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Endometriosis UK
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Do I have to have op ? Stage 4

Can anyone help? I have endo and have been fitted with a Mirena coil 3 months ago by Health Charity Beneden (NHS queue was so long) was told to try and avoid ops as I have stage 4 endo and ovaries, bowel, uterus all stuck with 7cm cyst.

Now finally got to see NHS registrar at my local hospital which is an endo centre. Now being advised to have op to remove Adnesions but will need a kidney stent and might end up with colostomy bag while bowel heals if they need have to remove a bit. Sadly doc was from overseas and me and my husband struggled to understand. All sounds rather drastic and I still unclear what implications are if I don't have operation. He was going to take Mirena out as he said did not help. Anyone got any advice especially regarding not having op?

2 Replies

I should obtain a copy of the report sent to your GP for clarification. Whether or not to have surgery for endo is primarily based on pain but also there may be an issue of potential damage to organs if it is infiltrating. Unfortunately the consequences of not having surgery for stage 4 cannot be predicted in any given woman as it will depend on how aggressive the endo is and whether or not it is infiltrating. For a woman with stage 4 who experiences no pain at all then there can be a case for leaving it and monitoring the symptoms. 

However, it would be usual for stage 4 to cause pain, not only from inflammation but also from adhesions and nerve involvement, and excision would be the course recommended by the NHS. Please note that just because you are being seen by a registrar in a hospital that has an endo centre does not always mean that you are actually being seen in the centre. For stage 4 it is vital that you are and you must not go ahead with any surgery without having a consultation with the BSGE surgeon who will carry it out. The treatment pathway in an endo centre is that you are first seen by the endo nurse (so this consultation may have replaced that) and are then seen by the specialist consultant who will carry out the surgery. Then they will arrange any pre-op tests and scans such as MRI that is appropriate in your case and all get together to discuss the surgical plan. Have you had an MRI and does this process seem to be in place? Click on my name and have a look at the posts on the treatment pathway and the one on the NHS contract for severe endo that details the specific pathway at a BSGE centre. 

At a centre the risk of even a temporary stoma should be low and you should ask for the centre's complication rates associated with complex surgery for severe endo. There are risks of course and these are balanced against the expected benefits which, as previously mentioned, are based on relief of pain. 

1 like

Thank you that is a most comprehensive answer. The person I saw will be the person doing the operation. I have had an MRI and I will look at your posts. Thank you for taking the time to reply to my question.


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