I am currently suffering from, what the doctors believe to be, endometriosis of the bowel which is progressively worsening and I believe it has now reached my diaphragm as I have been experiencing a lot of shoulder chest and arm pain around the time of my period. I am strongly considering having surgery done (hopefully excision for long term relief) and need to find an endometriosis specialist but one who is experienced and won’t mess things up even further 😫 so possibly someone who has dealt with bowel endo before. If anyone has any recommendations please let me know? I am currently in london so any recommendations of centres of doctors here would be great.
Also- anyone who has had excision surgery, did it help? How long did it take to recover? And to what extent did it actually help? Thanks!
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Amywoodx
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Sorry to hear the amount of bowel trouble you are having. I am just outside of London and have stage 4 Endo and bowel Endo too. I would thoroughly recommend Mr Vashisht at UCLH. He specialises in Endo and excision surgery. Also if you get referred to the Endo Centre there then he gets other surgeons involved from other teams to assist. So I had colorectal surgeon Mr Wood involved in mine for the bowel part and would recommend him. I’m actually going back to see him today.
Did you get surgery through him too and if so, did you go ahead with excision? I heard it has many risks but if it provides long term relief then I'll try it
Hi Amy, you can always search for an Endo Specialist on the BSGE website and find a surgeon close to you. I am currently under the care of Dr Shaheen Khazali who consults for a number of hospitals in the UK. I have stage 4 and had severe endometriosis around my bowel. There were talks about a possible bowel resection, however Dr Khazali was able to shave the endometriosis near my bowel and therefore I didn't need bowel surgery. He also excised all the endometriosis as well as removing some tricky endomtriomas on my ovaries. I felt very comfortable under his care.
So originally I actually was hospitalised for ruptured cysts and that was in Sept 2016 and then I was referred through the hospital. Had exploratory laparoscopy in Feb 2017 and then major surgery (via laparoscopy) to excise all the endo + removal of a tube in July 2017. So not long at all!
Most recently, I asked my GP to refer me back to Dr Khazali as he knows my history (went to my GP in early Dec). The referral appointment was for March but I called the appointment line every day for a week to see if there were any cancellations, and I was given an appointment date for end of Dec. I had an MRI and ultrascan mid-Jan and now am waiting for a follow up appointment to discuss if any new findings! Hope that helps with timescales. I am not sure if I have just got super lucky with short waiting times but I am also quite persistant, lol, so if an appointment date sounds too far away I will call to check for cancellations! xx
I had my surgery in July 2017 and actually yes my periods were MUCH lighter following the surgery. The pain also subsided considerably especially when I was passing gas/emptying bowels (sorry if TMI!) because the endo was severe around there. I did go on to have IVF after that though which were unsuccessful and subsequently my periods have been more painful (which I think is more to do with Adenomyosis than endometriosis). Hope that helps! xx
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