Endometriosis UK
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Feeling confused and let down

I had my first lap just under 2 years ago I believed my pain was from an ovarian cyst on my right side but during the lap my surgeon removed what she believed to be endo from my left side in my abdomen and from my bladder. I questioned the right side pain and she said it was referred pain probably due to nerve endings my histology came back as negative for endo but surgeon reassured me that it was still likely to be endo. I was pain free for approx 6m and then the pain came back with avengence this is throughout the month but more intense when I have my period. It radiates down into my thigh, my hip and my lower back. I also have swelling in my pelvic area on the right side during menstruation which feels like a gland/node. I was referred back to my specialist and had my 2nd lap y'day I was pushed into the mirena coil for pain relief and to buy more time and stop endo coming back. The surgeon told me there was no endo and they haven't removed anything this time I asked why the pain and she said she didn't know I asked why the pain cleared last time and she asked me what they had done in my last surgery as they didn't have my notes - shouldn't she have looked at this before my lap?? She then said I had scar tissue on my left hand side but she didn't feel it needed removing. So no endo but they put the coil in anyway 'for my heavy bleeding' - which I don't have as I bleed for less than 2 days but have constant menstruation pain and then she proceeded to tell me I'm leaving it too late to start a family - I am 32. I am in the worst pain today all down my thigh and back again. She told me to get referred again in a few months if I still have the pain.

Should I ask for my notes? Should I ask for a 2nd opinion? Or do I just put up with the pain as they can't find the source of it and considering that I have had this pain since my periods started from the age of 12 is it time I just accepted that this is normal for me??

2 Replies

Hi - can I first ask what side the thigh/leg pain is and where in the UK are you?


My pain is always on the right side and I'm in Manchester


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