Pain has returned...please help!

Hi everyone,

I am 29 and was diagnosed with endo around 4 years ago. I elected to have surgery, despite my consultant insisted there was no need, and a large amount was removed. I was put on cerazette to reduce the chances of it returning and for the most part it has been successful but just recently I have experienced crippling pain just like before. Everything from the ribs to the tops of my legs is in excruciating pain and nothing seems to be shifting it.

I have spoke n to my GP before when I had experienced pain after the op and he said that they would be unlikely to do any more surgery due to my age and because it mostly effects my bowel I have to go through loads of tests to make sure the pain hasn't stemmed from that by a blockage etc...even though I know it hasn't.

I don't know what to do? Do I elect for more surgery again and risk more extensive tissue damage, reducing the likeliness I will conceive at all, allow the hospital to do more gastro investigations to be left wit no answers again or do I just put up and shut up and hope it passes?

Any suggestions gratefully received!

1 Reply

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  • Hi - you have been treated quite inappropriately. First of all for a consultant to say you have no need of surgery and then find a large amount makes no sense at all. The problem there is that it is likely to have been done in general gynaecology and even what they claim to have removed was probably only burned on the surface. And what they mean about your age I just can't imagine.

    Bowel sympoms are an indicator of deep endo, especially in a confirmed case of extensive disease. It is likely that you have rectovaginal endo affecting the uterosacral ligaments which lie very close to the bowel and the inflammation will irritae your bowel to give any sort of IBS symptoms. There is a nerve runs through the ligaments which is often affected and this can refer pain to the buttocks, groin and legs.

    You are being treated against protocol as cases such as yours must be referred to a specialist centre so you can have a highly skilled surgeon excise all your endo properly. Where in the UK are you?

    Click on my name and have a look at my post on rectovaginal endo and the one on how to find a specialist. x

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