Anyone had Bladder surgery?: Hi all Just... - Behçet's UK

Behçet's UK

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Anyone had Bladder surgery?

bailey23 profile image
16 Replies

Hi all

Just wondering if anyone on here has had problems with peeing. I am having a dilation of my urethra next week because I have problems urinating. I know some people self catherterise. The urologist thinks I may have scar tissue from ulcers in my urethra and thinks this dilation should help. I am rather nervous because of the area of surgery and I am having a General Anasthetic as they said it is a painful but quick procedure. Anyone else had success after this procedure?

Hugs to all

Angela

x

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16 Replies
devonshiredumpling profile image
devonshiredumpling

I've had exactly this procedure for exactly this reason on three occasions, Angela! Yes it works and in the immediate aftermath life is wonderful. None of that cystitis type pain and peeing is easy peasy (pun fully intended!). But the problem with Behcet's ulcers is that the bastards keep coming back, which means the scar tissue keeps returning, which mean your urethra will narrow again. Or at least mine did, like I say, three times.

Eventually we went to self catheterisation, not just to help me pee but because the very act of passing a catheter stretches the urethra! Da-da! Why didn't we think of that before. I'm sure I've said it out loud before - my bladder problems were my most feared and painful problem and, on my worst days, had me thinking of topping meself. Honestly.

I rarely get waterworks problems now. Yes I get urethral ulcers and they bleed and they hurt but they no longer get infected because I take prophylactic antibiotics and my urethra no longer becomes narrowed or stuck together.

The op is not pain-free but I would describe it as discomfort rather than pain for around 72 hours afterwards and you might see a small amount of blood in your urine. You will (I hope!) be given antibiotics to prevent infection. You will be pleased you had it done.

I do hope that helps a bit lovely

bailey23 profile image
bailey23 in reply to devonshiredumpling

Thank Di

I am fortuante that I do not get Genital Ulcers since being diagnosed and eventually getting the right medication, so hopefully this will solve my problems long term. Unfortunately my head and legs are covered in ulcers!!

Hugs

Angela

xx

You might find this interesting. healthunlocked.com/behcetsu...

Di is probably the best placed to answer your question

in reply to

Oo, Di was already replying before I uploaded my response! Further to that, my sister has this done every 6 months for different reasons and she is a bit sore afterwards, sometimes has a little blood, but nothing more than that.

devonshiredumpling profile image
devonshiredumpling in reply to

I knowz about bladderz I duz

in reply to devonshiredumpling

You do be do be do indeed

bailey23 profile image
bailey23 in reply to

Thanks!

Hugs

Angela

x

nurse_ratchet profile image
nurse_ratchet

I too have this peeing issue which is brushed off every time I mention it. I saw on the forum here one time someone mentioned a supplement called:D-mannose. I went to the health food store to inquire about it and they highly recommended the one version of it which also contains the cranberry extract. I've been taking it it for 3 days now and happy to report full steady streams so far;) It is used primarily to prevent UTI's in people who often get them. I noticed immediate effect and don't have to sit there trying to pee for minutes on end.

Best of luck to you and your procedure;)

andreafm profile image
andreafm in reply to nurse_ratchet

I have also used this and it is good stuff....also take cranberry capsules all the time and it seems to keep it at bay. I definitely notice the difference when I run out of them

bailey23 profile image
bailey23 in reply to nurse_ratchet

Thankyou!

Hugs

Angela x

MrsR_75 profile image
MrsR_75

I feel your pain!! I've had 2 dilations. I also had 8 years of Imipramine (due to chronic urethritis diagnosis) plus long and short term antibiotics.

When I got very ill in late 2012 and was flown to London I met Prof Catherine Nelson-Piercy. She cast doubt on the diagnosis. She suspects it was BD symptoms for all that time.

The dilations do work. It will sting when you pee after the op, but it will help.

I've started using Waterfall (which is d-mannose) to stop the urinary tract pain. Also- the gynae at Liverpool BD Centre recommeneded Dermol as a soap substitute. What a difference these 2 make!!

Best of luck to you x

bailey23 profile image
bailey23 in reply to MrsR_75

Thank you!

Hugs

Angela

x

Steamboat profile image
Steamboat

Hi Angela,

I have had stents put in when I was in urinary failure. I was too sick to notice whether I was having trouble peeing and had a catheter in any way. The stents did the job, but I do run into trouble each time. I am catheterized where I seem to have little control for a while after. It gets a bit scary, I agree.

Good luck with it all and the GA I will be thinking of you with fingers and toes crossed.

Felicity

devonshiredumpling profile image
devonshiredumpling

When's the big day, Angela? xx

bailey23 profile image
bailey23 in reply to devonshiredumpling

Just had date changed now on 6th Feb xx

devonshiredumpling profile image
devonshiredumpling in reply to bailey23

you must keep me in the loop and let me know how it goes

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