Endometrial nodules

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 ! ๐Ÿ˜“๐Ÿ˜“

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 ๐Ÿ˜ฅ 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

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  • 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

  • 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 ๐Ÿ˜€

  • 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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