Blood in urine/uti symptoms but no infection

[Mindfullness4791]

I'm currently in a flare up, following a hysterectomy nearly 5 months ago for Fibroids and Adenomyosis. They now think I have Occult endometriosis, as my pelvic pain has flared up again since starting hrt. Ive been referred to a bsge centre.My bladder symptoms are awful I feel like I have a raging uti. Constant urgency and burning abdomen, along with lower stabbing, pelvic pain. I work in health care and I don't have a uti but it is constantly showing up as having blood in my urine. Is this connected?

Thank you 🙏 x

[Meandmyendo]

I’m so sorry to hear this. I have stage 4 endo and as I write this I am just coming off the worse bladder symptoms I’ve ever had. Pain in my bladder, urgency, constant frequency and the most horrific pain when urinating. Nothing has relived it (until my period is now ending) and no uti found only blood in my urine but have been on my period.

My endo has infiltrated my bladder wall and I’m waiting for a cystoscopy to look inside my bladder and tract to see the extent of it. They’ve said a part of my bladder will need to be removed. I’ve been told the Endo can cause painful bladder syndrome.

Push to be referred to an endo specialist if they suspect endo or at least a Urologist.

[Mindfullness4791 in reply to Meandmyendo]

Thank you. I'm so sorry to hear what a terrible time you have been having I really hope you don't have to wait too long to be seen 🙏Painful bladder, describes exactly how it feels 😪

[PeriMenoEndo]

Please look up Live UTI free and CUTIC - you may have a uti. Standard tests are totally inaccurate and give false negatives half of the time.

I really sympathise, it’s awful and very painful! I have been there and still have overactive bladder symptoms with adenomyosis.

Don’t take no for an answer, you know your own body! I’d recommend getting a test by focus labs or digital microbiology and also following an IC diet in case this could help with your pain levels.

Antihistamines are worth a go too, as well as garlic tea, aloe Vera juice, D Mannose, Uva ursi and all the good anti inflammatory foods.

Best of luck x

[Mindfullness4791 in reply to PeriMenoEndo]

Thank you so much for your advice and helpful suggestions 🙏 xx

[TallulaShark]

I have constant microscopic haematuria and urgency and feeling like I can't fully empty my bladder. I saw Urology and had a cystoscopy three years ago. Nothing found and still no endo diagnosis. 🙃

[Mindfullness4791 in reply to TallulaShark]

I feel for you. Although I had Adenomyosis, I still haven't had an official diagnosis of Endometriosis either. It is so frustrating. My symptoms are exactly the same as yours. It's a nightmare 😫 xx