Bladder infections, kidney stones and Endometriosis

[AliceVictoria]

Hi all,

I am wondering if anyone has had a similar experience - in the last 5 weeks I have had three bladder infections then last week wound up in hospital with kidney stones and renal colic (?)

My last endometriosis laparoscopy back in August 2018 led to removal of endo from my bladder and the removal of a surprise ovarian cyst they had missed. I was wondering if anyone has had endo on their bladder and experienced similar bladder/kidney problems.

I ended up back at the hospital on their recommendation because the pain didn't subside but my blood and urine are clear so now they think it might be the endometriosis inflamed. I feel like everytime it is 'probably' just endo pain it feels like the end of the road with doctors and a kind of pitying well that's your life so go away and deal with it.

I have taken medication in the past and have been on the pill but now we are trying to have a baby so the pill is not an option.

Hoping (but not hoping for your sakes) that someone has had a similar experience and can shed some light on this?

Thanks!

[Catness]

Hey,

I’m sorry to hear how much you are suffering have you heard of interstitial cystitis before? It’s where you bladder is chronically inflamed but if you were to present a urine sample it will most likely come back clear as it’s not inflamed from a current infection. I have this and endo on the bladder / not fun!

I can massively improve my IC/ bladder symptoms by cutting out trigger foods - acidic fruits and veg/ juices like pineapple and tomato, alcohol, caffeine, chocolate and fizzy drinks, and I drink a RIDICULOUS amount of water but it does help. Best advice I would give is to try and find a consultant who specialises in Endometriosis and bladder issues - I know of a great consultant in the West Midlands is that’s anywhere near you? 😊 xxx

[AliceVictoria in reply to Catness]

Thank you so much and sorry you're suffering too! I am going to look into it! Unfortunately I now live in Mallorca as a teacher which is what makes this whole process even harder. Feel like any issue is a lesson in me teaching them about endo here so I end up back and forth between here and my old consultant in London! X

[Vickysponge357]

I haven’t been diagnosed yet but I strongly suspect that I have endo on my bladder or possibly interstitial cystitis.

I have been experience lower left abdo pain and pain in my left kidney for around 5 months now, in those 5 months I have had on and off again urinary symptoms (no pain, but frequent need to go and feeling like I have to really bare down and try to empty my bladder) and have had blood present in my urine dips all the way through. dr initially thought it was a kidney infection, and then kidney stones and then stopped investigation my renal system after a CT scan showed it was clear!

In the last month or so I have been having this strange sensation in my kidney, almost like a muscle spasm but not painful, just this weird squeezing sensation!

GP has recently sent a referral to urology to investigate further so waiting for that appointment aswell as my first gynaecology appointment.

My post doesn’t really help shed any light. But you aren’t alone!

[AliceVictoria in reply to Vickysponge357]

I'm so sorry you're going through it all too. I've heard more recently about endo diagnosis through initial urology investigations so I hope you get a diagnosis soon because I know the pain all too well and mixed with bladder and kidney pain it is a nightmare! Hope you find some answers soon and thank you for reaching out!