If you have a chronic illness, how are you treated by your GP?

[SinkGirl]

I have endometriosis and adenomyosis and pain every day, and have done for over 20 years. I also have ME. My GP is causing me so much additional stress and I don’t know what to do.

Many years ago I was put on opiates after about 20 hospital admissions for pain relief. Thanks to the meds I’ve had no emergency admissions for years now as I can manage the worst of the pain myself.

I have tried every treatment licensed in the U.K. for endometriosis - six surgeries, every type of hormone treatment, anti depressants, epilepsy meds, every type of painkiller. Several years ago it was decided there was nothing more to be done - take the painkillers I’m on because that’s my lot. This is far from ideal but I’m out of options.

I reduced my dose by 90% through my pregnancy with my twins because my pain improved massively, and needed no support for this. I have maintained that dose for the last 4 years even though my pain is worsening.

My assigned GP seems to think I’m neurotic and a drug seeker who doesn’t need pain relief, despite the many pain specialists I’ve seen over the years who say I do. I’ve been at the practice for just over 4 years and I’ve probably seen her a couple of times a year. She regularly does things like change my prescription without telling me. They brought in an external GP to review all their chronic pain patients - we spoke for 40 minutes, he took the time to listen to me and said I am using them responsibly.

Recently she phoned me out of the blue and said I should be reducing them more quickly. She said she’s not suggesting replacing them with something, just stopping them - I asked how i am supposed to cope with the pain. I explained that my pain fluctuates as my cycles are irregular so one month may be worse than the last which affects how much I take that month, so what might last me 8 weeks now might last 7 or 9 weeks next time, and she seemed to understand this.

She said I should have a hysterectomy and was disapproving when I said that I wasn’t ready to completely give up on more children (I assume because our twins are disabled - we have decided not to have any more but I am really not mentally ready to have such drastic surgery). A hysterectomy is not a cure for the endo and frankly I am scared that if I have one but am still in pain they will refuse to help me because I should be cured.

I emailed about 2 weeks ago to request my usual prescription. We’ve had a very tough couple of weeks so I haven’t been able to collect it and have just been getting by as best I can, rationing what I do have (I always keep about a week’s supply on hand due to previous issues and I’ve been cutting down so have been able to stretch it out). Went to get it and it wasn’t there.

Looked at my online account and apparently the request was refused. Nobody contacted me to let me know. I got the usual response email saying they’d be issued within 48 hours. I think I must have sent the request one or two days early (it’s on a two month repeat) by mistake. They could have just issued it, or emailed back saying I should request it in two days, or called me.

This is not the only issue I’ve had with her. For example a few months ago I had a new type of pain and other bladder related symptoms (including a few instances of retention and intense shooting pain that made me vomit) - could just be endo but might not be, so I did an online consultation and she responded that the pain was caused by my painkillers and if I stop them the pain will stop (no evidence for this, no investigation, seems unlikely to be the meds when I’ve been on them for years, etc).

I understand that patients with chronic illness aren’t easy for GPs to treat, but I understand this and don’t expect much. I try not to bother the doctors unless it’s something urgent or worrying, and I am responsible with my pain relief - have never taken too much or had any problems.

It’s at the point where I have stopped contacting the doctor at all even if things are really bad. I recently plucked up the courage to contact them last week because I’ve had a low grade fever for nearly two months and it’s starting to worry me, but I was worried she would just dismiss me. Luckily another doctor called me who acknowledged that it’s complex but they should definitely run a few blood tests just to make sure there’s nothing else going on. He wasn’t rude or dismissive and he treated me like a human being, and I realised that things don’t have to be like they are.

What can I do? I’m worried that whatever I do will be seen as doctor hopping. I should not be scared to go to the doctors when needed. I don’t have health anxiety, I don’t worry that I have anything sinister going on, but I’m sick of being dismissed and everything blamed on my meds or my existing diagnoses.

Sorry, that was an essay. I know lots of chronic pain / illness patients are treated this way - has anything made it better? I hate being like this, but I know it is not my fault that I’m in pain. I definitely did not ask for they. I shouldn’t feel like this and I need to do something about it but I feel like anything I say or do will be used against me.

If anyone has any advice I would really appreciate it.

I have hypothyroidism and everything and I mean everything is put down to that
Drives me mad- over the years I’ve had infertility issues asthma and psoriasis All these have been dismissed as ‘it’s to do with your thyroid’
It’s like they can’t see that someone can have more than one issue

You shouldn't have to but is it possible to change GP surgeries? I live with chronic pain too from arthritis. Last time I saw the Dr, I was told there was nothing they can do and to just get on with it. I was 39 at the time. I now don't bother the Dr although my arthritis has spread and my life revolves around my pain. Its totally shit.

Sorry Should have added something -I got a different opinion from another doctor
I think that’s all we can do. It’s tough if they take it personally

Yes this has happened to me and I stopped going for a long time. I thought this was my lot. In the end, I changed doctors surgeries and they sent me to a specialist. By the time i had surgery, I was close to be being paralyzed.
To add insult to injury, the independent consultant for my medical negligence claim stated it wasn't for a GP to recognise what was wrong. I agree, they cant know everything but after years of complaining about the same thing and barely being able to walk, a referral wouldnt have been a bad idea!

Are you still under consultant care? If so, get them to write a letter stating why you need to be on that medication and that it shouldn’t be changed by anyone except them.

I’m on “unusual” doses of some drugs - my GP practice says they just act as the printer now - they won’t prescribe anything without a letter on the system from the hospital, but then they just do as instructed!

They shouldn't have denied your prescription in that way, but it is always a good idea to review how a patient is using painkillers. It may be that they get rebound pain / dependence / psychological dependence ('I think I'll be in pain if I don't take this' and it's a self-fulfilling prophecy).

It sounds extremely difficult, on top of a very difficult situation, on top of Lockdown! Do you have any counseling at the moment? It might help to relieve some of the inevitable stress, and help you formulate an approach the GP too. I appreciate this is a long term strategy though.

My first paragraph was general reasoning, not aimed at you btw, OP! Just trying to think through why they're doing this.

I've been told that they want to stop my Gabapentin in November as "sciatica only lasts 6 weeks"

I've had it since December and I struggle going upstairs, it's still incredibly painful. It keeps me awake at night and without the Gabapentin I am crying with the pain.

Because of Covid they have no interest in doing scans, MRI on my lower back.

Last year I pushed very hard for an Mri on my knees to find I had really bad arthritis in both of them - I now have to pay for steroid injections at £300 every 3 months as 'there's nothing they can do for arthritis' and told me I should get a stick.

I'm 47.

No I’m long since discharged by everyone -saw a gynae a couple of years ago who just told me to come back when I want a hysterectomy. They won’t do any more laparoscopies, there’s nothing they or pain specialists can do that hasn’t already been done. Which is fine - it is what it is, I’ve accepted it, but it’s not my fault that my body is screwed and I’m tired of being made to feel like I’m doing something wrong. I guarantee that if any of these doctors felt as awful as I do much of the time, they wouldn’t be accepting of being dismissed like this.

The practice I’m at is by far the best one in the area and in many ways it is good and I do like some of the GPs but this one just seems to have made up her mind about me and the care I get as result is pretty poor.

Thinking I should asked to be put under a different GP but concerned about how that will look or what will happen. Definitely not going to move to a different practice if I can help it as I’ve had GPs in the past just completely refuse to prescribe what was needed (even when I was under consultants who were managing it) and it was a bloody nightmare.

They shouldn't have denied your prescription in that way, but it is always a good idea to review how a patient is using painkillers. It may be that they get rebound pain / dependence / psychological dependence ('I think I'll be in pain if I don't take this' and it's a self-fulfilling prophecy).

I do understand that but we had a review over the phone just after the last one was issued. I really thought she perhaps understood more after that conversation, but no. I’m just tired of everything being a fight. I would gladly bin the lot if I could manage the pain some other way, but there are no more ways.

It’s not that they are questioning it that’s the problem - I understand that. It’s the way it’s done and changing things without telling me so that I then have to instigate yet another discussion about it. I am so wary of doctors at this point that I hate having to contact them. I get terrible anxiety before appointments because I know how it will go. It’s really depressing.

Like a drug seeking hysterical hypochondriac, before I had a diagnosis and since

Like a right fucking prick

So I go private

Go to the London pain clinic no 9 Harley st And see dr Singh

He will prescribe and also be a polite and caring doctor

What meds are you using and do they help?

I have experience of this with my mum following a catastrophic stroke in 2018.
We often felt like we were a nuisance and eventually stopped going and only phoned when things were desperate. I had never had this experience before being healthy myself and the only reason I could come up with is that patients who are difficult to treat expose a GP's lack of knowledge and it makes them feel uncomfortable.
We only wanted to feel like they gave a damn even if they were unable to relieve symptoms. I think some doctors don't like admitting that they don't know what else to do.

@cultkid having just googled the pain clinic I suspect most people couldn't afford to go there.
I have OA all over, compressed discs, a pinched nerve in my shoulder. A hip replacement and the other one needs doing, tension headaches that lead to
More migraines and am in chronic daily pain. My GP gives me 2 weeks worth of codeine every 3 months and 6 migraine tablets! It's a joke but I couldn't afford to go private at all, I'm a single parent who was made redundant in May so finances are incredibly tight.

We only wanted to feel like they gave a damn even if they were unable to relieve symptoms. I think some doctors don't like admitting that they don't know what else to do.

This is so true. The one GP in my practice that i do like is totally different and willing to acknowledge when he doesn’t know what to do. I think it’s easier for this GP to dismiss me as some kind of middle class drug addict than to actually empathise and realise that I’ve been living with constant pain since I was a teenager and I’m just trying to get by.

I’ve been on everything over the years - these days I’m on zomorph, oramorph and naproxen. Stopped things like amitriylene and pregabalin long ago as they did nothing.

At one point, about 6 years ago, I was on literally 10x the amount of morphine I’m on now, plus other things. I’ve worked really hard to reduce it and still get treated like this. I don’t know of many drug addicts who can cut their dose like that without any treatment. I could do it because my pain improved while pregnant and pumping, and I’ve tried everything to keep it stable even though my pain increases each month.

It definitely does work to an extent - my pain during periods is so bad now that I would definitely have ended up in hospital many times if I couldn’t manage it at home. This month I also had ovulation pain that was as bad which has never happened before so look forward to seeing if that’s going to be a regular thing.

I was treated so badly before I was diagnosed that I avoided GPs like the plague, even when I had a wonderful one. I ended up in HDU with severe cholecystitis and pancreatitis after I avoided the doctor for about five days - when I finally went to see her she had to call me an ambulance and was not happy with me. I really don’t go lightly. Maybe that’s part of the problem - I keep it to myself so they don’t see how bad it is. But there’s no point going just to tell them how bad it is, there’s bugger all they can do!

I’m sorry so many of you have experienced the same. It’s shit enough without being treated like this. What’s annoying is that she does it with this faux pleasantry that makes me question whether I’m the one being unreasonable. I’m definitely going to ask about changing to a different GP - I don’t want to complain or make a fuss but I do not need the additional stress of worrying about what she’s going to do next

You can request any GP you like. I usually just go with whoever they have free at the time so I'm a serial 'GP hopper', I'm sure they don't care one bit. If you've found a better fit than the dismissive one then that's great.

@IndieTara

Its sooo expensive 😭😭😭
£270 I think for first appt and £160 for follow up
But it's cheaper then me not being able to work
I believe it's £30 for a repeat script

I just honestly know they saved my life

I came off

Fentanyl patch
Oramorph
Tramadol
Gabapentin
Amatryptaline
Codeine

It was a life saver

[quote Notredamn ]You can request any GP you like. I usually just go with whoever they have free at the time so I'm a serial 'GP hopper', I'm sure they don't care one bit. If you've found a better fit than the dismissive one then that's great. [/quote]
Yes and I usually try to see someone else if I need an appointment. However, she pointed out on the phone last time that she is my assigned GP so all my prescriptions go through her. I would just rather be under someone else’s care and not have anything to do with her unless it’s an emergency and there’s no one else. Even if it’s another doctor saying the same thing, I just can’t take her manner when I’m already struggling.

I'm waiting for surgery which has been delayed due to Covid. Until I get the surgery I'm in constant pain, but afterwards everything should be sorted out. My issue is also going to continue getting worse until it's sorted.

My doctor has the opinion that I shouldn't be on painkillers for this long as usually people don't need so many, and also that I'm on a higher dose. But that's because I should have had the operation months ago! I'd be one of those people too if everything wasn't on hold because of Covid.

@cultkid I'm honestly glad they've helped you so much

Mine don't have a clue so they defer everything to my consultant. Who is a force of nature and sent me meds for a UTI on the grounds the ones the GP had given me were "shit"
He is happy to argue my case all day long and my GP basically does what he says

You really shouldn't have to but I would try a new GP. I moved areas a few years ago and where I used to live I was constantly chasing prescriptions, being questioned over it, having them refuse or just getting ot wrong. Taking my medication consistently and on a strict routine is really vital to my health condition remaining stable and with a baby they should have known better. When I moved areas my GP couldn't have been better, I get the correct dose and brand of medication on time every month and whenever my consultant writes to change anything on my repeat they do it quickly no questions asked. I do have a yearly review and check ups and the GP is always very kind and if I go in for something to do with my son she always asks how I'm getting on with my meds. The GP is always gives advice but is always quick to admit that it isn't her field and will refer me for better info. Its so much less stress OP which you definitely need! It will be the best thing you do. Fingers crossed!

Who cares what they think - ask to change GP. It doesn't sound like you have anything to lose OP. No one should have to go through this. So sorry x