Chronic lower back pain, amitriptyline an... - Endometriosis UK

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Chronic lower back pain, amitriptyline and the zombie.

Silverskylark profile image

Hi Everyone, I hope that you like me are hanging on despite all the hassle Covid has caused.

I've had chronic lower back pain for the last few months and not really been sure what's causing it, whether it is endo, zoladex or what really. I called my GP who prescribed 10mg of Amitriptyline taken at night I could up the dose to 20mg if pain was severe. After several months of being on it the pain was still evident although a little dulled, but I had become an emotional, anxious, agitated, sleepy zombie. I got so down etc that I would wonder round the house trying to settle at something and just couldn't focus. It drove me potty and my husband too. I've now decided to wean myself of it and hope I come back to life! However the back pain is still there, so my question is has anyone else suffered the same thing and what did you try, did you try any natural remedies?

I am waiting for a hysterectomy, which may now happen at the end of the year postponed from May/June.

All the best, xx

21 Replies

I’ve been on it a few weeks, not long enough potentially, tried upping to two, but back to one. I’m not a fan of these things either.

The back pain I get is low/mid and kidney area. It kicks off if I’ve been a bit active.

I’ve found lying down and wheat bags best, but annoying 🤣

Is it due to endo that they’ve suggested a hysterectomy?

Hi Moon_maiden,

Thank you for your reply. I played around with the dose even chopped a couple in half so I was just taking 1 1/2. I found 2 just wiped me out all I wanted to do was sleep!

That's exactly where I get it and it can travel either down so it affects my hips and legs, but also up and round on a really bad flare. I agree exercise increases the pain, but so can sitting for long periods, so rest doesn't help. It is driving me crazy.

I will try a wheat bag used to help with period cramps. Also going to try lavender massage oil as I read somewhere lavender might help.

Yes, I have severe stage 4 and it has affected my bowel too :-( Although they were a little reluctant and I tried various other treatments first that didn't work. They said it may go away once I hit the menopause, but most women I know of a similar age or older still haven't gone through that yet and I just want to be well again.

All the best for your trials with endo :-)

I can’t sit upright for long, so can’t drive far.

I’ve just finished Zoladex, initially gynae was hoping this would work and natural menopause kick in. Technically should have already got there. It didn’t do anything for pain.

Have you had surgery on your bowel?

I’ll find out tomorrow what the plan might be.

I'm sorry that your pain is limiting what you can do. I find I have to pace myself and if I have a good pain day I often pay for it the following day and end up in agony.

I have found that zoladex hasn't helped with pain, just sorted the constant bleeding. They told me to carry on with it so on my 10th month of it now. To be honest the GP has been as helpful as they can, but the gynae team have been a bit hands off and if I call or even write I get very little response. I know they're under pressure esp since Covid, but we all still need help.

I haven't had surgery on my bowel yet that is all supposed to happen when I have my hysterectomy and I have no idea as to what they need to do or the outcome. I was told I would find out on the day of my op.

Good luck for today and i hope they have a plan that will help you so you can get back some normality. :-)

I know how you feel, it’s not easy. Got stuck a bit in traffic picking up prescription and it started playing up. I avoided some by going round the houses.

I’ve now committed myself to a hysterectomy. Spoke to endo consultant today, he seemed nice over the phone. I know he’d have had notes and they had MDT meeting so I was assuming he knew it all, but didn’t come across that way. I’m crap at explaining things. He wasn’t going to commit on what endo would or wouldn’t be there, which is understandable even with MRI. He did suggest waiting for menopause, but as Zoladex hasn’t done anything and who knows when that would kick in naturally I can’t see any quality of life.

I hear you, it's such a shame that it rules our lives so much and yet if people just looked at us they would think nothing was wrong. Truly an invisible cruel disease.

So how do you feel about having a hysterectomy? I felt ok about it as in the end endometriosis hasn't really done me any favors. Although I am scared too.

I'm not any good at explaining things either and I often write stuff down to say and it still doesn't come out right. Yes they have all the info in front of them, yet they can still be vague, perhaps they don't want to scare us too much or perhaps it is easier to tell once we're under and in surgery. It sounds as if we are very much in the same boat and both hoping for a better life post op!

I hope you have a better weekend pain wise and enjoy it. :-)

I decided a couple of months ago it was likely only real option. I hate the idea of another op. I said to him at times I feel I could stick a knife in and take it all out myself, I think he got the gist 🤣

I’d prefer to know ins and outs, I can see me booking a private session to clarify everything as I don’t think I’d get a pre op appointment on NHS.

I had notes, but didn’t really help much. I think the realisation was sinking in 🥺

I’m reading up now just to scare myself even more.,,

🤞 we both get this sooner than later and recovery is ok

I hope we both get sorted soon too :-) and try not to scare yourself too much ( I say that as much to myself as to you!).

I had a brief poke at private treatment and the cost scared me a bit, will need to do more research on that.

Let me know how you are getting on x

😀 already happening 🤣

The lap cost just under 3K inc overnight stay. I didn’t think horrendously expensive. No way could I afford the next one without a second mortgage, and as unlikely to have a job not a good idea. No point in looking until this is over with.

Last night took two amitriptyline at around 7:30pm, I don’t know if taking it earlier helped or the oils I was breathing in, but slept right through, woke up around 8, not sure exactly when went to sleep 11:30/12 ish.

Hasn’t been too bad today, although just swept up fallen apples so might be writing to soon 😂

Glad you had a good nights sleep and hopefully nothing too untoward with amitriptyline. Maybe I am just a little too sensitive to some of it's affects.

Yes those figures are a bit scary! I have a very part time job, but had to give up my fulltime ish job as I couldn't cope with my health stuff and the stress the job was causing.

I hope it continues to be not too bad, but yes we are all aware that it sometimes comes back to bite us!

Medication is hit and miss most of the time, I’m very conscious of not getting dependent on any of it

Figures were scary for me, sold some jewellery to pay for it. That was my holiday for the last umpteen years 😂

Currently on furlough, once that’s finished, I’m hoping op will be done and dusted.

Imyogi profile image
Imyogi in reply to Moon_maiden

Hey, if he suggested waiting for menopause, have they suggested the Prostrap injection? It gives you a fake menopause and has totally got rid of my pain. There are side effects but to me they’re worth it as my pain kept me bed bound.

Imyogi profile image
Imyogi in reply to Imyogi

Also give ‘how to treat endometriosis naturally’ a read if you haven’t already. I’m trying my hardest, sugar is my biggest vice but it’s also helped me shed a few unwanted pounds 😊

Moon_maiden profile image
Moon_maiden in reply to Imyogi

I’ve recently finished a course of six Zoladex, didn’t help with pain, or not that I could tell anyway.

I’ve switched to goats milk and mainly gluten other dairy free. Sugar, not really. I’ve seen the book, haven’t bought it, I’ll take another look.

How are you feeling today?

Imyogi profile image
Imyogi in reply to Moon_maiden

Not heard of zoladex, so not aware of the side effects. There’s so many drugs out there they try, to see if it helps Endo but none are designed specifically for the pain it causes, so it’s a Russian toilet as to what works for each individual.

My Prostrap injection made things worse the first month as my body was fighting against it but since then I’ve been pain and bloating free. I do get hot flashes and my joints are very achy but I’ll take that over being doubled over, not being able to think pain of Endo any day

Imyogi profile image
Imyogi in reply to Imyogi

How are things with you?

Moon_maiden profile image
Moon_maiden in reply to Imyogi

I know it’s always there, worse if I’m active. Zoladex is another GNHR treatment. It’s great that prostrap is working.

I increased the amitriptyline last week and think it might be working a bit. I’m experimenting with not taking the laxatives to see what happens, I do this occasionally.

It’s definitely an individual thing without doubt 🙂

It’s such a shame that the amitriptyline has had that affect on you. I take 75mg at night for migraines and I luckily don’t experience any side effects.

Is there not an alternative you could try? Or have you discussed a medical menopause with your gynae? X

It is a shame as a lot of people and the GP said it was a wonderful painkiller and so I was hoping it would sort me out, but already I feel much better head wise despite being in constant pain.

I will have a chat with the GP and see if there is anything else, as long as it doesn't have the same affect. I am on Zoladex and have been for 10 months and take HRT too, this was to control the inflammation and bleeding in prep for my op. Since Covid hit I was told to carry on, so I stay as I call it "in maintenance mode", but it would be really good if I could see my gynae team and chat about things as being on zoladex hasn't been an easy ride.

xx

Could I suggest to everyone with lower back and kidney pains to give something a go, I also suffer from this and post excision I was surprised to find myself in Lower back agony again. I have a background in training and weightlifting so went to see my physio to discuss and check this wasn’t muscular. So two season of physio and he’s found my right QL muscle is so tight and in spasm. He’s managed to release it which is agony but I’m slowly recovering, I’ve had endo, kidney stones and struggled to define the difference, but he’s suggested due to pain and crunching up, hot bags and all kind of what he calls guarding positions people in pain often have this large muscle cramp and it won’t release its self.

So just putting it out there maybe worth a try to go and get that whole are and specifically the QLs released and he gave me some stretches.

From someone who thought I could tell muscle from endo it’s come as a surprise to me that some part of the pain maybe my muscles.

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