I had a laparoscopy yesterday, by a general gyne. He found endo behind uterus, which he said was old, active endo on right ovary which was stuck to pelvis and near right urethra which he didn’t remove as he didn’t want to damage urethra. On the report it says ablated. I asked about my bowel as it causes pain and I bleed usually when on my period. He said it maybe deeply infiltrated but he can’t see inside organs, so I should ask my GP to refer me for a colonoscopy.
So today I phoned GP surgery, to be referred for colonoscopy or if I could be referred for an MRI scan instead, incase it’s in other organs. She told me I have to recover from this procedure before I can be referred, but as waiting times are so long I thought we could get the ball rolling. I also said about seeing a endo specialist, and was told they can’t refer, it has to be by a gynaecologist.
On the discharge letter it says they will see me in 4 to 6 months, as it was only ablation I’m worried it’s going to grow back in that time, and be back to square one. So I don’t know if I should go private to have an MRI scan, so then I know where else it is, or wait 4 to 6 months and hope they refer me?
Any advice would be great, thanks x
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CeCeT
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This makes me so so angry! I run a UK endo guidance group and you are the second to be told just this week that I know of by an English GP that a gynaecologist has to refer you.
NHS England published its specification on the treatment of severe endo 10 years ago and they are currently updating it. It is absolutely clear that if there is known severe endo then a GP can refer you to a centre - if we think about it logically what possible reason would there be in wasting both yours and the NHS's time in expecting you to now wait for a consultation with a gynaecologist (who probably doesn't know the pathway either) just to achieve the same end to get you to a centre.
When 'old' endo is reported behind the uterus it is fibrosis, which is deep endo. The active disease can be several centimetres beneath. It's a good job he didn't do much as it would actually have been against the law to touch anything beyond the mildest endo.
You should have had a scan before the lap - this is now the requirement following the updated ESHRE guideline. A private MRI or expert ultrasound would now be the best course if you have the funds as this would provide more conclusive evidence to get you referred to a centre. Will DM you. x
Thank you so much for your reply, most people probably don’t know this so they just get fobbed off. They seemed more worried about the amount of pain killers I was taking and for how long, it’s not my fault they’ve left me in pain for so long.
I know. In 10 years we haven't come across a GP yet who has even heard of BSGE accredited centres, let alone the NHS England treatment specification which I'll link below.
The NHS England treatment spec doesn't apply to Scotland but the NICE guideline does which requires that you must be referred to an endo centre for severe disease. But in practice I'm afraid the centres apply their own rules and there is no consistently of care and there are great inequalities up there. It clearly needs to change.
Thank you for your reply. I've also just learned that the Grampian area in Scotland only has ONE endometriosis specialist and you can't be referred outwith this area so the waiting list are unsurprisingly ridiculous. Given how common endo really is, you would think there would be better support available
It's so frustrating! I'm lucky to have been put onto the surgery waiting list as quick as I was but it was only because this will be my 3rd surgery, so we're pretty confident that the endo is back and needing excised. But getting the initial diagnosis felt painfully slow and difficult. Felt like I was constantly having to fight to be listened to. Thinking of having to do that in this current period fills me with dread. I can't imagine being told you're not even able to get on the waiting list! When I got place on waiting list, I was told it would probably be 2yrs before I can get the surgery so they really are backed all the way up. I wish we could recruit more doctors into the endo clinic
I’ve been told it’s highly likely I’ll need surgery to unstick all the adhesions and remove 2 endometriomas but I don’t even live in the Grampian area so it’s even tougher to get referred in. Fills me with so much worry and anger for all the ladies who have severe endo and need the specialist treatment in Scotland (or anywhere) but can’t get it just because of waiting lists or where they live.
So glad you are getting seen quick it must be such a relief for you especially after 2 other surgeries. I hear what you are saying though with having to fight I was 11/12 years before I finally got listened to but only because it was affecting my periods by then. Had it not done I presume I would still be getting told the pain is nerve damage after another surgery.
Sorry to hear of your experience in some areas but I can vouch for the GPs in the West Yorkshire area who have been referring to BSGEs in Halifax and Wakefield for many years with good results. I am one of those patients who received very good care both from GP and Specialist Oncology Gynaecologist within one of the centres.
With the pandemic many referrals and diagnostics have been disjointed but non specialist surgeons quite rightly will not act beyond their scope of practice, this is not illegal as you imply but would professionally would be a breach of their regulatory body and against NICE guidance.
Primary Care Networks and Integrated Commissioning Bodies can alter their referral guidance for GPs so this may be the case here that they have introduced different guidelines. Best to check with the individual geographical areas what their GPs have been instructed and not to assume they are all acting against NICE information.
The treatment of severe endo in centres in England is prescribed in legislation (Health and Social Care Act 2012) and NHS England has confirmed in will remain so under the Health and Social Care Act 2022. The treatment specification is currently being revised but the standards to be applied remain with NHS England.
Severe endo as a 'highly specialist service' hasn't been delegated to ICBs yet - this is from April this year if ICBs prove to NHS England that they are ready.
A lot of endo cases are found routinely on laparoscopic surgery but not all are severe in clinical presentation hence not all will find their way into the BSGE environment which is possibly what has occurred in this case. If CeCeT is still under the care of her Gynaecologist and for review in 4-6 months then her GP would most likely leave subsequent onward referral to them. This is out of professional courtesy once a patient has been transferred into secondary care and is routine practice in all specialities.
The vast majority of health professionals are working with the patients to get the best outcome for care. As always if in doubt about why decisions are being made in a certain way communicate with your GP or Consultant to understand clinical decision making.
The poster has said that her gynaecologist found old endo behind the uterus which he didn't touch and which by definition is rectovaginal endo fibrosis. He found endo near right ureter which by his own admission he was unqualified to touch. He has said the endo he found might be deeply infiltrating. Essentially he said that what he found was beyond his expertise. Only non-severe endo can be treated in secondary care - peritoneal endo and uncomplicated endometriomas. The definition of severe endo is clear in the NHS England specification as is the requirement that this should have been referred to a centre:
'Gynaecologists in secondary care, who identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or open surgery, will refer patients from secondary care to an Endometriosis centre.'
The NHS England treatment specification for severe endo doesn't apply to all specialties and I personally can't see any benefit to a patient having to wait for 6 months to see a consultant to refer her to a centre, who should have already done so and might resist it, to then wait one to two years for surgery anyway when there is a clear expectation by NHS England that her GP can refer her straight away.
I spoke to my GP today, he was much nicer than the doctor I spoke to yesterday. Although he didn’t know about the centre, he looked it up and has agreed to refer me x
Well done. Did you refer him to the NHS England treatment specification I linked above and was he clear on it being tertiary care and they need to refer direct to the centre and not through the usual route?
I didn’t refer him to the NHS treatment specification, but I had it ready if he disagreed. He said he was referring directly to the centre, but to keep my other appointment if that comes through first, incase they can offer any help in the meantime x
If you do decide to go private for MRI phone around. Hospitals charge loads, there are companies that have much better charges that include a report. I paid £250 for one part, £400 for two. You don’t need a referral. Endo/adhesions don’t always show though.
It’s not easy getting answers, sorry the system isn’t getting you the answers you want and need at the moment. Keep pushing. My GP referred me to a centre when I wanted to swap, they can easily refer anywhere you want. They get iffy if out of trust area, but they can still refer.
A colonoscopy is completely the wrong scan becuase endo very rarely grows inside the bowel. I have stage 4 endo right through my bowel and it didn't show up at all on a colonoscopy (although the colonsocopy was extremely painful).Any doctor doing a lap without an MRI or internal ultrasound first is completely unprofessional, the scan has to be done first to show where the endo is.
Get a private scan done and tell your GP to refer you. If it's private you can go wherever you want and see someone quickly.
I'm really sorry you have recieved such bad treatment, I would consider contacting a medical negligence lawyer because your doctors have both ebroken all the guidlines and advice.
Thank you everyone for replying. I’ve just called GP surgery again, asked to speak to my doctor, (he wasn’t there yesterday) told the receptionist about how I was spoken to yesterday, and given false information. Hopefully my doctor will actually help, now I’ve got more information from you all.
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