Endo on bladder. Ways to lessen bladder frequency?

[Lejay]

After my lap surgery 10 weeks ago i was diagnosed with endo. Among other places, endo was also found on my bladder. I was assured it was all removed and everything freed up. Although I had extensive surgery and other symptoms have subsided or gone, I am STILL having issues with bladder pain when it is full and bladder frequency. It is still making it difficult for me to function normally. Why is it still happening? Are there ways to ease it? I've cut out citrus and acidic food, caffeine and still not able to drink a lot of water because of this.

I don't know what the next move should be for me to fix this.

[luthien]

You may need a urology specialist (I think that's the one) to have a look at your urinary tract for scarring, any issues with the muscles and the bladder itself. I'm not sure how you go about this. It may be best to speak to your endo specialist (through their secretary) and book a check up with them (you usually have one at 2 weeks and 4 months post lap). At the check up you can discuss further treatment / concerns, I'd mention the urinary problem then and ask if they can refer you to a specialist. Quite often endo specialist have a list of other specialists they like to work with so they'll discuss your case with them if needed / requested. This will mean you'll see a urology (or similar) specialist whom knows your history and your endo specialist works closely with.

10 weeks is still quite early days, recovery from a lap with excision of endo is usually about 4 to 5 months, that'll give an idea of "normal" for you, hence why follow ups appointments often at 5 months.

Hopefully that gets you somewhere x

[Lejay in reply to luthien]

Thanks for the advice. I had my 1st post op check up at the end of the week of my lap op and my 2nd check the following week. I thought this was weird because on the paperwork it said the 2nd post op check was supposed to be 6 weeks post op I think? But my gyno said on the second post op check that everything felt fine and that I didn't need to make another appointment unless in the future my endo symptoms can back. I was confused by this especially since my surgery was more extensive.

So thats why I am hesistant to ring up my gyno because he did tell me I will take a bit longer than others to heal. I don't want to make nd pay for the appointment for nothing if that's what he will say to me.

I really hope it improves in the next month or so! Dealing with this bladder issue and also nerve pain issues is making my life very difficult.

[luthien]

Ah hadn't thought of Buscopan, it does help with reducing the contractions and thus feeling like needing to go. I use it for around my periods when I feel like my back end needs to go more but nothing happens (sorry if tmi) you get the idea - didn't think of it for the bladder even though it's the same muscle types!

[Lejay in reply to luthien]

That's interesting. It definitely gets worse around ovulation and period too, even after it was removed in my lap, so I wonder if buscapan will help. Do you know if it's okay to take with other medications like pain medications? I find that pain medication helps with minor cramps related to ovulation and period but not bladder pain, discomfort or contractions.

Thanks for the advice 🙂

[luthien in reply to Lejay]

You'd have to look up the leaflet for buscopan, it'll list what you can / cannot take with it. If you're really not sure then ask at a pharmacist

[Lizlemo]

I been told this week I have stage 4 endo on bladder (and bowel but that's a whole other story that I am sure I will be on here asking for advice on at some point). My endo consultant wasn't even sure the endo on the bladder is what is causing me to need a wee all the time! I've had a camera in the bladder but it didn't reveal anything significant.

I am on tolterodine which is supposed to do something to the signals from the brain to the bladder, I think it helps a bit. I also find that ibruprofen can also help a bit with the discomfort. The urge and discomfort get worse as I approach my period and is worst when I am on (especially when the cramps are bad).

Like you, I limit myself to one caffeinated coffee a day, and try to have only one fizzy drink a day, nothing too spicy food wise, nothing too acidic. I also try to bladder train by going every two hours, but I struggle with this as actually going to the loo doesn't help ease the urge (sometimes makes it worse) and I end up trying to hold on as long as possible. I also do not drink much at all during the day (around half a litre of water all day at work).

I don't have much in the way of remedies for you, but I do totally understand how you feel as it is exhausting and debilitating.

Hopefully your bladder is still recovering from the endo being removed and it heals up and your symptoms subside.

x

[Lejay in reply to Lizlemo]

I'm sorry to hear that. Did you have a laparoscopy yet or are you waiting for it?

Wow your experience is basically the same as mine. Mine gets worse during ovulation week and period. Yes even bladder training and emptying bladder can make it worse and/or make no difference for me either. It's horrible isn't it!

Its been controlling and limiting my lifestyle for 2 years now. Was hoping after I finally got diagnosed with endo from lap surgery I would feel an improvement by now. It's still controlling and limiting me even when I try not to let it. I've even tried brain tricks and deep breathing to calm it or last longer in between toilet visits but nothing helps.

I am also dealing with nerve pain after surgery, which my gyno warned me about. So I am dealing with both and when my nerve pain flares up bad then it also sets off my bladder more! It's like stupid painful merry-go-round 🙄

Thank you for the message, it's not good that we have to go through this but it's good to find others who understand too.

I hope it's still recovering too! Hope you get yours sorted as well! xoxo

[Lizlemo]

Bit of a long story - they thought I had a 5cm dermoid cyst on left ovary, and that might be pushing on my bladder. I had keyhole surgery to remove the ovary and fallopian tube, and they found out from that surgery that it was actually endo all over my ovary and I had endo on bladder and bowel as well. I have had a consultation with the top endo man in my area, and he now wants me to have a consultation with the bowel man as they really want to take out the bowel endo (even though I am not really getting much in the way of symptoms). The bowel surgery he described sounded awful so I am freaking out quite a lot about that.

I have heard that amitriptyline is good for nerve pain (I have had it after pulling a muscle in my chest and getting bad pains in my boob and it did help, but have no idea if works on endo or bladder.)

Part of me feels lucky I had the ovary removed and they found the endo from that, and part of me wishes I'd left it all alone and just put up with the constant need for a wee!

I do sometimes worry I will end up with a kidney infection as how would I even know I had a UTI to start with?

I do hope you start to feel better soon,

XX