Referral to Endometriosis Specialist/Centre

[Woo25]

Hi all,

Has anyone been referred to an endometriosis centre? If so can you share your experience please.

My consultant wrote to my GP following some questions and has recommend me being referred to a centre and possible further surgery.

Thanks guys

[Cupcake1617]

Hey, yeah I am seen at an endometriosis centre. The advice and care has been so much better than my local hospital.

There’s a list online for the nearest centres to you - type in BSGE centre

[Woo25 in reply to Cupcake1617]

Thank you. I have found my closet one, I just really hope they can help me!

[BrightLights88 in reply to Woo25]

They will trust me. I was under gynae specialist who ruined my life by just holding off surgery, I went from stage 3 to stage 4 within 11months. I then referred myself to a endo centre and within 3months, they put me on surgery list, done 2 consultation, MRI scan to detect where endo is ( which my gynae did bit perform) and had a followup of the plans to do my lap. I waited only 2months. Endo centre specialist was much better with care and commitment in finding the best solution to relieve my pain. I am endo free since August 2019. I recovered from my lap within 2 weeks.

Good luck and your very lucky to have a endo centre locally.

[Melon365 in reply to BrightLights88]

Hi Brightlights88

How did you refer yourself to the centre?

[BrightLights88 in reply to Melon365]

I went to see my doctor at the gp, first the female one attempted me to go for private and was convincing me that a new referral will take 5-6 months wait. I then booked a gp appointment with a male doctor and told him what I had and was going through and that I had done some research here are the 4 main places I would like him to check to see is available for appointment. He done a new referral and added the post code of endo Centre and found me one that had a app in 2 weeks I took it. I then called my gynae hospital and told them I would like to be discharged. I have noticed female doctor don't take your pain or understand you as much when they should, male docs have no clue how it feels but yet they will tale you seriously and try help whatever way. Till now I always book my gp app with the male gp.

[Woo25 in reply to BrightLights88]

Thank you, this is really helpful. I’m sorry you’ve had such a tough time.

My GP is doing the referral for me as suggested by the consultant. Hopefully wait times aren’t to bad!

[BrightLights88 in reply to Woo25]

no problem. If you need any advice or anything else just ask.

I really hope they can get things moving with hospitals i know this virus thing is huge impact but there is a so many patients being left in pain and misery for not getting their treatments. Their saying at least till autumn when hospitals will resume slowly.

Dread not.

Take care of yourself. Also I been noting down any food that triggers of my endo pain on my phone. Like raw garlic in food when not cooked, lentils, mayo, cheese. what I do is eat it again another time but differently instead.

[Lindle]

There are referral criteria and referral procedure depends on whether you are in England or the devolved boards but presumably the consultant intends to do the referral?

[Woo25 in reply to Lindle]

I have extensive endo and have it attached to my bladder, among other places. So pretty sure I meet the criteria. They’ve asked my GP to do the referral.

[Stacey85 in reply to Woo25]

I live in Scotland and getting referred to a specialist endo centre is proving rather difficult!

I was diagnosed with endo on my utersacral ligament, bladder, potentially some in my cervix and abnormal cysts.

They chose to burn it off my ligament during my diagnostic lap and left the stuff on my bladder and whatever else they found in my cervix.

They won't refer me because apparently its not extensive enough and I don't meet the criteria!! Basically bad enough to leave but not bad enough for help at an endo clinic.

I was so mad I put in a complaint. They started telling me before Christmas I didn't have endo and then told me if I get pregnant it would go away. I've pushed them to write a letter to the endo clinic in Edinburgh and I'm waiting to hear if they will take me or not.

I spoke to my GP straight after my lap and he said he's not allowed to refer me to the clinic it has to be my gyne.

I hope you don't haven to go through all this xx

[Lindle in reply to Stacey85]

Yes in Edinburgh you can only be referred via GP or secondary care if you are in Lothian, otherwise it has to be secondary care. This is against NHS Scotland standards and I'm in the process of addressing this on behalf of the endo group I run. I have been in touch with the centre and it isn't them who are doing this, it is the people who arrange the funding.

But in the meantime they cannot refuse you if you have endo on your US ligaments or bladder. I have actually been told by the person in charge of the funding that they filter out patients out of Lothian even if they have severe endo which is outrageous and against all the required standards which require women to be treated equally wherever they are in the UK.

The definition of severe endo for the purposes of BSGE accredited endo centres is in the NHS England treatment specification at the link below. You will see that it includes the US ligaments (rectovaginal endo) and the bladder. This applies to Scotland as all surgeons must follow nationally accepted standards. The RCOG standards are also linked below and you will see at section 3 (which deals with specialised services including severe endo) that all women in the UK must have equal access.

england.nhs.uk/commissionin...

rcog.org.uk/globalassets/do...

[Stacey85 in reply to Lindle]

What would you advise I do?

[Lindle in reply to Stacey85]

Are you in or outside Lothian - presumably outside?

[Stacey85 in reply to Lindle]

Yes I'm outside Lothian. I live in the Scottish Borders. My closest endo clinic is the Royal Infirmary Edinburgh.

[Lindle in reply to Stacey85]

Are you on my Facebook endo guidance group Stacey as I'm not on here much and it's complicated.

[Stacey85 in reply to Lindle]

Yes I follow your group. Would you like me to DM you on there?

[Lindle in reply to Stacey85]

Have you already posted on there?

[Woo25 in reply to Stacey85]

Oh this sounds so awful for you! I don’t understand how it can be so different, and the pregnancy thing is my biggest hate in all of this. I really hope you get help soon.

I’ve not had my follow up with gynae consultant due to delay in appointments. But they wrote me a letter today after I spoke to GP and have suggested further surgery and specialist centre. So fingers crossed my referral is ok xx