Shocker.

[BloomingMarvellous]

Am still processing this one. A local endo specialist NHS because of my age last year refused to accept GP referral back to him for urgent care as both pain and bleeding unacceptable. The letter was pretty assertive. Refused to accept that endo was a possibility. Roll on since then , post op privately both endometriosis, adhesions and adenomyosis found and tissue analysis confirms. The adenomyosis needs treating still and requires MRI and likely hysterectomy. No funds for this privately.

Separately had been sent appt for last week for the NHS centre again. Cancelled - “staffing”. Difficult to get hold of. Finally spoke to lovely receptionist whose done her best when they were nudged by PALS. Got back to me yesterday. Consultant despite being informed of the diagnosis since is still refusing to reinstate appt request on list and is sticking by his guns that I don’t have endometriosis.

Yesterday I was both dumbstruck and actually at a loss to know how to go forward. Another part is deeply angry. Yes, for many these things improve with menopause but there are those that don’t. It’s a level of dismissal that needs airing. It’s time this stopped.

[Sunflower35]

That’s so ridiculous. Can you perhaps raise a complaint or ask to be referred to a different consultant or hospital? Make noise on social media too.

[Avourneen]

I think you should write to pals and write formally to the GMC. But I'm guessing they might say the surgeon has the right to refuse ? It is terrible but there is alot of this around but if every time surgeons behave like this they get a written complaint to the GMC then they might really get in trouble. In the mean time look for another surgeon if he misssed endo and adenomysiosis in the diagnosis he is probably not a skilled surgeon (maybe that is why he is backing out?).

Look after yourself first get surgery with the doctor who got you the diagnosis then write a serious letter of complaint about this doctor to the GMC and PALS and try to get some legal advice from a medical negligence company. Lots of them do no win no fee they could say you condition has been worsened due to the delay and that you have been caused added stress etc possibly.

There seems to be little or no comeback for a lot of doctors who treat patients like dirt. It might be that other women have had issues with the same surgeon try the Facebook endo group. They have a section for people who have had problems with their surgeons and patients are allowed to leave honest feedback about doctors and they can contact other pateients of the same doc. You will get support there.

[BloomingMarvellous in reply to Avourneen]

Thank you for taking the time and thought. Am starting along those routes but right now it’s access to care first and foremost to enable me to deal with this side of it. Never got to a point of surgery with this man as his view was my age would deal with it if it was ( which clearly looking back was said to humour me rather than a serious diagnostic view) . Call me an innocent but while I know is easy enough to make an incorrect judgement on a diagnosis, miss things in surgery etc when given evidence on a plate that you deny that then enters into a whole new category of its own. His view is unjustifiable and it’s the arrogance which is astounding. I would look at the FB group but recently had mine hijacked and it’s inaccessible. FB not denning me access to my own page and I can’t be found by friends. 🙄. In time that one.

[Dogmad6]

This is shocking and disgraceful. Why can't the consultant accept the clear evidence? Arrogant! Can you be referred to a different centre by your GP? You wouldn't want this idiot to operate anyway I imagine.

So many of these people refuse to accept that post menopausal/ post hysterectomy endometriosis even exists. I've had it for 18 years. xx

[BloomingMarvellous in reply to Dogmad6]

Unfortunately shutting themselves off from the inconvenience of information that unsettles their worldview of endo and adenomyosis doesn’t actually help anyone in the care of patients either in the short or long term. It simply denies the world is round and they live in fear of falling off the edge of the flat world. For as long as this persists they will live in ignorance. We have useful applicable information to share that would change care radically.

[JasmineBlossom99]

Does the specialist you saw privately work for the NHS too? If so maybe look up the hospital and ask if your doctor will refer you to that hospital/doctor. I beleive they can if its a specialist area. You'll have to start from scatch as I understand they can't cross between private and NHS, BUT at least you know you'll be seeing someone you listens to you and you trust.

[BloomingMarvellous in reply to JasmineBlossom99]

In general that’s a smart move but not in this situation. Timing they say is everything. Sadly he’s just stopped working for the NHS and has gone private only. He has said I need the pelvic MRI and then the surgery as the bleeding is unacceptable and unwarranted at this point. He’s offered to do it straight away privately but we don’t have the funds. It takes so long to even get into someone’s list that I was only too glad to have the other appt to request all the necessary next steps without them having to do the grunt work. Appears that can’t even get on the first flight.

[JasmineBlossom99 in reply to BloomingMarvellous]

Aww I'm so sorry that must be really upsetting and frustrating. Can he recommend any doctors that work via the NHS that would listen and help you?

[Cailleach]

I’m assuming you are peri menopausal? The recent European ESHRE guidelines do state that doctors should consider that endo may persist post menopause. Worth quoting, they are not binding but do indicate that the consultant is not following current thinking. My experience and that of quite a few people on here is that it can persist.

I wouldn’t waste your time trying to see this consultant, you are never going to.get good treatment from him. If you want to put in a complaint of course, go right ahead, it could help others in the future.

As soon as you get FB sorted out I would agree you should join the group there where you can get recommendations and hopefully find someone who will take you seriously and treat you on the NHS. There are also a lot of useful files and information.

Could you afford the private MRI without the surgery? It could be helpful in moving things along when you see a consultant.

Hope you are able to get some help.

[Riverchick]

Hi blooming marvellous, I’m so sorry for what your dealing with at the moment , I’m currently trying to resist going back to my usual consultant, so I’m trying to research different hospitals ect can you please pm me the the hospital and consultant that won’t see you so I can avoid please.