Endo in Liver!!

Hi there

I have had period issues since I can remember but was only finally diagnosed with endometriosis in oct 2011 after a laparoscopy during which I had to have a large chocolate cyst removed from my ovary. At that point I was told I had mild endo. Well since then things have gone downhill fast, I have the most excruciating pain at my time of the month and some pain at other times such as during sex and sometimes just unexpected cramps and also i began experiencing pain in my rib/diaphragm region. So I went back to my consultant in Sept 2013 and was referred to another hosp as my consultant felt there was nothing else he could do for me, long story short I was sent for an mri eventually and I got the results last week (nothing quick about the nhs eh?).

Well the results werent good....I have endo pretty much everywhere in the pelvic area as expected but also surprisingly in my liver!!?? They said it is pretty rare and so I am now on a waiting list for a 'radical' op as they put it and they confirmed I am now level 4, severe endo.

They Said there was nothing obvious showing up in diaphragm area but they cant be sure.......im going to see a bowel specialist next week as im told my bowel is also affected and then also waiting on an apt with liver specialist prior to the op as they will all need to be on hand during my surgery!

I wont lie im extremely scared and worried and my work is suffering! im in pain and im so tired and just feel emotionally drained, I am being told it will be at least 6 months for the op! I dont know what to do, does anyone have any experience of liver endo? and if so how did that work out???

Sorry for the long winded essay but so much info to get in and im hoping for some advice!

Thank u :)

2 Replies

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  • Hi. Sorry to hear about your diagnosis. I do have a history of Stage 4 endo with dense adhesions involving a lot of my pelvic cavity (among everywhere else - bladder, bowel and ureters). I have strongly suspected diaphagmatic endo due to symptoms - though they have not been able to spot it in scans etc. I worry sometimes that I may have problems in my right lung - though my symptoms here could be caused by something else I guess... I have never for example actually coughed up any blood. I have no experience of liver endo but I do remember a couple of other people posting about this fairly recently - maybe a month - 6 weeks ago, so if you put 'liver' into a forum search you might come up with some posts and if you answer those posts or send a pm you might get a response.

    So - I can't help with the liver issue - but if you want to talk anything through about other areas e.g. bowel then feel free to pm me. Take care and I hope you find someone who can share their experience of liver endo - I'm sure you must be feeling unsettled by everything x.

  • Your in my thoughts and prayers lass xx

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