Amitriptyline for endo?: Hey everyone, I... - Endometriosis UK

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Amitriptyline for endo?

itslea
itslea
27 Replies

Hey everyone,

I had my first gyno appt where I explained my 10 years of hell with pelvic pain.. guess what I’m not crazy!

She agreed with the diagnoses of endometriosis, she gave me a tablet to help the pain called Amitriptyline.. has anyone else been prescribed this for endo pain?

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Thecraftyadder

Have you had a laparoscopy arranged to confirm the diagnosis?

I was prescribed it for post opp nerve pain. It made it impossible for me to function so I had to stop it. Can make you very sleepy and spaced out. But someone told me on here they found it good. You won't know unless you try it but I'd be concerned if your gynae suspects endometriosis that they only offered pain relief.

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itslea

Thank you for the reply.

No she has not arranged a laparoscopy, however i explained that in dec 2016 I had a 20cm dermoid cyst removed along with my right ovary and tube via Laparotomy surgery.

I suspect she will be getting the notes from my oncologist at the time to see if anything may have shown as she asked for all the details.

She did mention that she suspects that the endo may have attached its self to all my scar tissue from my c section and laparotomy and that if she were to do more surgery’s it would possibly do the same to the new scar tissue. So I am unsure if that maybe the reason also.

I did put my self on contraception a month ago to see if that helped ease the pain at all (which is has slightly) also she did say that she will order a scan on my pelvis to check my ovary etc and see how I get on with Both the pain relief and contraception.

So, I really don’t no anymore then this... is this not the normal route ? Eek

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Thecraftyadder

It sounds like you have a complicated history. Maybe you should discuss the possibility of getting an opinion from a specialist in endometriosis with her next time. I certainly wouldn't advise surgery with someone who isn't. A general gynaecologist missed my endo during my first lap. I've read that there is more chance of adhesions when the surgery is not done by an expert.

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Thecraftyadder

I just thought It might be worth posting a question on endometriosis in scars and see what treatment pathway women with it have been through. I know your head is probably reeling still from your appointment but that might give you an idea of what to expect or where there might be a specialist to deal with it.

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Irisbaby2
Irisbaby2
in reply to itslea

Maybe you need a more professional doctor, who is expert in endometriosis. If the contraception not be so effective on you, maybe a herbal medicine Fuyan Pill can be recommended. It can treat endometriosis and has no side effect.

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Suzileverell

I have been given this before for my pain. My Dr told me I have to keep taking it for a week or so to notice it working but unfortunately it made me so drowsy I just couldn't get going. I already struggle with fatigue and this made it worse. I was also cancelling work even more than normal because it wasn't safe to drive on it and it didn't touch the pain. But I have heard other people say it's really good. I hope it helps with you!

Also if you do end up having a diagnostic laparoscopy I would advise having an endo specialist do it. I had mine done with a general gyno because at the time I didn't even know about specialists and just assumed they have the knowledge. No endo was found but I did have adhesion so they moved it back in places. I still don't have a dyagnosis but all my symptoms match up to endo by the book so it doesn't make sence. After hearing other stories it seems to be a common thing for a general gynae to miss it because they don't always know what they are looking for. Wish I new about this sooner and I hope this information will help you. Xx

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itslea
itslea
in reply to Suzileverell

Thank you. I am finding most people say that these tablets spaces them out the next day. The gyno did say it was a side effect and unfortunately for me I seem to get most side effects from any medication lol. So I’m not looking forward to tomorrow morning.

Thank you for your advice, on my next appt I’m going to ask a lot more questions. I was just rather overwhelmed today that somebody understood the effect this has on my daily life ... it’s a constant battle.

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Suzileverell
Suzileverell
in reply to itslea

I hope they do help! Keeping my fingers crossed for you as it is awful having to live with the pain!

Sounds like you have a very good gyno who will listen. Definitely ask as many questions as possible.

My one just asked me what I think I have so I told her that my GP told me about endo and that I have been tring pills and pain killers for years and no luck. So she said the best thing to do was have a lap I wasn't given enough time to ask all the questions I wanted to. But I Had my lap anyway with nothing to be found apart from the adhesions so they moved everything back and told me I was healthy and not to warry the pain should go now. I didn't even have time to ask any questions then because the surgeon quickly walked off before I could say anything. I was then sent home with no follow up or nothing. So now in the process of trying to get another referral but with someone different because my symptoms are no different. If anything they are getting worse and worse. Xx

Really hope you get sorted asap!

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Heloo85

Theres only a handful of Endo specialists in the UK. Theres only 13 or so BSGE centres from which Endo specialists work from.. They only deal with stage 3+ because theyre in such small numbers.. Adhesions often cause more symptoms than Endo does. Hence why stage 3 + 4 is the most severe form, it contains the most adhesions. You can get adhesions from many causes.. Infection, autoimmune, genetics, unknown. And they are difficult to treat! Also Endo can go into remission, so sometimes during a lap it is missed.. Then flairs up another time.. If yoy suspect Endo then pop yourself on pill and cut your number of periods. It will help with your adhesive pain anyway.. Cuz no swelling, no pressure on Adhesions, no pain. But you was treat like everyone else! Everyone has a diagnostic lap through a general, and if your disease is in its later stages, then youre popped under a specialist. But dont be fooled. Ive been under a specialist for over 2 years.. They have yet to cure me, and now they wont touch me surgically again! So, doesnt mean a specialist will help. Best of luck! Xx

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Suzileverell

Oh that's interesting as I have been told different story's about endo being missed while having a laparoscopy under a general gyno and not getting any diagnoses. So then decid to go private and get seen by a specialist who then finds endo. That's interesting I keep getting all different kinds of infections and have been on 12 lot's of different antibiotics in the last 11 months.

The pill does help a little bit and have heard it can help alot with pain. I take it continuously for 3 months and then stop for 7 days. Been on it for 2 years now because if I don't take in I just have one continues period that goes on for months at a time. I suppose it's about finding what works best for each person. Xx

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Empo

I was prescribed these a while back and was told to take them an hour before going to bed as they make you very drowsy.

Fortunately I was prescribed them to help me sleep with the pain associated with my adenomyosis, which in turn did what it said on the tin.

Unfortunately I still felt drowsy the next day and was still unable to function so had to stop taking them as my job requires me to be very switched on (and awake).

They are an anti-depressant, but used for a number of ailments.

I hope this helped.

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BrightLights88

I wasgiven those for my constant migraine back in 2013 I stopped as it stated that's a anti depressants pill

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Pincer13

Is not an effective antidepressant and not prescribed for this any longer also the dose for antidepressant was almost 10x the dose prescribed for pain relief. I also found you need to take the medication in the afternoon abou 5-6pm to avoid being tired the next day.

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xsoph_louise

I got prescribed these for hip pain due to dysplasia. They got given to me to help me sleep, so the next day I still had the sleepy effects of them. Just be careful!x

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itslea

Thank you everyone for your reply’s. So I took the first tablet last night, my limbs feel kinda heavy this morning and my eyes where hard to open and I struggled to sleep at first. However I don’t seem to have much if any pain this morning.

From what everyone is saying I need to really help my self by researching my options in regards to endometriosis. Well this is the start of my journey.

I thank you all.

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Pincer13

This drug was originally designed as an antidepressant but was did not have great outcomes for this, it and was taken at almost 10x the dose we take for pain relief. You need to play around with dosage and the time you take it, I take mine at about 5 in the afternoon and and ready for bed at 9/9.30, if I take it any later than 6pm I get too drowsy the next day. I only take the medication for night time pain relief, great muscle relaxer and very helpful for bladder and bowl associated pain.

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Lily1986

I couldn’t function off it, zapain and tramadol are better.

Are they going to investigate the extent of the endometriosis via laparoscopy? Make sure they do!

I was ignored for 13 years and it had got to stage iv, 4 surgeries later and ovary and tube removal it’s left me with no children/future children. And went through chemical menopause at 31.

The doctor needs to try and avoid further situations like this. Xxx

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itslea
itslea
in reply to Lily1986

Thank you, I’m really sorry to hear it’s taken so much from you.

When I get my next appointment in 4 months, I will raise the question of getting a definite diagnosis under laparoscopy.

To be honest, I wasn’t given to much information.. but all you guys have given me so much. It’s such a shame we have to to this our selfs. Xxx

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Spemzy

Yeah I have I just my Amitriptyline for a night time to have me with the pain during the night and help me sleep to. ❤️

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BonitaBB

I've been on amitriptyline for a few months (10mg per night) I've found it much more effective for my pain, and only experience drowsiness if I take 20mg. I definitely wouldn't take it during the day. I've found it has a cumulative effect on pain, so it's worth trying it for a month or so, I found when I came around to ovulation /my period where I get the most pain, this was a lot better for sure. Plus helps you sleep which when you're in pain is much appreciated.

Everyone is different though, and everyone's bodies react differently!

Good luck xx

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IndigoMoon1234

Everyone reacts differently to different medication, so try it and see if it works for you.

Personally, I was sleeping extensive amounts (16 - 20 hours straight) on a low dosage and feeling very groggy when I was awake.

If you do take it, take it in the evening between 7 - 8 pm. It takes a little time to take effect. My gp told me that taking it earlier in the evening should reduce the groggy feeling the next day.

Best of luck x

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isa1985

I will start taking this soon for pelvic pain (no confirmed endo diagnosis) and will make sure to give you guys feedback, as this has been very helpful. I look forward to hearing from you too, @itslea

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Oneday2018

can this be purchased over the counter at the chemist? or does your GP have to prescribe it?

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itslea
itslea
in reply to Oneday2018

I think they are only prescribed from a doctor.

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AJJ123

I personally would stay away from that drug and look for something else.

Reason being is that it will alter your thinking patterns, and I would not want to mess with that. You can’t drink any alcohol because you will black out or go off the rails.

I would recommend before you take it you really do some research on it first because you may need to adapt your lifestyle.

My mums on it, she’s asleep all day. My sister is also on it and seems ok, however if she brings alcohol into the mix it totally messes her up and it’s a nightmare.

Xx

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itslea
itslea
in reply to AJJ123

Thank you,

I don’t drink alcohol so I’m ok in that respect, I understand how these would make a person feel if they do drink.. it wouldn’t be pretty.

I’ve had two tablets now and only feel slightly groggy for half hour in the morning and thirsty other then that I am sleeping so much better.

I wouldn’t like to be on these tablets lifelong and was sceptical with them originally being an antidepressant and still are in higher doses but a momentary relief from the pain is welcoming. At the moment I’ve felt at peace more then I have in 10 years. Thank you :)

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Purple001

I took amitriptyline but not for my endometriosis pain. At the beginning they do make you drowsy but you’ll adjust to it after a few days. A lot of people are very quick to dismiss them having only taken it once. As with everything you’ll have to give it a bit of time to see if it helps. Definitely take them before bed. I usually take them 2-3 hours before bed and found this made me less tired. If you are increasing the dose do it very gradually. Best of luck with it I hope you get some pain relief from it! Xx

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