Specialist centre won't help me

[Ash24601]

Hi,

This is complicated so I will try to keep it brief and use pseudonym for the Dr's as I don't want to scare anyone under them.

I've had 8 surgeries for endo.

I had a diagnostic 15 years ago and then my local team decided I need to go to the capital city because my case was severe.

3 of my ops should have been 1 done right. In one of them the surgeon ("Dr C", now retired) ran out of time while I was already under, so he turned it into a diagnostic. He assured me no bowel endo was found.

A month later his colleague ("Dr B") went in to remove what was find except he also found 2 large patches of bowel endo he wasn't confident to remove. That led to a year of me waiting for a colorectal surgeon, while I had constant bowel obstructions and couldn't eat real food.

That was years ago but it's important to understand my distrust.

Surgery no.7 was a private surgery in spire due to the waiting lists. With a Dr who is in the same team but I'd never seen (Dr A). I asked 'what if you don't find it'be said 'I always do'. He also assured me he's confident to operate on the bowel without a colorectal surgeon. I was gutted I didn't have him before as it could have saved me a lot of trauma.

April 24 I had my 8th op with Dr C except he claims he can't find endo. He said I still have it but he can't see it he did do 3 hours of adhesion removal though which briefly helped with Digestion symptoms.

Unfortunately I've been getting sicker and sicker and since January I can barely get through the day.

I had an appointment with the endo nurse. The amazing nurse has retired so it was the new nurse. Her attitude wasn't great. It's so disappointing because the original endo nurse is one of the only medical professionals I feel listens to endo patients and actually goes to bat for them, writing to gps with suggestions.

This new nurse basically had a go at me for being out of area. She said there's nothing more they can do so will have to discharge me. She said I can't see Dr A unless I pay private (to be clear this is all one nhs team & Dr A is the name on my letter, I just happen to see Dr C). She didn't ask about my symptoms or offer any treatments.

I ended up asking about the pill, lidocaine and oramorph (things that previously helped) but she shrugged it off.

Annoyingly this capital city is no longer accepting new referrals for those out of area. My local healthboard referred me there tears ago because they can't help. I feel like I'm being left with literally no medical help at any level...

And I'm in Wales, so not sure if the right to chose applies...

I honestly have nothing left in my life due to these symptoms. I barely manage my awful job, I keep getting interviews then cancelling out of fear, I used to run a support group but ironically became top sick, I have no more hobbies. I can't just be left like this.

[Regenallotment]

oh man this is awful, I'm so sorry you are dealing with this.

I think you need to go back to the department secretaries, send an email with the brief history you have shared here and where you are now.

List symptoms today, what worries you, what its stopping you doing

Ask what they recommend. Gastro. Diet. More laps? Medication. Injections. what.... ignore the nurse, she clearly lacks experience. Go above her.

Get it written down not face to face and ask for reply by email so you can have time to read and digest.

[Pinkgrannie]

So sorry you’re going through this. I would definitely contact PALS, the patient complaint section of the hospital; explain your situation and ask for them to investigate and provide a solution you are happy with. I can see you’re tired, but Keep fighting. 💪🏻💗💗

[Rainbow2468]

I'm so sorry you've been through so much, as someone else has said contact pals and put in a complaint. Sending you a safe hug too 🤗

[Hannah818]

This sounds awful, do they have PALS in Wales?