Recommendations: Hello Everyone... - Endometriosis UK

Endometriosis UK

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Lynne_support profile image

Hello Everyone.

Endometriosis UK asks that people do not posts comments about individual consultants or other health professionals.

Why do we do this?

We completely understand that you want to feel confident that you are getting the right treatment from excellent medical practitioners and hospital teams. However, there are problems with posts on social media asking for recommendations or commenting on an individual doctor or hospital.

One very important one is the legal problems we could face if a negative comment is made about a doctor, they could sue Endometriosis UK as the comment could be considered defamatory. This would have serious consequences for us as a charity, both financially and in terms of damage to our reputation. We are sure you would all agree that this would not be a desirable outcome.

Additionally, we are also aware that one person's experience of a consultant can hugely differ from another. It is therefore our policy to take down any information that we come across regarding specific consultants or healthcare professionals. Even a positive comment could become problematical if later in the thread someone says that they thought Dr X was terrible.

Please also bear in mind that seeing a negative comment about a doctor that you are about to have a consultation with or who is going to do your surgery could be very worrying. This can be an anxious time for many people, and this can only add to their concerns.

Getting a referral

Our recommendation is that if you are looking for a referral, then ask for a gynaecologist with a special interest in endometriosis. Under the NICE guidelines, each gynaecology department should have someone in their team with a special interest in endometriosis. People with endometriosis affecting their bowel or bladder may be eligible for referral to an accredited endometriosis centre, you can find a list of these on the BSGE website Centres Archive - BSGE.

Making a complaint about your treatment

Finally, if you are unhappy with the treatment you have received you can make a complaint, the PALS team at your hospital can help you with this. You can find out more about PALS on the NHS website nhs.uk/nhs-services/hospita....

Thank you everyone for complying with these guidelines

Lynne – Endometriosis UK

10 Replies

I would add that it isn't just bowel and bladder endo that qualifies for referral to a centre working to BSGE standards. The definition for England is:

1.1 National/local context and evidence base

Severe endometriosis for the purpose of this specification is defined as either deeply

infiltrating endometriosis or recto-vaginal endometriosis. Deeply infiltrating endometriosis

exists where the disease invades at least 5mm below the tissue surface and can occur in a

variety of sites, such as; bladder, pelvic sidewalls, ovaries, pelvic brim, bowel surface and

diaphragm. Recto-vaginal endometriosis is endometriosis which involves the recto-vaginal

septum area (recto-vaginal septum, vagina, utero-sacral ligaments, rectum). There are many

classification systems for endometriosis but none are universally accepted. The definition

used here would accord with grade 3 and 4 disease used in the revised American fertility

Score. (1)

We would expect this to be classed as a national specification that should also apply to the devolved boards also but their criteria might vary slightly.

Puffling1 profile image
Puffling1 in reply to Lindle

Do private hospitals use the same BSGE accreditation system? I’m due to have surgery at what I thought was an accredited centre but I’m not sure they’re following the criteria that I read about so not sure if there is a different system for private hospitals or if they’re not an accredited centre. I’m really worried about it as my surgery is soon and other than asking the secretary I have no idea what to do or where to find out.

Puffling1 profile image
Puffling1 in reply to Puffling1

I really hope it is and that I’ve read things wrong because I need this surgery

Lindle profile image
Lindle in reply to Puffling1

Yes the same standards must apply whether NHS or private for patient safety.

Puffling1 profile image
Puffling1 in reply to Lindle

Thank you lindle. Im beginning to get a clearer picture

Blue_Sky12 profile image
Blue_Sky12 in reply to Lindle

Should this referral to a BSGE centre be made by your GP initially, or by the general gynaecology department once you’ve had that referral appointment?

Lindle profile image
Lindle in reply to Blue_Sky12

For private some will take self referral or letter from a GP. On the NHS you have to fit the criteria and then referral can be by GP if it is already known you have a history of severe endo or by a gynaecologist with a special interest in endo in secondary care if severe endo is discovered there by lap or scan.

Blue_Sky12 profile image
Blue_Sky12 in reply to Lindle

Thank you for clarifying that. I thought I had read you should be referred with suspected bowel/urinary involvement (amongst other things). It is such a slow journey to anything it seems. I am awaiting an appt with gynaecology but have symptoms related to bladder/kidneys/bowels. It took a lot to get the initial referral and after a year of pushing I finally have a date for my initial gynaecology appt. I shall try and be patient and hopefully this will move things in the right direction.

Lindle profile image
Lindle in reply to Blue_Sky12

Yes you can be referred with suspected involvement of the bowel and bladder but this isn't based on symptoms. You have to have some evidence such as from scans or pelvic exam.

Blue_Sky12 profile image
Blue_Sky12 in reply to Lindle

Thank you.

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