Really worried - been “invited” to see a GP about pain management

[SinkGirl]

Sorry, this might be long. I’m anxious and can’t stop thinking about this so hoping getting it all out will help.

I have had endometriosis and adenomyosis for over 25 years and have been a chronic pain patient for 15 years. During that time I’ve seen lots of different specialists in gynae and pain management - I’ve had six surgeries, tried every hormone treatment, tried every drug used for this sort of pain, pain management courses, physio, acupuncture, and even homeopathy on the NHS (I know!). Nothing has been effective and I’ve been on some form of opiate for many years. For years it has been morphine after trying all the others, plus all the drugs for neuropathic pain etc - at one point I was on fentanyl patches plus huge doses of oramorph plus amitriptylene or pregabalin and voltarol.

In 2016 I came off everything but oramorph and slow release morphine capsules and started cutting those down off my own steam, as I was on a very high dose, so I could be referred for fertility treatment, but then I got pregnant without treatment. My pain improved significantly during pregnancy and I cut my dose by more than 80% - didn’t need any support to do this, I’m not addicted, I just had to decrease gradually due to physical withdrawal symptoms. I’m now on 15% of the dose I was on this time four years ago.

I’ve maintained that dose for the past 3 years even though my pain has worsened significantly as my endo has spread (I believe anyway, haven’t had a laparoscopy for years). I really don’t want to increase my dose again so I manage the best I can.

On top of all this I have a back problem from the postnatal period which hurts all the time but sometimes flares up badly - for most of December I’ve been in horrendous pain, the GP gave me a few days of diazepam before Christmas (third time they’ve done this in three years) but it didn’t help. The worst pain is only just starting to ease off now. GP does nothing about it other than a physio referral, even though I have altered sensation across my back and intense burning in all 4 limbs 24/7.

I also have had a host of other horrible symptoms for the last 8 or so years, which seemed to be triggered by a treatment I was on for endometriosis back then. The symptoms are exactly like hypothyroidism but tests are normal - I’ve seen the GP so many times begging them for help, more tests, anything that might get to the bottom of it, but they’ll do a couple of blood tests and say they’re normal and that’s it. They say it’s ME or fibromyalgia but most of the symptoms don’t fit.

Before Christmas one of the GPs called me and had a discussion about the morphine. He said that more evidence showed that it’s not effective longer term and they are trying to get people off it. I said it’s effective for me, but I’d happily come off it if I or any of them could find anything else that helped my pain at all, but even pain consultants have told me there’s nothing more they can do. Gynae have discharged me until I’m ready for a hysterectomy. I have no other options that haven’t already been tried. We also discussed the fact that I’ve reduced my dose myself with no need for help, as far as I can, but I have two disabled children to take care of and can’t be lying in bed in agony or being rushed to hospital once or twice a month (which is what used to happen before I had the prescription). He agreed that all this made sense and i thought that was that.

After years of being on these drugs I’ve had these discussions many times, this was at the more pleasant end of the spectrum - usually it’s threats to stop prescribing or insinuating I’m an addict, or just actually refusing to issue at all and me ending up in hospital.

So today I got home to a letter saying that a 40 minute (!) appointment has been made for me to see a GP they’ve hired to “help the practice with their pain management patients” (read: reduce their prescribing rates). It’s a GP who doesn’t usually work there so I have no idea what they are like.

I’m honestly really worried about the appointment, based on past experiences at other practices (I’ve moved towns a few times since I was diagnosed 15 years ago).

I’m also really annoyed to be honest - GP practices are very stretched and they’re spending 40 minutes on an appointment I don’t need, so I can point out that numerous consultants have already said there’s nothing more that can be done, and they can ask me if I’ve done x y and z and I can say yes I have, it didn’t help. Best case scenario is it stops there. Worst case is that the time is spent coercing me to agree to reduce my dose, despite the fact that I will not be able to manage on a lower dose (I only take what I need, I’ve never ever abused these drugs or taken more than I should, and I take less than the regular amount most of the time and then more during ovulation and the first few days of my period when I can barely speak or stand because the pain is so bad - now on day 4 of my period and the last few days have been truly horrendous).

I understand that they need to ensure these drugs aren’t over prescribed but a doctor has already spent the time clarifying this with me very recently.

Meanwhile I’ve been begging for a doctor to sit down and take the time to really go through my symptoms and blood test results to date and try to figure out what the problem might be, or other tests that might be useful. That’s what I need - not 40 minutes of lecture and coercion regarding medications that I’m managing fine with and need. Maybe this is my fault for just struggling through each month, ordering my prescriptions and not seeing them about how bad things are with my pain day to day because I know there’s bugger all they can do about it anyway. If anything I need more pain relief than I currently have but I don’t want to be on more medication!

Would it be unreasonable to go in there and say I don’t need help with managing my pain, it’s the least of my problems - why can’t you help me with the things I actually need help with? Could you refer me for an MRI for my back / neuropathy, could you look at my blood test results and symptoms and see if you can figure out what’s going on? I can’t believe that after all these years of asking repeatedly for help with these issues that I finally get to sit down with a GP for 40 minutes but all they want to talk about is the bloody painkillers I’m on.

How do I get them to understand that I’m at breaking point with my symptoms as they stand, and have no idea of the cause, and so the pain that’s mostly predictable and managed by a medication that works for me is the last thing I’m worried about right now?

I understand that all this might sound like catastrophising if you haven’t been a chronic pain patient but believe me it’s based on experience. I am sick to death of being treated like I’ve done something wrong - I don’t want any of this, i would gladly bin every last painkiller tomorrow if the pain were manageable without them.

Sorry, rant over. Can anyone give me any advice? Any similar experiences? I’m dealing with so much with my kids right now who have very high needs and I don’t need this extra stress!

I could have literally wrote this! I was diagnosed with endo last year at the age of 40. Last year I had surgery but there is remaining endo all over my bowel and I have waited 9 months for more surgery.
I am on MST continuum and codeine. I also have a plate on my pelvis as it dislocated 8 years ago during labour.

Getting pain relief has been an utter uphill struggle. I feel like a junkie just for asking for a script.
2 months ago they referred me to the pain specialist who was essentially a psychologist who they have in to help people come off long term meds. I explained my situation and he tried persuading me to come off the codiene and keep a diary. Within 3 days I was bed bound and curled up.
I went back and had to sob to a dispensing pharmacist at the surgery and they put me back on them. Every appointment since then I have been treated like I'm asking for heroin!
It's disgusting.

I would say go and stand your ground x

Chronic pain guidelines have been changed and there is a HUGE push to get people on lowest doses possible and stop opiates from being prescribed for non cancer pain for more than 12 weeks as there’s no evidence it improves function...apparently. I’ve been victim to this recently- was on fentanyl patches and oramorph. Have had all my breakthrough pain relief stopped and my fentanyl switched to Tapentadol which works differently- and for me not as well, but has less opiate in them so they’re happy 🙄 I’m waiting for surgery too and being admitted to hospital once a month so it’s even more nonsensical... mine was done at pain clinic appointment after 5 years of gp prescribing based on not being addicted, sensible , and them improving function... I’m really sorry and I’m not trying to scaremonger but I wish I’d been prepared.

Perhaps this might be the time for a breakthrough. This GP doesn't work at the practice, and is presumably coming in with no preconceptions at all. Presumably they will have considerable expertise in the pain management field, and they may have different ideas and options to explore that haven't been tried before. They will also presumably know the point at which pain management is not the answer, and that the causes of the pain need further intervention. Do you feel that you would be able to go to the appointment with an open mind about that?

I’m so sorry. It’s absolutely disgusting the way pain patients are treated, I’ve seen it happen to so many friends and experienced it myself for so long and I’m at the end of my tether with it.

It would be different if you’re refusing treatments or surgeries and just asking for drugs. But when you’ve pursued every available option and been told on multiple occasions that there’s nothing more they can do for you other than the pain relief you’re on, you shouldn’t have to be treated like this just to get the medication that enables you to barely function.

My only option left is a hysterectomy but it won’t actually get rid of the endo, so I’ll still be in pain. I’m reluctant for many reasons, including the fact I have two disabled kids who need lifting and changing frequently and I need them to be a bit more independent before I have major surgery. But also I know as soon as I have it, they’ll say I no longer need painkillers as so many think it’s a cure despite that being demonstrably untrue.

I’m so sorry they’ve put you through that. I hope you have a long period of peace before they try it again with you.

I’m so sorry Pie, this is exactly what I’m worried about. As I said to the GP a few weeks ago, how do you expect me to be able to take care of my children if I am bed bound? It’s not physically possible. I’m just about functioning now, the fact that they are willing to fuck up people’s lives completely to meet quotas just shows how little they care about patients at all. It’s disgusting.

dreaming this is what I’ve been trying to think since I got the letter today, it’s just negative experiences in the past leading me to think the worst.

I’m 28 and waiting to get a stoma- ileostomy- they misdiagnosed my appendicitis 5 years ago and I nearly died, had major open surgery and have had constant horrendous pain since (on top of an underlying autoimmune condition that causes pain that means I’m good with pain- in fact that was why my appendicitis was missed- they said I wasn’t in enough pain 🙈). For me it makes it even worse that it’s something they’ve caused that they now make me beg for relief. It’s vile, it’s punishing and we need to move away from shaming pain patients. I have tried every other form of pain relief, I am still in significant pain- but I can function partially. I live attached to hot water bottle, I use natural stuff- I spent £70 on a month supply of CBD oil I was that desperate!

The good news is the dr I saw was actually very open and honest and acknowledged my pain and the guidelines he was forced to stick to... I actually was listened to at least... and treated like a human- which as you’ll be aware is pretty rare! I really hope you have a positive experience- often being really open to their opinion and “asking” their opinion instead of deigning to believe you know your body best 🙄 helps.... silly but if it makes it easier! X

I can't speak for the motives of your surgery and what your appointment will consist of but please don't panic too much. I'm a health professional with some experience in this field. It is true that the evidence for chronic pain is that long term opiates aren't effective. It's also now known that there are many other factors contributing to pain including sleep, exercise, stress amongst others. Now the NHS is trying to review it's chronic pain patients to see if some would benefit from a more holistic approach using goal setting and support with making changes to sleep, diet, mood that their pain can be better managed. It might be that the surgery want to see whether any of these things could be contributing to your pain. But go armed with questions and write down things they say so you don't forget. Or take someone with you who can help you. It might not be as bad as you think. Goodluck

Yes I know what you mean. I am just so sorry you’re in this situation. How are you coping on the new regime?

I think I’m going to go in with the attitude that actually I’m very relieved to be getting an extended appointment with a GP because there are lots of things I need help with, and pain management is really bottom of that list because it’s the only aspect of my health that’s actually being managed reasonably well. I still have a lot of pain but I take enough that the pain doesn’t prevent me from parenting and functioning most of the time.

If it’s one of those doctors who are insistent that opiates can’t possibly be helping my pain, then I have no idea what I will do and say, except for the fact that I already take as little as I can and without it I will not be able to function. If they insist they are reducing or stopping it then I have no clue what to say to that.

I mean, what sort of addict reduces their dose by 90% off their own back without needing any medical or psychological help? I’d be a bit of a crap addict if this was possible.

I know what you mean about it being something they caused. Doctors were very happy to keep me on a drug for a couple of years when it’s only licensed for six months use. It has really screwed me up ever since and they have no interest in trying to figure out how / why unless they can run a single blood test and spot the problem. I honestly used to think that if you had a medical problem that doctors would keep looking for a cause, it’s so bewildering when they just say “blood tests are normal so everything is fine”.

Dreaming makes a key point about this GP is unlikely to come at this with preconceptions, and you have a chance to lead the conversation.

I would type up and bring a long a copy of your potted history e.g drugs you've taken, dosages, surgery, pain diary, outcomes and key discussion points from various specialists etc. Really demonstrate that you 'own' and understand your medical history.

Giving them a copy to read over for the first few minutes (it's not always easy to see a patient's history at a glance) and be clear on what next steps, from your perspective, are.

40 minutes isn't actually that long and if you have the key information to hand (in an articulate manner) you stand a better chance of having a two way discussion.

I don't have much advice but just coming on to say I understand. I have had chronic pain for years and am very sore currently. Opiates don't help, but I'm sure that in your position (if they did help and using them sensibly as you are) I wouldn't want to change.

Having said that, maybe it could be useful to speak to this dr? My pain clinic consultant has just offered me a new intervention that wasn't available before, so it's possible that things can change?

Just sending support. It is shit. I have stage 4 endo and adenomyosis too plus other conditions and on regular strong pain meds. It’s awful it’s not treats seriously.xxx

My endo isn’t that severe - I’ve always had mild to moderate visible disease, but severe pain, ever since I was 12. I’m in pain every day but obviously periods are worse. I think the lack of understanding in many GPs about the correlation between severity of endo and pain doesn’t help matters, I was lucky to get referred to a great endo specialist who understood this. But then I was on some hormonal treatment or other pretty much constantly from 12 to 33 when I got pregnant, and I’ve now been off everything for the last 4 years so who knows what it’s like now. Unfortunately even excision laps don’t do much for me because as soon as it returns, the pain is hideous again - most I’ve ever had is 4 or 5 months of improved pain after a lap. That may be down to the adenomyosis as well of course.

The whole thing just makes me so angry. I never asked for this fucking horrible illness, I’m just trying to live with it. I don’t want to just exist, which is basically what I’ve been doing for the last ten years, and I want to be a better parent. The thought of them doing anything that will make things worse is really terrifying, but that fear gets misinterpreted as addiction I think. I would gladly never take morphine or any painkiller again if I could manage without it.

I've seen your posts before, and really wanted to send you some support - you are dealing with so much

I'm in a similar situation with endo and back pain and a few other things thrown in. Luckily I don't have adenomyosis and long-term treatment with GnRH treatment is working for me. I take OxyContin, Oxynorm for breakthrough pain, Lyrica and slow release ibuprofen. Like you I reduced my opiates by a significant amount (about 2/3) after my third surgery and starting the GnRH drugs.

But I'm not in the U.K, thank goodness - I couldn't even get a gynae referral from my GP. Luckily we moved abroad and got private medical insurance, and I eventually got a diagnosis. My doctors have generally been pretty liberal with the opiates - in fact I was on the highest dose I've been on before I was even diagnosed (apparently my pain couldn't be gynae-related because I was in pain all the time ). II'm in Europe by the way, not a country where you can buy any drug you fancy over the counter!

I think your plan to mention all the other problems and say your pain is managed with your current regime is a good idea. If they get into a 'stuck record' mode where they say opiates are not a long term solution, point out that they are working fine for you and have been for some time. Make sure you tell them that your pain isn't gone, just reduced to a more manageable level, because pain management doctors are only looking to decrease your pain, not get rid of it.

I hope something good comes from the appointment. If not I can only suggest an appointment with a private gynae who is an endo specialist. I have one in the U.K. who did my final surgery (and got rid of lots of scar tissue left behind by previous surgeons), and he has no problem with my medication regime. You absolutely should not be forced to do this but sometimes the NHS leaves people no choice.

Thanks Vive. Just be careful with the GnrH longterm - that’s what (I believe) caused all the trouble I’ve been having. There’s a big community online of women with similar issues to me, and I’ve spoken to a couple here on MN as well. I know someone who’s doing great on it longterm as well so it obviously doesn’t affect everyone so badly, but I don’t think doctors really understand the longterm effects and no one seems to be studying it so if things go wrong you’re a bit stuck. My theories at the moment are that I’ve had chronically low oestrogen all this time (one private blood test showed a low level, but when GP repeated it at a different point of my cycle they said it was fine - because of when it was I still think it was borderline and could be the issue but they’re not interested), or some kind of thyroid / pituitary issue that’s harder to diagnose. Who knows.

Will see what happens next week and take it from there.

Thanks SinkGirl - do you mind if I ask which online communities you are on? I was very active on endometriosis uk when they had forums but fell off when they moved over to health unlocked.

I've been on the GnRH nearly 10 years and am in my early 50s, so the plan is to continue another couple of years till I'm past the age of normal menopause, then stop and see what happens. Not looking forward to the uncertainty but hopefully the natural hormones will take over. I might still need hysterectomy anyway.

Good luck with your appointment, let us know how you get on

I'm thinking there may be some funding issues in this, tbh. DS1 is autistic and currently severely restricting who he will interact with. He's under the care of CAMHS for co-morbids and he takes a couple of medications, one an expensive (£2 per dose) one for ADHD. GP practice constantly trying to call him in for a medication review, despite 3-6 monthly appointments with CAMHS.

I'm prescribed a bucketload for HMS but it's all cheap and, amazingly, I've not had a single call for a med review in the 2 years I've been with the practice.

Me too Vive - from when I was diagnosed in 2004 probably til about 2008/9 ish? Can’t remember exactly. It was such a great source of support. I’m in a few Facebook groups but they’re so full of misinformation i have to just step away. Quite a few years ago I completely gave up on ever being free from endo Pain and now I’m just trying to live with it. I haven’t been on the pill for about 2 years now because last time I was on it, it screwed up all my hormones again and exacerbated all my symptoms but maybe I’ll go on an oestrogen dominant one this time and see what happens given I’m reasonably sure that low oestrogen is a factor in my other symptoms (of course higher oestrogen possibly means worsening endo, but without periods... it’s a gamble)

Sorry, you obviously have far more experiment of GnrH than me then! I’m so glad it’s worked for you - it worked brilliantly for me, I went back to working full time, pain was improved, fatigue improved, the side effects were totally manageable in comparison. Then something changed and the side effects have just never gone. I’ve lived with crippling fatigue, hair loss, weight gain and no sex drive for most of the last decade - occasionally I have these phases where things reverse, usually at a time of hormonal change (coming off the pill, stopping breastfeeding etc) but it never lasts for long. Doctors have no idea why and don’t care to find out and frankly I’m sick of living like this.

Pickachew I’m sure cost is a factor as well as pressure on practices to stop prescribing. I’m not sure what I’m supposed to do honestly. I will certainly be asking that if I’m told they are stopping them.

A pp said they 'felt like a junkie' asking for pain relief. I know what you mean! I've been diagnosed with severe carpal tunnel and the burning and stabbing pains in my fingers just don't seem to merit much pain relief. It feels like they don't believe me. I've read that diazepam can help but I don't feel I can ask for it or they'll think I just want drugs for the sake of it.

In case it helps anyone else - a lot of my carpal tunnel symptoms have gone away after getting a new mattress. Ours was about 15 years old and really wasn't offering much support!

I’m not on pain killers but am on high doses on long term benzodiazepines and zopiclone for bipolar and schizophrenia I never abuse these and sometimes go days without if they are not needed while using more on days they are needed my psychiatrist who I see every month is happy with how well I manage my tablets and feels they are necessary as without them I was in and out of hospital even homeless as was mentally unable to maintain bills. Last doctors surgery I was at used to moan and call me in to try and discuss getting me off them making me very anxious and frightened my psychiatrist phoned them
Up arguing but I decided to switch doctors and have since had no problems at all very happy I switched they do regular health checks as a result of the high doses of psychiatric medication I take but they accept my psychiatrist saying these are needed.

Carpal tunnel is awful! Absolutely awful. I developed it when I was pregnant and now I’ll get a bad spell maybe once or twice a year - I’ve found a splint massively helpful, I’m sure you’ve already tried it but just in case you haven’t I thought I’d mention it. You have to sleep in it, if I catch it early then one or two nights sleeping in it and it goes, but it takes longer the longer it has been bad. I hope you get some relief, and I’m sorry doctors make you feel like this. I’ve had three (very short) courses of diazepam in the last year for my back but this last time it did bugger all.

Thing is the surgery I’m at is easily the best one where I live, and overall they are very good - can always get emergency appointments if needed, etc. Previous surgeries before I moved would give me grief about my painkillers on a monthly basis so it’s better than that. I am really anxious about it the closer it gets.

My periods are now 10 days out of 24 so I’m in severe pain about half the time, whereas when I’ve been on the pill etc it’s obviously been less often that it’s been at its worst.

Just wanted to update for anyone who’s facing anything similar.

A news story appeared recently about a patient from my practice who died from an opiate overdose so I was immediately very concerned about today, but as soon as I met the doctor I knew I didn’t need to worry. He was so kind and genuinely interested.

We had a good long chat about all kinds of things, he’s suggested a few things and I’m going back to see him in a few weeks. I wish he was my regular GP, first doctor who’s actually listened in a long time. And my meds are unchanged.

So I definitely had a good experience - hopefully anyone called in for similar will be equally fortunate.

That's brilliant @SinkGirl. A real weight off your mind!

Great update OP. I'm glad you had a positive experience today & clear next steps. Wishing you good health

That's great to hear!