Statistics for surgeon

[Malachitegoose]

Does anyone know where I can view the statistics for successful outcomes for my surgeon? I am based in Wales and need the links for there (I have tried searching but Wales NHS websites are not as user friendly as England's) but feel free to post for other nations too as it will help others.

[Avourneen]

This is hard to believe Malchite but the NHS do not keep any records of success rates of individual surgeons for treating endo. Some private docs keep their own records. It's hard to say what success rates would be for me they would be level of frequency of reocurrance of endo. I think they may keep records of rates of infection or complications but I'm not sure. I have been pushing and suggesting that the rates of all these things for surgeons should be recorded espcailly levels of reoccurance. This means that there is no objective way to tell which surgeons are the best and to my mind no way to check what is best practice (if figures were kept surgeons could learn from other surgeons with the best resulsts and see what they are doing differently). Howeveer when I suggest this I am immediately shot down in falmes and told this is much too difficult as endo is very complicated. As far as I know only heart surgeons have to keep these type of records. I don't think surgeons want to be compared. It is outrageous but unfortunately this is how our system works.

[Avourneen]

I think the best way to get good honest feedback on surgeons is via the endo Facebook group. Women there are allowed to leave honest feedback and name names. It's not scientific but the names of some surgeons come up over and over again in relation to bad outcomes and good ones. It's really hard to choose a surgeon as if you look at their websites they all just inculde amazing feedback and claim they are the best. It's a good idea to ask other endo sufferers who they have had success with.BSGE centres are meant to be better staffed etc

[Lindle]

Unfortunately the problem is that the success of outcome can be very hard to define. In reality most would define it as being pain free with no recurrence of pain and/or endo. But there can be many other pain generators that pre-existed that excision of endo won't resolve which might cause continuing pain. There may be unavoidable damage caused by actual surgery itself, especially in severe cases which is high risk. Also as the course of the disease can't be predicted in any given woman the factors influencing recurrence are not possible to pin down. Even with severe endo one woman might have very aggressive disease which recurs while in others it may have reached a stage of being non-progressive. There is a video somewhere of some of the famous US surgeons discussing this and I remember one saying that he could operate on two women with what seems the exact same presentation with totally different outcomes. So there is no way that outcomes can be standardised. In terms of published data complication rates is really all there is to go on that could potentially be traced back to surgeon error. Patient feedback on groups that allow both good and bad experiences are probably the best to go.

The only

[Malachitegoose]

Thanks for the replies. I have joined Facebook so I can look surgeon information in the endo group. In a way waiting for years is ok as it gives me a chance to try out lots of non-surgical treatments. I have a friend who claims she zapped her endometriosis with herbs and was massively offended when I explained that placebo has a hugely powerful effect on the body. However one of the herbs she recommended turmeric has been down to have anti-inflammatory effects so I am trying it already. I have had my neurodiversity confirmed by specialists this week and the relationship that has with stress also. So there's lots to work on outside of surgery given the fact that there is evidence endo is linked to stress.

[Malachitegoose]

I am actually really concerned that endometriosis care appears to be unscientific in that data is not properly collected. How are medical professionals and patifnts to know what treaments are effective if there is no proper recording and monitoring of outcomes, side effects and complications. Of course every woman is unique but so is every human. Science involves aggregating data from large groups of people to work out what are the most likely outcomes.