AIBU to ask what you’ve had to do to get a doctor to take your pain or symptoms seriously?

On being so unwell I couldn’t walk I talked on the phone to a male GP in my practice who sneered at me, told me I was making a fuss, that I had seen the best doctor in the country for a treatment I’d had, a treatment that hadn’t worked. I stood my ground to get an appointment with another GP in the practice, this time a female one. She referred me and I was diagnosed with a serious long term condition after spending 2 weeks in hospital.

I make an appointment before things get too bad, if necessary by over-stating the pain. As always, you get completely fobbed off the first couple of times, but by drawing a line in the sand by having an appointment on record, they take you more seriously when you get another appointment a few weeks later, and again a few weeks after that. Shouldn't be that way, but you have to play the game when it comes to the national fob off service.

We learned the hard way with DH who must have been for a dozen or more GP appointments over a couple of years, constantly being fobbed off, until he finally saw a random locum who actually listened and referred him for a specific blood test. It turned out he had a rare cancer and all the symptoms, pains, etc he reported to the GP over those two years were clear signs of his specific cancer - succession of GPs simply didn't take him seriously. Morons! It's not as if he was a regular beforehand - probably no more than a single appointment every 5-10 years so they should have realised something was wrong when someone they barely see suddenly starts making appointments, almost monthly!

After that, we both "play the game" if necessary and it works a lot better. They can't fob you off (and more importantly can't justify fobbing you off) when you've made repeat appointments for the same thing.

Paid privately. I’ve put a letter of complaint to the surgery

i’m taking DH to my next gastroenterology appointment as I feel I need a man there to be more forceful - I felt very dismissed at my first appointment and wasn’t given any opportunity to ask questions after test results were given.

I’m really struggling but the GI says ‘we’re not worried’ ok, I may not be dying but my life is massively impacted from this and I need some answers - even try first level treatment to see if it
helps.

Also had a seizure and loss of consciousness two years ago. Had already experienced some weird symptoms but infrequently and was dismissed. This time DH took me to A&E - don’t even ask about the call handler suspecting a stroke but saying there were no ambulances. After tests and several hours’ wait overnight the ‘baby’ Dr decides it’s cardio in nature even though I had obvious neurological symptoms. I had to put my food down and insist on a CT scan- thankfully it wasn’t anything cancerous but a few months later I saw a neuro and was diagnosed w epilepsy (tbf I have a great consultant for that so they’re not all misogynistic pricks).

DH had to call to get anyone to believe my severe PND that was causing me to be genuinely suicidal was anything more than just me being a bit down.

Sorry if I wasn't clear. It must be my black thoughts.

My crazy plan was to get some proper pain relief for the poly arthritis and rheumatic pain than wasn't just over the counter paracetamol or ibuprofen that's in my hands, one knee, both ankles and my face. Well, all joints really - and an interim script for doxycycline to control the borellia a bit so I feel strong enough to fight another day.

Not top myself.

That explains a lot!

This.

One of the most fundamental, "misunderstandings" seems to be that when you are:

In severe, sometimes chronic or long term pain.

Have had to wait ages to see somebody. AGAIN.

Tired and frustrated with having to explain and repeat what is wrong with you AGAIN.

Tried several approaches from "Oh Doctor, thou art my God" to, "Hey mate, we're all in it together, hope you had a lovely Christmas!" and everything in between.

It's really starting to affect you financially now and you are getting worried about how long you can pay the bills.

And so on and so forth...

They jump to the obvious conclusion that you are anxious and depressed.

To quote Vicky Pollard, "Well yes, but no yes!"

Round and round in circles we go on the patronising roundabout. I had it again last Friday. I've finally got my diagnosis after more than ten years. Late stage Lyme Disease and anaplasmosis.

I was getting somewhere last year but my sympathetic and intelligent, (young male) GP has left the practice and I'm having to start again with my referrals etc with a right know it all locum. (Who might get his old job permanently.)

She sees the chicken, I see the egg. Or vice versa. So we're back to anxiety, depression, and me being, "Non compliant and aggressive."

This is in France btw, so there's no grass that's greener over the Channel. I hate to think what she's written on my notes after last Friday's débâcle.

It's not the language. I've been here 26 years since I was 23 and always integrated and worked for local businesses. It might be cultural although if I can only get to go over her head to see Polish Agnetha the infectiologue at the Big Town hospital again, no language or cultural differences will seem to occur.

She's great is our Polish Agnetha. They seem to stymie her at every turn though.

I'm just going to have to bite the bullet and pay up to her privately aren't I?

I'm still seething really. The best part was when after about fifteen minutes of being at completely cross purposes, me trying my best to as said previously, explain and repeatedly explain.

"Do you have black thoughts? Do you have suicidal ideation?"

"NO!" (I sounded like Ian Paisley then. I momentarily gave up on French.)

"We can get you a pretty little treatment for your morale. And social worker."

"No thankyou."

"Let me examine you." She took my blood pressure over three layers of thermal vest, thin jumper and thick jumper, then saw me pressing my face and eye sockets in desperation and Lyme related neuralgia and alighted on a new diagnosis.

Sinusitus.

So, crazily, I do actually have some antibiotics which could potentially help the Lyme but it had to be for my nose ache.

I passed out in A&E at 3am after five and a half months of telling my gp I was in pain and it was getting worse. By the end of 5 months I had a raging abdo infection and sores all up my back.

Then having an emergency op to remove an ovarian dermoid the size of a grapefruit, losing an ovary and tube, and spending a week on women's surgical and 6 weeks off sick.

My then GP finally came to see me and said "So there was something wrong with you". He couldn't bring himself to apologise though. Patronising arrogant tssr.

I was told for years that my pain was due to stress and poor mental health. Later on I was told my ill health, fainting, fatigue etc was anxiety and depression. The migraines? Oh stress.

I have since been diagnosed with hEDS, POTS and chiari malformation. I ended up in a wheelchair.

https://cks.nice.org.uk/topics/migraine/prescribing-information/drugs-for-the-prevention-of-migraine

I also take NICE guidelines into appointments with me as needed 😂 But these are the main four the NHS use. They didn't work for me, but I had to get through the full process to get the neurology referral in the end. I've now been under neurology for the last 6 years and am down to a few days a month of attacks.

https://cks.nice.org.uk/topics/migraine/management/adults/

What infuriates me the most is the first doctor wrote on my notes that I was very anxious about the condition- and so after that, they just wouldn’t listen to a word I said

Same. Although I didn't even know they had written "anxiety" in my notes until about 7 years later. I had noticed they suddenly didn't listen to me at all, whatever I went for including abnormal bruising, bleeding etc, it's "oh dear me are you feeling anxious again?" WTF??

Now Im scared to go to the GP, even when my autoimmune disease flares up in new and wonderful ways, because ..what's the fucking point? They'll only try to give me antidepressants (all seem to make my flares worse), or HRT (even though I am well past menopause with no symptoms).

It does make me wonder if this is why so many people have an anxiety diagnosis now, its a good way to get those pesky patients to stay away..

I had extremely bad back & chest pain a week after an operation. Drs said it was probably indigestion. The next day dh called for an ambulance for me. It was a blood clot on my lung. I'm very lucky to be here.

I have been keeping a daily record of my pain for the past few weeks. I describe the intensity and the impact. I will be sharing this with my doctor very soon. I will see if it helps get them to listen to me and will report back.

Went to A&E with stomach pains and other symptoms.

Senior nurse (female) was convinced I had a hangover. Kept going on about the half bottle of wine I'd drunk 36 hours before (with a meal). No way I had a hangover. She smirked as she gave me some Gaviscon. Sent me home and told me to eat something.

I collapsed in the waiting room and was admitted with an appendix that had started to rupture

Yeah, same.

May I ask what the preventative meds were? I ask as I too suffer and it's debilitating.

Went private. Luckily, I already had health insurance, and only went for a referral for them; my GP actually refused.

So I paid for a private GP who referred me without question. Saw the consultant four days later and was operated on less than two weeks later

and it saved my life.

This was 25 years ago. The GP said he didn’t agree with private healthcare so wouldn’t write an open referral for me, and said it was all in my head and the only person he’d refer me to was a therapist. I was, infact, ill. Obviously I took the complaint all the way once I was on the mend. Absolute fucker.

I repeatedly went back over a period of 13 years.

Eventually I got an initial diagnosis, but that too was shambolic and didn’t come before being sent for the wrong diagnostic procedures and repeatedly gaslighted. When I got my initial diagnosis of endometriosis, the consultant failed to ablate it during the laparoscopy as promised. I was then put on Prostap without the serious side effects and long term effects being properly explained to me, misdiagnosed & treated me with antibiotics for an STD I didn’t have (I did eventually receive an apology letter, but only after I’d taken a full course of antibiotics I didn’t need), and discharged with no ongoing care or oversight after the Prostap treatment period ended. I begged the registrar for help but the consultant in charge of my care wouldn’t even come out of his office to see me.

In 2015 (16 years after my symptoms first started) -
after crawling out of the bath on my hands and knees into my bedroom during another debilitating period - I decided to go private. I was diagnosed with adenomyosis and my endometriosis had progressed to stage 4.

If I’d been diagnosed as a teen it could have been treated early and perhaps better controlled, instead of running rampant. As it is, I’ve had to change a career I worked bloody hard for and am in pain every day.

In short, persevere for 14-16 years while my condition worsened and eventually resort to private care.

-years ago I was ignored by the GP practice (I was 20- something and weeping with pain in the waiting room) and then within the next few days by the A&E regarding a severe eye condition. I suspected what it was because my mum had had the same condition and it’s partially genetic, which was confirmed later. Three doctors missed it before I was officially diagnosed with what I suspected from the beginning I had.

-same eye condition, another flare-up a few years later. Wasn’t prescribed my usual drops because I was pregnant at the time and they’re not usually recommended. It got so bad because of waiting that I ended up having to take the same medication for months, still pregnant, every HOUR including at night. If I had taken it straight away my condition would have likely improved within a day or two. I ended up having a cataract surgery at the age of 30, after months of being nearly blind in one eye, in my opinion due to delay in care as I was pregnant

-through the same chronic eye illness my repeat prescription was stopped by the go practice randomly at least once or twice. Whenever I asked for an extra 10ml bottle to have as a spare (eg in case the one I had for the month leaked or when I was going to be travelling) I was treated like I had a side gig selling it on the black market or putting it in my morning coffee for fun. We’re talking about potentially eyesight saving medication that costs 5-10 pounds max (that’s I actually paid for on the nhs more than private in other countries).

-birth of my first child -the gynecologist doing my stitches was a bit late so the aenesthesia was wearing off already. I was not offered more pain medication. I was screaming in pain next to my husband cuddling the newborn.

Sadly, I’ve found that the only way to be taken seriously by my GP, or even get a phone appointment that isn’t months away, is to say that it’s negatively affecting my quality of life. I picked up that tip from an interview with Naga Munchetty and, for the most part, it does work.

I was diagnosed with menorrhagia last year and it still took months to be referred. They kept trying to push birth control, blamed it on my PCOS, and told me to lose weight, as every doctor I have ever seen seems to do.

Every time my husband has brought me into the GP for an appointment there is a noticeable increase in attention paid and the doctor or nurse seems to take my symptoms more seriously.

Of course, they also direct their conversation to him, not me (“so how long has this been going on for?” … eyes firmly on DH)

I’ve also had more luck getting gynae problems dealt with by presenting them as something which is a barrier to ‘intimacy’ with my husband. Rather than them caring about any of the obvious actual symptoms - giant clots falling out of me, fainting, etc.

God, where to start!?...
😡
At 17 - being told periods lasting 2 weeks and clots the size of my palm were normal and "you'll be fine once you've had a baby"...(spoiler: no, I wasn't)
Miscarriages - a gp threw the remains of my baby in his office wasterpaper bin.
Undx iugr baby.
Told to take paracetamol at 6cms dilated (you can't be on labour, you aren't making enough noise)
Totally negligent "care" ante and postpartum
Pnd (shocker)
Honestly...I'd be here all night...
I have nothing good to say about any midwives or HVs I've been in contact with...none of them should have been let anywhere near vulnerable women and babies ☹️
The local trust is currently being investigated due to high levels of maternal and neonatal deaths.

I nearly died through 6 visits to the GP where both male and female GPs were spectacularly unresponsive and minimising of catastrophic symptoms. I welcome the work Mumsnet is doing to address this issue but I can't offer suggestions. I'm a healthcare professional myself and was clear, explicit and assertive, I also cried and begged them to help me. That didn't work either. My complaint detailed that they had severely let me down by ignoring everything I had said about horrendous pain, extreme weight loss and ultimately telling them that they were leaving me to die - which they almost succeeded in doing