Severe UTI - what should I do?

Hi guys. I'm new to this lupus journey, and whilst I regularly have UTI's (always a week before my period is due), the one I am having now is the worst yet. I have been to my GP and am on some antibiotics, but I am literally peeing blood which is freaking me out a bit. I have only had my initial consult from the hospital and am awaiting my follow-up appointment so as far as Lupus is concerned I remain unmedicated. I am however on warfarin for my APS, which is being treated by another hospital.

I feel absolutely shocking and have a very bloated and tender abdomen. I am worried about the state of my kidneys/bladder.

I have started on the antiobiotics today (which obviously means frequent blood checks for the warfarin) but I don't know if I should press for investigations or ask to bring forward my next appointment with my lupus dr, which is due in 3 weeks tomorrow.

19 Replies

  • Seeing as you have the added complication of Hughes Syndrome/APS and are on Warfarin, you need to pop along to hospital and fairly swiftly get the attention of somebody on the team managing your conditions, you can't leave something like this! They need to sort you out now, not leave you to wait. MaryF x

  • I think you may be right Mary. Do you think I ought to get to A&E? That's what my mum said :-(

  • Your mother is right, please do. take a pen and paper in case you are kept waiting so you can write out your history in bullet points, medications and symptoms! Good luck. MaryF x

  • My local hospital know nothing at all about the conditions. I am not sure how they will help?

  • If you tell them that Hughes syndrome is a clotting condition in which you need a high INR level. They should look it up if they don't know.

    Good luck

  • This was a big problem for me and after two years was referred to a specialist he put me on 3 months of antibiotics I think it was never really going before and it has really helped. See a specialist early and get your kidneys checked. Good luck. Xx

  • The fact your on wArfrin and bleeding should be enough for them to see you straight away my hospital team told me if I start bleeding I'm ment to call a amberlance or go straight to a&be never leave something like that go get it checked out good luck

  • You should call your doctor and explain your symptoms. It may not be serious or it may be. None of us can answer that for you. But blood in the urine, especially if it is that visible is a cause for concern and should be checked out.

    In the long run, you may be able to reduce the frequency of UTIs by taking a cranberry supplement. Ask your doctor if this is OK with your other medications. Cranberry prevents bacteria from sticking to the bladder wall. Drink plenty of water to keep flushing out your urinary tract-six to eight glasses a day is generally recommended depending on your body weight. When you wipe after going to the bathroom, always wipe away from the vagina. After urinating, wipe back to front. After a bowel movement, wipe front to back. It is also helpful to wear cotton underwear which "breathes" better than most other fabrics.

  • Thanks gazorpf. I cant take cranberry because I'm on warfarin. Ironically my parents are being interviewed by the BBC about the NHS right now. Once they are done I'll ask them to run me to the hospital. I just don't want to waste anyone's time. :-(

  • You are right about the cranberry but you are ok with D Mannose.. even st thomas have written about it. MaryF

  • I hope your situation has improved since you last posted. I fully agree with you that all hospitals are NOT the same when it comes to treating lupus. I was hospitalised at my local hospital recently and became very dangerously ill before the doctors would request help from my specialist team at another hospital. I was actually seriously considering discharging myself and getting taxi transport to the hospital with the knowledgeable staff. Quite something considering I was on drips and oxygen.

    I am already considering my next steps if i should require any future admissions. The ambulance staff would only take me to my local hospital. I may risk a taxi to a preferred hospital in future.

  • Ok. Add in a bleeding nipple and the fact I have only one more antibiotic tablet left I am stepping my case up. I returned to gp Friday who said he could find no obvious cause of the bleeding breast and told me to go back next week if either bleed hadnt settled. I'm not waiting. Im off the A&E. :-(

  • Ok. So I spent today in a and e to be told it "doesn't look like a lupus flare and there is no longer sign of infection but if you're still bleeding in two to three weeks see gp for a referral". INR 2.5 so its not caused by warfarin. Still pretty concerned now and dont want to leave it longer. Its already been serious bleeding for 10 days, and after each wee I'm shaking...

  • Just go to your GP this morning and get a referral to a specialist, ask him/her to print your A&E blood results (to which they have access online) so that you can take with you when you see the specialist. Ask the GP what could be the cause of the bleeding, if not uti (particularly the nipple). You must be so worried!

  • I have an appointment on Thursday back with my gp. The a and e doctor said all my bloods came back as normal apart so apart from blood in urine there seems to be no problem. :-(. Apart from blood in urine??? He said its probably a left over from the bad uti I've been treated for. He said bloodwork doesn't suggest a lupus flare but I am not sure what bloods he had.

    Meanwhile I am still bleeding and still have a painful abdomen. Arghhh! So fed up with being ill.

  • Just tell everyone that you don't care what this is or isn't, you do not want to have ANY bleeding, so until you have that resolved you won't be satisfied. Good luck Thursday, what a nightmare.

  • Went yo A&E yesterday. Sat there with a canula, "just in case I have a high INR", and blood and urine taken, drs said INR down to 2.6 from 3.1, and there's no evidence of infection any more, and blood levels in urine probably due to the infection I had. Thia morning I passed pure blood when on the toilet, collected it, got emergency appointment at thw GPs, where the female GP double tested both samples demonstrated ++ leukocytes and +++blood. God knows what results they were looking at in the hospital. The doctor said I mustn't take chances with SLE and kidney dysfunction so when I'm back there on Thursday the other GP should refer me to a nephologist to scan my kidneys anf bladder. I am now ob another douvle strength antibiotic and feeling awful and pretty worried. Mum says if they fail to sende urgently to hospital she will take me to Thomas' then and there.

  • So now I have been bleeding in my pee for two weeks, am halfway through my second course of (different) antibiotics and still no closer to knowing what's going on. I went to A&E Sunday who said, yes there is blood but no infection markers so the blood is possible left over from a serious UTI. And yet next day at GPs there was a ++ marker for infection and hemolysed and non hemolysed visible blood in urine (sample basically just blood!). Dr there started me on a strong alternative antibiotic but said if still bleeding by tomorrow to see the dr there who first put me on antibiotics for a referral as "you can't take chances with your kidneys because you have SLE".

    So tomorrow I'm back with the first dr from this episode and I will push for investigations. It is infuriating. I feel awful and yet I'm having to tell professionals what I need.

    Top tips please good people.

  • Say that you've had enough with this to and fro, you must be referred urgently to the nephrologist, say that you really do not want to lose your kidneys because of all these delays. You've had all tests possible, ask to be sent for an emergency appointment tomorrow. What's wrong with these people??

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