View Full Version : cystitis

02-25-2011, 02:06 PM
I have been having problems with cystitis. I am wondering if this could have something to do with my Lupus. Does anyone else have problems with UTI's or Bladder infections

02-25-2011, 03:28 PM
I did from 2008-2010, I would have one every other month, but now I have not had any in over a year.
It's painful and anoying.
I used to drink alot of cranberry juice, but it has alot of calories, so I switched to cranberry pills.
It really helps to flush out the infection, or better the bacteria.


tiggerlishus - Heidi
02-26-2011, 04:11 AM
yes i do been to uroligst and the say i have chronic cystitis unfortunatly i can not do cranberries as i'm on warfrin and it seriously effets that soo big no no so doctors have been talking about putting me on a low course of antibiotics but i'm not liking that idea so looking for a natural way at mo! x

02-26-2011, 07:36 AM
Did the Dr say what was causing it!

02-26-2011, 07:46 AM
yes last summer i was in the er 3 times with blood in my urine all times. because it happened on the weekends that is where i was. Do not know if it is from the lupus or not. Went to a urologist and he put me on a maintenence dose of antibiotic for 6 months and it worked for awhile have had a few since. Bonita

06-11-2011, 06:49 PM
I have had SOOO many UTIs in the past year or so. I suddenly started feeling sick yesterday, woke up with my back hurting and it got worse throughout the day and then I couldnt pee. Went to the doctor today and low and behold it is another one. They are really annoying for me not so much because they hurt but because I always feel like Im about to pee my pants. I'm wondering if its because of my cellcept and medrol because I seem to get them more often when Im one those meds which I know suppress the immune system leaving you open to infections. So now its another round of antibiotics. YAY. =/

06-11-2011, 06:52 PM
FYI Anyone that is taking Ammitriptyline needs to report bladder issues to their doctor. It is a well known side effect of that medicine

06-11-2011, 08:15 PM
I've read that Interstitial Cystitis is very common with AI issues.

Interstitial cystitis
Cystitis - interstitial; IC
Interstitial cystitis is a long-term (chronic) inflammation of the bladder wall.
Causes, incidence, and risk factors

Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. The condition is usually diagnosed by ruling out other conditions (such as sexually transmitted disease, bladder cancer, and bladder infections).

IC is frequently misdiagnosed as a urinary tract infection. Patients often go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made.

The condition generally occurs around age 30 to 40, although it has been reported in younger people. Women are 10 times more likely to have IC than men.

* Pain during intercourse
* Pelvic pain
* Urinary discomfort
* Urinary frequency (up to 60 times a day in severe cases)
* Urinary urgency

Notice that it is an inflammation - such a familiar word to us!
I also take a daily cranberry pill, which helps to keep the infections under control.
However, it does nothing for the urgency, which happens every time I stand up!

Hope this helps.

06-11-2011, 08:28 PM
Oh my god that sounds like me! How would you figure out if it was that or UTIs? I need to ask my doctor about this.

06-11-2011, 09:50 PM
Wow timely thread! I am calling doc on Monday due to issues. I have no infection. Canberra pills and juice have helped it settle quite a bit, but feel I should get it checked out. Thanks for this post.

06-11-2011, 10:24 PM
Where have all my replies gone, I'm beyound brain fog LOL! seriously.
I was saying, you are so spot on with this info Marla, excuse the pun. I have had IC since January when I got a very bad urinary track infection along with 2 other workers on the farm that same very hot week. I was sicker than the others, my bladder/kidneys bled. I thought the matter was resolved but not only wasI left with my usual urgency but total incontinence. It took some weeks to see the Urologist who after the cystocopy informed me I had IC. I have willingly taken LOL!, Hiprex (it's like cranberry) to see if that helps. I find I now have constant stomache pain, some burning and appear to more frequent than very frequently visiting the bathroom, day and night.(my reason for Brain Fog) The urodynamic test tomorrow will reveil whats up. After taking my medical history, she was thinking MS so I need to tell her the blood tests are positive for Lupus and go from there. I'm passionate about informing women, including my 3 wise daughters in their 30's, about urinary tract infections/incontinence as so many I find are ignorant about the issues and put up with ill health. Cheers and good job! Noelene

Linda From Australia
06-11-2011, 11:28 PM
OUCH Noelene, hopefully your doctors are good. My daughter had kidney reflux when she was little, her surgeon was excellent. He was a children's doctor, and unfortunately he died of Leukaemia, that just shows that doctors get sick as well.

06-12-2011, 01:17 AM
Sorry to hear about her daughter too when she was little & the Dr, I heard some horrific stories yesterday about a friends 3yr old and kids in PMH. I AM counting my Blessing! I'm sure as the urologist suggests it's a spinal cord/ brain & auto immune problem that will now requires self catheterization ...from one infection... is so unbelievable! It's can be so demoralizing and depressing at times. I'm so fortunate to have both excellent male and female Dr/Specialists that act as quick as appointments allow and are so knowledgable and supportive. Can you beat having psychiatry sessions walking through Kings Park every month. At least the walk does me good anyhow LOL! cheers Noelene

Linda From Australia
06-12-2011, 01:51 AM
Why do you get to walk through Kings Park every month, is that because you need to go for a walk after your appointments at Charlies? Do your doctors say that one day you can void naturally? This must really drive you up the wall.

I have been doing heaps of pelvic floor exercises after my hysterectomy in January, and now when I cough when I have asthma, things seem to be working just about fine. My physio is really good, he showed me exactly what to do. I have been doing the wrong things for 48 years. My surgeon said it doesn't matter how bad you are, pelvic floor exercises will make some difference. But then again, your problems have probably got nothing to do with your muscles. I just thought I would let someone know how doing the exercises have helped me.

06-12-2011, 02:28 AM
This is good news for me. I must tell you what else I noticed, if I have too much coffee I seems worse. Not sure if its the caffeine or the acid. Thanks for the tip.

06-12-2011, 01:57 PM
Recurrent cystitis with Lupus

In formation also which may help any female member's suffering with it.

When suffering from an autoimmune disease, even the best efforts to maintain optimal health result in the development of infection. For individuals who suffer from lupus, the complications of infection can be quite
varied and impose a significant reduction in the quality of life. With every major bodily system affected by lupus, it is often to manage every possible health risk.

A common complication among lupus patients, especially women, involves the development of bladder infections or cystitis. While many women suffer from recurrent cystitis, as part of their lupus complication, there is also risk for developing cystitis in response to a recovery from surgery. When gastrointestinal infection or surgery takes place, cystitis is a relatively common occurrence among lupus patients.

If you suffer from lupus and find that you experience a rather frequent complication of cystitis, it is important to understand how your autoimmune disorder plays into your urological dysfunction. For many lupus patients, cystitis is often treated with a combination therapy using immunosuppressant as well as corticosteroids. However, even with this type of treatment, the complications of cystitis may not resolve easily. If this describes your condition, your healthcare professional should investigate for a more complex health condition.

When cystitis in the lupus patient does not resolve rather quickly, after using corticosteroids, the cystitis complication may be attributed to a primary hemorrhage or perforation within the intestinal wall. Without proper evaluation and treatment, this type of intestinal complication can lead to fatal outcomes. While there are many types of immunosuppressant drugs on the market today, your healthcare professional may recommend the use of tacrolimus over all other options. More specifically, your physician may want to utilize tacrolimus in lieu of cyclosporine which is the most common medication prescribed. Additionally, surgery, in some cases, may also be required to repair any intestinal complication that is present.

Autoimmune disorders are very complex health conditions and often lead to adverse health outcomes involving the urological and gastrointestinal systems. For many lupus patients, the complications do not arise out of
lack of treatment but, instead, by misdiagnosis. If you suffer from lupus and find that recurrent cystitis is a health complication for you, ask your physician to conduct diagnostic studies to investigate the possible risk for having an intestinal complication. With proper medication therapy, including the use of tacrolimus, most cases of recurrent cystitis can be resolved once the intestinal complications are ruled out.

06-12-2011, 05:50 PM
The urologist is at hollywood Hospital, but the Psychiatrist is in West Perth opposite Kings Park. As both he & I are into Eco Therapy (my back ground is in psychology) there is nothing better than chatting whilst "smelling the roses" and admiring that river view. Being in Nature has a real way of healing. There is some excellent works done in this area of therapy by Perth Psychologist George Burns.
Will I be able eventually to void? don't think so, I'll know more about that today after the urodynamic test. It appears whilst sitting and picking onions has irritated my spinal injury even though it did not hurt. The uro believes its sending wrong messages to the brain so it voids when ever it pleases and within any warning most of the times. This is not just a leak! The other times, I get an urgent burning sensation and its all over. At home it's a different story usually I have time to get to the bathroom, not so lucky when on outtings so I have to be prepared. Unbelievably, I can cough, run, jump, laugh, sleep. (hands over your eyes for this one LOL!) have sex and there is never ever a lose.Explain that to me, she can't. The bladder never fully empties (hence causing the IC) and we don't know why. That is what the test today is about. You are so right Linda, I don't have ANY pelvic floor muscles and thank YOU for wanting to share. I have a great female Physio at Rockingham Hospital who agrees with the Uro, the exercises can gain muscle strength, they are fairly useless if the brain messages to the bladder are malfunctioning. The Uro suggested it could be MS given my medical history but I need to tell her the blood test have come back positive for Lupus, rheumatoid arthritis and auto immune chronic hepatitis. Will hear today about further confirmation of blood tests. Is it driving me up the wall? I have been one Crazy Wet Lady since it began in January causd by only one urinary tract infection with no other known causes. My ego wouldn't let give up work until last week when I "snapped" with working the cold & wet weather and side effects of Hiprex. The farm life and the peaceful environment had been my "Eco Therapy". The bladder can be botox and medications like anti depressants used to sort out problems, but it's not now an option for me. (shaking myself down and slapping my face) lets see what news today brings. cheers Noelene PS. Yes KITTEN, they say caffeine causes dehydration ( and depletes the body of Vit B12) and irritates the bladder like oranges and tomatoes, so if you are experiencing problems it might be wise to assess that like anythig else you eat and do. As I eat a high fruit diet, Melons of all kinds are my worst enemy. I eat 9kgs of oranges and 6kgs of tomatoes per week with no effect. The Specialists say my diet isn't an issue, infact most of them are raw vegans. My blood vitamin etc levels are very high so I'm healthy in that sense. I just can't drink alot of water at the moment, which is not good even though I get apparently enough fluid in the pounds/kgs of fruit and raw veg that I eat.

06-12-2011, 07:06 PM
My daughter Kayla had frequent UTIs when she was a pre-schooler. By the time she was four years old, we found out that she had one ureter that was too long and was implanted into the bladder in the wrong place. She had surgery to correct it, but it only worked for a few years. Later, when she had an ultrasound for possible appendicitis, the doc noted that her right kidney had stopped working and shriveled up.
She gets along fine on one kidney, but often has to take a preventative antibiotic for UTIs. She really worried me when she was pregnant, but she did fairly well - just a bit of edema.
Urinary tract problems run rampant in my side of the family.

06-12-2011, 07:39 PM
Oh you are wonderful with your research! Thanks so much!

06-13-2011, 02:42 AM
Oh you are wonderful with your research! Thanks so much!
Thanks Tammy, sometimes it helps the member's more if they're able to read additional information. xxx

06-13-2011, 05:21 PM
First I couldnt go to the bathroom and now I cant stop. Ask and you shall receive.....lol

06-13-2011, 06:38 PM
good to see you are able to laugh.

thinking of you.

Linda From Australia
06-14-2011, 05:24 AM
Noelene how did you go at the doctor's office. Hopefully he had some answers for you.