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Original poster

Gynaecology oncology tests and afraid

51 replies

Stella123456 · 22/05/2023 22:00

I have been referred to gynae oncology as an urgent referral. My appointment is tomorrow. I have been counting down the days as I am stuck in bed most of the time.

I am having a biopsy and a scan tomorrow.

I feel the shock and trauma of my illness is a heavy load for myself and for my family.
I fainted on the school run today.
i am afraid of the procedure because I know it will be painful. I hope they will give me Valium but I’m afraid that they will not.

please can anyone support me?

OP posts:
Original poster
Stella123456 · 23/05/2023 20:16

Private for the next investigation is 5k. I just don’t know what to do

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primoseyellow · 23/05/2023 20:16

What happens when you go to A and E? I'm so sorry this sounds awful for you. Did your GP refer you for anything?

Original poster
Stella123456 · 23/05/2023 20:22

Gp referred me for this appointment today once I brought the scan in from consultant. She said I’ll be seen urgently 2 weeks etc

at a&e they treat me for urinary retention.

after 5 times at a&e for this my GP still refused to refer me for gynaecology ultrasound. Which is when I went private the next day

this weekend I had to go again to a&e because so much blood loss from bladder

but no scans because I said I had the investigations happening today and they just stressed that it’s very important and I need it quickly

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Original poster
Stella123456 · 23/05/2023 20:24

I mean the gp refereed me two weeks ago when I brought the scan to her. She promised I’d be seen quickly and this appointment today was the one in 2 weeks from referral.

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Original poster
Stella123456 · 23/05/2023 20:25

So I’ve counted the days to today thinking at last a biopsy but nothing. They said it’s urgent from now. So two weeks again

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Original poster
Stella123456 · 23/05/2023 20:27

A&e doctors have always said I need gynaecology but GP wouldn’t even speak to me. He told a receptionist to tell me he’s looked at all a&e notes and there is no indication for gynaecology referral.

A&E said you need urgent vaginal ultrasound. Dr there said I need to do it privately. Which I did.

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Original poster
Stella123456 · 23/05/2023 20:29

My head is swimming. I have had no normality of life for the past few weeks. It’s a nightmare. And I have young children.

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Original poster
Stella123456 · 23/05/2023 20:29

I’m pouring it all out here. Sorry. But it’s just too much to process on my own

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ILoveMyBedTooMuch · 23/05/2023 20:36

Are you saying that the first scan you had done was private? Did you take it with you today if so?

I was referred under the two week rule and they did examination etc and referred to an ultrasound I had had done on the NHS. There was a McMillan nurse there at the appointment and in less than a week I had a hysterectomy.

justgettingthroughtheday · 23/05/2023 20:39

I'm so so sorry you are going through this!

what did gynaecology say today? Will you be given an appointment in the next two weeks?

If so breathe. I know it's scary. I've been there. I a have endometrial cancer and the waiting sucks!
I would call gynaecology tomorrow morning and ask to speak to the appointments team. Explain what's been happening and also request that they do the procedures either under general anaesthetic or sedation.

I would also consider complaining about your GP. And in future ask for a woman. I have never found myself taken seriously by male GPs when it comes to women's issues.

Original poster
Stella123456 · 23/05/2023 20:44

Yes my first - and only- scan I have had was with private consultant. The hospital were sent a copy with referral. I also brought a copy with me today. They said pathway is two weeks from now

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Original poster
Stella123456 · 23/05/2023 21:04

@justgettingthroughtheday im so sorry to read you’re going through this.

they told me today I would need general anaesthetic for the biopsy which I’m terrified of. Every experience at this hospital has been horrendous. And if they treat me like this when I’m conscious god knows what they do when I’m asleep. I would definitely need one eye open

i am seriously in shock at the moment. My ears are screeching it must be blood pressure

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Original poster
Stella123456 · 23/05/2023 21:28

I will try. Today the macmillan desk at hospital was closed. But maybe tomorrow I’ll try. I’m just loosing faith now

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justgettingthroughtheday · 23/05/2023 21:43

@Stella123456 trust me it is much easier to have it done under GA. I have had 3 biopsies/ hysteroscopies under GA and now recently a hysterectomy.
It was scary the first time but don't be frightened of the GA. You will be fine.

But if you don't trust them you have every right to ask to be transferred to another hospital. The only downside of this is further delays to your treatment.

My experience has been that I felt messed about before diagnosis. I have never felt like my symptoms were being recognised and taken seriously. Probably because I'm big. But the moment I was transferred to the oncology side thing changed and everyone I have come into contact with has been great.

ArabeIIaScott · 23/05/2023 21:56

You can call, message or text Macmillan, too. I just thought they might be able to explain your options or treatment to you. Sorry, OP. Hope you are able to rest up a bit tonight.

Batalax · 23/05/2023 22:52

Yes, ring up tomorrow and say that you’ll accept any late cancellation. Calculate the time you can call a taxi and get to the hospital. Stress how long you’ve been waiting. It might get you to the front of the queue quicker. Your story is horrendous.

Original poster
Stella123456 · 24/05/2023 10:21

I have asked my GP to refer me to the Marsden now. I think even with a further delay this will be better. I did not know I could ask for a particular hospital

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ArabeIIaScott · 24/05/2023 10:29

Hope you get all of this sorted out soon, OP.

Original poster
Stella123456 · 24/05/2023 11:29

ArabeIIaScott · 24/05/2023 10:29

Hope you get all of this sorted out soon, OP.

Thank you.
one thing I have now got us pain relief and a weeks worth of sleeping pills from a more sympathetic Gp. Just picked them up. This will definitely help my state of mind.
and I have friends helping with the school run. Then next week half term so I can be in bed more.
the children are always happy to be home playing so that week should be a bit easier for everyone

also I passed urine today without a catheter. This is huge relief. I feel I’m in shock and traumatised. Can’t really think properly and very dizzy.

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ArabeIIaScott · 24/05/2023 11:33

That's good to hear you've got some support and can get a bit of a break next week. No wonder you're in shock! This all sounds very stressful. Hopefully if you can sleep better and manage your pain you'll feel more yourself soon.

Northernlurker · 24/05/2023 12:18

MacMillan support is usually after a diagnosis. It sounds like the op doesn't have a diagnosis as yet.

ILoveMyBedTooMuch · 24/05/2023 23:23

Northernlurker · 24/05/2023 12:18

MacMillan support is usually after a diagnosis. It sounds like the op doesn't have a diagnosis as yet.

As I said I was there for tests on the first appointment with them and was introduced to a McMillan nurse - it was a total shock to see her sitting there. I was told she acted as a liaison point. I wasn't diagnosed at that point.

Original poster
Stella123456 · 25/05/2023 14:15

I definitely need some support so I’ll try them tomorrow. I am not being seen in the 2 weeks wait as promised and don’t know what my recourse is.

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