Pain relief

Hi, has anybody managed to find anything that relieves pain for endo yet? I have tried so many different things, been on ibuprofen, paracetamol, mefanamic acid, narproxen, cocodomol, tramadol, have the coil fitted and am now on the pill alongside the coil but I am STILL in constant pain, sometimes to the point I end up vomiting because I hurt so bad. The only place I feel comfortable is in the bath or when I have a hot water bottle (which I have started taking to work with me) but I really am struggling. My doctor has basically shunned me because she doesn't know what else to try and the hospital aren't interested. Thanks in advance :)

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  • I have taken my hot water bottle to work also. Changing my diet helped with reducing pain. I am also going to try a tens machine so will let you know how that goes.

  • I'm thinking of alternative ways to try and help with pain. I thought about trying to alter my diet. What changes did you make please? Thanks a lot

  • Hi, I went to see a nutritionalist so it was specialised to my symptoms but I have cut out wheat, dairy, sugar and caffeine. I eat fresh, unprocessed food. I use coconut or unsweetened almond milk and cook with coconut oil. I was told to increase my protein intake. I eat mainly vegetables, sometimes fish and then brown rice, oats, quinoa, lentils. I eat eggs and have now started using organic when I can. When I first started I was very strict however at times I become more flexible (eg. Christmas). At home I am strict and stick to the above but when I go out I allow myself the odd meal/ hot chocolate. I tend to bulk-make meals on a Sunday that will last me for the week so end up freezing some stuff eg. Veg chilli, lentil Shepards pies. I drink herbal teas, take probiotics, multivitamins and an iron supplement. It does take time and effort but I can tell when I've not stuck to it as the pain is worse. My pain is also worse when I've not have enough sleep! Hope it's going well xx

  • Yeah I have started cutting things out of my diet to help and am drinking much less coffee and tea and if I do have coffee it is decaf. Thanks yeah if you could let me know that would be great :)

  • Sorry to hear your in so much pain! Have you spoken to yor doc regarding seeing the gyna maybe?

    If your still in that much pain and nothing is helping you need to push until they help!

    I find heat pads work a treat so I don't have to bring my hot water bottle, also deep heat works for me, I know it's for muscles but it seems to help be out with easing the pain!

    I would also recommend someone who can massage around the stress areas to relax the muscles!

    Hope this helps xx

  • Hi :) yeah my doctor contacted gynae to try and refer me back but they basically said there was little they could do just now so just to keep doing what we have been doing, trial and error with different painkillers. I've to contact them in three months if no change to let the pill kick in (had the pill for 2 months and the coil since my laparoscopy in July). Thanks I will give deep heat a try and also see about someone who would do a massage. Thanks for your help :) xx

  • Well I take oramorph when the above fail but I also had the same issues with the coil. My endo nurse wasn't convinced it was in high enough so ordered an ultrasound to check. I ended up having it removed in a and e (I was in there several times from the pain begging before they listened) the relief was instant, which further confirmed my nurses theory

  • With me yoga does help, exercising does help with pain and it doesnt focus you on pain, but the exercise. It is gentle and just do what you can.

    I know it is hard, because when you are in pain this is all the thoughts will be about and nothing else.

    Did you ever try CBT therapy, this will help with thoughts, behaviour and physical symptoms. You can find free sessions via NHS.

    Massage can help or maybe even acupunture.

    Good luck!!!

  • I have a tens machine and find that it helps me. I tend to use it at work, as it's nowhere near as obvious as my hot water bottle! Still use my trusty bottle at home. I was referred to the pain management clinic at my local hospital, and they gave me one to try for a couple of weeks, as well as some other approaches. Not everything has been as successful, but I'd say it's worth going if you can get a referral.

  • i have tried all these meds too, I'm awaiting a coil to be fitted, forced on me by my gynea I'm so scared because I know it doesn't help with pain relief. I completely understand your struggle. I am also going to try a tens machine there has been good reviews with this, hope you start to at least feel a little better soon x

  • The coil was meant to stop the bleeding (I have bled pretty much every day for the past year) but it made no difference at all and the pain was just the same, yet I know lots of other people who have the coil fitted in order to help with the pain etc and it worked wonders for them so hopefully yours will too! I think my body just likes to be awkward :( yeah I think I will try a tens machine too. Thanks, I hope you get sorted soon too x

  • My gp does not think the coil will help but got to tick the box for the consultant. Feel like I have no control over my own body. Oh well I'm booked in on Friday so we will see. I've ordered a tens this morning off amazon xx

  • The coil does seem to be one extreme or the other. I really hope it does help!

    I took the coil aongside two POPs (progesterone only pill) a day & still bled everyday!

    Now I am on just the two POPs a day and it's stopped the bleeding! The weight gain is horrendous though. I actually ran out before my perscription was due this month & I feel much better in myself (with the pop there was the weight gain, & depression so I also had to take setraline). However, no other hormonal treatments have worked for me so like you I feel I HAVE to take it to keep the Dr happy.

    Yet we shouldn't HAVE to. In a recent endo support meeting we had a pain specialsit come, your consultant can refer you to one. She stated some causes of pain may not just be endo because their could be nerve or muscular involvement, this is why sometimes oramorph doesn't work. I'm not sure HOW likely it is (she's a pain specialist not an endo specialist) but it's certainly good to know and an option you could try?

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