Treatment in Spain/UK: Im not sure if this... - Endometriosis UK

Endometriosis UK

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Treatment in Spain/UK

Sarniemill profile image
12 Replies

Im not sure if this is allowed but Im feeling really stuck at the moment - I was diagnosed with severe endometriosis after an MRI at my local hospital back in May who then rightly referred me to a BSGE centre for treatment. My first consultation appointment isnt until the end of November and I am assuming the treatment/surgery is going to be a long wait after that - after listening to other ladies experiences.

My husband has recently been offered a job in Spain and we are hoping to move over within the near future. I have enquired about paying privately for treatment so I can hopefully get sorted before we go but Im worried finances wont allow this - especially if surgery is very expensive.

Sorry for all my rambling- i think what Im trying to ask is - does anyone know if the treatment is roughly the same in Spain/EU as would be here in the UK? Because if treatment is unaffordable to me here - I assume Im going to have to go through the Spanish health system for treatment

12 Replies

not Spain but I have had surgery in Bucharest with a very well known team there and after failed surgeries in the UK I can’t recommend going there enough. The teams skills are top notch. And it’s not far from Spain so if you can manage it financially it’s definitely worth looking in to. I’ve not heard of any excision experts in Spain.

Lindle profile image
Lindle in reply to

We have many excellent endo centres in the UK. I guess it depends on what you mean by a failed surgery. Excision by a top surgeon, however that is judged, in any country risks recurrence of endo. There will be excision surgeons in Spain but naturally in the UK we are unlikely to have heard of them.

in reply to Lindle

By failed, I mean a lot of Endo (DIE and superficial) we’re missed in several locations. The surgeries were 8 months apart. The first surgery was with a BSGE surgeon. So that doesn’t meet the bar of “excellent” by definition unfortunately.

Lindle profile image
Lindle in reply to

There are certainly some centres who don't seem up to standard but there are many who are. I do think it's important for UK women to have confidence that we do have good endo treatment in the UK (apart from the NHS delays) but as in any country it will be a case of researching well.

Endo both superficial and deep could recur in 8 months but the problem is knowing if it is because of having a particular aggressive sub type or being missed.

I'm curious that the last 7 surgeries weren't in a BSGE accredited centre. Were they by general gynaecologists or in centres not on the BSGE list?

in reply to Lindle

By “several locations” I was referring to several internal locations of DIE & superficial. Also whilst progression in that time IS possible it’s not probable. There’s very little literature/evidence on progression rates. A diagnosis of fibroids was also missed despite me being able to see them on my surgical images.

The surgery at the BSGE clinic was performed by someone who is listed as an Endo specialist (a title that has no regulation in itself). The experience overall was extremely poor. I am not a unique case in this (you don’t have to go too deep in to any forum or support group to see this sadly).

The difference between the surgical process, report and care from that surgeon and the one I received from the expert in Bucharest is night and day. I also asked my specialist in Bucharest about recurrence rates and the span of time from my last surgery and DIE and superficial being missed and he said what I mentioned above. Whilst it’s possible, it’s highly improbable. I’m inclined to believe him and his team as they execute a genuinely enormous amount of surgeries per year and recurrence rates for his team are close to nil with the exception of endometrioma (recurrence rates still well below recorded literature stats). No identification of an aggressive subtype was given. If this was present, I trust that this would have been communicated by my surgeon again as he has an incredible amount of experience. Pathology confirmed Endo.

The bar overall needs to be lifted for training. I wish I could say my experience is a unique one but it’s not. I have a lot of people in touch with a similar story and an even shorter period between surgeries than I. 5,6,7 surgeries are the norm and it shouldn’t be. But unsurprising when ablation is still so widely performed. There’s a reason why the top global centres for Endo exclusively use excision (also some BSGE listed surgeons are exclusively excision only while others aren’t, a problem in itself. The handful of top UK surgeons also only use excision).

It’s important that people know to really research (across multiple areas and sources) their surgeons before they go ahead with any surgery. BSGE label is not a guarantee of skill level which is a tough pill to swallow. Yes, there are some surgeons at BSGE clinics that have good skills but the number is low. A lot of work needs to be done as you’re probably aware in terms of training and education. This is not unique to UK. This is a global issue.

There’s hope to be had of course but it requires a lot of research on the patients part to make a truly informed decision 🙏

Sarniemill profile image
Sarniemill in reply to

thanks for your reply - can i ask roughly what the cost was for your surgery and how complex it was?

Lindle profile image
Lindle

For surgery here for severe (presumably rectovaginal) endo if you were to go privately it would need to be in a private specialist centre setting working to BSGE standards for your safety so with the same multidisciplinary team of 2 lap surgeons plus colorectal and urology if required. You would be looking at a minimum of 10K plus - or should be. Any private surgeon who says they can do it on their own for less is working against standards and should be avoided.

So in Spain you would need the same sort of multidisciplinary team in an endo centre setting so you'd need to research if there are any. You'll probably get plenty of hospitals come up on google under 'endometriosis treatment Spain' but you'll need to research for advanced excision surgical teams as you would here.

I could give you the name of an excision surgeon in Spain but we aren't allowed to name surgeons or hospitals on here. Will pm you later.

Sarniemill profile image
Sarniemill in reply to Lindle

Thanks Lindle, look forward to your pm later

Lindle profile image
Lindle in reply to Sarniemill

Have sent the link.

Sarniemill profile image
Sarniemill in reply to Lindle

sorry Lindle, I haven't received anything - do i look on chat to find it?

Lindle profile image
Lindle in reply to Sarniemill

I'm really sorry. I got a message asking for details and thought it was from you by mistake. have just sent the link x

Avourneen profile image
Avourneen

I'm not sure about Spain I looked for excision there and it didn't seem to be easy to get hold of but one of the best endo treatment centres in Europe is in Bordeaux. I don't know if they are private or not. Bordeaux is not far from northern Spain and the centre is meant to be one of the best in Europe.Might be worth a check or contact Lone Hummelshoj at the World Endo Research Foundation she knows about quality centres across Europe.

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