Endometrial nodules: Hi this is my first... - Endometriosis UK

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Endometrial nodules

Milton1
Milton1
3 Replies

Hi this is my first time on this site , I wondered if anyone could give any advice or relate to what I'm saying as I feel so alone right now ! 😓😓

I was diagnosed very early at the age of 16 I have had many laser surgeries , I fell very ill once again in December I had a lot of tests mri etc to find I had a few endometrial nodules (first time I've had these ) I was on morphine oral morph and when that didn't help I was put on pain patches and was taken into theatre 3 months ago to have them all removed I had them on my pelvis stomach uterus and rectum and another near the back , straight after the pain was 90% better back ache had 100% gone and I felt like me again after 7 long agonising months well a week ago my back pain came back but no stomach pain I went to gp and seems the nodule near my back has come back 😥 But they said they will not operate yet as I have had so many surgeries already and want to wait until I really need it , they have given me amitriptaline as I have refused morphine and stronger meds has any one else experienced this and what worked for you as these meds just are not working , oh and I don't have periods haven't for 5 years and still this happens !!

3 Replies
oldestnewest
Alicepirate

Oh no really sorry to hear you in so much pain I take dihydrocodeine very sparingly about once a day and hot water bottle most of the time . Amyltriptaline made me too dozy and didn't seem to do alot painwise but I was on a very low dose just at bedtime. I have adenomyosis and have had superficial nodules of endo removed from rectum and utrosacrial ligaments during lap in April but pain has been worse since op I get pain everyday mostly to do with bowel and bladder. So my symptoms are quite different to you but might be worth a try with the dihydrocodeine sparingly see if it helps I can still function when I'm taking that but can't on codeine or tramadol :)

Hope you find something to help :) xxxxx

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Milton1
Milton1
in reply to Alicepirate

Thank you I will Defo ask about that as amitriptaline is not helping at all , since they removed the nodule on rectum I am with charter health care who put me on peristeen coloplast which helps with incontinence , I'm just fed up with being on pain meds and my problem now is my body is so used to high levels of pain relief not much touches sides , thank u for your reply 😀

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Alicepirate
Alicepirate
in reply to Milton1

yes thats what worries me and with the constipation with alot of them too and the nausea you end up taking more and more to countact each other , difficult, I was lucky mine was only superficial endo nodules but still makes me so irritable not sleeping and the constant pain :(

Good luck hope you get some answers and help soon :)

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