I am currently on Oramorph and Pregabalin for my endo. I am in pain all day everyday and the medications I am on aren’t really touching the pain. I have tried over 25 different pain killers. Does anyone have any suggestions on what I can try that is stronger than oramorph please?
I have attached a pic of all the different prescriptions I have had over the years (not all on the list are pain relief, it’s just from my records)
Hello DAML8,
I’ve made a medication list myself. It’s pretty depressing isn’t it!? Is the pregabalin helping you? Are you also taking an anti inflammatory medication too?
I can see on your list the depo injection. Did this help you? How did you find the HRT? How long did you take it for? It’s something that’s been offered to me but I’m unsure of whether to try it.
My pain is constant everyday too. I’m currently taking paracetamol, naproxen, zomorph & oramorph. I seem to be getting too used to these so they’re not working as well and my oramorph daily intake has increased considerably. I’m awaiting an appointment with pain management as my GP doesn’t know how to prescribe for me anymore.
I’m so sorry to hear that you’re going through debilitating pain and that so far you haven’t found anything to alleviate the pain.
Have you considered alternative methods? Such as the recommended natural meds, specific exercises, meditation, heated things like the electric matts/blankets, gluten free diet, low red meat diet, rich fish and protein diet, etc
I am a chronic pain sufferer and have tried some pain killers. Others I am ironically allergic to. So have had to resort to alternative methods. They are life changing methods as I have stopped drinking alcohol, exercise daily, take the catered vitamins to regulate my hormones, have a gluten free diet to reduce inflammation and it’s a lot to get used to. But! It helped reduce the amount of pain. I still get pain, but it is at least bearable and I am able to get through the day.
I hope this helps!
Take care.
Hi, totally understand it is upsetting. I'm sorry you are going through this.
its worth asking for an urgent referral to a pain management service if you haven't already. I would pick a hospital that also has a bsge endo centre so hopefully they'll understand endo too. They do many things aside from medication, such as neuromodulation for pain relief.
The other thing they offer is acupuncture and CBT to learn how to handle the pain mentally and emotionally
Have you tried acupuncture before? from my experience some Chinese medicine specialists are very knowledgeable about endo.
What has your endometriosis gynaecologist said about this?
I'm going to add all of the natural things I've tried just in case you want to try them. All suggestions below are good for pain relief.
These plasters were recommended by my Chinese medicine specialist. They are fantastic.
To be used daily on the affected areas. My pain regularly goes away within an hour or 2 and will last for more than 12 hours. If used for 12hrs daily sometimes it doesn't return. Plaster to be used for no more than 12 hours. Can replace with a new one if you want to use for 24hrs. These plasters are a must, they've really helped me either reduce or eliminate daily endo pain.
amazon.co.uk/dp/B07H4NQD3L/...
Pycnogenol (extract from pine bark) is clinically proven to help with endo period pain. It reduces it by at least 30 percent in all patients. Study used 60mg a day. Takes 1 month of daily use to start having an effect. I use 80mg a day and 120mg week before my period and during my period. Reduced pain from 8/10 to 2 or 3 out of 10. I couldn't find any side effects through research and don't experience any myself. Its a powerful anti inflammatory.
Serrapeptase is also meant to be helpful, please start on the lowest dose if you try it to judge the effect. My scar tissue no longer hurts after taking the lowest dose for 2 weeks daily on an empty stomach.
endo-resolved.com/serrapept...
N Acetyl cysteine (NAC) which I've started recently:
ncbi.nlm.nih.gov/pmc/articl...
it can reduce pelvic pain as well as reduce the size of endometriomas
For bloating, stool consistency and bowel pain it may help to take a probiotic for 3 months. UCL did a clinical study and Symprove was found to be the most effective (unflavoured version tastes bad so always get a flavoured variety). I have a leaflet from my dietician explaining the study and the other probiotics that are effective. Feel free to send a private message if you want me to send you the leaflet. I went for Floratrex because a small endo study indicated that endo reduces Lactobacillus levels, which means our body's anti inflammatory response is hampered. Floratrex reduced my daily pain and pain during my periods.
There are many cheaper brands such as biokult that you could try.
Both yoga and pilates have helped me.
At 1hr 20 mins of this video below there are stretches from a physio at Royal Free Hospital. They are good for the pelvic floor but many of them are good for endo too.
Resuming Endometriosis Services: What happens next?
endometriosis-uk.org/webina...
Particularly the diaphragmatic breathing, child's pose and dropping your pelvic floor in this selection below:
medium.com/@ThePelvicExpert...
Pilates for endo
Be careful with kegels, most women with endo have a tight pelvic floor so kegels will make it worse.
I hope that helps and if you're in London send me a private message and I'll give you the details of my TCM doctor.
Best wishes
You have been on an extensive amount of medications. While I can't suggest anything new, maybe a different mix of 2-3 together might help. I take Mefenamic acid plus tramadol plus heat bags plus a tens machine and all together usually make an impact for me, although not 100% of the time. Sometimes is better than not at all. That isn't to say the same mix would work for you, but maybe that the right mix would.
My husband has chronic pain due to an injury that resulted in the pain pathways healing incorrectly. His meds are available in more than one form and he finds moving between them helps to stop his body building up as much of a tolerance to his medication. Perhaps something you've been on has more than one format, and one might work better than another, for you. Something you could consider speaking to your pharmacist or GP about.
I'm sorry I don't have any other suggestions medication wise for the pain. I hope you find something that works for you as I know how horrific it is being in extreme pain with no way to stop it.
Hi
I find Oramorph only does so much. There are still stronger morphine related drugs, but they’ll be loathe to give them out.
When I saw the pain consultant I took an article about an endo patient who had a nerve block and really helped her pain. The symptoms were very similar. He wanted to try Amitriptyline, which does a little. If I wasn’t having hysterectomy soon I would have gone back to try and see if he’d do a nerve block.
It was titled Cross-linked Hyaluronic Acid for the management of neuropathic pelvic pain. The site was practical pain management.
This will be my back up plan if op fails
Maybe the research at Edinburgh will be finished soon and results published in favour of destroying endo cells 🤞
Hope you get some relief soon
Wow, that’s a big list. Have a look at a Livia device, it’s like a TENS machine but less sticky. It’s really good for chronic endo pain. Takes a little getting used to but has to be better than pumping your body full of chemicals. You can crank it up and down as you need it. Having said that I had to take morphine today and last night which doesn’t touch my pain but knocks me to sleep. I on,y do this about twice a year when it gets hideously bad. I also had a large plug in heat pad, plus my Livia device and in the end I could start to manage my pain. I think the Livia device is on Amazon but am not sure. Nina. X
Medication to 'mimic' menopause 
Medical induced menopause
advice please... I don't think I can carry on like this. in pain and desperate!!!!
Drained | Seeking advice 
Is anyone NOT on any hormonal medication?
