Anyone with confirmed bladder endo? I’m a... - Endometriosis UK

Endometriosis UK

72,908 members53,265 posts

Anyone with confirmed bladder endo? I’m after advice!

emmaquinny profile image
8 Replies

I’m on the waiting list for a lap, so not diagnosed officially. I’ve had pain on urinating in my bad weeks for a while, and pain with a full bladder. So, I don’t normally drink large quantities of any fluid at a time, but as it was football afternoon (well done men!) I had two pints of weak rhubarb gin and lemonade, in rather quick succession. I am paying for it. I had three lengthy we’d each one becoming more painful and I now feel like my bladder and uterus are trying to tear themselves from my body-I’m sat on the loo in agony. Does anyone else have this problem? Are you diagnosed with endo on the bladder? It may also be worth a mention I have an anteverted uterus which I believe means tipped forward.

Thanks as always for your help ladies xxx

Written by
emmaquinny profile image
emmaquinny
To view profiles and participate in discussions please or .
Read more about...
8 Replies
KM1986 profile image
KM1986

Hi there. I was diagnosed with endo on my bladder a few years ago. It's not pleasant at all! A lot of it for me was like having a constant urine infection. So urgency to urinate, pain when urinating, pain when bladder is full and also when it's just emptied. Feeling like it's full when it's not, and also feeling quite hot and sick when the bladder is full. I get regular cystoscopies to check the inside of the bladder. I've Been on the decapeptyl injection for a couple of years and it's helped massively. I had about 6 endo spots on the inside and it's now down to one or two specs. Hope this helps xxxx

emmaquinny profile image
emmaquinny in reply toKM1986

Thanks, I definitely share a great deal of your symptoms 🤦🏼‍♀️ I guess I will just have to wait to see what they find, but it’s good to have some knowledge. And I definitely will go back to drinking little and often and not a lot quickly 😂 of anything. Good luck with your journey xx 💛

F10NA2 profile image
F10NA2

I haven’t been diagnosed with it yet but I have a feeling it’s a possibility as I have all the symptoms, I’m currently waiting for consultants to discuss my MRI results in a meeting and then hopefully I’ll have more answers, currently all I know is that I have endo of uterus and vowel, possibly andenomyosis and bicornuate uterus!!

The joys of being a woman 🙄 xx

emmaquinny profile image
emmaquinny

Thanks, it’s funny how different hospitals/drs do things differently, I’m yet to have an MRI but I’d have thought that would be done before a lap to give them a starting point 🤷🏼‍♀️ it is awful what we have to go through. Good luck with your journey I hope you get some answers 💛

F10NA2 profile image
F10NA2 in reply toemmaquinny

It is very strange, I wasted 4 years with a gynaecologist who was absolute rubbish so I went to my GP and asked if I could be referred to a specialist hospital to see someone who knew how to deal with gynae pain, I was referred to the Liverpool women’s and within 3 months I’d seen a endometriosis nurse, a consultant, had an ultrasound and and MRI scan!! They have been amazing!! Xxx

emmaquinny profile image
emmaquinny in reply toF10NA2

That is good to hear. I too started off with a general gyne who clearly did not know a great deal about endo and was going to be doing my lap. (He didn’t think I had it as he could move my uterus 🤦🏼‍♀️ and he just wasn’t listening to me) I was worried he was going in blind and I’d have to end up going again to an endo specialist, so I phoned the secretaries and battled to be transferred over. The specialist said he strongly suspects severe endo and that I would have been transferred over to him for another lap anyway. It was the strong, experienced ladies on this site that set me on the right path and gave me the confidence to say no, I take control of my care!

Bdgjdjd profile image
Bdgjdjd

I didn’t get dignosed for it

But i am absolutely have it

The main symptom that help me get dignosed with endometriosis they were my bledder and bowel issues

I don’t deink alot of water and always feel i want to pee

Sometimes peeing becomes impossible for me

I remember i went to emergency room in order to pee i was crying with really big tommy they suggested Urinary catheterization

When i pee , i pee like drops

But the terrible things how endo effected my bowel

Btw i have these pains all the time 27/4 it is not related with my period

The doctor suggested me to get pregnant quickly it is the solution for my problems but i didn’t get married

Did you try to get pregnant ?!

emmaquinny profile image
emmaquinny

Not recently, I have a child who is 11 and no plans for anymore!

Not what you're looking for?

You may also like...

bladder endo

Hi, I've recently been diagnosed with endometriosis and had my first laparoscopy on Tuesday. They...
Harper666 profile image

Do I have IC? ( interstitial cystitis ) or Endo on my bladder.

Hello I was wondering if I had IC. So here's what has been happening to me. A few months ago when I...

Bladder endo and bowel adhesions

Hi all, This is my first post (sorry it’s a long one!) I am newly diagnosed… 30th December 2021 I...
Ccn2018 profile image

Endo on the bladder

Hi guys; I was diagnosed with stage 2 Endometriosis last year and had a laparoscopy to remove it...
jenni_sofia profile image

Endo inside bladder

Hello all, I have another question about this mass I have in my bladder, which my urologust thinks...

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.