Amitriptyline: Hello, this may seem a... - Endometriosis UK

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Amitriptyline

Mitch15 profile image
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Hello, this may seem a strange thing to ask. I have been on Amitriptyline for 3 months now and it is working fantastically and practically given me back my life after suffering for months with constant pelvic pain (lap in March wasn't successful in stopping the pain despite removing the endo).

I am really happy about how the drug is working, BUT am worried about having to be on it forever now. I don't like taking tablets, but this keeps me off other painkillers and the mini pill is now (hopefully) stopping my cycle. However my pain wasn't related to my cycle anyway, it was every day.

Has anyone been on this or something similar for a very long time, and is it likely that I will be on it for years?

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Mitch15
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Barnclown profile image
Barnclown

I've been on amitriptyline 20mg nightly for 2 yrs+ and, like you, am continuing to like its effects vvv much. Prescription NSAIDs (except for mefenamic) and analgesics have never helped me much, but I have given them plenty of time, over the decades, to prove whether they could reduce my pain & inflammation!

Originally, I was given amitriptyline for pelvic girdle gyn pain following a botched colposcopy. For which I was also being given gyn physio treatment (pulsed shortwave diathermy). But I've had a lifetime of endo pain etc going untreated except for mefenamic during periods, so was delighted when amitrip helped me recover from the colposcopy damage AND went on to reduce the pelvic girdle pain I'd been toughing out for decades

But I also have systemic lupus, which has given me a lifetime of chronic pain because it was only diagnosed with systemic treatment begun going on 4 years ago.

Like you, I've NEVER liked taking medication, and all my life I've conscientiously concentrated on lifestyle management instead...but every now & then, sometimes for years, I've had to take prescription meds....I'm 60 now, and continuing ALL the lifestyle stuff (anti inflammation diet & meds, exercise, meditation, pacing myself etc etc)..,,,and I've only stuck with a prescription med if I can clearly see that it's really helping me. E.G. my lupus treatment IS giving me back a life I almost never had.....I feel younger than I have since the 1970s.....but I take a heavy duty bunch of daily meds: daily prescription antimalarial + an immunosuppressant + the amitriptyline.....the thing is, I've got such great results without significant side effects from these meds, that I think: at my age, why not give in and take these meds as long as I can tolerate them and so long as the benefits are so obvious? Yes, the nhs is monitoring me closely via clinic visits & monthly blood tests....which encourages me to stick with these meds until a dr says we have to think again

So, I hope you get some good replies to your question. My older brother has been on amitrip long term at various times in his life (for neuropathic pain) but has stopped taking it for years at a time because he felt it had ceased to benefit him. So, my feeling is that we're each so individual, that this is mainly about listening to our bodies, as I feel you are doing, in an effort to understand whether they really need what a prescription med is giving them.....and my impression is that low dose amitriptyline (20mg or less daily) is tolerable long term for many people given the benefits it bestows.....but you can always ask your gp about taking a break from it to see if your pain has resolved enough to do without it...and resume amitryptiline if necessary

Sorry for going on at length, but you've raised a topic that means a lot to me

Take care

PS I LIKE your photo!

memyselfi profile image
memyselfi

I've been on Amitryptiline on and off for over 12 years. Originally it was for an injury to my neck, and it does work amazingly to block nerve pain. In those early days I would worry like you are now and stop taking it for a while, I'd then notice I was taking more and more of other painkillers and doing less and less every day, I'd end up taking more of my other painkillers than I should and so I'd go back to the amitryp.

I was told by my most recent gynae that you need to take 70mg per night to adequately combat pain from nerve damage (eg as the result of endo excision) but I can't tolerate that much as it becomes impossible for me to get up in the morning. Also, because I know how it helped/helps my neck injury, I know that the pain I get from endo isn't nerve damage as it fluctuates and when I reduce the amitryp my endo pain does not get worse in the same way that my neck pain does, yet I am only taking 20mg per night atm so my actual personal experience is that small doses can make a big difference. The most I have ever taken regularly is 40 mg.

I also take it because I have awful migraines and it is supposed to help prevent them, but I have never been able to work out if it makes a difference with those as I am constantly changing other things too. This year I have avoided bright sunlight and not had one yet...

I don't like the dry mouth I get with it, and you do have to be careful to make sure that you clean your teeth thoroughly as the reduction in saliva can mean you get more cavities, but I think it has fewer side effects/risks than taking too many painkillers (which is my other option) and so I'm happy to use it as necessary to be able to function.

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