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Original poster

Had custoscopy 3 weeks ago. Now I can't feel when bladder is full.

33 replies

PeterSpots · 29/07/2015 11:29

Hello. I had a cystoscopy 3 weeks ago. Since then I can't feel if my bladder if full. I was having cystoscopy as I have pelvic pain. I don't know if this is damage from the cystoscopy or connected to my pelvic pain. Was suggested a problem with the sacral nerves. Having MRI Friday. It strange it stadted after custoscopy. It was very sore/rough.

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Original poster

PeterSpots · 29/07/2015 16:02

Bump

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Footle · 29/07/2015 19:00

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Message withdrawn at poster's request.

Original poster

PeterSpots · 29/07/2015 20:12

Thank you Footle. Been hard

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Footle · 29/07/2015 20:32

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Original poster

PeterSpots · 29/07/2015 21:45

It was quite brutal. Thank you. I think that may be an option. He is thinking about sending me to the London pain clinic. That will be to ease the pain not necessarily find the cause. At the moment I want to find a cause but I will have to see what the MRI shows. Thank you

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pinkfrocks · 29/07/2015 22:40

It's unlikely IMO to be the investigation unless he really stretched your bladder at the time. This can happen but it's normally done under a GA as it's painful to pump so much solution in to stretch the bladder and they leave it to stretch for quite a long time.

Ironically, it's done for some women to stop frequency and the problem they have with IC etc.

Do you know if he pumped water in or if it was only the camera?

Have you had other kinds of tests for any neurological problems?
Bladder problems can be caused by other illnesses that affect the whole nervous system.

I hope you get some answers.

Original poster

PeterSpots · 30/07/2015 09:18

I have had an MRI of my brain & there is no indication of a neurological problem stemming from there. It only happened after the cystoscopy. Even when I wake there is no sensation. I don't know if it is coming from my spinal cord lower down but I have an MRI on my pelvis tomorrow. There are receptors in the bladder I don't know. I just know that since the cystoscopy I can't feel my bladder is full. The urologist have called me & said it has nothing to do with them.

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Footle · 30/07/2015 14:08

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Original poster

PeterSpots · 31/07/2015 20:06

Rang & said not happy with the explanation & something has happened & has a medical reason so I want to know what & why this could happen. Haven't had a reply yet

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Footle · 31/07/2015 20:10

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pinkfrocks · 01/08/2015 10:46

You need to go back to the person who did this- ask for another appt- and discuss in detail. If there is no positive outcome then go back to your GP and ask to see someone else. You might like to join the COB forum and ask people there for advice. When you say you 'rang and was not happy with the explanation'- was that a conversation with the person who did this? Or was it their office / secretary?

You need an appt so you can speak to the person in a consultation and if necessary take your DH or a friend or relative so you won't be palmed off without getting some response.

Original poster

PeterSpots · 01/08/2015 11:15

The nurse called & said I should go back to the gynaecologist but I said I did not have a problem with feeling my bladder before the cystoscopy. She said she'd never heard of that happening & said she had to go back to clinic. I am really worried what's happening.

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pinkfrocks · 01/08/2015 11:31

You don't have to do what the nurse says. You have a right to another appt- you are covered by your insurance so make an appt with the guy you saw. Also go back to your GP so they are in the loop.

Mummytogoldie · 02/08/2015 00:20

I don't know what the procedure is that you had done but I had the same loss of feeling after my c section. It lasted about 9 months then gradually started to return, they think it was maybe something to do with the catheter maybe hitting a nerve x

Nyborg · 02/08/2015 00:26

Like a PP, I've also had this - it started after a difficult instrumental delivery. I didn't get the tingling, nagging sensation, just a sense of heaviness and then I'd realise I hadn't been for a while. It's fixing itself, slowly, and I had also put it down to some nerve damage, either from the instrumental delivery or just from the cathertisation. I hope you also find it heals, but I agree that you should flag it to someone medical.

pinkfrocks · 02/08/2015 10:03

peter- you need to go back to the person who carried out the procedure. They have a duty of care to you. It's not up to the nurse to make a decision or tell you what to do- she's only a nurse.
You had this privately, so what you ought to do now is phone up and make an appt to talk it over and discuss what might have happened. Having conversations with a nurse over the phone is not the answer. If you feel the dr you saw is unsympathetic and won't help, then can you ask for a referral to your GP to someone else? With private insurance you can see who you want, anywhere in the country as long as your GP writes a referral and your insurers will cover you.
I also suggest you post about this on the COB forum or phone a continence advisory service (NHS and in all areas) to ask for more advice.

Original poster

PeterSpots · 02/08/2015 11:03

Thank you. I had been leaving messages at the clinic for two weeks & they wouldn't contact me. The cystoscopy is a camera to look in your bladder. I am so worried now that a nerve has been damaged. There is no feeling there at all. I will call again on Monday. What did you do while you couldn't feel it. It took 2 1/2 weeks to stop hurting.

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pinkfrocks · 02/08/2015 11:25

Peter- I don't really understand why you can't get any answer from the dr.
Am I right- you had this done privately? If that's right, then you only need phone the consultant's secretary and ask to book an appt with him.
Even if the procedure was carried out in an NHS hospital, your point of contact (if private) is the consultant's secretary. Do you have those details?

You need to go back and ask him why you have this situation. If he won't help, go back to your GP and talk to them.

Original poster

PeterSpots · 02/08/2015 14:29

I'm calling again tomorrow. I have been ringing & leaving messages. I have been treated appallingly & when I did get a call I was supposed to feel grateful even though I was told it isn't their problem

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pinkfrocks · 02/08/2015 15:25

Sorry you have not have much success with them.

Who have you been ringing? (You haven't said)

Can I give you a bit of advice? when you say 'the clinic' what do you mean? Most consultants work from a private hospital and the way to make contact is via their secretary. Is this who you are talking to? If you are just calling the hospital switchboard or main number then your messages may not have been passed on to the right person.

You don't need to- and shouldn't- talk to a nurse or a secretary about your medical issues- it's confidential. What you need to do is make an appointment with the dr, so just say you want to make an appt with Mr so and so as soon as possible. That way you can't be fobbed off.

Original poster

PeterSpots · 03/08/2015 10:20

The secretary called me this morning to say the consultant is on extended holiday. I said are there not any other consultants? She said you have been discharged. I said for my pelvic pain but I have contacted you regarding not being able to feel my bladder if full/numb. She said the clinic nurse will call my doctor and explain. I said I want a medical explanation to why this has happened. Not just its not happened before. I still worth they will fob me off. I am going to drop a letter to gp to explain. I don't know if I can get an appointment today

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Original poster

PeterSpots · 03/08/2015 14:04

My GP called & I told him the situation & that I was being ignored. He said he would contact them & call me tomorrow. I just hope it's temporary.

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Footle · 03/08/2015 21:19

This reply has been deleted

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Mummytogoldie · 04/08/2015 01:26

I was just told to empty my bladder every couple of hours to prevent it getting to full and hopefully the feeling would come back, which it did eventually after 9 months :/ you have my sympathy it was a very strange sensation.

Original poster

PeterSpots · 04/08/2015 17:40

Hello. Got a call from my GP he confirmed they said it didn't have anything to do with them but they suggest I see someone in their group to do a test to see if their is nerve damage with electrodes. :( I felt a little sensation today so I am waiting to see if I can some more.

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