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

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

emmaquinny
emmaquinny

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

8 Replies
oldestnewest

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
emmaquinny
in reply to KM1986

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 💛

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

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
F10NA2
in reply to emmaquinny

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
emmaquinny
in reply to F10NA2

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!

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 ?!

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

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