Operation: Hello ladies - Does anyone... - Endometriosis UK

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Kiara1 profile image
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Hello ladies - Does anyone recommend having a clean up operation done? I was diagnosed with severe type (type 4) of endometriosis. My consultant gave me 2 options; full hysterectomy or clean up operation. Is it worth having the operation? Or should I leave it alone? I already had 6 courses of Zoladex. If I have the operation they might have to remove part of my bowl as it has grown everywhere. Any advice is appreciated. Thank you

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Kiara1
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hayls profile image
hayls

Hi

I have just had 2 ops to extensively remove and "clear" severe stage 4 endo. I had the my ovaries unstuck from my pelvis, endo removed from urerters, bowel and uterus unstuck, lining of peritoneum striped, deep infiltrating endo removed from uteral ligaments plus some other bits I can't remember. I ended up having it done across 2 ops that were done 8 weeks apart. I'm now 4 weeks after the 2nd op. I don't know if its had any effect yet as I was on prostap and am waiting for my system to kick back in. For me it was the only real option I had so just need to keep my fingers crossed that it gives some relief for a while. My main advice if you went with that option would be to ensure you have the op with a very good endo specialist and colorectal surgeon, your best option to ensure that is to be treated at a BSGE accredited endo centre. Good luck with whatever you decide x

in reply tohayls

Can I ask if the two operations were done by laparoscopy or by open surgery?

hayls profile image
hayls in reply to

Hi

They were both done by laparoscopy, my specialist is an expert laparoscopic surgeon and trains surgeons in best techniques for laparoscopic treatment of endo so for him open surgery is a very very last resort. Having said that, the recovery from the second op has been tough and about on par with open surgery, mainly due to the nature of what they did during the second op meant that 2 of the port sites are much higher (and bigger) than normal so I'm struggling with post op pain and looks like I'm going back into hospital today/tomorrow to try to have it sorted out as nearly 5 weeks post op and in same pain I woke up with in the recovery room - just one of those unpredictable things unfortunately x

I'm sorry to hear you are having difficulties and may need to go back into hospital. I really hope you soon feel better.

I am pleased to hear you had both your surgeries laparoscopically. Did you see Mr Trehan by any chance?

Best wishes,

Barbara. X

HI, I've had the clean up done twice both by lap. However, it hasn't cured the endo and I'm facing total hysterectomy with extras in a few weeks time xx

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