Hi, I asked my GP what I could do for pain management for endometriosis (I have stage IV, now awaiting MRI scan before next steps).
He gave me a prescription for amitriptyline (10mg/day). I read online that it is handy to take it about 3hrs before bedtime because it can make you drowsy, so this way you're less sleepy in the morning. Also, it said it can take about 2 weeks to work.
Update - 2 wks later - the amitriptyline seems to be helping the strange deep pulling feeling, which I think is the adhesion from my uterus to rectum. It makes the pain a bit more distant, and in the evening when I take it, I feel slightly more cheerful. I had a chat with an endo nurse today, and she suggested increasing to 20mg per day.
Update - after 2 wks, increased to 20mg/day. Last night, I added another 10mg/day. This morning, wow, I was so sluggish! Then a migraine. Now, the migraine is over, and I feel like a sloth... But not in pain! Yay! (I'm also on 400mg ibuprofen 3x a day and omeprazole 20mg/day to protect stomach). Now, I hope the side effects will settle this week so I can be me again. Fingers crossed!
Update: after 3 weeks, with the last week at 20mg/day. I had an adverse reaction (fast, pounding heart, nausea, weakness, dizziness). The doctor advised me to stop taking amitriptyline due to the adverse reaction. Oh well, it wasn't for me.
Has anyone else tried amitriptyline, and did it work for you?
Hi. Yes it worked for me alongside other medication, did feel like I was in a fog for two/ three weeks but once I was used to it I was certainly more comfortable but did still have the occasional bad spell but it got me through to the much needed surgery. Hope it helps keep you comfortable. Xx
Do you mind me asking what other medication you paired it with to get pain relief?
My pack includes: hormonal treatment (Mirena & cerazette), and amitriptyline 10mg for pain, and probably will have the occasional paracetamol and/or ibuprofen as needed.
Hi - yes amitrip does work. 10mg is a very small dose for stage 4 and you will soon become used to it and need to increase it to get the benefit but it does help you sleep. I think I took 250mg in the end (which is more of an anti depressant dose).
I take pregablin and naproxen atm (strong anti inflammatory, so you will need a stomach protector called Omeprazole). Not sure why they haven’t suggested naproxen - it was v v good.
I also did take gabapentin (a really high dose - something like 3000mg in the end).
To be honest paracetomol was was of the better ones! But when I was in hospital I had IV paracetmol or oramorph. (I can’t take codeine based painkillers as they make me sick but that’s just me).
Don’t be afraid to ask for more if you need it - I know how painful it is.
Hi Wilderness, Here's a strange question... How much pain might a person feel before they ask for more pain management? Can you try to describe it somehow?
I'm asking because I'm so I'm out of sync with my body. I only went to A&E recently because of an episode of pain so strong that I couldn't get up from the floor, and couldn't control screaming.
But, if I'm still walking and talking, I just carry on, even though there is pain. I have a disconnect in that I feel the pain, but sort of put it on a "different channel".
I've asked a gynaecologist and GP before, how much pain to endure before seeking pain relief, and then they ask me if it interferes with my life. Well, I'm going to work... But as one of the "walking wounded". Does that count? I just don't know. I need more words in this English language of ours. 😉
Hey - your story is so familar, it could in fact be mine. 10mg of amitrip is honestly an insult to the kind of pain you’re in.
I had an A&E episode too and they just don’t know what to do with you.
You should be having appropriate pain relief - RELIEF! Have they suggested prostrap to put you in a false menopause yet? ie it stops you bleeding and further progression.
Please ask for naproxen at the very least, which will help that gnawing pain you have internally.
If 10mg of amitrip is not enough, then you can ask for a higher dose.
I was in your position and tbh I was a walking zombie and I couldn’t advocate for myself for a long time - until I said I have had enough & I can’t take this anymore. Sometimes you have to just describe everything exactly as you feel it. Instead of being strong because you have no other choice and ‘you look well’.
Wow, Wilderness, I didn't dare imagine that actual pain relief - as in stopping the pain - might be an option. I thought pain relief meant to very slightly reduce it, and that was as good as it could get. The GP told me it takes amitriptyline 2 weeks to start working, so I'll schedule a follow up appointment for two weeks from now. I don't think the GP would be inclined to try to help if I came back before then.
Having no pain at stage 4 would be difficult but with the dose you’re on and that being the only thing you take every day - that can’t be enough for you. Can you go to another GP in your practice - one that has more gynae knowledge?
Gosh, I was searching for a description of that "different channel". I feel that, too. It's like you go into a different place or part of your body/mind. Your words describe it well.
I'm on my second box of amitriptyline and now take it just after 9 pm, going to bed after 11.0. I think it helps a little with pain but I still take paracetamol now and again, which is an improvement on taking it every four hours, or adding naproxen (which I've run out of and doesn't show up on my online prescription). You are probably getting used to the pain, and so it probably affects your life more than you think. Also, sorry, but it could get worse, so when talking to doctors, it's best to bear that in mind, and try to imagine what life would be like without pain.
Hello,i did took it for a while but they still couldn’t managed with more meds,I was on
Amit,10mg
Gabapentin 1200 a day
Then came the anxiety part of it so they had to add more meds...
I couldn’t use ibuprofen or any anti inflammatory due to kidney issue and Tylenol just don’t touch the pain....but don’t be afraid to ask for option advocate for yourself ...in my case i had a hysterectomy but that’s my case at 31 if I’m not mistaking but like i said it was my case....Good luck and again don’t be afraid to keep advocating...if u can use ibuprofen combine with Tylenol did the work while on the rest of meds...
Hi, Amitriptyline works for me, I stopped taking it for a few days because I thought it wasn’t working cause I had pain again. Guess what? The pain got even worse without Amitriptyline. So started taking it again-50 mg. This helped so much. Would not want to go without it now.
I look at it like this: yes Amitriptyline works for me in managing pain, but I will still have days where I am in so much pain that I need to take regular pain killers next to this. Naproxen works well for me. And a heating pad or hot bath.
I don’t experience any drowsiness btw.
Hope that you’ll give it some time and notice a difference sooner rather than later of course.
Hi, I take Amnitriptyline. It didn’t work at first but I’ve been on it for about 12 weeks now and it does work. I started on 10mg but now I’m on 30mg. It doesn’t take away the pain completely but it helps to ease it. I couldn’t walk before I started taking it but now I’m able to move around my house and get the housework done. You get used to the side affects x
Hi June, I take it and found it worked, but have to increase my dose about every six months or so. Just give it time and hopefully it will work for you. Hope this helps. Good luck. Sending you light and love
Hi,I've been on amitriptyline for 5 weeks for sciatic pain and I have seen a difference. Was told it could take around 2 weeks to feel it working and it was about a week for me. Still having back pain and leg pain but overall much better. Having a great sleep now too. Hope you see an improvement soon x
Hi, I've been on amitryptline since around December. I felt like it was starting to help after a month, but on upping the dose gradually to 50mg I've started getting awful side effects ( dizziness, nausea, suicidal thoughts) and not seeing as much impact on my pain.
My doctor has brought me down to 25mg and it's still bad. I'm going to come off it gradually as the side effects have terrified me. My consultant has said there are other nerve pain modulators like amitryptline that I could try, so we'll see how that goes! Good luck, really hope it works for you. I think it can be so different person to person and its a case of trial and error to find what works best xxx
I took cyclobenzaprine for a while last year, which is similar to amitriptyline. I think it sort of helped but I eventually ended up with a lot of side effects and had to stop taking it (that happens to me a lot but it doesn’t mean that it will happen to you). I think it’s smart that your doctor started you on a lower dose to be able to monitor effectiveness and side effects; it will take longer to work but you may avoid extreme drowsiness and other problems. I hope you find some relief soon!
Same question for me also.my doctor also prescribed me amitryptiline..I am not using this due to scare of side effects. Is it safe also if yu try for pregnancy?
Hiya, I’ve been prescribed amitriptyline now for over 15 years. 2 x 50mg daily. But I don’t find it helps my pain unfortunately and I was given it originally as a sleeping tablet years ago. Amitriptyline is also one of the oldest antidepressants but they linked it to nerve pain which is why they try it on us.
Great to hear that some people are benefiting from it but it makes me like a zombie and instead I take pregabalin 300mg with dihydrocodeine. The pregabalin helps me personally, ten times more than amitriptyline but we’re all different aren’t we.
I’ve been doing this dance with Drs since 2003 now and lately my pain has gone through the roof. I’m paying to see a private pain management consultant though as the last two on the NHS, well, that’s another story! And dihydrocodeine just don’t cut it. I don’t want something very strong that I have to take daily as I don’t want to get addicted to anything. Already stuck on the codeine. I just want something for just like you said, when I’m on the floor curled in a ball and rocking back and forth. Take as needed kind of thing.
Hi, no worries, it’s been a long time since I’ve been on here. Things worsened in 2014 and I basically gave up on everything. I’m paying to see a private surgeon in Cardiff when I’m able so fingers crossed for that as it’s my last option.
But its called Pregabalin and it’s sold under the brand name Lyrica among others. It’s basically an anticonvulsant and anxiolytic medication used to treat epilepsy, neuropathic pain, fibromyalgia, restless leg syndrome, and generalized anxiety disorder. Its use in epilepsy is as an add-on therapy for partial seizures.
It was only after 8 years of everything starting before it was mentioned to me in my first pain clinic appointment. I’ve been on and off it ever since. It has its pros and cons just like everything else but amitriptyline for me, it never helped me sleep or helped my pain. I still get it prescribed so that when I do take it which is very rarely I know I’ll fall asleep. But then I also know I’m out for the count the next day in regards to any plans etc.
As for you saying about when you were on day 1, sleep wise or drowsy, it should def be felt but it can take up to 4-6 weeks to work. Also depending on what you’re taking it for.
But I honestly think that anything that helps to take your mind off the pain is good. Anything! Sometimes I wish I had a tub of pills and some were placebos and that I would never know whether I took a real tablet or a sugar pill because the mind is everything in regards to pain also.
Obviously I know where our pain is and where it can emanate from our body, me is my back, constant dull ache in the right side and going down to groin with stabs, cramps etc, but mentally, if you feel it’s helping you that’s great. Because it’s a positive feeling and that’s only a good thing.
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