bladder/urinary tract endo

[PopcornPJ]

Hi all,

has anyone got confirmed bladder endometriosis? I'm interested to hear about symptoms and whether you saw your gynaecologist or/and a urologist. Thanks!

[Hooplove00]

bladder endo here! Confirmed in May from lap. I also suffer from IC. I get ongoing UTI symptoms, urgency, and pelvic pain/spasms. Reoccurring UTI’s as well.I see an Urogyno and have been getting bladder installations weekly. Might have to get referred to another specialist as I’m not seeing much improvement.

[PopcornPJ in reply to Hooplove00]

Thank you for your reply. I hope you get the right treatment soon.

[Sabrinacolada]

Hi,

Confirmed I don't have bladder endo recently but stage 4 and had confirmed endo on both ureters ( tubes going from kidney to bladder). Symptoms even before diagnosis were urinary urgency, sometimes urinating blood, pain on urination and an odd pressing feeling on my bladder ( maybe from the endometrioma in hindsite). Which had led to many dipsticks, trial treat for utis ( usually no bacteria on samples just blood). It got that bad I just had dipsticks at home to check myself. The signs of urinary tract / bladder endo are simular to interstitial cystitis/ uti etc.

I found always worse at menses but also at ovulation. I found tracking all symptoms ( in my case also bowel signs, pain, fatigue etc) really helped to show a cyclical pattern which is handy to show specialists.

My inital diagnostic lap I was told bladder is fine no bladder endo etc but my symptoms suggested to me something wasn't right. It wasn't until the endo specialist reviewed the images from lap he said could see it on ureters and one had a nodule. I had asked nhs to be reffered to a urinary specialist before my mdt op as he had advised but nothing happened. Long story short my MDT op was private so had a colorectal and urogenital surgeon too. They did cystoscopy ( looking at the bladder via an endoscope) , ureteroscopy, while I was having the op and they used temporary stents to protect the ureters while they removed the lesions.

Sept 23 I had the op and I no longer have the cystitis type signs so far. I also used to get an odd burning feeling but that has gone.

So I just wanted to say even if they say bladder is clear make sure you ask re the ureters. These tubes are small so won't normally show on standard imaging unless dialated from a blockage or hydronephrosis ( tube gets blocked and kidney fills with fluid). The endo specialist says many woman are often misdiagnosed with urinary tract infections or interstitial cystitis etc. If you have had a diagnostic lap with images may be handy if can get and endo specialist to see it.

❤ Sabrina x

[PopcornPJ in reply to Sabrinacolada]

Thank you! Dipstick central currently here, too and about the 5th lot of antibiotics in 7/8 months. Hopefully some imaging soon. Thank you for sharing your experience.

[Sabrinacolada in reply to PopcornPJ]

Aw bless you. I remember how awful it was having to try and live day to day with symptoms. Yes I dread to think how many antibiotics I was also prescribed prior too, try and look for a good probiotic if you havent already to try and prevent it disrupting your gut biome. Hope you get some answers and relief soon. All the best xx

[Bettyheslop]

Hi,I would like to echo what Sabrina is saying. If you feel like you have bladder symptoms, even if you don't get it confirmed, please consider/get specialist to consider your ureters.

I have long known I have severe endometriosis but never expected it to get so bad. I have bladder symptoms, just feels irritated and bruised and constantly need a wee. You know that feeling when you have held a wee too long then even after you go it aches. I have that all the time. It's not actually confirmed in/on bladder though I highly suspect. But was confirmed on my right ureta after I started being unwell and got hydronephrosis, basically my kidney swelled to the size of a melon and I had to have it removed.

This was Nov last year and I've since sound out my remaining kidney has mild hydronephrosis due to something constricting ureta which everyone thinks is endometriosis again. To answer your question yes you need to see urology and gynaecologist. I bounce between them having Ct scans, ultrasound, surgeries, cameras, flow rate tests.

If you are able to keep an eye on your blood pressure then do as that is a sign your kidneys may be effected if its high. Which my GP basically ignored and just gave me tablets.

Please don't let my story scare you as it is rare to get in such a mess but I wish I had have known more as I would have pushed for help faster.

Xx

[PopcornPJ in reply to Bettyheslop]

I'm so sorry you had to go through all that and thank you for sharing. Thanks for the BP tip, too.

[Liz84 in reply to Bettyheslop]

Hi Betty, thanks for sharing! I found what you said about an irritated, bruised bladder sensation and the sensation your bladder is full when you know it isn't, rings very true for me too. I'm awaiting further investigation into my bladder endo, I was just wondering in the meantime have you found anything helpful to take the edge off the urgency e.g. Heat, cold, pelvic floor exercises? Thank you 🙂

[Bettyheslop in reply to Liz84]

I'm sorry sorry, I don't know how I missed your reply. No I never found anything to help bladder feel better. Its permanently irritated, particularly at night time.

I really hope you found an answer xx