Newly diagnosed

[Scamps77]

I just had a diagnostic laparoscopy on Monday and they found Endometriosis but we're not able to treat it. They have suggested GnRH. I am wondering if anyone has any experience of this and advice to offer? From what I have read, it seems like quite a bit of upheaval with no guarantee that it will work. I'd be really grateful for any advice you can offer.

[Lindle]

Why were they not able to treat it and where in the UK are you?

[Scamps77 in reply to Lindle]

They said that it was too 'deep-seated'. They had said to me prior to the operation that if it was not mild Endometriosis that they would not be able to treat it as part of the Laparoscopy. I'm in Scotland, Edinburgh

[Lindle in reply to Scamps77]

The NICE guideline requires that you are now referred to a tertiary specialist endo centre. Medical treatment isn't appropriate for severe disease. You have a centre in Edinburgh so your consultant should have been aware of this.

[endokicker1]

Go on the BSGE website and check for accredited centres and choose the most convenient. Also ask to be referred to endo specialists.

I'm sorry about your pain. Wish you all the best

[Lindle in reply to endokicker1]

Scamps77 is in Scotland - they can't choose up there.

[endokicker1 in reply to Lindle]

Oh no!

[Lindle in reply to endokicker1]

In Edinburgh they don't even allow GP referral to the centre (only by a gynaecologist) which is against the 2016 RCOG standards that require that all women in the UK be given equal access to centres and this includes direct from primary care as well as secondary care if it is evident that the presentation is beyond the scope of general gynaecology.

[Scamps77 in reply to Lindle]

Does this mean that I need to get in touch with my gynaecologist to be referred to the clinic? I think that my next scheduled appointment with my gynaecologist is in 6months!

[Lindle in reply to Scamps77]

Do you have the discharge note Scamps? Does it say where the endo was?

[Scamps77 in reply to Lindle]

I had to take the discharge note to my gp but it said that it was in the uterosacral ligaments.

[Lindle in reply to Scamps77]

Then endo affecting the US ligaments is of the deep 'nodular' variety (rectovaginal endo) and does require the advanced excision skills in centres. Can you update us on how you get on. x

[Tallulah182 Moderator in reply to Scamps77]

Hi Scamps,

I am in Scotland and my GP referred me to the Endometriosis clinic in Edinburgh. Make an appointment with your GP and ask them to refer you. Tbh my GP did not even know about the centre at that time but I got a referral from her. X

[Scamps77 in reply to Tallulah182]

This is very good to know - thank you very much. I'll make an appointment with my gp.

[Lindle in reply to Tallulah182]

Did you have confirmed or suspected severe disease Lou?

[Tallulah182 Moderator in reply to Lindle]

Yes, I have been diagnosed with stage 4 endo.

[Lindle in reply to Tallulah182]

So you would have qualified on the grounds of severity Lou. This is why it will be useful to know if Scamps77 's discharge note indicates definitely that it is deep and/or RV endo so that she knows that hurdle is crossed before going to her GP. It does sound like it will fall into the severe scope.

When I looked at the EXPPECT site some time ago it said that referral must be by a consultant. I've just looked and it now says:

'Most women will be referred by their GP in Lothian. Referrals from outside NHS Lothian will be made by a Gynaecology Consultant in the woman’s Health Board.'

So that is definitely good news for women under Lothian but it is still wrong that those outside have to go by another route as the 2016 RCOG Standards do make it clear at section 3 that women wherever they are in the UK must have equal access to these specialised services:

'There are a number of areas within gynaecology where specialist services should be available to support the general gynaecologist (Table 1). Women presenting with complaints requiring these specialist gynaecological services should have the same access to high-quality services regardless of where they live within the UK and uniform access should be ensured. '

(Table 1 refers to advanced excision treatment in tertiary centres)

...and that referral can be by GP:

'With conditions where there is a low probability of successful management in general gynaecology services, it may be appropriate for the primary referring clinician to refer the woman directly to specialist gynaecological services...'

As we know, one of the main problems for women with endo historically has been general gynaecologists who don't treat them properly and we are still seeing many with an attitude of 'I am just as qualified as them (in centres)' and refusing to refer for severe cases. This is occurring in England too, but as we have a clear treatment pathway in England we can just copy the guidelines and put them in front of GPs. I'm not sure what is happening in the other devolved countries or at the Glasgow and Aberdeen centres, but this is really putting those outside Lothian at a huge disadvantage that the 2016 Standards clearly aimed to address as far as I can see, and we are seeing lots of women simply being refused referrals with severe disease.

[Tallulah182 Moderator in reply to Lindle]

Just to note I am outside Lothian and was referred by my GP. Just happened to be my closest clinic was Edinburgh at that time.

[Lindle in reply to Tallulah182]

It's all very strange. I'll write to them to see if they have now revised the referral provisions as it would be so unfair if women are being treated differently.

[Lindle in reply to Tallulah182]

Just received this today from Prof Horne, Lou:

'Unfortunately, we are only allowed to take referrals from a hospital consultant (gynaecology or pain medicine) if a patient is from outside of Lothian.

This is not a clinical decision but a policy set out by our service management team.'

Am taking it up with their service management as it seems it's clearly against GMC regulations for such inequality to exist.

[Tallulah182 Moderator in reply to Lindle]

As I said this was not recent, my case was before the Glasgow clinic opened so maybe it changed after that time.

[Lindle in reply to Tallulah182]

The Glasgow accredited centre only opened this year and the secondary care referral requirement was on the EXXPECT site a long time before. All that matters is that women know the latest position really.

[Tallulah182 Moderator in reply to Lindle]

Exactly and also that people are allowed to share thier own personal experience.

[Lindle in reply to Tallulah182]

But when different people's access to care in the same situation is very different it is worrying.

[Tallulah182 Moderator]

Scamps, in answer to your question about experiences with GnRH injections. I was given this treatment after my first lap and it did give me some relief for the 6 months I was on them. Once I came off them for a 3 mths break the pain came back so was given another 6 months which did not seem as effective.

I think your best route would be to speak to your consultant again and make a plan that suits you, find out why they can't operate and also if you are eligible to be referred to the BSGE clinic.

Also you may find it useful to attend one of the endometriosis UK support groups in your area and speak to people with experiences in your local area.

endometriosis-uk.org/suppor...

[Scamps77 in reply to Tallulah182]

Lou_EndoUk This is very helpful to know. Having read up on the GnRH injections it would appear that a lot of other people have similar experiences with it. It'd be a good shout to go to back to my consultant. I'm going to make an appointment with my GP to get the ball rolling. Thanks very much

[Lindle in reply to Scamps77]

Just be aware that GnRH agonists are not a treatment for severe/rectovaginal endo which they are proposing to give you rather than operating. They may help with pain as they will stop periods and this will prevent pulling on the uterosacral ligaments where you have endo. But it is never a 'solution' as you can only ever take them for a max of 6 months and only once, so you need to consider what would happen after 6 months, and they only 'treat' symptoms not the disease. It is clear that the surgeon has reached the limitation of their skills and you need someone with more advanced skills.

If you want to be treated in accordance with recommendation/official guidelines you need to be referred to a specialist centre where they will give you an expert scan (MRI/ultrasound) to 'map' your pelvis to establish how deep the endo is in preparation for thorough excision which would be the recommended course. You can then decide if you want to postpone effective treatment for 6 months with GnRH agonists, but would have to start all over again with disease potentially getting worse and resulting in a more complex surgery down the line.

'Treatment involves medical methods to suppress the female hormones or surgical treatment to destroy or remove the disease or the affected pelvic organs. Medical treatment is only of benefit in mild cases. Surgical excision is the recommended treatment in moderate or severe disease (2). Removing endometriosis from the pelvic tissues requires considerable surgical skill and expertise, as it is often close to vital structures like the ureter, bladder or bowel. It is best performed using laparoscopic surgery with two skilled laparoscopic surgeons working together, as this enables excellent visualisation of the deep pelvis which facilitates the very delicate surgery required and joint expertise enables joint decision making during critical steps of the operation.'

england.nhs.uk/commissionin...

Hormonal therapies after surgery for endometriosis might be prescribed in two situations: postoperative hormonal therapy within 6 months after surgery with the aim of improving the outcome of surgery for pain (as in your case) and secondary prevention, which is defined as prevention of the recurrence of pain symptoms or the recurrence of disease in the long-term (more than 6 months after surgery). In the latter situation this would mean being putting on contraceptives after a lap to prevent pain and recurrence of new endo from periods.

ESHRE 2.6.1:

'Recommendation

Clinicians should not prescribe adjunctive hormonal treatment in women with endometriosis for endometriosis-associated pain after surgery, as it does not improve the outcome of surgery for pain (Furness, et al., 2004).'

Note that the ESHRE guideline underpins all UK treatment of endo, and the professor who acts as medical adviser to Endo UK is one of the main writers of this guideline so what is written in there can be taken as a definitive recommendation.

eshre.eu/Guidelines-and-Leg...