Chronic pain suffers- advice needed please!

[Kate8989]

I was diagnosed with endometriosis 5 weeks ago. It’s deeply infiltrating effecting nerves, bowel etc... so it’s bloody painful. I’m awaiting an operation but I think I may have to resign myself to the fact it could have done nerve damage that I may just have to control for the rest of my life....
I’m looking for some advice/encouragement/coping mechanisms really. I’m going to list my main pitfalls

1. My pain is not constant but I usually get the odd pain each day. I’m WAITING for the pain which is making it hard for me to live each day. I’ve pretty much become housebound
2. When the pain comes on I panick, rather than just take a pain killer and try to calm down I go super panicky which is obviously making the pain worse.
3. I harp back to what my life was like before A LOT. I’m only 28, used to be very outgoing always dashing here, there and everywhere. Now I live the life of an 88 year old. I cannot accept this and tend to depress myself thinking what I’m missing out on, that I’ll lose friends etc....

Sorry for the rant but I need some help and encouragement going forward. I can’t turn to jelly every time I get pain, if I could just accept it. I mean I have a diagnosis and a treatment plan (although it may take a few months)..... so I kind of know what’s causing the pain. HELP! X

Anyone? Would really appreciate some support x

Hello, Kate. Retired doc here. You may find that having the endometriosis surgically treated will help a lot with the pain. However, if there has been nerve damage and you still have problems afterwards, you could ask your GP to refer to you to the chronic pain clinic at your local hospital. This is run by consultant anaesthetists, who can not only prescribe drugs not available to your GP, but also send you to a clinical psychologist who can be really helpful in giving you ways to manage your symptoms so they don’t take over your life.
There is every hope that you can be made comfortable, and life be enjoyable again, so please don’t despair. In the short term, pre - op, your GP may be able to help by adjusting your painkillers.

My dh has lupus and RA, plus suspected Fibro and is in constant pain. He's currently in a flare up, which has lasted longer than usual and really struggles.

One thing to do is regular medication, it works better than way. Don't wait until the pain starts to take any. He takes very strong painkillers, multiple times a day, along with other medications; one of which suppresses his immune system. He's recently been put on slow release morphine, with oral morphine as a top up, because the usual tramadol, codeine etc just wasn't enough. This helps a lot but even still he has break through pain.

He isn't much older than you either. Daily life is a challenge. Definitely try distraction, that can help at times. Sorry you're in pain, it's really awful.

I am a retired therapist and used a SCENAR machine in my clinic it has many uses but pain relief is the top one. Look for a therapist in your area, if it works for you maybe you could buy a home use SCENAR on Ebay.

@Babdoc- thank you so much for your advice. Maybe I’m not very assertive but I just find my local GP is very much like well ibruprofen is good for endo, so I just keep taking that rather than pushing for more.

I suppose it’s a wait and see situation, the op hopefully should help significantly, however most of my pain feels nerve related so I fear the damage is already done

@CheeseandGherkins- Gosh, bless his heart that sounds awful. How does he keep mentally strong through it all? I’ve had many day where I’ve felt like giving up. Hence coming on here looking for some support x

Hi, I am 28 and have suffered from chronic pain for the last 2 years as a result of a neurological condition. I have my ups and downs, emotionally and physically, but I find that when I am in a positive frame of mind, I am in less pain. I have tried a lot of things to get myself into a position where I feel generally positive - I hope one or two might help you too.

1. As said by Babdoc, proper pain management. There are lots of drugs which help with nerve pain. It might take a few tries to find the best one (side effects vs effectiveness) but they help a lot. And be persistent! Assertiveness is not in my nature either, but you have to be your own advocate I have found. I got a pain management referral after going back about every second week.

1. Take care of your mental health. Most people with chronic pain have problems - unsurprising really. I take an antidepressant called duloxetine that helps with nerve pain too, and have had a course of counselling whilst I wait for my health psychology referral. Regarding the pain and panicking, that sounds like anxiety - I took a beta blocker called propanalol before which helped with the physical symptoms of anxiety - maybe something like that could give you the space to calm down and take painkillers. Alternatively, CBT (online or otherwise) or even some breathing techniques could help.

1. I find exercise really helpful. Research suggests it is beneficial for pain and mental health, plus, it is something I can achieve at, socialise, generally feel not ill.

1. I tend to not compare before and after. I probably enjoy my life more now anyway, because I have to take things slower, and it gives me time to appreciate and see the pleasures in life more. I think that having small goals is useful.

1. Your nerve damage could be permanent, but I think you should try to look on the positive side about it. My neurosurgeon went poking around in my spinal cord with a scalpel, and gave me some nerve damage, (bladder related) and that repaired itself. The nervous system is a very clever thing, and there are a lot of good treatments if not. For example, I have intravenous lidocaine now for nerve pain.

Sorry for the long post. You reminded me of when I felt at my most down about the pain. You are probably in for the long haul, but it doesn't need to be too miserable. Please don't be afraid to ask for the help you need x

@lyrebird1- thank you so much for your response that’s some really helpful information.
The problem I have is I’ve not accepted my pain, I’m very much I don’t want it so I won’t cope with it which is why I go into meltdown when I have pain.
I mean last night I got some pain, my mood COMPLETELY changed, I sat on my sofa sobbing saying “I don’t want to be here anymore”. 2 hours earlier I was sat outside in my local pub having a cider. So that’s a good example for you of how erratic my behaviour is at the moment.
How long did it take you to get to a stage where you learned to live with the pain?
Also, please don’t answer this if you don’t want to. Do you have a family? I don’t have any children yet, I had a MC in January and petrified it will never happen xx

I've had endo and also separately have chronic pain from other health issues. Two things I would recommend: firstly this book and cd about mindfulness and health www.breathworks-mindfulness.org.uk/mindfulness-for-health-book

The cd talks you through how to deal with the catastrophising from that first twinge of pain. I'm very susceptible to that, and really need to catch myself to stop sabotaging my own situation. Relatedly, there's a good TED talk by Lachlan Mosely on what pain is and how to manage it.

The second thing I'd recommend for nerve pain specifically is amitriptyline. I've taken this for various kinds of nerve pain and it's worked well. My GP is very happy to prescribe it, so it should be relatively easy for you to get hold of.

Also, if it's any consolation, I had two bouts of severe endo and two laparoscopies, and had no problem conceiving when we wanted to start a family. Obviously it depends where your endo is, but it's not necessarily a fertility killer. I now have a mirena coil (in fact I'm on my third) and it's sorted me out.

Good luck!

Hi, it took a while, because my pain wasn't managed well for quite a while. I had a major operation in the November, and at Christmas I was feeling suicidal with the pain. I saw my pain management consultant in the February and that is when I began to manage it. I was also very much in denial that it was affecting me mentally though, so once I accepted some mental health help, things really looked up too.

I think you need to see your GP to let them know how you are being affected, physically and mentally. You can write it down if you struggle to say it to them - I go in with a notebook of bullet points. Also, I joined a Facebook group for my condition (rare) which is really helpful. Most people I know in real life mean well, but they don't understand what I go through - I hate getting sympathy!

I don't have a family either. I am not sure if I want one. My illness probably sways things on the side of not, but I have always been ambivalent. I am very sorry to hear about your MC. I am sure you will be able to have a family somehow (perhaps that is one to ask about in a support group). I have just remembered (damn brain fog) that someone I work with had months off work due to endo pain, and an operation (laparoscopy?) has made things better for her x

@ShoesJerry- thank you so much for that advice! I have just downloaded the mindfulness audiobook so shall look forward to starting that. I definitely need something to sort my head out, I can’t keep getting in a state every time i have pain. It’s just ridiculous.
My ovaries, tubes, etc are clear. It’s all round my bowel which is sticking to things together. I thought I had IBS all these fricking years.... turns out endo on the bowel. I know I’m not the only one who has been fobbed off by doctors by still frustrating. It wouldn’t have got this bad if not diagnosed years ago.
@lyrebird1- bless your heart sounds like you’ve been through hell aswell. It’s incredible the impact it all has on psychological well-being. I’m waiting for my op, I hope it brings me some relief but who knows!!!!! That’s why I’m trying to brace myself for having this long term than assuming the op will sort me out xx

Just a quick note to say SCENAR works on the nerves, so it should be of help.