BSGE centres

[Lljjpp]

How do I go about being referred to a BSGE centre when my doctor just refers me to the general gynae at my local hospital?

[JeanOsborne]

Hi if you look on the BSGE website you can find one near you and decide on who you want to see . Then tell GP you want a referral to them. Good luck.

[NW248]

As Jean says. But I'll just emphasise that you have a right to be seen by the specialist you choose (as long as they are NHS), your doctor can not refuse, although they might try.

[GrittyReads]

Have you already been diagnosed as 'definitely' having endometriosis? And has the severity of your Endo been assessed?

My understanding is that the Endo has to be diagnosed by an investigative laparoscopy, first. Even if you have had a trans-vaginal scan that shows endo, I think the lap is still necessary for the level of severity of your endo to be judged. I believe you are only referred to a BSGE Centre if your endo is level 3 or 4.

I could be wrong, but that is my understanding.

While, 'yes' you have a right to be seen at a BSGE Centre, the presence and severity of endo does still have to be confirmed. It's difficult, as it seems that lots of women with severe Endo are not being referred to BSGE Centres by their GPs, even when it is known they qualify (it seems a lot of GPs don't even know about the protocol for referral). On the other hand, from all the testimonies on here - over the years - it does seem that a huge number of women become worse and worse after having endo removed in ordinary hospitals. This is partly because of the scar tissue and adhesions that can form on the removal sites - especially removal is not well-done. Also, it seems to be the case that, often, these general gynaes may either mistake the level of the severity - because they are not sufficiently well-trained in recognising the different sorts of Endo tissue (therefore it's not noted or removed), or they do not have the skills to access all parts of the abdominal cavity and find all the endo, or ... they may even do actually attempt treatment that should be passed onto the BSGE hospitals.

I would contact 'Endo UK' - link at the top of this page - and talk to their trained advisors about it. I hope you get some answers. Meanwhile, read around on here as much as possible. I would also check out past posts on here by 'Lindle', and you might find other sites on 'Endo' that are helpful. Try to learn as much as possible. Sadly, it seems even GPs and General Gynaes are not as up to speed as they should be on Endo, and we have to learn to be our own best experts.

[Lljjpp in reply to GrittyReads]

I haven't been diagnosed as I haven't had a laparoscopy yet. If I'm going to have it done I wanted it to be at a BSGE centre after having spoke to a specialist about it fully. I have seen a general gynae at my local hospital who told me to basically just manage the pain as he didn't see a reason for a laparoscopy at 21. But I want more answers than this and would like to see someone I trust knows what they're doing.

[Hidden in reply to Lljjpp]

My understanding is that you can ask to be referred to a bsge centre - they will assess you and based on their findings, they will decide whether or not you need to have surgery with them or not. If not, they will refer you to one of their general gynae clinics. The reason for this is that the endo centres are specifically to treat women with severe disease that cannot be treated by general gynae. It is still worth getting your GP to refer you to one for assessment but it's important to be aware that this doesn't mean they will treat you. In the meantime your GP and gynae should be taking steps to help you manage your pain - please push them for help with this if they're not.

[GrittyReads in reply to Lljjpp]

Okay, if what joreilly has said is correct, then you do need to go back to your GP and get them to refer you to a BSGE Centre for an assessment - which I assume means a diagnostic lap. I know BSGE Centres do only treat stage 3 & 4 endo, but I had thought that you had to get the diagnostic lap elsewhere.

I would still talk to the advisors at 'Endo Uk' as they can go through the protocol with you: the one that GPs should follow for a referral to a BSGE Centre. GPs are supposed to know this, and to follow it, but there are lots of cases on here - over the years, and still(!) - of women where their GPs have not followed the referral procedure, and of some GPs who don't appear to know anything about it.

I hope you get your treatment soon, and of a higher standard than that given by the 'General gynae' you spoke to. Honestly it's depressing that with all the increased press about Endo, that this is still going on.

Good luck and take care.

Gritty xx

[Hidden in reply to GrittyReads]

the website for my centre says this:

If severe endometriosis is not suspected either from previous laparoscopy or scan, you will be offered follow up in one of the consultants other clinics. These are set up to treat endometriosis that is not recto-vaginal or severe. These arrangements ensure that we comply with specialist commissioning and enable are waiting times to be kept as low as possible.

Severe disease can be seen on ultrasound by the specialists at these clinics - mine was - so I assume that they would scan for initial assessment rather than carrying out a diagnostic lap in order to minimise surgery wait times for women with confirmed severe disease.