Refused antibiotics for cystitis
Posted , 6 users are following.
I have suffered cystitis and kidney infections since in my teens which eventually killed one of my kidneys. I was referred to a specialist when the infections became frequent again in my late 30s but he told me the infections were psychosomatic! He decided this because my urine samples rarely showed bacteria. Thankfully my GP arranged a cyscoscopy which revealed my urethra is very narrow preventing my bladder emptying properly. Since then I always strain when urinating to make sure my bladder empties completely and this helps enormously, I no longer need to go as often and have had very few infections in the years since. I can't help wondering if I'd been given the cyscoscopy in my teens it might have prevented my kidney dying.
I'm now 58 and recent kidney function tests show my one kidney isn't working as well as it has been. So when I developed cystitis a couple of days ago I immediately tried to get a doctors appointment but was given one with a nurse/clinician instead as they were fully booked. She did a dip stick test on my sample but as again it showed no bacteria she refused to give me antibiotics! She said she'll send it to be tested at the lab and if they find bacteria I will then be prescribed antibiotics. She then suggested I buy one of the cystitis remedies from the chemist. I told her I'd already checked them out but hadn't bought one because they warn not to take them with high blood pressure or kidney disease of which I have both. She checked on her computer and said there were no red flags so I took her advice and bought one. But in the leaflet it clearly states not to take with the above conditions! My symptoms are so bad I have been taking it and at first it helped but now it's making no difference and the feeling of needing to urinate is there permanently and the severe burning is back.
I did some research and discovered many labs report colonies of bacteria of 10,000 or less as negative and that at least 30% of women with a bladder infection will have 10,000 or fewer! I'm obviously in that 30% which explains why many of my samples have been negative over the years.
The nurse said the results will be back tomorrow but I strongly feel she's wrong in refusing to give me antibiotics (I did check before agreeing to see her that she can prescribe them). I feel she's playing with my life, I told her about my kidney dying from repeat infections and that tests showed my remaining kidney isn't working as well as it should but it made no difference. I would be grateful for opinions on this please.
0 likes, 6 replies
Marylh kaydi
Posted
Hi Kaydi, I'm no expert but I've read your posting and offer a few thoughts. I have interstitial cycsitus, have had now since September and feel I may have had this off and on for years. I had to go to the emergency room at our nearby hospital back in the fall because I was sure I had a bladder infection and my doc's office was closed. You are right about the level of bacteria to be found in the urine. They found bacteria so gave me a small amount of antibiotics..which did nothing. Followed that up with my gyn who did two ultrasounds and looked at the notes from the E.R. docs. She was the one who advised me that for a true bladder infection you must have 100,000 bacteria level..mine was only10,000 so was not a true infection and therefore, no antibiotics would be prescribed. Now, there are some treatments for IC, including two meds, elmiron which has a blood thinner in it and amitriptyln,an antidepressant. I refused both and instead try my best to follow a strict diet which is highly alkeline. I don't always succeed. Now, as far as you are concerned, following the cystoscope, did the doc say you had IC? If this is the case then antibiotics will not be effective. This is what I was told. Now, if your one kidney is also involved then you could very well need an antibiotic. But they need to give you a proper diagnosis and treatment. You cannot get that from a nurse practitioner. Forgive me, but I know they are talented and well degreed but if you've got an important organ like a kidney involved, you need an MD, not a practitioner. I think you could benefit from a specialist in any case. I do also feel you need all of these results read by a specialist, preferably a urologist. I pretty much have the same issue as you as it relates to going to the bathroom. When I am having a "flare," as I call it, which now last on an aand verage of a few to several hours at a time, (in the Fall it was constant) going to the bathroom is more painful..pressured and slower to come out, especially at the end. Like you, I force it out and it feels so much better. But when I'm not flaring I can sometimes go to the bathroom almost as easily as I always have. The other thing is, after the scope, did they look at your bladder wall to see any redness, lesions, etc? This almost always indicates IC. A specialist would be able to tell you what is going on with the urethra and if this is from IC or is from something else. In the meantime, do they advise to drink lots of water? I have read this can be of help with IC. Of course, drinking more is predicated on being able to eliminate it too! Anyway, please do your best to get to a specialist. I wouldn't want a practitioner diagnosing something so important. One last thing, do you get flares, pain? Sometimes with back pain? My gyn actually called IC "endometriosis' sibling" I thought that was weird. At my worst it does feel like lousy cramps but I think the important thing to note is that docs don't really know how it starts, and thafeels t the body is too acidic and needs to be more alkelined. There is no set treatment and apparently no cure. I just hope you have a good doc who can actually help you. For a doc to say it's all in your head is someone who either doesn't give a toss about his patients or just doesnt know beans about it. Trust me, a specialist is the way to go. Sorry for the long winded message. I hope it helps in some small way.
kaydi Marylh
Posted
Hi Mary, thanks for your reply. No I have never been told I have IC, I've managed to control the infections since the cyscoscopy by straining to make sure my bladder empties completely and this is only the third or fourth time I've had one in around 20 years. But it's the first time I've ever been refused antibiotics! You're certainly right I should not have been given an appointment with a nurse as she got it wrong, today my symptoms worsened so I rang my surgery and was given an appointment with a doctor who immediately prescribed antibiotics. I feel angry I've had to suffer longer and that she risked my kidney by refusing to prescribe them yesterday. The feeling of needing to empty my bladder is now there permanently but sometimes there's nothing in it when I go as I'm going so often. When there is anything in it the severe burning is back too. I really didn't need another wait in the surgery or the chemist but had no choice. Hopefully by this time tomorrow the antibiotics will have started to kick in and I can finally get some sleep as the last 2 nights I've spent more time in the bathroom than my bed!
I wasn't told I had any redness or lesions on my bladder wall, only that my urethra is very narrow which was the cause of the infections as my bladder wasn't emptying properly. I still find it hard to believe the urologist didn't actually tell me to strain to empty my bladder, I do it as it made sense and it's amazing what difference it's made.
Yes I've always been told I must drink lots of water and I increase this whenever I've had infections. I also drink cranberry juice, I drank a litre carton last night in about 2 hours.
As for seeing a specialist, it WAS a specialist that said my infections were psychosomatic! I had been waiting to see him for a year during which time I had 9 infections and was so worried about the damage they may have been doing to my kidney I wrote a letter asking why it was taking so long. And it's a good job I did as the hospital admitted I'd "slipped through the net as the paperwork had been lost"!! I still feel the specialist said my infections were psychosomatic to cover for this mistake. He then discharged me so I never had the chance to tell him about the cyscoscopy and that it revealed the cause of the infections. I feel very grateful to the GP that arranged the cyscoscopy and feel sure I wouldn't still be here without it as the constant infections would have continued until they killed my remaining kidney. How dare he say they weren't real when they'd already killed one kidney!?! Grrrrrrr
'Cystitis has never caused severe pain apart from the burning but each time I've had a kidney infection the pain was horrific, in my back and in my sides.
Hi lidia, yes I have had blood in my urine with past infections but thankfully none this time. I can't understand why you have not been given antibiotics, it just doesn't make sense. I hate taking them, am allergic to penicillin and Kephalexin and many others make me feel ill but they work. I know now to take them with yogurt as this lines your stomach preventing nasty side affects. Because many of my samples fail to show bacteria I've always had a fear of being refused them as these infections are so horrible. Unfortunately that nurse made my fear a reality and I realise now I should have insisted on seeing a doctor.
lidia1972 kaydi
Posted
Marylh kaydi
Posted
I'm glad you got that emergency appointment. I cannot believe a urologist said that to you! I would have had a few choice words for him. I just wanted to point out that many women with IC go to the bathroom many times in a day, too. Many can't get it all out at one time. IC symptoms are similar to the problem you have with not being able to go completely. . The specialists may want to do a procedure where the bladder is somewhat stretched, allowing for a better urine flow. It is called a bladder distension. Women with IC and overactive bladders can have this done, from what I have read. Problem is it can cause incontinence in some women. Other docs have some patients using a catheter on themselves, making sure they can eliminate their urine completely. I hope everything turns out well for you.
Elly.01 kaydi
Posted
Hi kaydi I see no one has replied to your post, but I'd like to share my experiences with you.
3 years ago I had a hysterectomy due to suffering from fibroids, endometriosis and terrible Pms. After a few weeks I began getting pain similar to that of a water infection. I ended up in hospital for a week on iv antibiotics. That year I was admitted 9 times with chronic pain and given iv antibiotics, even when my water sample showed nothing on dip stick and no culture grown.
i wasn't happy so I asked for a second opinion and was sent to another hospital where the 1st thing that happened was a cystoscope, which revealed a damaged lining on my bladder. This is known as interstitial cystitis. This condition mimics a water infection, all the symptoms and pain but shows nothing on a dip stick or culture. Most importantly, It DOES NOT respond to antibiotics.
Not much is known about IC, my gp had never heard about it, and even now, gives me antibiotics to take when I have a flare up.
Unfortunately there is no cure for this, however, it can b managed with pain relief, diet changes etc. May I suggest that that you have a look into this, as it seems some of your symptoms are similar to mine.
good luck
Elly.01 kaydi
Posted
My apologies, I couldn't see replies to your post until after I'd posted mine 🙄?
sorry