I had a ruptured cyst August 2023 while travelling abroad and got emergency surgery in a great hospital. They drained the cyst and while already in there diagnosed deep infiltrating endometriosis, but couldn't remove any of it right then, as none of it was planned. I come back to the UK, get an MRI (which only showed endometriomas on my ovaries, nothing deep infiltrating) and was told the cysts are already back to 4cm (this was just 2 months after surgery)! I've been fighting to get proper endo surgery ever since. Finally made it on the NHS waiting list at the RVI, but was told the wait is 12 months. My left ovary feels like getting stabbed every single day. I'm also worried because they are completely dismissing the laparoscopy findings of deep infiltrating endo, because it was from a different country. So the surgery would only address my ovaries (again).
So I'm desperate enough to pay for private surgery, but the one private hospital I went to close to Newcastle just told me they can only treat mild endo. Does anyone have a recommendation for private endo surgery in the north? I have googled the endometriosis centres, but the closest one is still over 3h away from me.
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ritschgi
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From what I have gathered you need a BSGE centre. Whether that be NHS or private, they have the specialists who know what they’re looking for. General Gynaecologist's have been absolutely useless for me.
The BSGE website has a full listing of specialist centres could be worth looking on there. Paying for treatment at Spire will of course speed up the process but it’s useless unless they have their own specialist.
Thank you! I only learnt about BSGE centres when joining here and it has been really helpful. Thankfully the NHS hospital I'm on the waiting list for is accredited, I just really don't know if I can wait a full year for treatment... The Spire Murrayfield Hospital is the closest private centre I could find on the BSGE website, but I've had a not so good experience with spire before (not in regards to a surgery though) so I'm a bit apprehensive.
I guess I was wondering if anyone knows a specialist that also works outside a BSGE centre... I assume they do exist
Hello. I have been on a waiting list to see an Endo specialist in Edinburgh for 6 months (another 12 to go). So, just as you said, I was desperate enough and decided to go privately. Initially, I arranged to see the lead consultant at Spire M hospital who agreed to perform a laparoscopy. He left his secretary's and his contact details for me to reach out to book the surgery. I emailed twice but no response from either. It's unacceptable so I didn't follow up - can't be possibly paying such money for their indifference. You may have a different experience but I shared what I went through. Hope you have it sorted!
Hi, I went private with Mr Roy at Stockton BSGE centre.He is a good consultant private but due to staff shortages I was flipped to NHS so surgery could be done quicker, it was a year and I was classed as priority.There is also a centre at James Cook Hospital.These were the two recommendations from Bupa I am from the North East .Hope you get sorted soon.
Woodlands private hospital Darlington. The head of James Cook endometriosis clinic does a private practice there every Tuesday. The guy at RVI is apparently on long term sick. Good luck x
Is it Tony Chalhoub who is long term sick? I've just wangled myself a referral to the RVI after a private scan in London which found severe and extensive bowel endo (DIE stage 4). I was hoping to meet with him (after a long wait of course!)
I know this is an old post but I just wanted to update: I'm having my surgery at the RVI in November. The head of their endo specialist team is Megan Murdoch and she's scheduled to do mine. I believe they have one other endo surgeon in the team who could have done my surgery too. Never heard about Tony Chalhoub, so I think they must have replaced him?
I did end up going to Woodlands and met with James Cook. Would have loved to do the surgery with him but tbh it was just far too expensive for me as I need more than a 'simple' lap. Glad I'll finally get it done and at a proper BSGE centre.
Thanks for that ritschgi. Can't say I've heard of any other surgeon at the RVI but I'm pleased.to hear they at least have someone! I've yet to receive any appointment for even a consultation and my referral has been in since February. I was told to expect an appointment in October but I'm not hopeful.
If you already had a scan they might be waiting for the endometriosis multidisciplinary team to have a look at it first which only meets like once a week or something. I had my RVI consultation back in November and only about 3 weeks ago did I get a letter about the team having met and discussed my scans. After that it only took like 2 weeks to get a surgery date though! Fingers crossed you‘ll hear back soon. Best of luck xx
Hello, hoping you see this. Tony Chaloub was the only endo specialist at the RVI and because he has left it is now only a provisional place for endo as there are no specialists! I was under Mr Chaloub and was meant to be having him for my surgery this year ( excision and hysterectomy) he did my last surgery in 2020 and was amazing! Because I was desperate I went a head with my surgery with Dr Murdoch as was under the impression she had been given his list because she was a specialist. I’m not in anyway putting her down as a consultant but I’ve been left in more pain than ever and it’s because apparently she seen no evidence of endo! I’m still trying to get an appointment to discuss this but because she put no follow up on my notes it’s proving difficult. I had to find out through a support group that she is not a specialist! And because I had been on zoladex so long I’m convinced this has masked my endo and only a specialist would be able to spot the different types. Mr Chaloubs patients have been shared out to get the list down from what it seems. I really hope it all goes well for you but needed to inform you that it is not a centre for endo anymore xx
I have a similar story. However Dr Chalhoub performed my laproscopy before his long sickness. Unfortunately the lap didn't give any relief, I rang for months trying to get more treatment, before finding out they'd discharged me back to my GP. Now I'm awaiting referral again but unknown as to where that is, did you say there's no longer any specialists there? Do you know of any in the north east?
Me too exept it was at the hands of Dr Chaloub. I dont know if it is still being investigated but earlier this year the head surgeon was a woman and had to repair the damage he did. In fairness I couldnt be more greatful and she was a nice person and explained everything. A friend of a friend said he did off in disgrace and hasnt been seen since so they havent made him answer for it yet. Shy of legal action I dont really know what to do other than share to warn people. All the RVI want is for me to complain but if hes gone whats the point.
Unfortunately Dr Chalhoub was supposed to be the one fixing an old surgeons work, I was very hopeful for my surgery but by the time I was trying to get a follow up afterwards he was just gone. I've been waiting for another referral for almost a year now but I have no idea which Dr this is for. Did you have a good experience with the Dr who put you right? Would you mind providing her name? I originally asked for Dr Chalhoub due to his accolades online but I'm unsure what to look for in terms of accreditation due to last time. I just want a Dr I can rely on for aftercare instead of an immediate discharge back to Gp
Hi, your surgery wasn't July 2023 was it? Mine was but got cancelled on the day whilst I was waiting to go into surgery. I was second on the list, saw Mr Chalhoub that morning, however not seen him since. I was told something happened in theatre, I hope this wasn't you?. Never had surgery and now need to lose weight before I can be considered for surgery, my hysterectomy would be complex surgery. I'm under Dr Crombie now who works closely to Megan Murdoch. I was told today at RVI whilst having my coil changed that Mr Chalhoub has left and works elsewhere.
Hi, no I was Sept the same year. I was told my surgery was a success and everything was removed. Unfortunately I just remained the same symptom wise despite the treatment. I do think this may be a common experience for some, not sure if it's due to the treatment quality or just how it is for some of us.
So was it September 2023? I didn't think Mr Chalhoub returned after my surgery was cancelled July 2023, I was just told he's on leave. I really think something serious happened in theatre on that day. Lost their endometriosis accreditation, don't lose that for nothing.
I was actually ringing up in the months prior to my surgery asking why this accreditation was no longer held, I was concerned as I was still due. I never did get an answer, but I definitely had mine end of Sept 23, there were 3 women on the ward that day who also had surgery by him on the day I was due. Definitely wasn't on leave
I really wonder what has happened. I was told something serious happened in theatre that morning, he was still in theatre with bowel specialist and urologist at 3pm. My surgery was cancelled at around this time. I wish they were just honest with me. Instead of telling me a pack of lies and no information until at least end of September 2023 on what to do regarding meds I had stopped for surgery. I was just left with no information at all.
Sorry to hear this happened to you. I never heard back after my surgery (I was suffering and contacting them a lot) and I didn't get a new gynae, or even find out he wasn't there anymore until about January, it always felt like they either didn't know or were not supposed to say. Had to get a new referral from the start, it sounds like you may need to do this also. I only found out because my GP contacted them
We rage about our wonderful NHS but when it comes down to diagnosing, hospitals abroad are so much better. I cannot comment from personal experience on treatment but I believe they are better at that too. It's sad that we have to fight for everything here and frequently get told we haven't got what we've got.
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