Endo inside bladder

Hello all,

I have another question about this mass I have in my bladder, which my urologust thinks is endo.

For those of you who have that, is it possible that it looked so big (2-cm) because when I had the cystoscopy I actually had my periods (yes gross)? If he had look at another time of the month, it wouldn't have looked so bad?

Just trying to convince myself that endo inside a bladder can look like a mass and is not necessarily a tumour!

What's your experience with endo inside bladder? I only have pain, urgency and frequency during and after my periods, not the rest of the month...

[Stellauk]

I had endometriosis in my bladder. I think it is far more common to have endometriosis than cancer in the bladder. I am sure the consultant has seen many cases before and would have a rough idea whether something is cancer or not. As cancerous growth will have very different appearance. Ultimately you can only confirm the findings with pathology on the day.

Try not to dwell too much on the prospects of cancer as you could get yourself all worked up for nothing. Try to concentrate on getting yourself healthy and fit for the upcoming operation.

All the best.

[Hidden in reply to Stellauk]

Thank you Stella for your message. Yes, I think the worse is going to happen because I seem to attract bad luck, or so I feel! I try to keep positive when I remember the consultant saying that it doesn't look like a tumour, more like endo...

[Stellauk in reply to Hidden]

Your symptoms are very similar to mine. Sounds like endometriosis to me! If it is cancer it will hurt all the time not period related. Hope this helps!

[Hidden in reply to Stellauk]

How old are you if I may ask? When I asked the consultant if it was common to see this at 37, he said not at all - I think that's what worried me the most as it means that his experience may not be that extensive?

I'm 'reassured' to read that endo can indeed go through organs and grow big - although I understand that that may not be a positive diagnosis, I feel I could emotionally manage endo better than I would cancer!! Thanks for taking the time to reply 👍👍

Hope you are OK now, is it recurrent?

[Hidden in reply to Stellauk]

Hi Stellauk,

I've just realised something - while lying in bed t hinking about my operation in 4 days - if it was endo, wouldn't a 2-cm endo growth bleed every month? Wouldn't I see it? I'm so confused ! 😩

[Stellauk]

I had my surgery when I was similar age to you. I had noticed problems some years ago but put it off for a while! The operation is a complete success and I am doing really well. Hope it all works out for you.

[Hidden in reply to Stellauk]

Thank you 👍 🤞 🤞🤞🤞

[Hidden in reply to Stellauk]

Hi Stellauk, can I ask Was it a cystoscopy under general anaesthetic ? How painful/bleeding was it after that? (Need to work out time off work and child care...) thanks

[Stellauk in reply to Hidden]

I had cystoscopy with kidney stents removal under LA that did not hurt was over in 10 minutes.

If you having bits of bladder removed etc. Then you may need catheter afterwards. No pain just inconvenience for me. I had 4 weeks off but have to have major operation and stayed at hospital for three nights. You could email the consultant 's PA for time off work. Normally I would take the time they suggested plus 1 week.

All the best.

[Hidden in reply to Stellauk]

Hi, coming back to you about time off!

Surgery was fine and not painful, just the catheter was awful but I only had it for 12h then I was sent home.

I'm now 6 days post op and feel like I am milking it as I don't have any pain at all.

No one gave me a note about time off work, everywhere I look on NHS sites, it says 2weeks off as scabs and blood can come off after 10-14 days.

Any advice? (I was going to ask for a pay rise at my work and feel like it's not going to go down well, especially that I have also asked for part home-based; but I don't want to end up tearing something inside!)

Thanks

[Cath77]

I had endo removed from inside my bladder a couple of years ago (I had part of my bladder removed too as it was fused with other organs). My symptoms sound similar to yours - they would flair up for a couple of weeks after my period and then go away again. My operation was tough but has been successful. I'm having more surgery later this Summer to remove endo from my bowel. Hope this helps.

[Hidden in reply to Cath77]

Thank you Cath. Hope the next surgery will be as successful 👍

[Hidden in reply to Cath77]

Hi Cath77,

How was your surgery? Hope you are well 🎗

Things are moving on my side, bladder biopsy revealed endo not cancer so I Finally got referred to a BSGE centre where they have Dx me with extensive infiltrating bladder endo on the TVUS (how the hell the 'normal sonographer' missed a 5cm endo nodule piercing my bladder is beyond words).

So it sounds like I'm gonna have bits of my bladder removed too!! Can't wait to have relief from bladder pain!!!!

Hope all is well for you

[Cath77]

Thanks for the message and pleased you've had a diagnosis. I hope your surgery sorts out your bladder symptoms once and for all. I'm two weeks into recovery from my bowel surgery. Most endo has been removed apart from a small section infiltrating my bowel lining, which would have meant opening and resectioning my bowel. I'm hoping this will help in the long term, although I experienced the same symptoms and pains as usual, post period straight after my surgery.

Keep in touch and let me know how you get on and if I can help at all.

Good luck x