Pain relief

[Puffling1]

Hi,

I have severe endometriosis and am waiting for excision surgery and hysterectomy. I’ve avoided painkillers until now because of side effects particularly on my bowel but I’m really struggling to manage now. I’m not able to do much day to day anymore other than getting showered and dressed and am getting very little sleep. I’m considering asking my GP for a prescription but would like to know what other women find works for them. Pregabalin etc doesn’t work for me and I would need something that doesn’t make sleep even more difficult

[Purple_Badgers]

Hi Puffling! I have a variety of painkillers that I use at different times according to pain levels/situation. I like nefopam as it takes the edge off, particularly when combined with paracetamol or ibuprofen. It does make me drowsy, which means I can’t take it if I need to drive anywhere, but on the other hand it’s great to take last thing at night to help me sleep. I also take naproxen, but only if I have had a meal or decent sized snack, and always with omeprazole to protect my stomach. (I don’t always feel like eating much if I’m in lots of pain and/or nauseous). I take codeine if I’m desperate for sleep, as it really knocks me out, but with caution as it will also give me terrible constipation (the great enemy of bowel endo sufferers!!). To counteract this, I got some lower-dose co-codamol from the chemist and I regularly take lactulose, which is a lifesaver. I use a hot water bottle a lot and now we are into the cooler weather we have put the heated under blanket on the bed, which for me is bliss on achy back/hips/legs at night. 😀 Hopefully the docs can help you find the right combination for you xxx

[Akitalove123 in reply to Purple_Badgers]

Hi Purple_Badgers!!

I am 22 & have this, I find it extremely difficult to open my bowels as that causes the most pain, I have been given lactulose - does that help with the pain? I’m just very anxious & cautious that it’ll start me off but still cause the severe pain… I have been given pain killers but they are only just starting to relief the pain, unfortunately the NHS is so full right now my option to is to go private. I am hoping to do this after Christmas to get this looked into more…

[Purple_Badgers in reply to Akitalove123]

Hi! The lactulose can reduce the pain by softening the stool, making it easier to pass, and for me it gently encourages me to go, so less pushing/straining is required. It was first given to me in hospital after bowel surgery. It sounds like it really could help you, along with your new painkillers. Good luck - I hope you get to see someone soon xxx

[Puffling1 in reply to Purple_Badgers]

That’s so helpful Purple-Badgers thank you. Hopefully my GP will consider them and fingers crossed they’ll help.

Heat is the only thing I use at the moment. I have my heat pad on almost 24 hours a day but it does make a difference, more than I’d expected.

I use movicol and glycerin suppositories for my bowel as lactulose gives me too much pain, or at least it did when I last tried it but that’s probably 15-20 years ago and things have changed so it might be worth trying it again at some point.

Antidepressants and pregabalin are what I’ve been given to try in the past but they don’t work for me unfortunately. I’ve just been trying to put up with the pain but I can’t carry on like this. I’ve managed to get an appointment with my GP next week. Not sure how open they’ll be to my request but 🤞🏻

Thanks again P-Bxx

[Hopeandpray in reply to Purple_Badgers]

Everything Purple Badgers has said is spot on. But for me, in place of lactulose what I use for the aweful constipation is CosmoCol and it's been a lifesaver in terms of the constipation.

[Puffling1 in reply to Hopeandpray]

Thanks Hopeandpray,I think cosmopol is the same as the movicol that I use along with daily glycerin suppositories

[Puffling1 in reply to Purple_Badgers]

Thanks so much for the recommendation purple-badgers. Ive been given a prescription for nefopam to try alongside paracetamol 🤞🏻

[WanderlustLost]

I don’t know about anyone else but I was prescribed amitriptyline as part of my pain management regime. It makes you really sleepy/dizzy at the doses you need for pain relief so I take it in the night and unless my pain is really really bad I can usually sleep. I also take codeine, ibuprofen, and paracetamol 4 times a day and morphine as needed. At the moment the endo has grown back really bad and my uterus and ovaries are stuck together again and all stuck in a lump on my bowel (again). I had a lap in 2019 and they removed most but not all then and obviously it’s back. Waiting for a second surgery as it’s also on my diaphragm. So at the moment I’m taking 4 doses of oramorph most days too. I need better pain relief but am reluctant to go for anything stronger as it makes the brain fog worse and I work full time from home.

Anyway, if you can get amitriptyline it might help with the sleeping and the pain? Good luck.

ETA: I have a hot water bottle on the go at all times too. And it helps more than you’d think!

[Puffling1 in reply to WanderlustLost]

Hi wanderlustlost,

Its such a debilitating disease, I’m so sorry to hear it’s grown back. I hope you manage to get surgery soon.

Unfortunately I don’t do well with antidepressants and amitriptyline was the worst of all of them for me and codeine stops the small amount of bowel movement that I get so I’m not able to use that either. It’s so strange how a medication can work well for one person but cause issues for another

[WanderlustLost in reply to Puffling1]

Gah. I’m so so sorry. I have pretty bad IBS so the slower digestion/bowel function with opioids just makes me “normal”. I suppose it’s lucky really because I cannot function without pain relief. I’m in a wheelchair due to the pain of walking as it is!I know it’s not a legal option but have you tried cannabis? Some people I know with endo get a LOT of relief from eating or smoking cannabis. I’ve heard CBD can help too but I have no experience with it.

[Puffling1 in reply to WanderlustLost]

I’m so sorry to hear that. Such an awful disease that causes so many issues.

I’ve noticed quite a few people saying how well cannabis works but wouldn’t have a clue how to get hold of it. CBD oil seems to have more mixed reviews from what I’ve seen so far, that and the high price tag have made me hesitant. I wish they would regulate these sort of things so we could feel a bit more confident about trying them.

I’ve got an appointment tomorrow and hoping they’ll prescribe 🤞🏻

Thanks wanderlustlost

[WanderlustLost in reply to Puffling1]

I’m with you on the CBD. It’s unregulated so I am never sure what to buy and even if I knew what percentage/concentration I wanted there’s no guarantee what you buy is actually what it says it is. And yeah, I’m also a sad case in that I’m too old/out of touch to know where the kids get their weed these days.I am originally from the states though and it’s legal where I’m from. When I visit my dads they always take me to a dispensary and it’s honestly the best relief from the pain I’ve ever had. It doesn’t stop the pain exactly it more like sends it way way to the background or turns the volume down so that I can function without the pain being my main focus and dominating everything I think and do.

My GP is hopeful the NHS will authorise medical cannabis for other conditions but it’s a few years away so no good for us right now. She tried to get me on a trial for endometriosis and cannabis in the local teaching hospital but sadly the study was cancelled before it even started.

[Ronsk]

Hi there, can I ask you if your struggle is to do with your pain? Do you suffer from extreme fatigue? I'm wondering if mine is causing me fatigue? One minute I'm fine and the next I'm completely wiped out. Not sure if anyone else has this symptom.

[Puffling1 in reply to Ronsk]

Hi Ronsk,

Yes I have both extreme fatigue and pain. I used to have what I would call flare ups where the fatigue would be really bad along with the pain but also periods of time when I was okay, but now I have the fatigue all the time along with varying levels of pain. I’m sorry you have the fatigue too

[Ronsk in reply to Puffling1]

Yeah I've had bouts of it at times but been feeling it the last few weeks on and off. Was wondering if it was endo related or not. I'm just concerned as I work on a hospital ward and a very busy one at that. Luckily it's not affected that yet but I'm worrying it does at some point. Currently looking for a lighter work role. I'm so fed up with it all. Years ago I was on tramadol daily for 10 years. Luckily at the moment it's been one week a month and during ovulation. But it seems to be getting worse again. Its not the pain meds that are causing the fatigue. I've not really been troubled by the fatigue before so that's new for me.

[Puffling1 in reply to Ronsk]

It sounds like it could be. I’m utterly exhausted all of the time and pushing myself to do more seems to make things worse for days

[WanderlustLost in reply to Puffling1]

Just hopping in to say to you both ( Puffling1 and Ronsk ) that I also experience constant fatigue. It’s a side effect of the constant pain. 😭

[Puffling1 in reply to WanderlustLost]

I agree and think it’s also related to the inflammation