Bladder pain. Full feeling.: Hello, Does... - Endometriosis UK

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Bladder pain. Full feeling.

Amelie8 profile image
9 Replies

Hello,

Does anyone else experience bladder pain? Especially if they have held their urine for too long and the pain has lasted over a week. Bladder feels full all the time but its not.

Had my 4th surgery in 2020 for endometriosis excursion surgery. Was throughout pelvis and on bowel so it could be scar tissue.

Any suggestions to soothe it would be appreciated.

Thank you 💞

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Amelie8 profile image
Amelie8
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9 Replies

I find nortrip very helpful for bladder pain.

Amelie8 profile image
Amelie8 in reply to

Do you mean nortriptyline? X

in reply toAmelie8

yes that’s the one. I found it really helped and didn’t make me too tired. Obviously rule out any infections by ensuring the drs send off a sample for testing. Dip sticks by the GP are not reliable enough as an indicator for infections. The clinic must check it. Also d mannose for everyday use to keep things clear.

Cotton_Candy profile image
Cotton_Candy

Hi, I went through the same thing and now it's gotten so bad I have to have a catheter and I need surgery on my bladder.

It may be helpful to get a Urologists to check you out, they have been so helpful for me.

In the meantime you could try Buscupan because its a "smooth muscle" relaxant and even tho it says IBS it also helps the bladder because smooth muscles are located in both bowel and bladder... So it should help your bladder as well, it helps with me with the discomfort I go through as well as Gabapentin Because I also have nerve pain in my bladder.

Hope this helps 💛

Amelie8 profile image
Amelie8 in reply toCotton_Candy

Thank you. Sorry to hear you have to have a catheter. Hope your surgery is soon. Thats intresting about buscupan. I will try that. I have seen a urologist and he said everything was fine, this was before my last surgery. X

Cotton_Candy profile image
Cotton_Candy in reply toAmelie8

Thank you. I was also told everything was fine with my bladder as well, it took years and the right tests before they actually found the problem.

Blood Tests, cystoscopy, ultrasound, urine tests, surgery looking on the outside of my bladder; all of those teats showed that I was perfectly fine. It wasn't until I did a Fluoroscopy Urodynamics test that they were able to find the problem. Maybe you could ask about it, they literally hook your bladder up to a machine and they understand everything that happens when your bladder fills up and when you pee, it's very impressive. Hope this info helps.

Stitchrunner1 profile image
Stitchrunner1

Hi, Your issue may not be related to endo. It may be interstitial bladder syndrome or something else related to your bladder. I had endo and a horrible feeling of having a full bladder and general soreness in my pelvis. It felt to me like cystitis with urgency to pee. Go to the NHS website and have a look at interstitial bladder syndrome or painful bladder syndrome as it is sometimes called. Interstitial bladder may be hidden behind endo and being overlooked. Interstitial bladder is quite common in women who have had catheter for any reason. It is a very easily treated problem once you know about it. It is not widely known yet although research has begun. My advise , only from my experience, is to take cystitis powders from time to time when it gets really annoying. It stops the acid in the bladder from irritating to much.

Amelie8 profile image
Amelie8 in reply toStitchrunner1

Thank you very much! Like you said there doesnt seem to be much information about it. But it sounds about right. The pain after having a wee at times can linger.

X

Stitchrunner1 profile image
Stitchrunner1

Yes it does. It was described to me by the nurse at the clinic as cystitis without the infection. What is actually is, is damage to the lining of the bladder. There is evidence that the bladder lining either scares from catheter use or from infection or even from reasons not understood. The acid in the urine burns the flesh where the lining is torn or it burns the scaring. If the damage is in your urethra it will burn when you wee. It can be worse after sex. It is well worth your while going to your doctor and asking about it. If it is painful bladder it is treated with Cimetidine as first line and if that doesn't do it they can put a soothing gel into your bladder. It would be well worth your while to check. I have it. It has made me able to walk and go out where as I used to be welded to the toilet seat.

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