Heya. My names Charlie. I was diagnosed with Endo last Aug 2016 by lap and had some bits burnt away. Following that I've had the marina coil (worst experience of my life!) also been on decapeptyl injections for 2 months with no hormone replacement as it made things so worse.
Bit of back ground story. All usual Endo symptoms but one major one that I can't do anything about. Had pain full bowel movements for years. After it was happening every day I went to the doctos saying I had period cramps when I was doing a poo. Sorry for the tmi! Anyways fast forward 6 years and I'm STILL having pains even after all the things they have tried. Its the most painful thing ever and in my opinion i believe my bowels are fused to something causeing pain when they are full or moveing. On the pain scale its between 9-10. I'm totally lost at the moment. My pain meds are not working - I'm taking dihidrocodien, tramadol and lidocaine patches. Pretty much the injections took away the mild symptoms that didn't bother me however I'm still suffering bowel pains every day and it is making my life miserable. I don't have a social life I live in the bath or in pj's with a hot water bottle. I've stopped eating because when my bowels are not moving I get the most comfort. Due to this I weigh 6 stone 10 and can not but any weight not matter how much I eat because eating like a normal person just causes me to have so much pain.
I have a follow up appointment with my consultant in February but they have said if I still have pain this can't be Endo but I know it is. I have been through every test on my bowels and the woman doing my colonoscopy said my bowels were healthy apart from having a torturous colon which in recently found out Endo sufferers can also have. I don't even know what I hope to get out of writing this. I just feel so alone and lost and have no idea how to control the pain and feel like I'm not dealing with this well at all. What happens after the injections don't work. I'm 27 and my biggest wish is that they would just take away my bowels and womb. If you've read this thanks very much.