I have CRPS—Complex Regional Pain Syndrome. It’s one of the most painful conditions known to medicine. Mine started after a knee dislocation. Instead of healing, it turned into constant, burning nerve pain that spread through my body. It’s been over a year now, and I am mostly bedridden.
I’ve been through dozens of appointments, specialists, emergency visits. And the pattern is always the same: they don’t believe me.
I’m a woman in pain, so I must be anxious. Dramatic. Depressed. I must not really understand what I’m feeling. I’ve had doctors roll their eyes. I’ve been told to “breathe through it.” One told me I was “too focused” on the pain.
So I started bringing my husband.
And then… they believed him. Not me—him. The same symptoms I’d described for months were suddenly serious when a man repeated them. But instead of acknowledging both of us, they’d start directing the conversation toward him, as if I’d become the unreliable narrator of my own body.
Being a woman in pain feels like being on trial in your own body. You have to defend your symptoms, your tone, your emotions. If you cry, you’re unstable. If you’re composed, you can’t be hurting that badly.
And if you’re a mother? The guilt is relentless. My daughter wants to play, but even her touch burns. I’ve lost everything I used to be: my career, my mobility, my self-image. And I still have to beg to be taken seriously.
I’m writing a book about all of this—about CRPS, about what it means to be a woman whose pain is dismissed until it’s too late. I’ve left the link in the comments if you’d like to read or support.
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That really sucks and I’m sorry they’re treating you so poorly. You deserve better
Have you ever read “the sound of a wild snail eating”?
this post fills me with so much rage. op, you deserve so much better than this bs treatment
I recommend Unwell women by Elinor Cleghorn! Also Doing Harm, Invisible Women and The Pain Gap. There’s a lot more on this topic than there used to be. Hopefully that helps implement change.
I started taking my husband to doctors appointments – you know, so he can explain that the chatle is broken! Within a year, my health is drastically different.
I now have periods every month, which I haven’t had since my teens (I’m 44). I’m ovulating, which i don’t think I ever did apart from once in my twenties – both due to pcos.
Now my joints don’t ache just lying in bed anymore, and I feel physically more able than I have been for probably been for 20 years.
I have had countless tests and scans to check there isn’t something more serious going on.
I am physically healthier than i have been for decades all because I started taking a man to my GP (who is a woman) appointments and then later when I got them my hospital ones.
IT IS SO AGRIVATING AND DISGUSTING that this is a thing.
I’m so sorry for your pain and struggle. I truly understand and empathize. Life as a young woman with chronic pain and chronic illnesses is often so difficult. It’s hard enough to just live with the pain. But then we get treated so badly by doctors. I hope you’re able to find effective treatment and/or meds for your pain.
If you haven’t already, check out the chronic pain sub. We’re a very supportive community of fellow pain sufferers.
I am so sorry. This fills me with so much anger.
Have your and your husband thought about calling out the professionals? Like “oh wow! So happy you guys are getting to the bottom of it now that I’m here!” -Op’s Husband. Or something like that.
Check out the Lady’s Handbook for Her Mysterious Illness. All this.
My pain was also dismissed for months. I would be in the fetal position and throwing up and they couldn’t find a cause. I spent a full week in the hospital getting tests. They tried diagnosing me with abdominal migraines. A diagnosis that only happens when they dont have answers. I threatened to leave the hospital. They brought in a surgeon who was going to do an exploratory laparotomy. The guy takes a look at my tests and scans that they did, find a small umbilical hernia. Months of pain fixed with a small surgery. I’m so sorry you’re going through what you are and I hope you can find relief.
I’m so sorry. I went through this with my arm/wrist, but at least mine was mostly resolved. I lived for 2 years with a dislocated wrist following an elbow injury (Essex lopresti that the initial doc didn’t catch). I saw several doctors and was repeatedly told it was referred pain, I needed more PT, was I just looking for pain pills…?
I finally took my husband with me and he got the doctor to x-ray and lo and behold, dislocated.
I’ve worked in health-adjacent fields most of my career. I’ve read the research and know that women’s pain is ignored/downplayed. I know how to advocate for myself, and I still struggled. I feel awful for the women who don’t even know to fight or know how to fight.
This is such a horrifyingly common shared experience for women.
I’m so sorry you’re dealing with this.
Not exactly the same but I deal with pretty debilitating nerve pain too and it is awful.
I’m validating everything you said. Doctors don’t take it seriously. You feel endless mom guilt.
What medications have you tried for it?
You sure it’s not just your period?
I got diagnosed with having CRPS way back in 2008. initially, it was just contained to my right leg (knee area mostly). unfortunately, due having GBS and then developing CIDP, the CRPS has spread to the majority of my body leaving only 4 fingers unaffected for the most part- middle, ring and pinky of the left hand and pinky of the right hand.
I also was given diagnoses of central pain syndrome, hyperalgesia and allodynia. the best two treatments that I’ve found- dilantin (traditionally used as an antiseizure drug) and dosing with steroids (for what it’s worth, I also have adrenal insufficiency but occasionally getting placed on hydrocortisone tablets and following similar dosing instructions for what comes with a medrol dose pack but for 5mg hydrocortisone) could help. additionally, I also had decent relief when I had a round of 12 lumbar sympathetic nerve blocks done at 3 a week for 4 weeks under sedation (it presumably could be done without sedation but I wouldn’t, they walk a long needle from your side to the sympathetic chain of nerves of your lumbar and you really don’t want to move- of course it’s done under live x-ray guidance. the other thing that helped me substantially was having a spinal cord stimulator placed. it felt like a tens unit but better.
and I really know that this sounds messed up and super cruel to do to yourself but it really will help (especially for playing with your daughter)- get working on desensitization therapy. rough washcloths, soft washcloths, warm water, tepid water, cool to cold water (nothing over warm water for a bath for daughter and nothing colder than water coming out of the fridge after being in the fridge all day or night, maybe occasionally dunking in ice water). playing with uncooked rice and rubbing that over the affected area. Basically, playing with anything that makes you want to pull away- try different clothing textures. pretty much if it makes you want to pull away- don’t. just lean into that feeling. your nerves won’t like the ssensation but continuing to do the activity will “force” the nerves into some semblance of ssubmission. You really don’t want to allow your nerves to become hypersensitive to touch. And you could try using a otc tens unit. Amazon has them, I have a tens 7000 unit. If you like it, you can consider getting a rechargeable unit. And if you like the sensation of the tens unit, try walking around while wearing it and perhaps playing with daughter. Tens therapy is like surface nerve distraction.
I didn’t have anyone else really available to speak up for me other than my aunt who is a nurse. She told the doctors how the pain was affecting my movement and my ability to performing activities of daily living and range of motion. She didn’t bring how I felt for how the pain affected me, she used my vitals that she took religiously before, during and after all activities that I was trying to do to maintain control and function over the pain. And don’t be like me- don’t let the affected joint to freeze up and atrophy. Keep moving it. Using tens therapy ought to help.
Gentle mental hugs.
I am sorry, OP! I completely feel a lot of what you have experienced, as far as listening to the husband. I have chronic illnesses/autoimmunes, and I literally try bringing my husband to every appointment and time I face the ER. They believe me more if he is present. I even had a cardiologist for a while that I hated going to because he would literally speak mainly only to my husband about my condition to him, ask him questions and I am sitting right in front of the doc. Like, “Hello? Do I exist?”
That is all so infuriating, and I wish it didn’t happen for you!! Nobody wants to be dismissed and over because they’ve owned a uterus. I will never understand, and I wish it didn’t happen for you or any of us.
Have you tried smiling more?
/s
Different diagnosis, same experience.
One trick I’ve found useful is to describe life skills I am no longer able to do:
“I can not groom myself since I am no longer able to grip a toothbrush or comb”
“I can not stand long enough to cook pasta.”
“My hands and wrists can not type and am therefore falling behind at work.”
By contextualizing my pain and symptoms against daily life tasks, it someone makes them more “real”… what a pity my value is measured by my labor.
I hate to hear that – I also have CRPS! Join us at r/CRPS for more support!
Not nearly as bad as You, but I finally got diagnosed with classical like Ehlers Danlos Syndrome finally at 30, after 30 years of dislocations and pain. One dr. Told me to take a Tylenol and walk 10,000 steps a day, which was a change from the usual referral to a shrink. I used to vomit multiple times every morning sometimes for 2 hours. After 15 years of going to every gi I could, I gave up.
Only when my husband moved in, did he notice and say “this is not normal.” He went with me to a new gi, and after elimination diets some simple gi meds, I can eat cheese again and no longer have to worry about getting up 3 hours later for nausea. Same issues I had had for years, but because he said it, they actually believed my symptoms.
Brought my Fiancee to the ER with me after dozens of appointments and specialists and being told to breathe and stretch it out too…… I have a ruptured disk and need surgery. Of course the moment he was with me I was getting meds, tests,and the answers I’ve begged for for months! These systems are so rigged against us “dramatic” “anxious” “hormonal” women its insane.
I’m so sorry. I know what you mean though about bringing your husband. I bring mine with me for every appointment I can because if the doctor seems like they don’t believe me my husband backs me up.
I’m so sorry this is happening to you, and to women everywhere. Having the same issue with hip arthritis, the doctor says it’s not that bad but I can barely walk without swearing. I’m bringing my daughter to the next appointment, she takes no prisoners, and if she’s wearing her scrubs she’s automatically taken seriously. Even though she’s a vet tech and her scrubs top has the logo and she’s usually covered with a fine layer of dog/cat fur.
This happened to a friend of mine. She has a similar condition that leaves her in constant pain and only began to get doctors’ attention when she brought her husband with her. Now she just brings him every time she needs her prescriptions refilled because she knows they’ll trust the man who vouches for her over her more readily. They both hate it.
It took me 2 decades and bringing a man to my doctor’s appointment before I was finally referred to a specialist. 20 years of “it’s anxiety”.
I’m so sorry this is happening to you. I’m a cismale married to someone with chronic health conditions and my experiences with doctors has been the same.
If I’m not in the room with her, they tell her it’s all in her head. And if I am there they ignore her and talk to me.
The number of times I’ve had to look a whole grown-ass medical professional in the face and say “I’M NOT THE PATIENT” is insane.
I’m so sorry
Dear god…this sounds awful.
It’s a real shame to hear that this still happens in our day and age.
Something that has been disturbing me is these “pain programs” for treating CRPS or AMPS in kids (similar programs exist for adults too). The patient population is mostly girls. It is basically built around the idea that thinking about, talking about, and worrying about pain is what’s making it get bigger and worse. And that people in pain benefit from inhabiting the “sick role” where people care for them. So they basically force the kids to do intensive physical training and do stuff like use a rough brush on their skin to desensitize them, make them give up all mobility aids, nasogastric tubes, etc, and they are forbidden from talking about pain and parents are trained to ignore them, told their kids will try to manipulate them, and ordered to force them to go to school when they’re in pain. They are told to do this for the rest of the kids life. The PTs are often extremely harsh and girls have described being berated, abused, and threatened when they struggle to complete the exercises.
They are also taken cold turkey off of any medications that affect the central nervous system. Antidepressants, pain drugs, benzos, anti seizure drugs. And are often not permitted access to rescue medications like for migraines. Any other conditions they may happen to have are wrapped up into the AMPS or CRPS diagnosis and treated as psychosomatic.
Kids learn that the only way to graduate from the program is to lie about not being in pain. So at the end when they’re asked “are you all better now” they say yes and the program thinks they worked so well.
All of this is based on a study that had a huge loss to follow up meaning they couldn’t assess long term outcomes in like half the patients.
The programs unfortunately do not always do a great job of making sure that there isn’t an underlying missed diagnosis that explains the pain and can be treated (or could be made worse by intense PT.) some go on to find out they have endometriosis, connective tissue disorders, etc. God forbid a kid, who is often medical
Perhaps there is a kernel of truth in the idea that the way you think about and relate to your pain affects how bad it is. Certainly stress also impacts how we experience pain. But i just don’t see how institutionalized gaslighting and making kids feel helpless and tortured, and also training them to push through anything when their bodies are screaming “no” is going to be healthy in the long run. Like that sounds traumatizing. And literally things that increase the likelihood that a difficult experience will cause ptsd are a) not having agency b) feeling trapped or exposed to the point of exhaustion c) not having support or help from your trusted people (parents) after a difficult experience. These programs literally institutionalize those characteristics.
Sorry for the rant. I’ve never been in a program myself but I’ve read enough to feel disturbed. This just really infuriates me. Why is being mean to sick people always such an attractive idea to healthcare providers?
I went undiagnosed for over 20 years. Sent to a psychiatrist and was taking 6 different medications because all the male doctors said it must be “anxiety”. Ended up moving and my new pcp is female. She ran 1 simple test and 3 months (and 1500mg IV iron) later I was a completely new person. Additionally the cause of my low ferritin is due to heavy periods which all the male ob/gyns over the past 20 years dismissed as “with in normal”. I bled out that 1500mg of iron in 9 months and I’m getting ready for my next infusion. NO, that is NOT within normal!
I have lupus and until they found the right medication, nothing was working and I was very afraid of ending up with a fibromyalgia diagnosis – not because that’s not real, but because it’s a cul-de-sac and I was afraid they’d stop trying to treat me for the lupus.
I brought my husband along to an appointment so he could back me up and to my relief, it was totally unnecessary.
My rheumatologist (male) believed everything, took it all seriously. Put me on a new med which now works. My husband never really said anything, doctor just shook and his hand to introduce himself and got back to business with me.
Just adding this because there are good doctors out there like mine and we all deserve them.
It’s common. I’m so sorry. I’ve been suffering in pain for years, I asked my ex bf to go with me as I always got gaslit, he never did. He said I was an adult, we dated for 5 years and he also had a disability…
I’m so sorry this is happening to you, it happens way to fucking often, and always to women or trans/queer POCs too….. you should absolutely write a book, I think we all should and flood the market with undeniable proof we are being ignored.
You are not alone, I don’t know how helpful that is, I was in a similar boat when I developed rheumatoid arthritis symptoms at 16. No one believed me. I spent 13 years begging and crying for a single doctor to take me seriously and do more than draw blood for my nonexistent RF results. And to make matters worse I’m queer, I have a wife, so no husband to “validate” my pain.
Now my pain is way worse than it “should be” I even developed fibromyalgia because of how long my body was suffering from untreated pain. It took one test to get me diagnosed, and no one did that for me in 13 years because I was “young and healthy” when I first presented. This shouldn’t be the norm.
Isn’t this the same condition that little girl Maya had, and they didn’t believe her or her mom either. They did a documentary on it, which played out quite sadly..
I am sorry you are going through this. I cannot even fathom the pain you are going through, but I can understand your frustration. I came thisclose to assaulting a doctor before calmly explaining to him that by putting my daughter in a box, he was not being a very good doctor. Then I switched pain management doctors.
I am sure you enjoy spending all your time at the doctor’s office when you would rather be doing something fun, like scrubbing toilets or weeding your lawn WITHOUT PAIN.
Do they think they are so awesome you just wanna hang out?
I am not a violent person, but in my mind, yeah, I wanna slap some people sometimes.
You deserve validation. You deserve treatment, and an attempt to understand what is going on with your body, by a person who went to medical school for that very purpose. You deserve to be heard when you have to live with this 24/7.
On the flip side: Congrats on starting to write the book – I am going to check it out and share. I know too many women who live lives debilitated by *sh* they don’t even have a name for.
I DONATED!
Yes this is horrible and very common. I’ve been through it myself. It makes you feel very dehumanized and worthless, like someone else’s property with no voice. I am so sorry you and so many other women have gone through it too. Thank you for raising awareness.
I am so sorry. My best friend contracted CRPS just as she was finishing college, and it took her 20s from her. Years of trying top specialist doctors all over the country didn’t help. It took her forever just to get a diagnosis. She was finally able to find the right doctor to help her at Duke University Medical Center – and even more in luck, it isn’t ridiculously far from her. With his help she was able to get the pain back under control and regain her mobility.
I wish you all the luck in the world in one day finding the same outcome.
This entire John Oliver segment on bias in medicine is worth watching, but Wanda Sykes offers a solution at 22:30: if nothing else works, bring a white man: https://mashable.com/video/john-oliver-bias-medicine-wanda-sykes-larry-david
I originally developed CRPS in my knee. It took almost 2 years for them to diagnose me. Then I had a full hip and joint replacement at 26 and it caused my CRPS to spread down my leg to my toes. It can be really difficult to get a medical professional to listen to the pain that’s taking away your quality of life. I think it’s ridiculous that they listen to your husband, but weren’t listening to you the patient. I’m really sorry to hear you’re having to deal with this. Also I hope your book turns out amazing and it helps people understand chronic pain especially when dealing with CRPS . I wish you the best of luck.
When i brought my (now) husband to the doctor with me for the first time he was kinda stunned how often I’d tell the doctor like “I’m having X symptoms x many times a day/week/month and I’m not sure why.” And the doctor would be like “It’s probably your anxiety/thyroid.” (I have an under-active thyroid) and start to move on until my husband would speak up and be like “She has X symptom, x times a day/month/week. I see her doing XYZ because this symptom is affecting her QRS ways.” and SUDDENLY it’s “Oh, wow, yeah that DOES sound like a problem, let’s order some blood work.”
The doctor for me is horrific, I have a fear of medical needles but I have multiple facial piercings, and nurses are SO FUCKING MEAN to me about it. I literally told my last nurse when I was going to get my blood drawn “Hey I have a really big fear of needles so can we just not mention the needle?” And she was like “Ofcourse! So many people are scared of needles I totally get it!” then like not even a minute passed and she was like “Your veins are so tiny! I’m gonna have to get a butterfly needle, we use those on babies.” and I was like “Let me out of the seat.” and she was like “Oh, it’s fine, really!” And my husband literally was like “She asked you NOT to do exactly THAT.” and actually helped me out of the seat and we left.
That was two years ago and I still have never gone back to get my blood drawn. Do I know I should? Yeah. But medical professionals constantly make me feel like shit, invalidate my fears, or act like I’m personally the biggest inconvenience they’ve had to deal with and I’d honestly rather die than be treated stupid by the people supposed to be providing me care.
I have an almost 3 year old. My fibromyalgia pain has skyrocketed since pregnancy and having a c-section. But every time I complain about pain, brain fog and fatigue it’s always, “oh you’re just a new mom! This is normal!” As if becoming a mother has suddenly explained away all ailments. Sorry, not sorry, but any amount of pain is NOT normal. I’m so sick of the “just lose weight/you’re just anxious/just get more sleep/you’re just a tired mom” rhetoric that women face. It’s fucked. So I can definitely relate to your frustration. I’ve thought about taking my husband with me to appointments, but then I just get furious that it’s even a consideration.
For those without access to an on demand white male, they can be rented
My girlfriend has been through a protracted ordeal of trying to properly diagnose and resolve chronic migraines and I’ve had to constantly push her to reject the “maybe you just have to deal with it” line and demand better care, fighting her strong anxiety about confrontation. And the only reason I have that instinct is watching my mother turn into a pitbull when my father was being neglected as a cancer patient in hospital.
The medical system should not require you to be a pushy, confrontational person to get the care you deserve if you don’t happen to fit into the exact profile of person doctors have been culturally trained to respect!!!!
I get this, feels like you have to convince them of your symptoms just so they care. I had a stomach ulcer for 6 years. No h. Pylori but it was 2mm wide. I was in so much pain. Family has a history of ulcers too. Then I didn’t get diagnosed with migraines until I was 25.
Male privilege is real.
I’ve had this happen as well, also for extended chronic pain that it turns out was treatable and can be managed. But thanks to them for dismissing me for 5 years while my life was basically on pause because of the pain. I still don’t have a diagnosis. The funny thing is my boyfriend is kind of a flake and him being there literally does not help me at all because he won’t remember anything or give it half as much care and concern as I would. Yet the doctors respect him more. So messed up.
For anyone male or female, it helps to bring a loved one to an appointment. I do this for my husband as he was having similar issues to you not having his pain taken seriously.
Me: heads to emergency room because my strep is so bad I’m can barely swallow.
Me: I also have laryngitis. I squeak out that I can barely swallow, cannot take the antibiotics prescribed, cannot swallow water, I am dehydrated and miserable.
Doctor: ok let’s get you some antibiotics and Tylenol.
Husband: she just said she can’t swallow, she can’t take pills, she can’t swallow water. She’s already on antibiotics, she started them day before yesterday. Please help her, she is in a lot of pain and dehydrated!
Doctor: oh no, thanks for letting us know, husband! Let’s get an IV going and some steroids.
Me: wtf
Husband: wtf
Something similar happened to a friend of mine. She was answering her doctor’s questions and he didn’t seem to believe her symptoms/answers. He requested speaking to her husband who backed up everything she told the doctor. She was so pissed. Why did he need to speak to someone (a man) who wasn’t even his patient?!? Misogyny is the bane of existance.
a lil offropic maybe: i work in psychiatry (im a children therapist) and i love our doctor there. he makes jokes just about anything. the only thing he does not joke about is women. he is ok with treating a pregnant 17 year old, to spare her from having traumatic birth events and receiving proper care while going through an unsupported pregnancy and postpartum. he offers leading positions to young women, because im his perspective there are too many old white men decinding in the klinik. but most importantly to me he apologizes to female patients because theres no research on womens bodies. every time he prescribes a pill he says „we have to go gentle because we do not have good data on how the body of a women behaves. im really sorry this is going to take a while to do effects, but i do not want to cause harm.
and i love it as much as it infuriates me than he has to be that carefull treating young women.
I always bring my husband to appointments, and I work in health care. When doctors hear I know their terms, they get worse to me, not better.
Sorry for the length but I feel this so much! Thank you for your post.
I have CRPS as well and it was caused by another painful condition that is not well understood-tarlov cysts. They are not well understood likely because it affects women more of course. And if it’s a pain related issue it must be in her head or she’s a drug seeker!
I am so incredibly intrigued and interested in your book. I had/have tarlov cysts that disabled me and caused the nerve damage leading to the Crps (entire left leg). I have been in and out of being bedridden with my life plans and family suffering as well.
My tarlov cyst surgeon (Dr. Frank Feigenbaum) is one of (possibly 2 or 3) doctors in the world that take that issue seriously. He developed a treatment when he saw so many patients dismissed and gaslit by others. When I met him they had already unnecessarily removed my uterus. Dr Feigenbaum informed me that the majority of his patients are females who have already undergone an unnecessary hysterectomy because the GYN community is unaware of the condition and how it presents in women specifically. He presents to GYN conferences now to help inform them.
I keep fighting and keep getting knocked back down because of the systemic sexism in medicine and my own worst enemy (my failing body). I am thankful to have found attentive, competent, and supportive healthcare providers but it can take so long to find the good ones. This is especially more difficult when you suffer from chronic illness and chronic pain.
I’ve definitely experienced the most insane gaslighting from female providers as well. The situation in healthcare is that dire and ingrained in society.
I believe you. I hope you can cuddle your daughter again soon. I believe you.
I am SO FORTUNATE that in January I went to urgent care and was taken seriously. I had terrible stomach pain and was no longer able to keep anything down (including water). The intake nurse AND the doctor (both women) believed me at face value and sent me straight to ER. I went into surgery less than 5 hours later.
The pathetic part was that I kept thanking them for believing me / taking it seriously when I said the pain was 9/10. I was so prepared to have to fight for myself that I was grateful when they took me for my word. I know compared to so many women I hit the jackpot that day, but I thought I’d share one instance, at least, of medical care professionals doing right by their patient.
I’m so sorry your going thru this. I recently had a similar experience, I have chronic coccydynia and my new pain doctor and essentially told me that my pain symptoms don’t align with my condition (pain with movement from rising from a seated position to standing in addition to sitting).
All I’ve been getting is steroid injections that ironically his haven’t worked. I’ve been told my reactions aren’t normal and that it should have worked. Even though we knew the first injection didn’t work and we discussed increasing the steroid which wasn’t done the second time with no effect.
So I’ve been told it’s in my head, and I should relax and it’ll go away even though after 3 years it hasn’t. My husband has offered to come with me but honestly, I shouldn’t have to have him to be taken seriously. It’s awful and disappointing that people feel that they have to go to certain lengths to be taken seriously.
I too have CRaPS, I’m so sorry this is your reality as well.
It has been a long journey, some of the things that have helped me are CBD in high doses, THC for pain, ketamine topical compound and a diet that combines a keto and anti-inflammatory approach.
Gentle hugs sister.
Same. I bring my husband to my neurology appointments to get treated for epilepsy instead of getting consults to mental health for anxiety.
If you tell them this on the comment cards that they usually give you after being at the hospital. Admins care a out that quite a bit so it may help people in the future so this doesn’t keep happening
Im sorry. Thats terrible.
My (42m) wife (45f) is chronically ill and I had to start going and getting involved with her as well.
I’m sorry women have to go through that. I’m sorry you had to go through that. It’s demeaning and it’s bullshit.
What’s interesting to me as a nurse is that women always have a higher pain tolerance in my experience. So if a woman says they’re in a lot of pain it’s usually more accurate. Men can’t handle pain and are, quite honestly, big crybabies.
So when doctors dismiss it, it’s extra annoying. Like no, the woman’s pain should be taken more seriously.
Not denying your experience at all (since I’m a woman who has had the usual sexist crap dealt out over the years) but it could also be that having an advocate in the room helps in ANY medical situation.
My son had a severe leg injury some months ago and has ongoing and life-impacting pain; as a young adult he was quickly deemed to be ‘drug-seeking’, and refused adequate care. When I started going to consultations with him, the approach changed radically and he is now getting the support he needs.
His previous experiences still stemmed from stereotypes (in this case of young people), but having a witness present, who can confirm the impact of a medical problem, gives added weight and can help shift any imbalances of power and responsibility. But yes… damn and blast those toxic presumptions.
I just want to stop and say i see you.
Thank God! I got really lucky with an orthopedic surgeon that listened when i spoke about my back pain. My obgyn ignored all the warning signs. It turned out that i had ruptured a disc in my spine (no, not just normal postpartum pain) . The MRI looked liked a water balloon had popped in my spine.
He did make me wait 4 years , until my kid was out of diapers. Because you can’t lift anything more than a soda can for several months. I wasn’t critical so we could put off the surgery. I struggled for the whole time but i was functioning.
But my youngest was out of diapers in July, In August surgeon started the approval process for spinal surgery. In October he placed a metal cage in my back. I have my life back.
A doctor who listens is worth the weight in good. My husband has a nack for finding medical professionals that will investigate your issues. Anytime i need a new doctor, i make him pick because he just finds these people. It is like magic.
I went to the hospital with horrible pain and waited hours to be seen. They ran one test and told me it wasn’t “X thing” they decided to test for. They were going to send me home while still in horrific pain. I was just going to accept it, it didn’t even occur to me to push back because it never works. My husband pushed back and they agreed to test me for a UTI. Except the last test they did required me to empty my bladder minutes beforehand. They told me to chug water until I could pee. I asked if it would affect the test, but they insisted it wouldn’t. The test was false and then I explained my urine would be fresh and dilute so they agreed to send it for a more involved test; weren’t going to do anything in the mean time. My husband pushed for antibiotics. Which they gave eagerly when he pushed. I did have a UTI, the dilute urine masked it like I suspected and it’s been so bad it’s antibiotic resistant and I’ve had multiple rounds.
I had endometriosis and repeatedly asked for a referral to a specialist. After two years of begging I got my referral – to a SOCIAL WORKER, because I was clearly over reacting, possibly malingering. I got home in tears and completely defeated, so my husband immediately made a new appointment for me for the next day. When the doctor came into the exam room, he read her the riot act.
And that’s how I *finally* got a referral to a specialist so I could get my endometriosis treated. Just one man’s opinion required.
I’m 40 and take my 70 year old father. Because what the hell would I know right?!
I remember when I first brought my partner to the doctor with me after he moved here (we were long distance). It was just an urgent care visit, I don’t even remember what it was for. I was completely fine with the appointment (provider was a woman). We got home and sat in bed together and he burst into tears about how she treated me and was condescending and treated me like I was an idiot. It’s really fucked up because I was like “at least she treated the issue” and he was like “YEAH BUT SHE WAS A BITCH ABOUT IT!!!” I realized I got used to being treated poorly and it broke my heart that he cried about it. I’m a woman, plus size, have complex issues that make doctors immediately think I’m some grifter, and I look very “alternative” with tattoos and piercings. It has been very rare to feel like someone actually sees me and not my supposed “red flags” like my personal expression and unfortunate health conditions. I plan to bring my partner to any appointments I can because it definitely does help. It’s so frustrating navigating our health as women.
I understand and am sorry you have this horrible condition.
Ten years ago, I suffered nerve damage in my right foot. The pain was unimaginable. It went on for many, many months. I lost weight and felt suicidal. I was finally diagnosed with CRPS.
After 3 operations, electric shock treatments to my leg and foot, countless pain medications, 9 spinal injections, the doctors said they could do nothing else for me, and I would have to be on pain medication for the rest of my life
.
Someone finally suggested acupuncture. It changed my life. Now I am practically pain-free and can sleep and laugh and walk my dog every day. I am so grateful. The pain “wakes up” a bit when it the weather is really cold or very hot, but I head to a acupuncture practitioner and it becomes manageable.
I do hope you find a treatment that brings relief. No one should have to suffer the unremitting torture of CRPS.
Thanks for the reminder that I, a nurse, need to ask my husband to come with me next appt. My doctor isn’t addressing a damn thing. Grr.
I’ve had CRPS (thankfully in remission) affecting my hip, and that pain is no joke. I went to a number of Dr’s, and it took over a year before I was even diagnosed. If possible, try going to an orthopedic doctor at a medical university. They were the ones who finally took me seriously. P.s. I’m not sure it would be the same for you, but the only thing that seemed to help with my pain was acupuncture. Hope your nerves reset faster than mine did!
I went through this with cancer. They even used a different tone of voice when my boyfriend wasn’t in the room. People didn’t believe me. Now I record all of my appointments without telling them. If they want to lie, I can keep records.
I’m sorry you’re going through this. I believe CRPS is what I’m going through as well. If you have any tips on how to get actual help, aside from bringing a man, I’d love to hear it.