Lupus and interstitial cystitis-crumbs it is painful

For many years, I have suffered from what were thought to be recurrent uti's but my recent bout ( 6 in 5 months) have all come back negative for infection

I cannot describe how painful it can be at times, it really comes on quickly and feels like my insides are going to explode..... Other times, it can be a constant dull ache ( up to a week at a time) accompanied by back pain.

I have finally convinced the gp that there is something wrong and to send me for further tests, a cystoscopy and ultrasound.

The problem is, when you have a chronic condition such as lupus ( I have a few other to throw in too) everything is put down to lupus and not investigated as an individual issue.

Does anyone else suffer from this or have any knowledge to pass on or know whether it is linked to my lupus???

Any insight into this would be gratefully accepted


10 Replies

  • Hi Chablis.....I also so suffer from issues with chronic kidney infections. Then will go thru a period of time where I have symptoms but no infection. I always have blood in my urine as well. My doctor and I have discussed going to a urologist because it is getting a bit ridiculous and we both think I am at the point of needing the specialist. However, I am going to Wait until after the holidays, as I just don't want to spend the holidays worrying about something new that has shown up. I also agree with you as far as everything being blamed on lupus and no further investigating! I am lucky in that my doc doesn't do that. I do think tough that this kidney issue IS related to the lupus, simply because the kidneys are an area that can be greatly affected by the lupus. It can be/is just SOOOO confusing at times!! Hang in there and good luck with your testing!

  • I read something last night about Fibromyalgia causing abdominal pain - painful uriation etc.

  • Hi Chablis

    I have interstitial cystitis which was diagnosed after finding inflammation in a cystoscopy.It's only linked to Lupus because it's an auto-immune condition affecting the bladder. There are several drug treatments that can help and bladder training exercises. If you Google it you will find a support group for it. I couldn't agree with you more that it's easy for Lupus to be blamed for everything to save on investigations!. Cranberry Juice helps too. I'm lucky mine is mild so feel for you. Good luck for your tests, let us know how you get on. X

  • Lupus can cause inflamation of the serouse tissue that surrounds any organ and thr brain, when my serouse tissues are inflamed it feels think my kidneys are going to explode the pressue and ache there is so painfull it radiates up your ribs and up your bk to the liver area.. I always discribe it as falling down the stairs..uti results always come bk neg for infection as its the serouse tissues causing the inflamation..i always show elevated protien, and the others in my water. Just a question whats meds are you on at the moment x

  • Hi. Yes I've had bouts of cystitis for about two years but it's getting ridiculous as I feel I either always have it or it's lurking. The Rheumy said that it wasn't his area of expertise (helpful) and I should speak to my GP. So I did that last week and I've to hand in samples next time it happens so they can check for infection, and she has also referred me for a pelvic ultrasound.

    I have found the following herbal mix like some sort of miracle cure. It really alleviates it. I was prescribed this by a herbalist and of course anyone else should check with a herbalist before taking it. I don't think it quite gets rid of it completely - as I said I feel like it's usually lurking, but it definitely helps soothe the bladder and UT when I get an attack.

    'A Tea of achillia, (yarrow) althea fol (marshmallow leaf), zea mays (corn silk) barosma betulina (buchu) and arctostaphelos (hmmm, doesn't look right, couch grass anyway) and drink as much as you can for a few days, thereafter everyday for a couple of weeks then see how you are.'

  • Hi Chablis,

    About 15 years ago, I had re-occurring UTI and Dr. put me on low dose of antibiotic for 2 years. I changed Drs eventually due to a move, and they new Dr. felt that my intestines were holding bacteria that the antibiotic couldn't get to. He put me on high dose of Cipro for 3 months and I have NEVER had the problem again. I hugged this man!

    I was diagnosed w/ SLE a couple of years ago. I don't know if it is related, but 2 years of antibiotics could not have been good for my body although I am very very thankful I had the antibiotics to kill what was causing the UTI. I do think taking lots of antibiotics w/out replenishing it w/ a probiotic is not good for my body. I take a brand called GutPro which I get in the states where I live.

    Sending hugs,


  • hi

    I can really sympathise ...what you are describing is me except I do not have lupus I have been diagnosed with fibromyalgia. I was really ill with the constant uti's no infection showed up on tests. My Dr's at the time were not in the least interested no infection so no problem !

    I Took myself to the genito urinary clinic or sexual health clinic they call them these days where you can walk in off the street & be seen. They found blood in my urine so prescribed antibiotics which would clear it up ...then it would come back again, after going to them 3 times & on each occasion no infection but blood present they said my G.P should refer me to hospital to a urologist. On going to my Dr she refused to refer me & started asking for a urine sample infection no problem & they never found traces of blood but the hospital always did.

    In desperation I used savings to see a consultant privately who immediately booked me in for an ultra sound scan & put me on antibiotics for 28 days,he also advised me to change Dr's pronto ! When I returned he said that I needed a cystoscopy. I had changed Dr's by now & had no problem getting a referral to hospital. The cystoscopy found nothing ! but they said they flushed out or washed out my bladder to help it. This was all 2 years ago now, I took the long term antibiotics for approx. 9 mths which seemed to help but I still get pains & twinges I find a spoonful of bicarbonate of soda in a glass of water helps. It makes your wee less acidic a glass first thing in the morning & last thing at night. Fingers crossed I am a lot better now. Besides the fibromyalgia I have arthritis going on ..I hope I've been of some help I don't usually post just read ! but my heart went out to you Big Hugs & I hope you get relief soon X

  • I believe Lupus is a ridiculous ailment used by every medic under the sun in order to avoid investigating your actual problem(s).

    I notice nobody mentions allergies which I believe is the main underlying reason for many of your ailments. Why not - what or who are they afraid of?

  • I had the same problem for over 10 years. But one day it stopped never to return. I still drink a glass of cranberry juice every day, just in case. Good luck

  • Had recurring uti's and after two plus years my new GP put me on Nitrofurantoin 50mg one tablet a night .This has stopped my uti infections.

    My new diagnoses are Asthma. Anaphalitic ? Ophthalmic ,Shingles, Pneumonia,

    Gall Bladder Stones which I needed surgery for.

    my shortness of breath causes me to cough and I have a lot of green phlegm. After a hot drink phlegm is easier to move.

    I would love a healthy body. I've never had support from my family .

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