surgeon help/north west

[Sez73]

I was under Mr Trehan at Spire Elland who retired, back to the drawing board to find a new experienced stage 4 endo surgeon. Already had total peritoneal/radical excision, severe RV endo. I would really appreciate any feedback/reviews anyone has on surgeons in the North West, if they could PM me as it’s a minefield starting again to find someone I can trust - need compassion, empathy and above all no arrogant surgeon who thinks they’re some endo God, been there got the t-shirt! Thank you.

[TogetherWeAreStrong Moderator Endometriosis UK]

Onwards and upwards Sez73 , change is the only constant. So glad you had a good experience with your last consultant and you're looking forward to meeting a new one.

[TogetherWeAreStrong Moderator Endometriosis UK in reply to TogetherWeAreStrong]

On a speratate note ladies, please try not to name your medical proffesionals, good or bad, although I appreciate that's hard not too. But we are all entitled to a private life.

[Sez73 in reply to TogetherWeAreStrong]

1. Change is the only constant?!? Not sure what that’s supposed to mean? 2. I didn’t say I had a good experience with my last surgeon. 3. I’m not looking forward to meeting a new one whatsoever, I’d rather have my finger nails removed one by one and cannot think if anything worse than having to trudge into another hospital and battle to be heard. 4. I would never put anything bad about any consultant here. I have been on this forum for years and believe I have offered great support to some special ladies spending a great deal of time trying to help them using my own experiences. Endo sufferers are up against in from all directions and this forum used to be so useful in hearing peoples first hand experiences from surgeons to help others make informed decisions. That seems not to be the case anymore though. 5. Yes I’d agree, we are all entitled to a private life. That’s why I asked specifically for private messages so no one saw any comments and I remained respectful to others.

Only when the endometriosis journey has literally taken you to a cliff edge and back can you really understand that the tiniest bit of helpful information about a consultant can really help when you’re at your lowest ebb and been let down by doctors left right and centre for over 15 years and not been able to have a family because of it. It is a battle everyday and you get little support, forums like this used to be a godsend. Thanks for your feedback re my post, I’ll be more careful what I ask for next time and direct my questions outwith the forum where I may get the advice I was looking for to help me move forward.

To all the endo warriors, I stand with you and wish you all the very best to finding a happy healthier life.

[Sez73 in reply to TogetherWeAreStrong]

I have sent in a report re your highly insensitive comments. Terminology such as “onwards and upwards” is not a very sensitive comment to someone who has battled endo for nearly 20 years. I take great offence to such a flippant remark. You evidently did not read my post and showed little understanding to my situation. I also found it highly insensitive to remark I was ‘looking forward’ to seeing a new surgeon. Find me one lady on this forum who ‘looks forward” to meeting a new surgeon. We go through hell on a daily basis and this forum is full of utterly amazing ladies who support eachother and comments such as yours are unacceptable, highly insensitive and offensive. I look forward to hearing feedback from the report I have just submitted. Ladies on here get vital advice from eachother to help us make informed decisions and I’ve helped out a lot and also received a lot of help in turn. I am deeply offended by your input and suggest you understand a person’s full background before making such flippant remarks. 10 years of misdiagnosis, £50,000 worth of private fertility and endo treatment, severe post traumatic/post operative stress from 9hr + surgeries, 9 failed ivf cycles, miscarriages and STILL in a lot of pain. But hey “ONWARDS AND UPWARDS” - doesn’t seem so appropriate now does it?

[PaintToughTed]

This was just the moderator explaining the rules of the forum. I thought they sounded like they were trying to be supportive whilst explaining that it’s not fair to share judgements on professionals, which could at worst be libellous, are likely to be very difficult to substantiate and are invariably highly personal.

I'm sorry you’ve had such a difficult experience over the last 20 years. I’ve had great experiences with one of the ones that you mentioned but i’ve not met any of the others so it feels very unfair to comment.

Good luck with the search x

[Sez73]

Thank you for your comment. The point I was making was to outline that I really didn’t wish to hear flippant comments like using terms such as “onwards and upwards” when half my life has been turned upside by this horrendous condition. It was quite clear the moderator had not read my post properly - I never said I was pleased with my last surgeon, nor did I say I was “looking forward to seeing another surgeon”, far from it, I am totally dreading feeling back at square one having to start this awful process once again. There was a clear lack of awareness and that caused me offence I’m afraid - I have enough of not being listened to properly from doctors and it hit a raw nerve. Absolutely everyone has grounds to comment, but I do take offence when they had clearly not read what I’d put fully and used such terminology as hey ho, onwards and upwards, it belittles the severity of the situation a lot of us are in.

There are plenty of ways of getting across the rules without sounding flippant. I wholeheartedly agree that we have to be careful about what we say about professional doctors, but I also firmly believe everyone on here is incredibly respectful of that and only wish to give opinion to maybe try and help to give a bigger picture to someone. I’ve been on and off here for over 6 years and have hopefully given a lot of sound advice, including surgeon recommendations to others and I have never had one piece of negative feedback from anyone, only thanks for my support. Yes they are subjective, highly personal opinions that people give, but they can also be very helpful at times when you often face a minefield of information and don’t know where to start. We are all wise enough on here to see the bigger picture and form our own considered opinion after people’s input to our questions.

I did not believe the moderator sounded supportive, they hadn’t read the post and know nothing of my situation and used flippant terminology and so I spoke up.

I’m really pleased you had a good experience with one of the doctors I mentioned, that’s great. Wishing you all the best for continued healthiness and happiness. X

[Sez73]

thank you for that Nat, really helpful. X

[Jeraldine12]

Hi

I have just had surgery and still on hospital under consultant in a lot of pain they took one of my ovary and tubes out as she said I had severe endo that it was everywhere stuck to all my internal organs. what is the aftercare like did you have follow up appointments?

Thanks in advance for any reply

[Nat140281 in reply to Jeraldine12]

they’re very busy especially after covid. I’ve had to do a lot of chasing up for appointments

[Sez73]

thanks for that Laura, I hadn’t heard he had retired as he’s still on the Spire website - I heard something about him maybe leaving NHS work and just doing private only now, I wonder if that is the case? Are you private or nhs? Thank you for your help, Sara x

[laura98 in reply to Sez73]

Ah yes sorry! He has retired from nhs. I booked an appointment with him at spire to hope to be out on his nhs list, but learnt that he’d retired from the nhs!

[Sez73]

Thanks so much for clarifying that Laura, it’s much appreciated. I’ve had a v complicated endo history & moved to private some time ago, with eye watering costs unfortunately, no choice to back away from NHS as they caused me a lot of problems right from the start really taking over 9 years to even diagnose me, that eventually happened by some lovely doctor in Sydney who actually had time to listen to symptoms and know something wasn’t right! We are failed left right and centre and I just so want to see things change. I’ve dipped in and out of this forum for 7 years and still depressingly read the same problems people are encountering, hopefully it’ll be different one day. Thanks for your input, has been really helpful x

[laura98 in reply to Sez73]

I’m sorry to hear it’s been such a bad experience, and unfortunately it seems to be the same stories again and again on here. All the best with finding the help you deserve x

[Sez73]

thanks for your kind reply Laura. Yes, not a lot changes does it and my heart goes out to everyone suffering, it’s just a scandal we don’t get better support and care. Very best wishes and thanks for your helpful input too x