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

In my case it was going private that almost killed me. I was in agony after a hysterectomy. They wouldn’t listen to me. They said I needed a scan but they only had a scanner at the hospital on a Tuesday. I had to wait 4 days for a CT scan that showed massive internal bleeding that had turned to sepsis. Then they kicked me out! They wouldn’t arrange transport to an NHS hospital because they’d have to pay for it. They were begging DH to take me by car, even though he couldn’t get me out of bed. I ended up ringing 999.

I would never go private again. They’re fine till something goes wrong.

Not taken seriously on a number of occasions. Months of going to GP with abdominal pain, I was only 21, kept being told IBS. Large ovarian cyst that then ruptured and I had to have emergency surgery to remove cyst, part of ovary and fluid in abdomen. Another, spontaneous pneumothorax- misdiagnosed twice and sent on my way, chest X-ray and cue all hell breaking loose with GP trying to find me that day as I needed to go to hospital. Also, weird pressure in my face, fobbed off as anxiety, turned out to be rare aspergilloma in sphenoid sinus, also needed surgery as could have been catastrophic if left much longer. Now, I go there and ask directly could it be X? Or Y? Can you be sure?

My first birth I had a pph, transfusion, 4th degree tear. I was also sent home with retained products but my doctor (female) kept telling me that my pain and excessive bleeding weeks later was perfectly normal. Finally my husband met her in the hospital (he's also a doctor) and described to her the exact symptoms I had called her about (more than onc). She took HIM seriously and brought me in and finally dealt with the retained products.

So in my case I had to get my husband to talk for me. lovely isn't it.

My husband made an appointment to talk about his concerns for my health with the GP who kept insisting I was healthy. I look it on the outside. Enough said

My GP when I was in my mid 20s got noticeably better when after getting my PhD I changed my title to Dr.

Well, I had to literally scream. During my third c section, I repeatedly told the incredibly arrogant male surgeon and anaesthetist that something wasn’t right and that I was in pain. They both dismissed me and told me that it was normal to have sensation during a c section. Which obviously I knew, given that it was my third one. The pain got worse and worse and then it was agony. Pure agony. The spinal block had failed on one side of my body and I was screaming, although fortunately I have no memory of this.

Unfortunately, it was too late to do anything by that point. The anaesthetist said he was going to have to put me under but the surgeon disagreed and said he could get baby out in 5 minutes if I could hold on. I held on and DC3 was born.

I was then given a huge shot of fentanyl which left me totally insensible so I have no real memory of DC3 being born or their first few hours.

I’m still so angry about it two years later. I got nowhere with PALS. This campaign is desperately needed. Thank you.

Would be interesting if patients would share a rough location. Our gp is sympathetic, accessible and effective. No headlines there tho

Would be interesting if patients would share a rough location. Our gp is sympathetic, accessible and effective. No headlines there tho

I was in absolute agony due to a hormonal issue that caused almost constant UTIs. I was told it was just bad luck and wasn’t that painful. I had to go private, with no money so into debt, to get the right diagnosis and treatment. I was on the verge of having to give up my job before and it was completely lifechanging.

I got sterilization keyhole surgery and was in an insane amount of pain when I woke up. I got up to use the toilet and collapsed, vomited several times and was drenched in sweat. Told it was an anxiety attack. This was through the NHS but a private clinic. Sent home 2 hours later.
Phoned private clinic twice who told me to take a suppository for the constipation and it was normal gas pains. Fast forward 10 days after being in pain, can't walk, hadn't been to the toilet and was still vomiting I got a gp appt, said I had a uti. Week of antibiotics and still in pain. Got another gp appt who done blood tests.
Next day I get a call from the gp to say my infection markers for in the high 200s and I have an inflamed liver. Sent to hospital and get a CT scan. CT scan Confirms that during the surgery the surgeon cut my bowel and my bowel was now leaking into the rest of my body.
Due to the length of time it hadn't been spotted it was too risky for surgery so I had to spend a month in hospital fasting and had drains fitted to get the infection out.
Now, 4.5 months later and I'm still in pain daily. Only 3 out of 4 infection pockets were drained so I still have one causing me pain.
if someone had spotted the symptoms earlier I could have had surgery to quickly remove all the Infection and hopefully be back to normal.

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

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.

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.

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.

-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.

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.

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.

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

Yeah, same.

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

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.

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.

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..

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/

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.