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

[RhiannonEMumsnet]

Hi there,

In January we’re launching a new Mumsnet campaign to highlight and tackle medical misogyny - the all-too-common experience of women having their health concerns dismissed, minimised or ignored by healthcare professionals, often with serious consequences.

As part of the campaign, we want to shine a light on the extraordinary lengths women often have to go to before they’re actually listened to. So we’d love to hear from you:

What have you had to do to get a doctor (or other HCP) to take your pain or symptoms seriously?

If you’ve got a story you’re willing to share, please do post below and help us to show the scale of the problem and why change is so urgently needed.

Thanks,
MNHQ

For my main (back) issue, it took ten years, four ‘specialists’ and a dozen emotion outbursts from me to get a diagnosis. I am on so many painkillers I rattle, everything possible and more than most doctors are comfortable with but don’t worry, I’ve got a letter from the pain clinic saying that’s ok and keep doing the same thing so it’s all fine.

To get my diabetes diagnosis, well that took two miscarriages, sadly. The second one was dramatic, 16 weeks pregnant and I had a haemorrhage so they kinda investigated then… weirdly maybe but I was ok with that second, late, miscarriage, the first one I had (at only 5-6 weeks) was a total shock and trauma, I was poleaxed by it for two years.

To get my wheelchair and mobility aids etc has been fairly straightforward after the back issue (finally) got diagnosed!

To get a referral to a Pain Management Programme, I had to describe in some detail to the rheumatologist how I had researched the services of Dignitas. He then asked my GP surgery to refer me onto the Pain Management Programme (a primary care service apparently) which they finally did.

So basically, I had to say I’d had enough of living.

In happier news, the Pain Management Programme was very good. Talking therapy, physio, gentle movement, group talk and bonding, mindfulness, and planning for flares etc. I’d thoroughly recommend it to people who have exhausted all other avenues. It’s brought me back to myself in so many ways.

Where to start… a relative had to pay for my MRI after weeks of excruciating pain and being unable to lift one arm as neuro and MSK kept bouncing it off between them and refused to help. Only then did they agree there was a serious issue and put me through to spinal specialist.

I’ve also turned up at my GP with an A4 list of symptoms for other health conditions as was being palmed off. “Don’t you think we are doing enough to help?” Er no… because you have not actually done a single thing to help.

Been sent home numerous times (by male doctors) with ‘glue ear’ over a week and made to feel like a faker until my whole ear canal swelled shut so much that no antibiotic drops would even get in there and I drove to hospital and the consultant couldn’t believe I’d driven myself and wasn’t in tears and considered keeping me in overnight.

I have a high pain threshold so they just assume you are fine. Found a spinal fracture nobody did anything to help with either. Healed wonky.

I had many warts and verrucas, the doctor wouldn't refer me to a clinic. I asked many times as they spread, but the doctor said no funding to treat them and they wouldn't refer me. I couldn't afford private treatment. So I cut them all off myself at home with scalpels and scissors.

I think one of the issues is doctors think we are just looking for a diagnosis. I have specific symptoms that are very indicative of X Syndrome (don't want to say what as too outing). Tests for X Syndrome were negative so Rheumatologist said - there are thousands of possible causes of my symptoms and as it's not X Syndrome I am discharged.

I have other symptoms (widespread pain) which I suspect are connected to my other symptoms but nobody is joining the dots. I get the impression that the doctor thinks that I am looking for a diagnosis/label. I am only looking for a label or diagnosis in the hope it might lead to treatment.

Twice now I've self-referred for private consults after my GP failed to take my symptoms seriously, and minimised or failed to mention reported symptoms and clinical observations in referrals to NHS specialists.

On the first occasion, I'd been visiting GPs for over 25 years with odd and escalating allergic reactions, none realised (and I had no idea) that I had been having anaphylactic reactions as they weren't presenting as they thought they should, and I wasn't dead. Eventually did my own research, learned about a very rare allergic condition, sought private bloods which seemed to support my conclusion, saw a top immunologist privately, confirmed I'd been having anaphylactic reactions, instant diagnosis and congratulated for my research.

On the second occasion, saw GP about very obvious inflammatory arthritis symptoms, his referral to rheumatology was so bad it was refused, the second was barely better as he didn't include any of what he'd actually seen (swollen joints etc) and was very much "patient thinks she has this, I'm doing this referral as she's a bit arsey and it saves me having to talk to her again" so what should have been a priority referral was shoved to the "might get an appointment one day" list. Saw a very experienced rheumatologist privately who recognises the problems women have being taken seriously and, again, instant diagnosis. She then wrote to GP and rheum team stating the "obvious" diagnosis and urgent need to start treatment, and 6 weeks or so later saw NHS rheum and diagnosis confirmed.

What really frustrates me is that I never go to the GP unless it's something serious, so they have no evidence to suggest I'm a malingerer, yet I get treated as one.

Thanks so much to all of you who've taken the time to share your experience - these first hand accounts are such a powerful way to draw attention to the issue.

We've also got a health and wellbeing survey running on site at the moment which includes some questions on this topic - if you've got a spare ten minutes to fill it in we'd really appreciate it www.surveymonkey.com/r/LMSR528

Thanks,
MNHQ

What have you had to do to get a doctor (or other HCP) to take your pain or symptoms seriously?
I had to go private for a second opinion and the eventual diagnosis, I was dismissed as having anxiety for months, it was cancer. This has happened on a number of occasions now, as the misdiagnosis of anxiety is in my health records, but obviously, that was the most important missed thing.

I saw the male 30 something GP who wears his shirts too tight so we could all admire his bulging biceps. I explained I was exhausted and woke up feeling worse than before I went to bed.

(It was bruxism that was creating neck, head and shoulder pains and was leading to the exhaustion).

Bicep GP told me it was just life and my job as a teacher making me feel like this and that I should try my being him and a GP! He then sent me on my way!

I saw the head of the practice next time (a man who did help me) and I said what Biceps had said to me. The new GP said, “Oh he likes to spread it around.”’and left it.

Biceps also does private work - I expect I’d have been properly checked out and listened to by him had I paid for the appointment.

Honestly? Crying seems to work for my doctors…which annoys me intensely. Being stubborn was also useful, I only got referral to 2ww when I clearly stated to receptionist that I wasn’t prepared to accept their answer, that I needed to speak to someone face to face. It scares me that so many women would accept being fobbed off and thus miss out.