Amitriptyline: Hi I had a telephone... - Endometriosis UK

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Amitriptyline

Lou93
Lou93

Hi I had a telephone consultation with my gynaecologist this morning as suffering with pain most days again and he wants to put me on Amitriptyline see if it helps and then speak to me in 6 weeks time, has this helped anyone?

Had surgery more than a year ago and pain has come back even worse he did say they aren’t operating at the moment (I knew that because of COVID) and said he didn’t want to cause anymore adhesions or scar tissue I’ve had 3 operations because of endo and adeno on the depo injection so no periods but constant pain.

28 Replies
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Hi I tried amitriptyline didn't work taking 1 as directed at first but it worked on me taking 2 on a night time for sleeping then Dr agreed for me to take two every night, then it started giving me nightmares so had to stop taking them which I was gutted about as it did help me sleep better, I'm now on tramadol on a night, zapain during the day everyday, it's horrible trying all these drugs, I had surgery in Dec and got all the pain back near enough straight away, I hope it works out for you xx

Lou93
Lou93
in reply to Bubblepoppy

Aww sorry to hear you had to come off it if it worked for you? I’m just hoping it helps, do you still struggle with pains? Xx

Bubblepoppy
Bubblepoppy
in reply to Lou93

Yes I had lap in Dec they took endo from the POD and the umbilical, and I also had ablation on the womb for adenomyosis the ablation has worked wonders for my period I no longer have them and it took the stabbing pain from near my pubic bone, then around a month after I gradually got the pains back from before ☹️ I have the pains everyday and now have new symptoms over the last 3/4 weeks along with the rib, stomach, bowel, thigh pains and sleepless nights due to pain, oh the joys of being a woman, people say they wouldn't wish this pain on anyone but I would wish it on everyone that rolls their eyes and says oh just take a painkiller you will be fine 😂 xx

Lou93
Lou93
in reply to Bubblepoppy

Oh no so sorry that it’s got worse again I know how you feel and lots of women are in the same situation as us I feel, have you seen your dr again about it? I just feel like I’m been given more tablets but the endo and adeno won’t go away it just masks the pain xx

Bubblepoppy
Bubblepoppy
in reply to Lou93

Yes I has a telephone call from one of my dr's yesterday and I told her about my new pains she was lovely ( first time I've heard from this Dr)but unfortunately added no solutions as per just to wait until they can refer me again which I've been told this already just after lockdown, I know I feel like they leave it to carry on growing giving us all new stuff to try, I think we're all just guinea pigs trying different tablets to see what takes the pains away, how often are yours I get the odd few hours in the day without pain with the painkillers which I'm grateful for xx

Lou93
Lou93
in reply to Bubblepoppy

They will have to start routine operations etc soon, mine is most days sharp pain when it’s really bad but like a constant pain most of the time too really annoying and my gyne dr is great but he just can’t do much at the moment hopefully we get sorted ey xx

Bubblepoppy
Bubblepoppy
in reply to Lou93

🤞 sooner the better, well stay safe and I hope your pain subsides for a bit for you xx

Lou93
Lou93
in reply to Bubblepoppy

Aww thank you me too hope you get sorted too xxx

I’d been on amiltriptyline for just over 18 months and I’ve just come off it, there’s definitely a difference, it helped me sleep a lot more and I didn’t notice twinges, twisty and stabby pains as much, now I just permanently feel them since coming off it, so I’d say it does work xx

Lou93
Lou93
in reply to cmbxm

Aww thanks for letting me know fingers crossed it helps me then even for a bit of relief xx

cmbxm
cmbxm
in reply to Lou93

Just a warning though, it might make you feel like crap for the first couple of days to a week, i had the worst headaches initially, but after that I felt so much better xx

Lou93
Lou93
in reply to cmbxm

Thanks for the heads up will take it on a weekend when I’m off work to see how I go on it xx

Hello.

I’m sorry to hear of your pain.

Your situation sounds so similar to mine, I’ve been left with daily pain since my last surgery.

Consultant has also advised further surgery would do more harm that good.

I take pregabalin which is also for nerve damage but can’t say it has helped much, some days I feel the pain going down my leg is better though.

I believe amitriptyline works in a slightly different way so I really hope it provides you some relief xx

I also have mirena coil which has done nothing to help pain but has reduced bleeding.

Currently on decapeptyl injections which has helped with one element of pain but done nothing for the rest.

And piled so much weight on - used to be size 8 now I’m lucky to fit in a 14!

Signed off work since December and about to resign.

Endo and adeno and all that comes with it is really rubbish!

Best wishes to you xxx

Lou93
Lou93
in reply to Lily1986

Thanks for your comment I’ve read a lot of people’s posts about pain after surgery etc glad I’m not alone in the nicest way,

It sounded like he didn’t want to put me forward for surgery again just yet wants to see if these tablets work then see me in 6 weeks time, ah I tried the coil didn’t suit me I’ve tried everything and second time around the depo injection has stopped my periods for nearly 2 years now so can’t complain about them and don’t want them to come back.

Yes I have gained a lot of weight from trying out different contraceptives to help with symptoms it’s so annoying... ah sorry to hear about your work was it getting to much for you? I’m lucky that I’m working from home at the moment but sometimes it’s a struggle to sit at a desk all day.

I just want everything removed but they won’t as I’m too young, hope today isn’t a bad day for you xxx

Ah thank you. Yes it is nice to meet people in similar situations just wish it was nicer circumstances.

Yeah I was sitting almost 10 hours a day which I tried to ignore and get through on painkillers but it finally got too much and also I have bladder damage and the bank where I work strictly monitor toilet breaks. Also the bitchy staff who have no idea don’t help either lol.

It will be interesting to hear how the amitriptyline helps you.

I’ve just read a worrying article today that they will not be doing any endo surgery apart from hysterectomys for the forseeable.

The weight gain is so depressing but if something will provide a bit of pain relief I guess it’s a price to pay.

Xxx

Lou93
Lou93
in reply to Lily1986

Yes I agree it’s nice to talk to people that understand, ah that’s no good I changed my hours so I only do 8 hours a day but that can be hard enough.

Yeh I can’t wait to try it and see if it helps I suffer with night sweats too not seen much about that on here but my dr says it’s part of it.

Oh no I hope that’s not the case would you want more surgery I it was offered? Xxx

Lily1986
Lily1986
in reply to Lou93

Luckily (in a weird way) for me the only option left is a hysterectomy but consultant is reluctant to do it as I already have bladder and nerve damage and scar tissue damage so any surgery I have will make that worse.

Just feel sorry for the sufferers who were waiting on surgery that could really have helped them.

I didn’t find my old jobs as difficult as they weren’t constantly sitting. Hopefully I will find something more suitable if I ever get the pain under control.

It’s a horrible disease and I find it hard to believe how little support and treatment there is available xxx

Lou93
Lou93
in reply to Lily1986

I get that it’s awful thinking after surgery hopefully it will get better, I don’t want children so for me I have to wait a while for that option, I’m sure you will find the right job for you there’s a lot of pressure these days around work luckily mine are great.

Yes so do I seen a lot of people posting saying there waiting, me either it took me over 10 years to be told you have got endo and adeno this is why you have the symptoms you have/had for years xxx

Yes I use it regularly. I was in loads of pain the other day/night it felt like I was in full blown labour. I was prescribed diclofenac suportries. 20 + year I have had this and I can honestly say that the diclofenac was the best for pain relief.

Lou93
Lou93
in reply to lizgray

Ah hopefully it works for me then x

I’m on 30-40mg of Nortriptyline every night and it has been an absolute godsend!

Great to hear it works for you, hoping it will help me x

Hi Lou,

I tried amitriptyline, and I went up to 70mg at night, however, I did not see much benefit. I felt sleepy and spaced out in the evenings, which was nice (haha) and I slept like a baby. I didn't see too much pain relief during the day, so I stopped. Right now, I can't get to sleep because of pain! So, in hindsight, I should have persevered with it and kept taking them.

I was diagnosed with endo in 2016 during surgery, I had another one last year, but I am still in pain - mostly my left ovary (which was stuck to my womb) and lower back. I've tried the pill, had 2 lots of Zoladex injections, amitriptyline, codeine and dihydrocodeine - and not much relief!!!

Think that the pain in my left ovary is mostly adhesions, which I know cannot be helped/treated. Every GP/ gynae dismisses my lower back pain, they say it's just a "part of endometriosis". I've been moaning a lot about it to a new consultant and he referred me for a CT scan on my lower back (but because of COVID I have no clue how long will I wait).

At the moment, I have Mirena coil (stopped the bleeding but not the pain) and take 30mg of Provera tabs a day - I've been on them a month and so far, not much relief, but I've been told it can take up to 3 months to see the result.

Anyway - my advice is to try the amitriptyline, it might help (you never know!) and sorry for such a long post/rant about me! Take care x

Lou93
Lou93
in reply to Monikka29

Yes can’t wait to try it now to see if it helps just in so much pain so anything that’s helps is good for me, yes I have pain in my right side mostly but then goes all the way across so who knows, I was a bit better after surgery but the pains have returned, I’m on the depo so no periods but pains and no regular pattern in pains etc xxx

I’ve been on it for a year now definitely helps especially with the terrible hip and leg pain I get with it

Lou93
Lou93
in reply to AnjaRose

Thanks great to know 🤞 x

Hey hunny I'm so sorry to hear you're still in pain. When I was on the progesterone only pill, which is what the depo injection is, I got constant cramps and pain in my pelvis. I'm not on it anymore and still get awful pain during my period but control it with codeine and naproxen.

I'm trying to conceive at the moment so hopefully I'll be successful and have 9 months endo free 🤞🏻🤞🏻

Lou93
Lou93
in reply to Lau2911

Fingers crossed for you then ☺️ the reason I’m on the depo is to stop my periods as nothing else seemed to work that’s the only downside I’ve tried everything’s at least a few times over the years just hoping this one will the depo will help but we will see.

Hope your pains aren’t too bad at the moment for you too x

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