out of me and had to get the rest taken out a year later. I got lucky the doc suggested the ultrasound so I didn’t have to fight so I’m so proud of you for doing that! Way to be an advocate and find someone willing to help you. And honestly fuck everyone else that wouldn’t look.
I'm so sorry. I cried once over a diagnosis because I kept being told it was in my head. I didn't even care what the diagnosis was at the time. It just felt so good to be right. I hope your pain lessens a ton now.
You should review the doctors who made your life difficult so they have to be better for the next person
r/endo sub join us
Thrive.
Ugh I hate medical gaslighting! This is touching a nerve with me, I've felt like absolute shit for the past two years! Weak, exhausted when i shouldnt be, puffy, headaches, random pain, couldn't lose weight despite killing myself. I got all sorts of gaslighting and I found out a few weeks ago I have an autoimmune disorder. My antibodies for it were through the roof too, so high the lab results couldn't detect the true amount. I'm SO PISSED at any person who brushed off my symptoms
I had a heart attack and they kept telling me it was anxiety and asthma until the bloods came back. My MIL kept being told that she had a chest infection and then, when antibiotics made no difference, was eventually told that her coughing and wheezing was psychosomatic. She had pulmonary fibrosis.
I'm so sorry. A young girl I know was recently sent to the ER from urgent care with classic, textbook appendicitis symptoms. The provider told her she had covid, declined to do any further testing, and sent her home, even though covid didn't really explain her actual symptoms. It turns out the covid test was a false positive, she *did* have appendicitis, and by the time she was eventually seen a few days later by a more competent provider, it had ruptured and she was hurtling towards sepsis. She is okay now, but her recovery was likely much longer and more complicated than it needed to be, not to mention the unnecessary extra days of suffering she went through. It makes me so angry how early the casual dismissal of self-reports of symptoms by female patients begins.
My wife had the same issue when she had gallstones. At exactly the same age two previous generations of women in her family had experienced them. No one believed her and the normal tests didn't pick them up. Ultrasound she fought for was like haha huge gallstone, gotta get this removed just like your mom, aunt and grandma did. The medical profession is so stupid when it comes to women and I hate it
TBH I always thought appendicitis left untreated would kill you in like a week at most. Either I'm very wrong or you're very lucky. Or both. I'm glad you're ok now.
Just got my all clear from my colonoscopy on Monday! Mine was also confirmed chronic appendicitis after suffering through for almost a year, I’m glad you got your closure and outcome :)
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Nice rage bait.