Hi folks,
Just wondering if anyone has air of suspected UTIs or the feeling of a UTI with there Endo?
I get quite often the feeling of soreness and sensitivity you have with a UTI but often urinalysis strips show negative or trace. Is this a normal symptom of Endo or is it even a symptom?
It’s so frustrating as the GPs don’t do anything and just constantly screen for STIs which is always negative. Very depressing and affects my daily life, exercise capability and sex life 
Hi, sorry to hear drs arent being very helpful. I have stage 4 endo and before ovulation and my period i get terrible uti symptoms but like you negative test strips.
I have spoken to my consultant about it and she said it is definitely to do with my endo.
Maybe keep a diary of where you are in your cycle and when it occurs and see if its linked?
I always keep a diary of all my symptoms and find its so helpful to refer back to when i have appointments x
hi there, thanks for replying and I’m sorry you have this high level of uncomfort too!
But it is nice to know I’m not ‘imagining it’ and others feel like this.
What do you do for pain management during this times?
I will defo start a diary to try and identify patterns
Hi, for the pain i just use normal otc painkillers to take the edge off and always make sure im close to a toilet on those days. Its totally rubbish that we have to live like this. Hope you can get some answers soon x
I've had this ongoing for years, I was given antibiotics 6 times in 3 months with no infection in my urine. Only then did they think it's endo related and said I need to see a urologists. 2 years later no urology appointment yet one of my GPs thought it might be endo in my urinary tract which has caused Interstitial cystitis. I had a hysterectomy last year and initially I was fine and when on zoladex I had no symptoms. Now on HRT and symptoms have started again. Appointment next week with GP for another urology appointment. I am peeing 20 times a day and throughout the night, bladder leaking and pain....they tried me on a medication but I didn't get on with it so back on pain killers which is not what I wanted....but hopefully things will start moving forward again soon... hope you get sorted too...endo sucks x
it’s shocking we are left to suffer jaut like you have been and given antibiotics like smarties that doesn’t always help. Then I feel like they don’t listen when you keep coming back with the same issues. I don’t know how many times they say oh are you sexually active amd proceed to screen for all the STIs but always clear.
Hope your urology app goes well! Please let us know how it goes x
I would ask your GP to arrange blood tests for renal function and also check your blood pressure. I also have had UTI's / feeling of UTI's and it turned out that my left kidney was completely blocked due to endometriosis squashing my pipes. My bloods revealed that my renal function had dramatically declined, so I had an ultrasound that showed a grossly enlarged kidney due to a blockage, which was what was giving me the UTI symptoms and high blood pressure. I had to have an emergency stent put into my kidney to drain it. Your symptoms could be unrelated, but it is worth checking before it gets to this stage.
that’s terrible you had that! Thanks for the reply I definitely will mention to my GP is it’s very uncomfortable and sore. Not to mention effects your daily life!
Did you have back and side pain with this too? Or was your uti urine tests negative?
I had left back and hip pain. And pain to the left side of my pubic bone. Initially I didn't have typical UTI symptoms (or I might just not have noticed because I was in so much other pain). I found out I had a UTI during a hospital check. After it was treated with antibiotics, I have felt more UTI symptoms, but mostly the tests come back normal , except for trace blood in the urine. But when I had it tested again at the hospital rather than GP, it showed positive on all counters for UTI. I'm not sure if their tests are more sensitive than the one the GP uses maybe.
Yeh might be.. just never ending, very down about the whole thing. Terrible to say but I’ve no confidence in GPs
I've not really found it much better in the hospitals either ☹️. It is a constant battle with every NHS provider. But you have to keep pushing for it because they will try to dismiss you. It is extremely emotionally draining. I have often scream cried with frustration trying to get just basic care.
Hi there!
I was diagnosed with adenomyosis and endometriosis last November, but I've had UTI like systems regularly for as long as I can remember. I would say a couple times a month I start to get that uncomfortable feeling, burning sensation, kidney ache, etc. I've had GPs tell me multiple times that my urine samples are negative despite having these symptoms, and just been given 3 days of antibiotics "just in case". Which obviously, has never treated the issue or relieved the pain.
I've not had a medical professional confirm that my regular uti symptoms are connected to my endo but there definitely seems to be something significant there. Its very helpful to read others stories about their similar situations.
I'm due to have a mirena coil fitted in March, fingers crossed it can help my constant UTI pain too 😁
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