Catheter and endo?

[OllieF]

I am having bladder dynamics tomorrow where they insert a catheter to fill your bladder and I’m a bit worried about whether it will cause a flare up. (Urinary frequency and pain is one of my main endo symptoms). Does anyone else have experience of a catheter for this or in an operation etc and can tell me whether it hurts anymore than someone without endo might expect?

[TennisAM]

Hey, I've not had this done but I do get pain and frequency (most likely thanks to endo). Have you tried bladder training? Urology tried to put me on this medication (which didn't sound great) so I turned it down and got the frequency under control thanks to bladder training.

[OllieF in reply to TennisAM]

I’m a bit nervous about bladder training because it feels impossible and I’ve been in environments before when you had to hold things in and it didn’t seem to make. Also I’m worried that the cause might be endo in the bladder, which I think you need a cystoscopy for, and I’ll be told I have to try the bladder training before that can happen. But I guess I can only follow try each step and see! It’s good to know that it did help someone else and I’ll keep it in mind for my appointment.

[TennisAM in reply to OllieF]

Hey, I doubt you'll be told to try the training first. My urologists never suggested it. I took it upon myself. Its not that you keep it in, you use multiple techniques to stop the sensation for a bit longer each time. It's a slow process but it does work.

Do you get blood in your urine? Either seeing it in the bowel or via urine tests? If so they should do a cystoscopy. I would insist on a cystoscopy either way for peace of mind. You're the patient - it's your health and your body, always remember you're in charge, not the doctor. I'm firm with them about what what think is best and works for me every time. Have you said you think it's endo? xx

[OllieF in reply to TennisAM]

In the end I was told to try bladder testing, but I also explained about how I feel it gets worse around my period and is connected to my endo and they agreed to put me down for a cystoscopy. So I’ll be trying the bladder training in the meantime, thank you for your help xx

[TennisAM in reply to OllieF]

Glad you've got a cystoscopy booked. Hope it's not on the inside of your bladder. Please remember that doesn't rule out endo near or on the rest of your urinary system. x

[OllieF in reply to TennisAM]

Thank you, it’s really kind of you. I am keeping that in mind- I have had a laparoscopy recently where the doctor found endo on my ueterosacral ligament and he’s adamant it’s nowhere else and I can’t be seen by him about it again so I’m getting a second consultation next week where I will be sure to bring this up! xx

[TennisAM in reply to OllieF]

Hope it goes well x

[YellowMad]

Hi...I'm due to have this soon too...I've had a cystoscopy which came back negative for endometriosis in the bladder ..my bladder is still playing up though and medication hasn't worked...I'm currently self catheterizing once a day..after urodynamics will know what's going on hopefully...do let me know how it goes...

[OllieF in reply to YellowMad]

Hi, I’m actually now waiting for a cystoscopy, so we’ve had our investigations in the opposite order, but hopefully the bladder dynamics can help. I found it very painful having the catheter put in but the doctor and nurse were very kind and explained everything and it wasn’t too difficult after that. I’ve been advised to try bladder training so I’m going to see how that goes.