GP reducing pain relief

[Naffers]

Hi guys I’m at my wits end. I have stage 4 rectovaginal endo. I have had one surgery that confirmed this in 2016 and no further surgery. My last consultant follow up was a round 6 months ago.

I am managing just about with analgesia and sheer powering through as I’m reluctant to have the surgery as much as I know I will at some point. I was just about coping and having a number of sick days while continuing my role as a nurse on a busy ward.

I take paracetamol, ibuprofen and codeine through the day. The GP have always not been happy about increasing my codeine which is 30mg 4xdaily so it can still be increased. To my horror they have reduced this to 2x30 and want me off of it. I have explained I have had to leave my job for an ‘easier’ role physically to deal with the pain, I am not coping and I have to struggle still but have some control over my working life. I have now had to have at least 5 appointments with them in the 3 months that they have done this and are adamant that this is ok. Even as a nurse I feel powerless to express my needs as I am being ignored. I have spoken to 3 different gps in this time and now have another telephone consult this morning. I am at a loss for words. I am struggling to work and just about coping, I’m taking just as much sick days while working less hours. I’ll be honest here and have had to resort to borrowing some cocodamol from my mum who never really takes hers that comes through- bad I know but I need to be able to function and work.

I was given amitriptyline but couldn’t take it as it is contraindicated in psychosis and it was only when I received it I picked up on this. Naproxen gave chest pain like heartburn so had to stop that a while ago.

Please if there’s any advice you can give me I would appreciate any support before I speak to my gp and inevitably end up in tears later.

Thanks in advance.

[MissPickles]

Were you given omeprazole alongside the naproxen? If not ask the GP about this it should protect your stomach from the acid and prevent the heartburn. If naproxen really isnt an option I would just be clear with them that you need increased pain relief, so if you cannot continue with codeine ask what alternatives there are. Let us know how it goes, we may be able to give further pain relief tips if you cannot get anywhere with the meds x

[ClairTucks]

I'm so sorry you're going through this. Can your gynae insist you're kept on the codeine?

[hrcArch]

I have found that often the only time GPs tend to fully grasp my pain is when I politely, but firmly discuss both the pain and what my alternatives are without pain relief in clear statements. Things like 'I haven't eaten in 3 days' or 'I am unable to stand/sit up/use the bathroom without severe pain.' I also keep track of my symptoms and have a printout of the pain scale next to it, so I can pull all that out and say 'I've been at 7-9 for a week, and if I don't get help here, I will likely end up in an emergency room.' Last week I had severe pain in a new location and was almost brushed off by the GP, so admittedly said (in desperation) 'How much more pain and suffering will I need to endure before I can get the help I need?' I have found those kind of statements usually helps more, because its very concrete sentences that clearly indicate this is more of a problem than just bad cramps!! If they still fight back, which is relatively rare, I will bring up test results and statements from specialists (my MRI shows stage 4 endo on my bowel, bladder and ovaries, and gastroenterology has written to them about how bad/painful it is).

A few people I know will, if they need to, ask the GP to put in their records that they came in asking for more pain management and the GP's response was to reduce their pain meds. They also ask for a printed copy of it. I've never felt the need, but they have said that sometimes asking for it in writing before you leave the practice makes the GP think through what they're doing just enough that they realise it's not viable.

[EndoG]

Hey, I’m so sorry you’re going through all this. Somebody has mentioned this already, but what always works for me, if they refuse medication or referrals, is to say that I want the refusal written on my medical record with who refused it and why. Every time I’ve said that, I magically get pain relief or a referral to somebody with more expertise!

[luthien]

Sorry to hear you are going through this.

I had rectovaginal endo too and stage 4 - was diagnosed during my first lap to investigate and excise endo. I had a consultation with my specialist whom said he would prefer to remove the endo on my bowel (with a bowel shave) as when it's left it could perforate needing a bowel resection (possible colostomy bag and laparotomy) which is a lot more invasive surgery. We opted to have the lap to do the bowel shave with my specialist and an additional colorectal specialist - only 6 months after my first lap as they both were concerned it could perforate the bowel (severe symptoms and bleeding in the bowel). I didn't like the idea of it getting worse as the symptoms were already awful.

I understand you'd like to know about pain relief and leaving surgery for now, however surgery is really the only way you can reduce the pain and severity of the endo. If you don't want surgery or not ready for it that's okay. I just thought I'd add my story to help with where I'm coming from on this.

Pain relief unfortunately comes with all it's side effects some of which you know about / have experienced but what usually doesn't get mentioned is its long term effects on our digestive system which can exacerbate symptoms. I think it's a "new" thing GPs have brought in; reducing pain medication after a period of time to reduce the persons dependency on it both mentally and physically, which I feel should be a case by case basis as quite a lot of us are aware of the mental dependency effects (and know it's not that) but really do need it physically as we just want to be out of pain.

Ignore me if it's not relevant!

[katie26]

Hi, I would recommend the naproxen but make sure you have it after or with food and ask the doctor to prescribe omeprozole.

I have s4 RV I've ended up with a bowel resection and temporary stoma.

I had a baby via IVF 6 months ago and asked for a hysterectomy but as I'm only 34 and would need a radical they said no. They asked me to try the mirena coil... I laughed considering surgery hasn't even helped but if I'm honest it's really dampened down my flare ups. Not sure if you have tried this before.

Also taking naproxen with co-codamol is really beneficial as they increase the effectiveness of each other. Ask Gp or Gynae to prescribe the co-codamol rather than codeine I find it more effective.

Good luck. From one S4 sufferer to another I know how you feel 💗💗

[lucikam]

Hi! I would like to ask when you mentioned codeine do you mean pure codeine or solpadol (co-codamol which also contains 30mg codeine)? If you mean pure codeine maybe you can get easier the solpadol version? Is there any difference between them, I mean pure codeine or solpadol ones (regardless it also contains paracetamol)? Difference between the codeine I mean? Like you said you take 30 mg, solpadol also contains 30 mg per tablet.