Alternative pain management?

[yps13]

Hi, I have just found this forum and just looking for some help with pain management. I am 20 years currently at uni (although unable to attend a lot of the time due to the pain) and received my endo diagnosis two years ago. Two nights ago I was rushed into A&E by 111 due to sever lower abdomen pain as well as tingling all up and down my left side from my shoulder to my foot which is something I had never previously experienced (is this common?) as well as constant nausea and hot and cold flushes, the pain wasn’t the same as a cyst bursting as I experienced this a few years ago and I’m not bleeding at the minuet as it seems to have come out of nowhere as it has been relatively well managed in the past few years with only an odd flare up. The doctors have prescribed me with stronger painkillers which provide little to no relief and I am constantly taking the combined pill back to back as instructed by the gyno as this was meant to prevent another cyst from growing but I have been referred for an emergency scan. Looking for any advice at all or alternative pain relief as the doctors constantly remind me that this will be a condition I will have with me for life and pain management at the moment is leaving me bed bound

[veneerofclass]

Hiya there, I’m so sorry that you’re going though all this. It’s sad that it can take so long to find the right combination of treatment to prevent this sort of thing. I’m glad they’re getting you scans to check on things. I just thought I’d drop you a message to say the kinds of things I’ve tried as some of them may work for you or at least be a starting point on where to go from here. I’m on the combined pill like you back to back, and that stopped my periods but not all of the pain I was getting. I have nerve damage from either the endo or my surgery (they’re not too sure) and was getting pain in my hips that it was difficult to walk and also have an incredible sensitive pelvic floor due to the pain and cramping from endo for 7 years before I was taken seriously and got a diagnosis. Following my diagnosis of endo, I was put on the pill and told to try taking a small amount of amitriptyline, which is an anti-depressant but in small amounts has been found to help some people with chronic pain. This didn’t work for me so instead they put me on pregabalin (also called Lyrica) which is a drug commonly used for people with epilepsy but also neuropathic pain, this has for me helped so so much. I am still in pain some days but the painkillers I have manage this week enough now. These types of meds do take a few weeks to work. They also suggested Gabapentin which is similar to pregabalin but I haven’t tried this. So in addition to the pill and pregabalin to prevent my pain I have Naproxen, Codeine, and oral Morphine to help when I have a flare up.

I have also had physiotherapy for pelvic pain which has been very useful in trying to strengthen up my muscles which have been weakened by having the disease.

I’m not sure if any of this will help you, as of course everyone is different but it might be worth asking about more things to prevent or lessen your pain so that when you do get flare ups your painkillers have a chance of working. Sorry for the super long message, and I hope that your doctors get you feeling well again soon. X

[CelestialFluff]

Hi,

Sorry to hear you are in so much pain. I take codeine, ibuprofen, paracetamol and pregabalin. The addition of the pregabalin to the mix made all the difference to me.

I now eat a plant based diet and this seems to have eased up the pain too. Took a few months but worth it.

Alternative pain relief wise I've tried a TENS machine but that wasn't great. Acupuncture was interesting but no impact on pain. I use hot water bottles, baths and aromatherapy as required.

I find the more stressed I am the more to hurts!

I do yoga which helps to loosen things up - evidently everything tightens up in the pelvic area with endo which makes intuitive sense.

I have also used the free bit of the app curable which bizarrely really helped. It gave me a different way to look at the pain and some ideas for managing.

The additional pain relief stuff only helped alot when the pregabalin had reduced my pain levels a bit though.

A mix of all of the above makes life bearable at the mo. I try not to think about the future as I get scared and stressed and then it hurts more 😉

Take care and I hope you find what works for you. Xxx