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Discharged with worsening symptoms & no follow up - what next?

9 replies

WinterIsReallyComing · 08/10/2025 22:49

I will try and type this as succinctly as possible - I am hoping for some help because I don't know what I can do next.

For 10 months I have been dealing with an intense stabbing pain in my lower right abdomen paired with bloating, nausea and issues with my bowel movements. Over time it has become much worse and I am now at the point where I have a significantly reduced appetite and I am starting to lose weight because of this. The stabbing pain has also started spreading to other areas, such as under my ribs on the right side. Painkillers do not help me with the pain.

Waiting lists have meant that the process has been long but IBS, kidney stones, muscular and gynaecological issues have been ruled out.

I have been under the colorectal surgery team - I had a colonoscopy in August and they found a small patch of inflammation in the opening of my appendix. My GP recently said that the biopsies confirmed this was active inflammation. I have since had a kidney ultrasound that has also found my spleen is enlarged. I was thinking we were getting somewhere and had a morsel of hope.

I have been chasing Colorectal up for a follow-up appointment to discuss the findings and because my symptoms and pain have become unbearable. I have been to A&E a few times when the pain has left me incapacitated - but my CT scans have been clear so I have always been discharged for the consultants to deal with. GPs also say they can't do anything and it is in the consultants hands.

This evening, I received a letter saying 'great news - you're fine and you have been discharged'. I don't know how to process it or put into words how frustrated I am. They haven't addressed the inflammation or enlarged spleen. I can no longer cope with this situation and I am questioning if I am crazy.

Surely they should have followed up because of the pain, worsening symptoms, active inflammation and enlarged spleen? Surely not everything can be seen on a CT scan? I have only ever been phoned by a registrar - the colorectal team have never seen me or examined me in person. I really feel like I am not being taken seriously. I am at a complete loss and It is not an option to go private. What is my next move? I am mid-30s if relevant. Any reassurance that this might be sorted one day would be much appreciated too, really losing hope.

OP posts:
2dogsandabudgie · 08/10/2025 23:03

If the hospital have now discharged you back to your GP I would ask your GP to refer you for an MRI scan as they are more in depth than a CT.

It must be awful to be in severe pain, and I really hope they find out what the problem is.

Cleo65 · 08/10/2025 23:04

Have you ever had any previous abdominal surgery? I had similar symptoms & same investigations - & coincidentally had a burst ovarian cyst. Hoorah said the medics, she's diagnosed and cured!!! But I wasn't - eventually I had a laparoscopy & it found a mass of adhesions from previous surgery. They did their magic stuff & I felt a whole world better - I'm ignoring the fact that apparently they'll end up becoming a problem again inevitably...

WinterIsReallyComing · 08/10/2025 23:26

Thank you @2dogsandabudgie - I will look into this.

I haven't @Cleo65 - sorry you went through that but glad it was sorted in the end. My next question for them was going to be about a diagnostic laparoscopy - I just don't understand how I can be discharged so quickly and with findings that I felt were significant.

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Lougle · 08/10/2025 23:31

2dogsandabudgie · 08/10/2025 23:03

If the hospital have now discharged you back to your GP I would ask your GP to refer you for an MRI scan as they are more in depth than a CT.

It must be awful to be in severe pain, and I really hope they find out what the problem is.

GPs can't refer for MRIs.

@WinterIsReallyComing I would contact PALS and say you think you have been discharged prematurely.

WinterIsReallyComing · 08/10/2025 23:33

Thank you @Lougle - I will do that tomorrow. Do you think it's worth calling the secretary at colorectal surgery too?

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AutumnedCrow · 08/10/2025 23:34

Yes, I second contacting PALS and asking them why on earth you were discharged prematurely without the necessary treatment.

WinterIsReallyComing · 08/10/2025 23:49

Thank you @AutumnedCrow - it is reassuring to hear I am not alone in thinking I was discharged prematurely. I am so worried I am going to have to spend another year in pain and fighting to be seen.

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JenniferBooth · 08/10/2025 23:56

Naga Munchetty has written a book about the medical profession which includes them being dismissive of womens pain. If all other avenues fail and you dont mind going public about this you could tweet her.

WinterIsReallyComing · 09/10/2025 12:23

That's interesting @JenniferBooth - I have wondered if this is part of the issue.

I have emailed PALS and colorectal admin and will follow up with a phone call later. Such a frustrating situation.

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