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.

GPs are under pressure to get everyone off their pain meds in case we end up like America. I have a sneaky suspicion antidepressants are going to be next. Perhaps it's a way of forcing people to find private GP services. They prevent people from being referred to hospital, even if you do manage to see a consultant, there's a massive waiting list or they won't operate on you for some reason. No dental care. It's like living in the 18th century, but at least they had morphine to deal with their agonies.

The NHS is just one big piss take now.

@inthethickofit19

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

I know you’re totally right but on the other hand when you’re reliant on prescription painkillers you definitely do have to worry about what doctors think of you. It’s a ridiculous situation.

rosie you’re absolutely right. I’ve literally given up trying to get any help from them, I basically just want to try and get on with things as best I can at this point. It’s a very sad state of affairs.

I have (up until very recently) been treated abysmally.
I have been suffering with chronic lower back and hip pain for the past 5 years. My hip does this really strange clunking thing, it doesn't sit right in the socket and causes pain which travels down my leg. Every single one of my joints are stiff in the morning for a good 30 minutes, my back constantly hurts (a middling ache all day and night, eases up on moving and makes me feel sick in the morning due to how stiff it feels.)
Horrific.

I was told to (and did) try osteopathy (paid privately), physio (also paid privately), yoga, stretching, exercise, TENS, baths, heat and ice. I've been given various painkillers, has some blood tests about 2 years ago and that was it.

Only recently was I referred to MSK. I walked into the appointment where the clinician looked at me, bent me into different positions (ooer) and then proclaimed that it must be muscular as I'm not walking as though it's caused by anything else.
I have had absolutely no imaging, no recent blood tests, nothing.

I'm trying to get through to my GP at the minute that I'm sick to the bastard death of this. I want a diagnosis, or at least some sort of idea as to what's going on. It's impossible to see him at the minute and he comes across impatient, condescending and arrogant over the phone. Funnily enough, his most recent 'idea' was to stop all of my meds - I'm still in the same pain, I haven't got a diagnosis, no one seems to care about what's up with me but stopping my meds is supposed to help. I asked him how I'm supposed to work, look after my small child (single parent with no support), get out and about... he had no answer and I lost the plot.

NICE produced guidance recently explaining how all painkillers (including paracetamol) for chronic pain patients without a diagnosis should be stopped, they should be 'prescribed' a course of positive thinking, mindfulness and CBT.
The guidance itself didn't include any pain patients/doctors/clinicians/specialists.. it was done by psychologists (shock). The mind boggles.

I've stopped being polite now. I am very blunt and pushy, because I am sick to the back teeth of the (lack of) treatment I have been on the end of. It's ridiculous how hard we have to fight to be free of pain.
I'm considering swapping my GP surgery; trying to do research as to which is the best in my area for pain patients.

I still think you should consider moving over to a new GP surgery. Is there a local endo or ME support group/Facebook group in your area? You could ask them for a recommendation for a GP. In fact if you know anyone at all with a long-term health problem you could ask them.

I sympathise - I also have endometriosis and I am a GP.

Pain is difficult - in endo pain is not always associated with the degree of endo on on laparoscopy.
There are a few suggestions

• does your area have a specialised pain management centre?
• there are some gynaecologists with a special interest in chronic pain ? Could that be a possibility?
• you could make an appointment to see your GP and write down your concerns. Make a double appointment if possible to give enough time.
• Some of my chronic pain patients I see every month - we use it’s a catch up time if all is well and pre-empt any major problems. It’s hard when you only get to see your GP when things are really bad.
• gabapentin isn’t good for nerve pain but not useful for some other causes chronic pain.
• I would encourage you to stay at same practice . If you really don’t gel with this dr then see another one. There is lots evidence that continuity care is very important in long term conditions.
• pain management is more than just the drugs - I also acknowledge that you are bent over with horrendous period pain then the drugs do matter
• take care, eat well, try to get some exercise, practice mindfulness.

💐💐

Thanks Luna. I’ve been on a long journey with all this and you name it, I’ve done it. I was under the top London consultant for pelvic pain for several years, did pain management courses, pelvic PT, accupuncture, lifestyle changes, etc etc etc.

I used to be under a great endo specialist in Oxford and saw both the surgeon and their gynae who specialises in pelvic pain. Again, everything they could suggest I tried. Got discharged about five years ago.

I would love for something else to work, anything at all. I’ve frequently begged for any other ideas but there are none.

Maybe a hysterectomy would help, but I don’t know how I would manage caring for my twins afterwards, at least until they have some more physical independence.

I will try to find out how to switch to a different GP in the practice. I don’t want to cause an issue but can’t carry on like this.

Tinkers I really feel your pain. I injured my upper back when my twins were babies and it’s an ongoing issue which sometimes flares up so badly I can’t move. There’s just no help at all with it. I saw that NICE guidance and it’s shocking especially when there are so many undiagnosed with various things and considered to have primarily chronic pain.

the main treatment is a to have a his and you have refused and remain on pain meds that can cause more long term damage if you don't help yourself how do you think a gp can help you if you order meds too early they will always be cancelled and on your order form it should have date due save you the mix up next time and 9 times out of 10 your illnesses will be linked to your meds

The main treatment is not a hysterectomy. A hysterectomy is not a cure for endometriosis.

I’ve ordered meds a couple of days early plenty of times and it has never happened before - and if there have been any issues with it then they’ve contacted me. I literally received an email saying the items would be available to collect within 48 hours. If that wasn’t the case they should have contacted me.

@JadesRollerDisco

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

This.

It sucks and it makes a mockery of their profession.

I have ptsd. I no longer bother with the GPs because everything gets dismissed because of my mental health. Even what turned out to be a broken bone in my foot was initially fobbed off as emotional distress.

There definitely seems to be an issue seeing past certain conditions for some GPs.

Yes, I've experienced this too - even down to broken/sprained bones being blamed on mental health issues!

Fortunately (?) I am allergic - as in proper serious allergy - to opioids, which massively confuses doctors since they can't accuse me of being a drug seeker.

I must be incredibly lucky. I have chronic pain, went to my GP last year because I was struggling with the mental side of it and was referred to a pain management clinic (second time but two different NHS Trusts) for a course of ACT (acceptance and commitment therapy). I completed it earlier this year via telephone appointments during lockdown and it has helped me reduce - but not stop completely - the amount of pain relief I take on a daily basis, but meanwhile my GP continues to prescribe gabapentin, codeine and amitriptyline without issue. However my medication review isn't due until December so that will be the real test!

I have MS. Diagnosed 21 years ago. When I registered as a new patient the gp said:
" I see from your notes that you've got Multiple sclerosis. We can't deal with that here because it's a specialist area so you can only speak to your neurologist about it"

@Hamm87 the turnaround time for repeat prescriptions at my GP is 24-72 hrs dep on how busy they are. Patients have to email their request in and don't receive any acknowledgement of the request being received, they also don't confirm the repeat has been sent to the pharmacy. Once the pharmacy receive the prescription it can take them up to 48 hrs to dispense it. So in reality I have to request my repeat at least 5 days early to get it at the end of that week. If I request it on any day other than a Monday I need to request it even earlier to allow for the weekend.
I appreciate it may not be like that everywhere though.

Yes my favourite thing is when they offer me drugs. And I go, no thanks allergic. No thanks allergic. No thanks allergic. Etc. Eventually they find a medication I'm not allergic to and I ask for it at the lowest possible dose (because of my previous drug reactions!) so they decide I must just be a hypochondriac.

I end up having conversations like this...
"I'm not going to give you this the dose is too low, it won't do anything."
"I've had it before, it does help me, I am very sensitive to medication."
"But the dose is too small, it will be the placebo effect."
"No, it effects me at that dose in the same way the higher dose would effect somebody who was not so sensitive to medications. Please can I have the medication it does help."
"I'm not prescribing you a placebo."
"But I still have the health problem"
"Are you SURE you have the heath problem? "
"Yes it's diagnosed. I can see my diagnosis on your computer screen. I have seen a specialist"
"What have they recommended?"
"That medication, at a low dose"
"But it won't work"
Etc. Round and round in circles.
Usually starts with it being all in my head and ends with it being all in my head. I have a whole bunch of evidence that says it is not in my fucking head

They ALWAYS give me antidepressants. If I say no, they offer no alternative. If I say yes, they just keep increasing the dose until I become a zombie. Then I take myself off the meds (tell them I'm coming off) then all my symptoms are cessation symptoms. Man I hate antidepressants, they work for some people but they are not a fix all.

I'm not depressed. I'm in pain. When my pain stops (I have temporary periods where it does even if just for an hour or a day or whatever) then I am just a ray of happy go lucky sunshine. The pain makes me angry and miserable. Neurological isn't the same as psychological either. And they don't even rule out bones or muscles or whatever first. It's literally straight to psychological, even if they have a piece of paper saying your body is help together with metal pins they'll say that the cure is therapy not physio or pain relief. It's a nonsense

@Hamm87 sorry but you are incorrect a his does not cure endometriosis, endometriosis is a full body inflammatory disease that impacts all areas of the pelvic cavity and beyond, removing one organ won't stop it growing in the bladder or bowels.

Even the GOs and uneducated medical "professional" still bang on about them as a cure, it's as ridiculous as saying you have migraines and removing your right arm 😂

OP you have my biggest sympathy's, I'm sure you've explored every single route know to women but I've just had wide excision surgery in London and it's life changing, even the private surgeons can't match this guy I used and he want that expensive well not as much as I thought.

My GP actually suggested I drank barley water at one point for my severe endo bladder pain 🙄

So back to your post, yes I struggle getting drugs out of my GP but what I've resorted to doing is taking my husband with me to appointments, So far I have tablet morphine, liquid morphine and co-dydramol, theses were all prescribed for my post op recovery, and even post op my GP suggested I should be feeling better by now and I needs to stop taking pain relief, so I do feel you.

I'm now struggling with kidney stones and so grateful I can cope at hope otherwise I'd be back in a&e.

I just wanted to login and send you big hugs, tell you in understand 100% and read the book pain and prejudice, it's eye opening.

To the GP who posted, sorry I'm on my mobile and can't find your name to tag you! Why do you think women with endometriosis are ignored and told it's in our heads? What is the medical profession doing about this? How do you cope with your pains and symptoms? And would you ever have ablation surgery? Or would you only have excision?

Sorry for the typos I'm on drugs right now with kidney pains! Hope you got the jist 🙈

www.bbc.co.uk/news/health-53649189

There is new guidance out about chronic pain which basically says doctors should stop anything opioid/gapentionoid and instead we should do acupuncture or stretching etc. I have sciatica caused by a bulging back disc and have been taking gapabentin and codeine for 9 months; however I have also been called in for a “review” It’s so hard isn’t it being in chronic pain and having to feel like an addict requesting the medicine that actually allows you to function.

That new guidance is supposed to be for primary chronic pain (ie where there’s no known cause) rather than pain due to an underlying condition. I’m sure many will fail to see the distinction though.

I’ve had so many doctors say “studies show these meds don’t work for longterm pain”. Well they work for me and nothing else does, not sure what else to say really!

Thanks mellow. I’m sorry you’re suffering right now but I know what a relief it is to know you can manage the pain at home yourself. I do not miss the days of passing out, vomiting, coming round to a paramedic, and then the hours of waiting while they insist you have a paracetamol drip first and keep saying “I’m sure it’s better now isn’t it?”. Sigh. I can manage the pain if I get on it right away with a fraction of what it takes if it’s been bad for hours.

I’ve had three excision surgeries in Oxford under an excellent specialist - unfortunately for me I have awful pain from seemingly mild disease so the surgeries don’t last long for me. I don’t know what my endo is doing now but I can only assume it’s worse. When I do eventually have a hyst I’ll be sure to go to a specialist so they can excise as much as possible but as you know there are no guarantees especially when retaining your ovaries.

I hope things get a lot better for you x

It's such a battle, an invisible disease is the worse kind!

@Dinosauratemydaffodils

I have ptsd. I no longer bother with the GPs because everything gets dismissed because of my mental health. Even what turned out to be a broken bone in my foot was initially fobbed off as emotional distress.

There definitely seems to be an issue seeing past certain conditions for some GPs.

Not certain conditions.

Certain patients.

Certain patients.

So trauma victims who rarely attend the GP practice are problematic? That's a new one. In the past 20 years, I've seen a GP 5 times. 2 foot related issues (broken bone and a blister I ignored until I couldn't put my shoe on because you don't bother your GP with blisters), a lump in my breast, an infected burn (referred by the nurse) and then they called me during lockdown after I contacted my psychiatrist per his instructions in crisis. All of those things were originally seen as a symptom of my mental health (and possibly my mental health contributed, for example someone with healthier self esteem might have seen a dr before their foot swelled up) but 4 out of the 5 were very much a physical issue.

If that makes me a difficult patient I'd be amazed.

No, it’s certain conditions, and certain genders (or rather one specific gender).

I wrote my MSc thesis on gender bias in the healthcare field.

My Male GP asked me if I wanted to go on the hormonal pill the other day. We were not discussing anything remotely hormonal.