To wonder why gynae have discharged me?

[Littleideasbigbook]

I work for the NHS and I lean more towards socialised medicine, so this is not a rant at the health service at all. More a rant about the cultural attitude towards women's health, if anything, and wondering if its normal to be discharged in these circumstances? Anyone with any gynae experience (patient or HCP) please let me know if this is normal?

Background: I am 41, sterilised and have endometriosis, adenomyosis and fibroids. On the 14 December I passed a clot the size of my hand and lost approx two mugfuls of blood in an hour so 111 told me to go to A&E because I was seeing stars and dizzy. I was examined internally, scanned and given mefanamic and transexamic acid and medication to sort out my BP as it was going from low to high, depending on whether I stood up and flooded.

I had a follow up with gynae (who had previously discharged me because I got the mirena taken out by my GP practice due to BV and UTI's) I have just got the clinic letter that states:

'Patient previously dx grade 3 endometriosis and adenomyosis, infiltration into pelvis and bladder. Attended GATU following pelvic USS. LMP 14.12.20 heavy bleeding with significant abdominal pain. USS shows anterverted uterus with heterogeneous appearence. Multiple fibroids seen, largest measuring 18cm in anterior uterine wall. It does not appear to be abutting the endometrium. Endometrial thickness= 8.5mm - uniform.
Discussed with Dr Xxxx - no acute gynae concerns. Discharged from GATU today. GP to refer back to GOPD if any further concerns.'

So I have multiple issues with my uterus but...discharged? If a man had multiple issues with his penis that was causing heavy bleeds, clots and significant PELVIC (not abdominal) pain I am pretty sure that there would be some treatment or plan available wouldn't there? AIBU to think that because it is a defective uterus inside a non child bearing woman it isn't taken seriously? If AIBU and this is normal I am prepared to take it on the chin. Thanks.

I feel angry on your behalf. I hope your GP pushes for you to go back to gynaecology.

No acute concerns doesn't mean no concerns just no concerns their team can act upon.

It's really not necessary to start any comment or criticism of the healthcare you have/have not received by prostrating yourself on the altar of the NHS.

Have you contacted your GP to ask what their plan is? They still have a duty of care to you.

Is the letter discharging you from gynae acute treatment unit (GATU) and suggesting GP should refer you to gynae Outpatient department (GOPD)? If so, chase that up. Outpatients do investigation on chronic problems.

Check with pals

My GP has not been in touch at all but I will need a repeat of the medication as I have used it all on this last period which was another nightmare tbh. They are only doing econsults at the moment so will put one in.

I have no idea about gynae stuff apart from what I read on the internet and I am not entirely convinced I am getting the right info there!

Why couldn't they refer u to gopd?

No, it says:

'GP to refer back to GOPD if any further concerns' so does that mean the GP will refer me or do I need to ask for a referral?

Golden rule of navigating NHS care: never ever assume something will happen, especially if your assumption is based on different teams/staff communicating with one another. They don't.

Contact your GP and ask them to make the referral.

Won't happen otherwise.

@user1174147897 This us what i was missing. So the acute team were involved because of A&E admission but there should be an outpatients team for my chronic conditions? Right, I get you now. They were in the same place in the hospital so I had not fathomed that out. Will push my GP.

There is nothing acutely wrong that needed action at the acute treatment unit (see GATU as a sort of gynae A&E) so you were discharged from hospital to go home effectively is what they mean.
You clearly have ongoing gynae issues they need sorting so it's down to your GP to refer you to gynae outpatients to access gynae services for any elective treatment, possibly a hysterectomy from what you've said.

Sorry the convo has moved on since I started posting. Agree with what you've said, go back to GP and ask for a referral to gynae.

I can see your frustration but this is what I make of it

It’s perhaps in-speak assuring Gp that referral to a consultant is appropriate and telling them the issues identified

It’s implied that the acute unit don’t refer on to consultant outpatient pathways but that attending for treatment was appropriate / necessary

It’s for your gp and you to decide if the referral is made now depending on your personal circumstances and for GP to repeat prescribe also meanwhile if appropriate

It’s possibly more supportive than it comes
across

Good luck, hopefully your GP will get things moving once you've followed up with them.

It wasn't very clear was it, but hopefully you are reassured that you won't be left high and dry. Hope you get it sorted soon.

Echo what other posters have said (am medical and DH works in this area).

Whilst we think of the NHS as one big body in day to day life it doesn’t work like that. There are all sorts of pathways in place on who can refer to who etc. Some of this makes life simpler an ensures an appropriate level of senior input/review, some of this puts unnecessary hurdles in place (but that’s a conversation for another time!). We’re often not very good at explaining this to patients. Most of the more burdensome hurdles are to do with commissioning and making sure the GP/trust is paid correctly for services provided which is vital for the survival of services.

The ED department almost certainly would have only been able to refer you to the acute gynae service which sounds entirely appropriate given your presentation. Their role is to do the investigations to rule out a problem that needs fixing there and then, do you need emergency surgery, a blood transfusion, IV antibiotics etc. Out of hours the acute gynae service may only be staffed by a couple of doctors who will also be covering ward patients, labour ward etc so sadly don’t have the time to dig deeply into problems or come up with long term solution. Fortunately you didn’t require any emergency intervention hence why you were discharged from the acute service.

It sounds entirely appropriate that you are seen in outpatient clinic and that’s what your discharge letter implies. For a lot of women there may be interventions that the GP could provide (such as medication, the coil etc) that haven’t been tried yet - in this case it’s completely appropriate that the GP is responsible for this as it’s much simpler for them to follow up etc. It may be that some of these women will get on well with the coil and not need to be seen in gynae outpatients at all which means appointments aren’t used unnecessarily. For others who conservative management doesn’t work for/have already tried it then the GP can refer to the relevant clinic. The aim of the system is that community care and gynae are in the loop with what’s happening and that the first steps in the NICE guidelines are followed.

In a lot of hospitals there wouldn’t even be the facility to refer from acute gynae to gynae outpatients as it would involve writing a referral from gynaecology to gynaecology (easily missed if you’re attending out of hours and the doctor who’s seen them gets called to a string of emergencies). Perhaps counterintuitively these referrals (if they did happen!) would go to the back of the list as there isn’t a system for them so they’d end up behind all the GP referrals.

Including the line about GP to refer back is pretty much a professional go ahead to the GP to refer to outpatients. It’s short hand for there isn’t anything we can do to fix this here and now in the acute setting but the are almost certainly things that can be done in the long term. I would encourage you to ask for GP for this referral when contacting to arrange your next prescription (especially as it sounds like you’ve already gone down the coil route without success).

Whilst I’m not denying that there are vast structural and historical inequalities in women’s health (I’ve fallen victim to this myself) on a personal level most practitioners who go into gynaecology do so because they’re passionate about it and do want to help. I know there are bad apples (again, I’ve been there!) but there are also a lot of dedicated, caring professionals out there who are as frustrated as the public.

I really hope you get some help , it sounds horrible.

Definitely as a pp said - discharged from GATU, GP to refer to GOPD. Contact GP & explain symptoms etc and ask for referral.

Im a GP.
Essentially this is pretty standard of NHS care and i can promise you its not just women health. Honestly this is no different to how most specialities operate to be honest.

Agree they have discharged you as "no acute issues" and GP will need to re refer you - you will need to let your GP know tho as they will only do this if they are aware of "any further issues". If you have an 18cm fibroid (and thats not a typo from 1.8cm) then you definitely need to see someone.

Now there is a whole separate conversation about pathways etc and i completely agree this is ridiculous and its a stupid way of doing things. There is quite a lot of secondary care 'dumping' work onto GPs and creating work - i.e. your GP now has to take the time to re refer you - when it would have been much quicker if whoever wrote that letter just organised a follow up out patient appointment themselves, rather than writing and asking your GP to do it. Historically this used to happen because of payments for referrals etc and the hospital could only earn that money if the referral came from the GP, but this has changed now and it should be a smoother process. But its sadly not. But its the same for every speciality, not just gynae.

It was completely my fault. I didn't know about acute versus outpatient versus primary care. I work in research and have a data head and my brain works in a lineal way. I think I knew IWBU on some level but was shocked by the 'discharge' as I thought they have just cast me adrift with an 18cm (wasn't a typo!) fibroid inside me but I can see that they have done nothing of the sort. Sorry everyone! Again, I don't lile googling but after just basic searches my endometrial thickness is abnormal and my uterus is enlarged so I was thinking they had discharged me after finding these things but...pathways! Thank you all for helping me. I really appreciate it as I was feeling very down!

I wouldn't expect a patient who's not been through the system before to have understood this is how it works. Don't be so hard on yourself.

Completely not your fault - the system doesn’t make sense to the people in it let alone outside!

I feel you op. My dh is medical in an area closely related to womens health and he can't believe the treatment I've been getting (and this is with a partner who most doctors i see know of professionally. )

11+ months bleeding. I'm 44, on i dont even know what amounts of hormones anymore. Gp tried to take contraceptive implant out my arm last week as I now have coil. It wouldn't come out and is very obviously now broken. Dh and I can both feel at least 3 separate pieces. I've also started feeling quite unwell- like I'm on the verge 0f a panic attack, upset stomach, headaches. Gp got in touch with the hospital and apparently the department that removes problem devices say that most women who claim their implant has broken are incorrect. And that there's no evidence of hormones leaking when it breaks as it just doesn't break. Except mine has....

The care women get in womens health in the uk is disgraceful. There's such a suck it up and deal with it attitude. You can bet your life if it was men dealing with these things, research and treatments would be light years ahead of where they are now.

@Littleideasbigbook you were not BU at all, please dont think that’s what I was implying. I was merely hoping to clarify.

I actually agree this is a really inefficient system and needs to change, some GPS are trying in their local area but it’s a big uphill struggle. Just one of the many things in the nhs that needs improvement! Do ask your Gp for a referral tho. Also if you have fibroids that big it’s likely the endometrial thickness won’t be accurate as it distorts the cavity/ skews the measurement. Good luck.

There is an excellent Facebook group called
Endometriosis Guidance and Information Resource UK (EndoRevisited)

Please join it and you will get advice and support about what to do.

There are BSGE accredited centres (NHS) and patients with severe endometriosis should be seen there.

I had surgery in 2019 which included hysterectomy due to adenomyosis and bowel resection due to endometriosis.

OP that sounds appalling.
I had an emergency hysterectomy for less reason than you. But NOT under the NHS. I paid a tenner a month to Benenden healthcare, after six months you can see a specialist within days.
A YEAR after my operation the NHS appointment came through to have my scan looked at.