reoccurring UTIs symptom of endo?

[LDee2022]

I have recentlybeen diagnosed endometriosis, however for years I have being getting reoccurring UTIs. I feel like I'm constantly worrying about getting them as I feel so unwell when I do. I am wondering if this is a symptom of my endo, does anybody else get them too?



[BloomingMarvellous]

Hi , UTI’s were my constant bane and really my red flag for the endo ( not spotted). Roll on many, many years and far too many courses of antibiotics has caused untold complications for overall health and gut wellbeing . Dealing with the endo with good surgery, pelvic physio, Omega 3 and rebuilding gut flora has been key, as was dealing with testosterone deficiency. Recent research shows a much higher proportion of Klebesiella bacteria population in womens’s pelvic fluids with endo and this can be the source of many UTI’s. I found a liquid probiotic course for 12 weeks and moving off lactose rich products essential as klebiesiella is notorious for increasing intolerance of lactose. Instead of multiple UTI bouts in a year this year it’s been one only and that was post surgery.

[Ishallwearmidnight in reply to BloomingMarvellous]

That's really useful to know, re the Klebsiella - I've had UTIs diagnosed every time I've gone for a pre-travel checkup in the last three years, also have IBS and was recently diagnosed with lactose intolerance. I'm now being investigated for endo, only because the pelvic physio was the first person who actually put together my period problems, gastro and urinary symptoms. I have been so sure they are connected but GPs have typically insisted on me telling them about one symptom at a time and then dealing with each one separately (often with completely separate referrals) instead of looking at the whole syndrome.

[BloomingMarvellous in reply to Ishallwearmidnight]

Sounds worth exploring. I’ve found the probiotics and lactose reduction really helpful. All my muscles ached constantly until I sorted it and my small intestine was plain sore all the time.

That’s so common - they miss the big picture by dealing with the individual presenting symptoms as self contained problems only. I understand how& why they do and being too busy and being passed from one GP to another doesn’t help as there’s no flagging up of this patient is back again with same constellation of issues. It’s why the symptom diary is key - putting it in black and white challenges and asks to cast the options wider in diagnosis. One in 10 of their female patients isn’t a horse but a zebra - am sure if they did a trawl through notes they’d identify a whole bunch.

[LDee2022 in reply to BloomingMarvellous]

Thank you so much for this, it's definitely something I will look into.

[AtomicHair]

Hi LDee2022,I get them all the time. For me it's because my bladder doesn't empty properly. I have stage 4 and my bladder is pulled out of shape so makes emptying hard, which causes a uti in the bladder.

I'm under a specialist endo centre and they are always telling me to make sure it get my urine tested regularly. Because I don't get the burning sensation or anything like that, I just have an increase in pain which I often just put down to an endo flare up, my infections end up quite severe. I should really know better by now!!!

Hope you find an answer soon.

[BloomingMarvellous in reply to AtomicHair]

Just the same, often nothing in urine then ghastly sudden cloud burst with blood etc. I found specialist pelvic physio, altering the peeing position and drinking regular water ( minimum of 3 litres per day - was told 4 but simply can’t manage that 😂) has knocked the compression issue on the head . I didn’t believe that the irritation/ false signalling would be relived by upping my intake from 2 litres but have been proved wrong. Sleep through the night and much easier frequencies.

[LDee2022]

I'm so sorry you both suffer like this. Its very comforting to know that there are other women in a similar position. I have become so anxious about developing UTIs and it is starting to really impact on my life. Thank you both for replying, this has really helped

[Heartof3]

Oh it's awful isn't it 😖 Uti & ibs with period pains is one of my biggest symptoms with my Adenomyosis.

X

[LDee2022]

Oh that's horrible! I feel like I can deal with endo pain but UTIs ate horrible

[Heartof3 in reply to LDee2022]

I hear u. They litrally wipe u out x

[CryBaby91]

Diagnosed with endo last week. Recurrent UTIs and even spreading to kidney infections was the absolute bain of my life for many many years. It was something that actually convinved doctors that I had lupus and that it was attacking my kidneys. They found blood in my urine often (4 days after my period ended) but when checking my kidney and bladder with scans they never found any damage. Took so so so long to make the endo connection!

[LDee2022 in reply to CryBaby91]

I'm so sorry you have to deal with this! I hope now you have your diagnosis you can start to get some treatment x

[CryBaby91 in reply to LDee2022]

Thank you they did ablation a few weeks ago during my diagnostic lap, and freed my bowel that was stuck to my anterior wall. Apparently that was because of my earlier cesarean section, endo loves a cesarean. I'm also on GNRH injections to try prevent anything from growing back, but that's causing a host of symptoms too. I don't know if there is a truly effective treatment out there tbh, not one that doesn't cause a load of problems itself. Just trying to tackle it from a few angles now and get a better quality of life xxx

[LDee2022 in reply to CryBaby91]

Oh my goodness, you're going through so much! Wishing you lots of luck 💗