Anyone have Endo in their bladder? - Endometriosis UK

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Anyone have Endo in their bladder?

WalkingGirl21 profile image
9 Replies

Still struggling the low pelvic pain since my surgery in November. I'm back to backing my pill for 3 months and taking paracetamol hourly/daily until I see the consultant again in 4 months.

The paracetamol routine has helped the pelvic pain but there's always a dullness and sort of a butter fly sensation where my bladder is (I think, just lower then the 'generic' pelvic area) I feel at times that I just really need to wee and do pass a good amount of wee when I go to the toilet. I can get sharp pains in the area too and the dullness can be quiet intense.

I'm just wondering if anyone has experienced this who has endo in their bladder?

Thanks in advance 💛

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WalkingGirl21
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laurenadc profile image
laurenadc

Hi, yes I have endo on my bladder too.

I know exactly what you mean about constant painkillers but still a dullness of pain - I’m exactly the same. Constantly feel like I need the toilet, even if I’ve literally just been, and it’s so painful when I do go.

I had a camera into my bladder in December which found my endo had grown from the outer wall right through into my bladder. On a waitlist for an op to remove it, but no idea when it will be!

WalkingGirl21 profile image
WalkingGirl21 in reply to laurenadc

Hi Lauren, thank you for responding 😊

I believe I had endo between my bladder and womb which was removed, my consultant (he's been amazing the whole time and I cannot fault the treatment I have received) thinks it may be a bowel issue but I just have the feeling something isn't right and if there's a possibly its grown into my bladder. There's always some sensation there, and if it's not exactly 'painful' it is a sensation wheres there's days I could just stay curled up in bed.

I went for a walk yesterday as I do at least 1/2 times a week and for the first time since surgery I had some sharp pains in that lower pelvic area.

As I said, I just have this feeling its spread more then what he can see as he believes he's removed all the endo. He will consider another laparoscopy if the pill plan doesn't work and any alternatives he may have.

I'm wondering if it's work requesting an MRI from my GP while I'm going through this 4 months as there will be a waiting list for them and thinking is it worth trying to get onto it now.

Thank you for reassuring me. It sounds you experience a lot more intense pain then myself (I found your previous post) but it's just reassuring to know its not all in my head and there is a chance, if only small, my 'something isn't right' feeling could be right. X x

laurenadc profile image
laurenadc in reply to WalkingGirl21

Yes definitely request an MRI, that’s how I got mine confirmed!I’d paid privately for a laparoscopy but wasn’t aware it was on my bladder, my doctor then found it but said he couldn’t touch it without knowing how bad it was. He was the one who told me to go for an MRI, as he said he wouldn’t do it privately for me as the costs would be astronomical.

It took me a few months for the MRI on the nhs, but that was how it was confirmed. Then the camera into the bladder found the extent of it.

Fingers crossed for you your symptoms don’t get any worse, I’ve had this issue with my bladder for years (prior to any endo diagnosis) but it’s only the last few months it’s got a lot worse. So I’d definitely push for the MRI if you suspect. I asked my GP to refer me to an endometriosis specialist, and once I spoke to them they were quite happy to arrange the MRI xx

WalkingGirl21 profile image
WalkingGirl21 in reply to laurenadc

This is really good information thank you so much! I've never notice this part as much before, it's as if the surgery I had has aggravated it. But who knows, it could be something completely unrelated but I'm going to contact my gp for an MRI thanks to your imput. I hope you get your surgery soon and it relieves you of your pain. Will be thinking of you as time goes by x

Clara12 profile image
Clara12

I’ve got bladder endo and can suffer with the pains you describe too. Mostly I’ll get an overwhelming urge to empty my bladder immediately and no matter how often I go will always manage to pass a really large quantity of wee as if my bladder has been completely full up each time

WalkingGirl21 profile image
WalkingGirl21 in reply to Clara12

Hi Clara, how was this diagnosed? I'm just relieved that others have experienced what I have. I spoke to a nurse practitioner at the end of last week who said it could take 6-12 months for everything to settle from my laparoscopy and that it wouldn't be the GP who referred me for an MRI, I'd have to do it through my gynaecology consultant x

Clara12 profile image
Clara12

Hi, it was via laparoscopic surgery. I haven’t had it all excised as it requires a specialist surgeon to do. Hopefully having surgery but due to covid has been delayed

WalkingGirl21 profile image
WalkingGirl21 in reply to Clara12

Wow okay, I'm finding out about the specialists. I hope you get called in soon and have successful surgery x

Clara12 profile image
Clara12

Thank you. Hope you get answers and relief soon too

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