Help - Currently in hospital: Hi all I was... - Endometriosis UK

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Help - Currently in hospital

sunny2408 profile image
10 Replies

Hi all

I was admitted into hospital on Friday because of a flare up of endo. There is no specialists in this hospital it’s just as it was the a&e closest to me and also because N.Ireland has no current accredited specialist centres.

The general gynae doing his rounds this morning has suggested I get a lap done here but I really do not want to as they are not specialists and I’ll be maybe be back at square one again (I’ve had one lap done so far in 2021).

Just don’t know what to say or do?

For backstory, earlier this year I paid privately for an inital consultation with a consultant who was previously part of an accredited specialist centre before they lost this over covid. This consultant then placed me on his NHS w/l and referred me for an NHS mri in my own area. The general gynae today basically made me feel so stupid and said it wasn’t possible to be referred for an mri from one trust to another and move between private and NHS. He was just awful and he then told me that my consultant had retired which I wasn’t aware of either after I specifically chose this one.

I’m just worried of the consequences if I decline their treatment here whilst I’m an inpatient.

sorry for that long one, it’s difficult to explain!

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sunny2408
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10 Replies

Sunny2408, I am based in NI too. I was referred from the Causeway Hospital up to Antrim for specialist treatment. This was 2 weeks ago. I was in A&E too but for an impacted bowel caused by co-co-codamol use, which I did not know I had. I had an x-ray and CT scan which showed kissing ovaries. I was spoken to by the gynae surgical team. I was in the same position as you. I was convinced they would want to operate which I did not want them to do as they had no expertise with endo. However, they said they would only operate if it was an emergency as they were not specialists. They referred me to Antrim to a specialist team there. If you are not happy, refuse the treatment and ask for a referral! General gynae should not operate on you unless it is an emergency!!

sunny2408 profile image
sunny2408 in reply toBehind_Hazel_Eyes

Thanks so much for your reply. I’m glad the Causeway team had the sense to refer you on to a specialist, that’s reassuring! I had my previous lap done privately by a surgeon who is also based in Antrim, hopefully you will have a good experience.

I think I need to stand my ground if they mention the lap again, it’s hard not to sound rude but they should know better. Hope you feel better soon and take care x

Annabelannabel profile image
Annabelannabel in reply tosunny2408

It's not rude it's your decision it's a duty of care and the right care. If it's an emergency and it needs to be done get it done if it doesn't you have a right to be referred or treatment that your happy with an action on their part is essential but anything is your choice it's your body don't rush it. If I was in a serious way in pain I'd do it if not I'd put the ball in their court and say what's plan b I don't like your plan a eg laparoscopy

sunny2408 profile image
sunny2408 in reply toAnnabelannabel

thanks for this, I appreciate it

KlP28 profile image
KlP28

Hi, yeh awkward situation really bless you.

I would also be reluctant to have the laparoscopy there too, with a non endo specialist surgeon doing the op.

Could they communicate with your GP & then they refer you to a endo specialist surgeon? Especially, if your current specialist has now retired.

All the best x

sunny2408 profile image
sunny2408 in reply toKlP28

thanks so much for your reply. I’m hoping to stay a bit stronger today and stand my ground by asking questions without getting upset. Don’t think I was particularly listened to yesterday! Hoping today will be a better day. Thanks again x

sunny2408 profile image
sunny2408

Thank you. I’m okay thanks, I’m hoping it may be a different consultant today for ward rounds as yesterdays had me to upset and wouldn’t let me speak without making me feel like I didn’t know what I was talking about.

M1673402 profile image
M1673402

hi, hope you’re feeling a little better. Fellow NI person over here, just a word of advice, I had surgery with the “specialist” team in Antrim - it was unsuccessful due to extent of disease and I was referred on! Just be sure whoever you are being referred to is truly an expert and not just someone with an interest in the area!

sunny2408 profile image
sunny2408 in reply toM1673402

Hi, thanks for your reply, I appreciate it. I managed to get home last night after 5 days in there. Completely understand where you’re coming from, it’s so difficult to trust ‘specialists’ who aren’t really specialists. I managed to make contact with my original gynae consultant and his endo specialist nurse who reassured me I’m still under their care in Altnagelvin. Such a relief after the awful consultant in the Ulster made me feel like I was going mad that I wasn’t anymore and by telling me he had retired. I’m still so frustrated thinking about how he spoke to me. I hope you’re feeling okay and manage to get the help you need soon x

M1673402 profile image
M1673402 in reply tosunny2408

thank you, really glad you’re home! I know exactly the consultant you mean. I had an appointment with him, he’s definitely not retired yet, they’ve been saying that for years for some reason! I hope things go better with him. Beware he hasn’t much beside manner so take no crap! Good luck x

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