Pain relief

[DAML8]

Has anyone got any recommendations for pain relief. I’ve tried most things..tens machine, hot water bottle, pain killers, etc. Ive been on Oramorph for years but it doesn’t touch the pain and I no longer want to take it so looking for an alternative. Any advice would be greatly appreciated.

[Jltdance]

Have you had surgery sounds like you need that! Codeine and oramorph provide the best comfort I have found. Tramadol yes but is horrible and you go crazy on it. Try amitriptyline while on the oramorph and codeine and maybe prostap injections xxx

[DAML8 in reply to Jltdance]

Thank you for your reply. I am new to this website. I’ve have 5 surgeries and a hysterectomy and nothing ever works, it’s spread to a lot of my other organs. I had ablation surgery in feb 2020 and the pain is back to normal again already I’ve tried all the above..literally run out of options and ideas now. Nothing ever works 🥺 x

[Jltdance in reply to DAML8]

Wow! This is not good I would go to a private endometriosis centre as this is seriously worrying I think! Going through all that and it’s still not worked I hope your ok xxx

[Reethi19]

Hi, sorry to hear that you’re in a lot of pain. Could you possibly try any psychological methods for pain management such as meditation, mindfulness, relaxation or hypnotherapy? I find that mindfulness helps (eg headspace App) but I appreciate that my pain may not be as severe as yours. Could you request a referral to a pain service where they could look at a combination of drugs and psychological methods? Hope you feel better soon x

[DAML8 in reply to Reethi19]

Thanks, i will definitely look into that. I have tried reflexology and reiki but to no avail. I have done a self referral for mental health and they are going to start me on cognitive behavioural therapy too x

[wanwood]

I'm sure you've tried this already but .... a bath? Something about actually being submerged in water seems to help, I suppose it's similar to the birthing pool idea for labour pain x

[DAML8 in reply to wanwood]

Yep i have a bath as hot as i can stand it nearly every day. X

[CherryPie1]

Hi hun,

What's your diet like?

I cut out gluten, deep fried food, dairy and red meat and started going for myofascial release therapy which helped manage the endo pain. Also started taking CBD oil for the inflammation.

Try some of these and I pray that you find relief.

[DAML8 in reply to CherryPie1]

Thank you for your reply. I have recently purchased a endo diet book and am looking to try that route. Do you find cbd oil works? If so what strength, brand do you use? That is something i have considered but as its expensive and im not sure if it works I haven’t tried it yet.

[Hidden]

CBD oil indeed works... build up strenght slowly. Yes it's expensive... I got it from MrPrice for a while but now they're out of it and I'm back to the expensive stuff.

I also got Shiatsu which is really relaxing and works for the pain and fatique (but that stopped now because of Covid ofcourse). I daily also take organic turmeric (with black pepper) to help with pain, inflammation and mood - check out recepies like golden milk.

Get a referral for pelvic floor physiotherapy to relax the muscles (tight muscles worsen the pain).

Also look into wide excision surgery as ablation makes things worse for most women.

Lastly, if you can get access to THC (oil) I would definitely recommend that.

[Hidden]

Hi I'm only on oramorph and paracetamol due to being allergic to tramadol, codeine co-codamol, ibuprofen. So it's a bit tricky how's I can control my pains when I'm allergic to most pain relief medication. I've had 4 rounds of prostep hormone injections hasn't worked for me. I'm due to have a meeting appointment on the 24th of April 2020 via phone call due to this convid 19 crisis to talk about next stage of what to do. has anyone been in this situation where nothing has helped I-e medication and injection wise, what was your next stage at this point???? I'm only 35 with no children and having a terrible time with endometriosis and flare ups.

[DAML8 in reply to Hidden]

Yes i have been in the exact same situation. I had 6 rounds of decapeptyl (temp menopause), then a hysterectomy at 31 and then ovaries removed a year later. Every time they perform a laparoscopic removal i find out it has spread to more organs. Nothing helps for the pain. Im in pain 24/7. x

[Hidden in reply to DAML8]

Hi I don't know what to do for the best. Have an op or not as endo can still grow back in different parts of the organs.. it's absolutely horrible pains can be hate living with endo

[DAML8 in reply to Hidden]

Yes i know what you mean. I am at the point now where I don’t see the point of putting myself through more surgeries when they don’t work anyway. I hate living with endo too..it has completely ruined my life x

[KDA0510]

I have adeno + stage 4 endo, so my monthly periods are so so excruciating. I am convinced I am due another laparoscopy soon to tidy up whatever endo has grown; but due to the current situation with covid19, I will be waiting for ages for an appointment on the NHS. Anyway, I digress....I have being taking co-codamol alongside many hot water bottles for the days where I am the most in pain and it does help with pain management for me. Best of luck, lovely. xx

[DAML8 in reply to KDA0510]

Yes i also had adeno and pcos but had a hysterectomy 3 years ago. I have tried all the pain relief you mentioned and none came close to touching the pain, i have literally ran out of ideas! My latest surgery (feb 2020) also showed up that i might have ovarian remnant syndrome, which i know nothing about and there is not much info online either but it does say its extremely painful so that might be why im suffering so much so soon after excision surgery. x

[Jltdance]

This makes me so sad to read how bad you are! I have never meet anyone who is worse than me so I can really feel what you are going through. Please seriously think of going private! Xxx

[DAML8 in reply to Jltdance]

Ah, im just glad I’ve found this platform to talk to people...I’ve never found one that i feel is right for me or one that i want to comment on but this one is really helping me already! I would love to go private but it’s just not an option at the moment..as i’ve recently had to give up work as im just not well enough to cope with a job on top of everything else. My husband’s health care wont accept me either as its an ongoing condition x

[Jltdance in reply to DAML8]

I hope you can find some peace and they are looking after you!

[Jltdance in reply to DAML8]

Have you read the book - the doctor will see you now? I haven’t read it I have it and I will read it. But this may help xx

[DAML8 in reply to Jltdance]

No I haven’t. I’ve read a few others but not heard of that one. I will look it up and order it now. Thank you so much for your help and support x