Healthcare neglect

RESIST DON’T COMPLY

I'm disappointed in myself because once again I have let polite compliance take priority over my health. It is so aggravating that I need to be an asshole to a doctor for them to take my symptoms seriously enough to do simple tests to figure out what's wrong with me.

I've had symptoms that I suspect could be PCOS for nearly a year now and my doctor told me to come back in a few months if my symptoms persist before she'll refer me to a gynecologist to take a simple ultrasound test to see if I have it.

What am I waiting for? Why can't they just take the damn test? Why do I need to make yet another appointment in two months just to take a basic test to either confirm a diagnosis or rule it out. When I compare myself to my brother he just gets instant treatment and referrals for everything. His ear hurts, he gets shit vacuumed out of it. He has a strange looking mole, they take a biopsy and remove it. He has a tooth ache, and gets a root canal. When I have the exact same issues I get sent home to see if things magically get better or stop bothering me. It doesn't even matter if the nurses or doctors are men or women, the neglect is always there. They just don't take women seriously and it doesn't make any sense. They just don't care.

I'm going to have to become disagreeable and just question their judgement and demand the tests but it's going to be so awkward and they're going to think I'm a bitch. I just can't believe we have to fight this hard just to get basic tests done.

Does anyone else have thoughts on this or suggestions on how to deal with it?

in fourthwavewomenby Renarya

240

99%

1mo

LadywithaFace82

141

1mo

Be a disagreeable, pushy, questioning "BITCH" if you have to. I no longer care what people think of me when it comes to advocating for myself. They say these things about assertive women to keep us from advocating for ourselves.

[deleted]

1mo

Remember that you are the customer to your doctor. Fire them. Find a different doctor.

shimmeringmoss

1mo

This can work in the US, but many women in other countries get a doctor assigned to them and either can’t switch at all (this is madness to me!) or have to apply to switch and wait months or years to be able to. I know the healthcare system here is fucked, but it’s also kind of fucked in altogether different ways in many other countries.

shimmeringmoss

1mo

I’m on a few health related subs and FB groups and unfortunately I’ve read wayyy too many stories of women doing exactly this and finding out later as a result they had notes added to their files about being argumentative and non-compliant, or even gotten written letters in the mail officially dropping them as a patient (I didn’t know doctors could even do this). I’ve also read multiple accounts of women bringing their husband or boyfriend along to advocate for them and suddenly the medical staff is mysteriously willing to listen when a male is present and telling them the exact same thing. There are SO MANY FIRSTHAND STORIES of women having their physical symptoms dismissed for months or even years and told they simply have anxiety. In fact someone even shared that they are a medical student and one of the presentations in medical school was teaching them to diagnose women with anxiety when they can’t figure out their diagnosis. I wish I could find that post or comment to quote it directly, it was really shocking. Ladies, if you are ever told you have anxiety instead of actually having your symptoms addressed, do two things: remind your doctor that anxiety itself is a symptom of many physical illnesses (iron and other nutritional deficiencies being a big one) and also remind them that as an MD they do not have the qualifications to make a psychiatric diagnosis.

ralphsemptysack

1mo

I have cptsd, anxiety and asthma. I asked for a preventer as my reliever wasn't working. I've had preventers before, so no drama. The doctor (I'd never seen before) looks at her computer and says, I see you have anxiety, that will be why you are having breathing issues. No. I said. That's not how my anxiety manifests, but I was told once I had an anxiety label everything would be listed under it. Please, read all you notes, rather than stop at anxiety, and you will see asthma too. She went red, printed my prescription, and bundled me out.

shimmeringmoss

1mo

Yes! I hear that a lot too, once they put anxiety in your file even new doctors will use it to dismiss unrelated symptoms once they read that.

stellardeathgunxoxo

1mo

In fact someone even shared that they are a medical student and one of the presentations in medical school was teaching them to diagnose women with anxiety when they can’t figure out their diagnosis.

Awful. The sexism and racism in medicine is so disturbing to learn about

DrunkCupid

1mo

This unstated bias also drives ~~me nuts~~ women's mortality and preventable suffering rates sky high.

Same diagnosis, different charts:

A woman "complains of feelings", informed to see if her ~~Hysteria~~ "issues" dissolve after they are done dealing with her, but see multiple paragraphs of side notes about how she "presents attitude" (with quotes and interpretations by staff).

Same issue (let's say gall bladder)

A man "has symptoms" despite no tests being ordered or presented yet to determine them, is given liberal treatment for any current and potential future discomfort however mild, and his demeanor screaming and offering violence during the exam is 'irrelevant to the medical notes' 🤔 discharged with attentiveness and grace

TL:DR They are sexist because they don't see human pain from patients as equal, it must be attributed to some need or personality depending on gender

yumions

25d

I asked my doctor for a hida scan to check my gallbladder because I had a strong genetic history of gallbladder failure even before reaching the age of 30 (two immediate family members and two other family members), and I was experiencing pain in the spot my gallbladder is after eating.

He didn't acknowledge any of that and just slapped me with an IBS diagnosis

Astw101

1mo

Yes. Being a kindhearted and compliant person doesn't get you anywhere in such situations. I learned it the hard way

NaniFarRoad

1mo

Karens aren't born, we are made. Embrace your inner Karen and become sharp and "annoying".

Character_Peach_2769

1mo

Is this the reclaiming of the word Karen? I might be here for it

Electrical-Demand-24

1mo

One of my favorite women is a “karen”. Not in the “yells at minimum wage workers over nothing” way, but in the she’s not afraid to speak her mind and get things fixed if they need fixing way. She calls herself a bitch, but honestly she’s one of the nicest and most considerate people I know LOL. We should def have a Karen movement that’s just like, speak up for what you believe in and don’t be afraid to advocate for yourself if you know something isn’t right.

NaniFarRoad

1mo

My husband now positively calls me a Karen when he needs me to get something done (e.g. "the builder hasn't returned with a quote, are you going to Karen him or are we waiting another week?"), so I guess that's progress lol.

Renarya

1mo

I'm here for it too.

EgregiousWeasel

1mo

It's wrong, and it's unfair. You shouldn't have to jump through hoops for basic health care. That said, if it's possible, keep trying doctors until you find one who listens. They are rare, but they are out there. I was incredibly fortunate to have found one, and I stayed with her for 15 years, until she moved. I'm still looking for another one, and it's rough.

kweeenbitch

1mo

I’ve had PCOS since I was 12, I had the worst pain of my life one morning and went to the hospital vomiting, unable to walk. They did an ultrasound and referred me to the gyno. Took months to get an ultrasound there, and once I finally got one they scheduled surgery for that weekend. Massive tumor on my ovary caused fallopian tube torsion, I lost my ovary as well.

The medical system is so fucked for women, I still have a hard time going to the doctor today knowing how flippant they’ll likely be.

[deleted]

1mo

16 years old they told me I had an std (in front of my mom) and gave me a shot in the ass only for imaging to come back and show I had a tumor burst on my ovaries

gold-exp

1mo

A massive tumor on my ovary almost killed me because it grew too close to an artery. I hemmorhaged and lost half my blood supply. I had minutes to live when I went into emergency surgery lmfao.

It’s appalling how such a painful and dangerous thing is brushed off as a common experience. “Oh, just an ovarian cyst” is some shit we’ve all heard…

dexamphetamines

1mo

Nothing works. I’ve tried everything in the last 8 years. I give up on the medical system. I might try a herbal doctor for my last ditch effort. I’m really sick of being legitimately laughed at and screamed at

shimmeringmoss

1mo

Have you tried a functional medicine doctor? They are often direct pay so aren’t restricted by what health insurance companies dictate and allow, and also specialize in chronic conditions while focusing on actually solving the root cause rather than just managing symptoms. I’m not sure if you’re serious about an herbalist but I would trust a functional medicine doctor wayyyyy more than an herbalist. They are still legitimate physicians with medical degrees, and many of them left standard practice clinics to open their own after also giving up on the standard approach of the medical system.

dexamphetamines

1mo

Thank you for the advice. Haven’t heard of one before. There’s one about an hour from me I’ll try get an appointment with soon

shimmeringmoss

1mo

Google them for reviews beforehand, too, especially with driving that far! If you found them through the search feature on the IFM website, also make sure they are an MD since practitioners of all types are listed there and not all are MDs or even CNPs.

SuspectOk7357

1mo

I want to give you a big Internet hug!

I have been a caretaker for terminal patients as well as had to advocate for myself for chronic illness. I've learned the hard way and I'm finally getting what I need. Here's what I know:

1) Bad doctors out number good ones. The difference in being treated and just getting pushed around is YOU: your self-educating, learning how to ask the right questions and your decision to advocate for yourself.

2) Do not give into the illusion of authority or intimidation. Everyone from the receptionist's desk, to the Dr. to the goddamn insurance company has been trained in how to politely get you to feel bad for asking questions and how to make the process as easy and profitable for them with little to no consideration as to your experience. If you need someone to go with you to help you feel confident or little nudges when you need it, find them and don't quit until you get what you need.

3) Read, Read, Read. Research about every single aspect and test for PCOS. Be open to the possibility it's not PCOS, but know the correct tests so you know if the doctors are shortchanging you or not. Read about the proper procedure and treatments, read your insurance policy (if applicable) and know what is SUPPOSED to happen before it even is discussed with the doctor. Then you ask the doctor more questions to see if they know what the hell they're doing or if they're just following shallow procedures. When you know what you're supposed to be receiving you know when to speak up when it's not going correctly. Read up on what doctors in your area might be the best option.

4) Ask ask ask ASK. Even if you know what testing should be done, ask them anyway. Then ask them what happens if you do or don't have it. Then ask about treatment. Then ask about alternatives that could be the problem. Never ever assume anything for any reason. You will get better at asking questions when you know what to ask about, which is why #3 is so important. Drill the reception before you make the appointment about the doctor's experience with PCOS, hormonal imbalances, and pain-related disorders. If they act like they don't know wtf is going on, don't make an appointment.

5) If the doctor is dismissive, unprofessional, or poorly versed in PCOS, drop them. There is always a chance you will need to go through a few docs before you find a good one (you can get on the right foot by telling your provider you need a an OB who works in hormonal/pain related Ob Issues), and appointments take forever to get. Consider making several appointments a few days or weeks apart to decrease the amount of time you'd have to wait if one doc doesn't work out.

6) The first thing you should say to that new Dr. Is "I am in an unacceptable amount of chronic pain and I need to know and treat that root cause. I will not settle for being told "You're fine, labs look good" because there is a problem and I need it solved and I'm not quitting until it's solved." They need to take you seriously. You're not asking permission to feel better, you're telling them that they have a problem to solve.

A point on PCOS specifically:

-You will need extensive blood work. Yes you need the transvaginal ultrasound, but you also need a clear understanding of what's happening at a hormonal level. Read about the labs needed, if the doc does some super general panel but PCOS is tricky and needs more specific labs, request them from the get go.

I wish you all of the luck!

Renarya

1mo

Thank you so much. I think the authority is what trips me up the most because I don't have a problem being assertive and demanding in other contexts. But in the case of doctors I always think I guess they know best even though any idiot should realize that just getting sent home to wait for no good reason before taking tests makes no sense at all.

Adventurous-spice264

1mo

I automatically go in with an attitude honestly. They immediately know when they have someone who's going to be agreeable or not.

Your health is the most important thing. Let them know this will come back on them if they don't refer you.

Renarya

1mo

Thank you, I'll work on it.

alkebulanu

1mo

Be disagreeable, it's essential at this point. Learning about healthcare and your potential issues as much as you can so you can ask a ton of questions is important.

Always question their decisions, ask them why you're being made to wait, ask them why it's not being taken seriously, with a calm voice because if you shout they're throw you out 🙄

Doctor shop if you have to.

It's because of how badly women are treated is why one day I want to open a hospital just for OFAB (observed female at birth) people. There's many radfem doctors and stuff and we need to band together at this point.

Electrical-Demand-24

1mo

A women’s hospital would be amazing wtf. It sucks that the closest thing I can think of is a GYN/OBGYN office with only female staff like mine. They’re great, but comprehensive (not just reproductive) women-only care with a specific ethos to always take patients seriously would be so cool.

alkebulanu

1mo

yup exactly! there's a women's hospital near me that is reproductive + a few extra things (like bones for some reason) but we need a general hospital that's just for women/ofab ppl. with only female staff, from hospital CEO to the janitors

krispy-wu

1mo

Bones is because women develop osteoporosis at an exorbitantly higher rate than men especially as they pass menopause due to the hormone imbalance that happens in women during this unavoidable time we will all experience at some point in our lives.

alkebulanu

1mo

oh that makes a lot of sense, tysm. so it seems it was a hospital for women specific things

shimmeringmoss

1mo

This is so important! Make sure you have access to all your blood panels (usually available through a patient portal but sometimes you might have to ask for paper copies) and make sure you know to read and interpret simple ones like CBC, iron, and thyroid panels. Don’t just rely on their knowledge, especially if you aren’t getting anywhere with your doctor. There are many walk-in labs that you can request your own blood panels from (Quest, LabCorp, etc.) and you don’t even need to get a referral from a doctor. I don’t think insurance will cover them, but if your doctor refuses to run a certain test you’re asking for, it’s a great option.

Renarya

1mo

Sounds like a great idea.

LimoLover

1mo

I've been told if when they dismiss you you say "ok but I want noted in my file that I requested this specific treatment/test and you have refused." That the doctor will often think twice and give you what you need!

shoshana4sure

1mo

Both female and males are sexist against women.

Bitchbuttondontpush

1mo

Be as difficult as you need to be. Fuck what they think of you, you’re there to get better not to find new friends. When I gave birth, I wrote a militantly worded birth plan and my husband said ‘they’re gonna be afraid you’ll sue them if they do not comply’. I said good, I rather be not liked but at least they’ll treat me with respect then being agreeable and having my boundaries violated. I see health care providers not as some kind of special saints as they’re often portrayed, but as providers of a service that I’m paying for, either trough my taxes, insurance or directly from my bank account and this means I will treat them with as much respect as I treat any waitress or my hairdresser, or whoever with because respect is one of my core values, but in return I expect the same amount of respect for me, my body and the issues I’m sharing with them.

Speak up, take up space, remember that as long as you’re polite, you can say and disagree with anything.

Impossible_Most5861

1mo

Are you in the UK by any chance? If so, NICE is your friend (and for anyone else in the UK).

https://cks.nice.org.uk/topics/polycystic-ovary-syndrome/diagnosis/investigations/

This is the protocol GP's should follow to obtain a diagnosis. At your next appointment highlight these NICE guidelines when they try and fob you off. Ask them why they won't follow them.

This can be done with any suspected condition.

Good luck 🌸

Renarya

1mo

Not in UK, but I'll take a look at it anyway. It might still be useful. Thank you.

gold-exp

1mo

My best friend has two kidneys working at below half function because her doctors didn’t believe her and told her her kidney tumor was “probably nothing serious” and refused to test it on the logic of “just trust me ur fine bro”

If anything happens to her I’m never going to let those doctors sleep again. I’m so sick of medical neglect towards women.

Slow_Still_8121

29d

I saw this mentioned earlier but I order my own blood tests online yearly and get it drawn at a local lab .. and based on results I THEN decide to go to doctor if something is awry. It’s paid out of pocket, but there are discounts and promos and it honestly doesn’t end up much more than copays with insurance. It’s not legal in every state though. I’ve had so many bad experiences with doctors I just can’t anymore . My brother in law is a doctor and after he dismissed symptoms that turned out to be a severe kidney infection as “psychosomatic “ I refuse to go to male doctors unless it’s an emergency. I’m a logical person who is an engineer and even that didn’t grant me basic respect .. ( not like your profession should grant you disrespect just saying ). I’m still just a hysterical woman imagining things from this imaginary stress I must be having .

HatpinFeminist

26d

Ask them to document what they just told you in your file as "doctor refused referral for treatment/test". Be extremely direct and take things as yes or no only. You: "Id like you to document that you refused". Doctor: "I didn't refuse I said insert bullshit here" You: "Id like a copy of the referral then/can I schedule my test with you or at the front desk"

Huge hint: never ever explain yourself. It will give them a foothold to gaslight you on if you do. I have an easier time with this because I'm autistic and can take things as yes/no very easily when I'm not masking.

I'm making a note to put together some helpful phrases for women to use with healthcare workers.

SillyBreadcrumbs666

21d

ER doc:"you have polycystic ovaries." GYN:"They're not cysts, they're follicles, you're fine. Come back in a year."

This is not the first time cysts have been notated, but when I went for a followup visit to get scanned, she just did a pelvic exam and said I should be fine. I think she looked at the CT scan from the ER? I don't know how else she claimed that they were follicles. I was extremely sleep deprived that day so I didn't have time to be like, wait you aren't going to give me an ultrasound? 🤦‍♀️ I'm exhausted from advocating for my other medical issues to be taken seriously.

I don't have any suggestions but I just wanted to say, I'm there too and it sucks.

tabbygallo824

22d

I suffered for 2.5 years with palpitations, uncontrolled bp, shortness of breath, severe headaches, chest pains, gastro issues, sinus issues, and apnea, and all of these things developed within a 6 month period.

I had tons of tests, but nothing showed up. I was put on meds to control bp and heart rate. Neither med really worked 100% of the time, and i ended up in the ER 4 times with hypertensive crisis. Most days, I was still having chest pain, fatigue, headaches, and just generally feeling awful and afraid to do anything.

Every specialist and ER doc I saw gaslit the fck outta me saying that because the tests showed nothing wrong, that I had anxiety (it's always anxiety, right?) and that I needed to "calm down so that the meds could work."

Fast forward ... finally saw a nephrologist / htn specialist who took it seriously. He was pissed when he found out all they kept trying was raising my current meds.

In a 20-minute convo where someone actually listened to me....

He knew right away it was all related. It was central nervous system dysfunction due to having undiagnosed (and improperly treated) post menopausal adrenergic pots/dysautonomia. A single med change and every single symptom resolved. Yes. All. Of. Them.

I do still take a bp med and something to keep heart rate down, but they are working, bps 110s/70s, normal pulses, but the real miracle is no more breathing issues, apnea is GONE, sinus issues gone, GERD gone...

Wasted 2.5 years of my life feeling like a bag of garbage and missing out on things because these doctors insisted on gaslighting me and telling me it was anxiety and all in my head.

You have to be your own advocate for your healthcare when you're a woman. 110%