Since I've been on here, I've spent all this time chasing answers so I would have something to report. Still no real answers. My MD couldn't figure out why I still had pain in my urethra area, so she sent me to a urologist to check my bladder. The urologist has run a test and found no infection, so now I'm being given trial treatment and probably more tests for bladder. I've been told I do have CKD, but there may be other issues. I go again next week, then may learn something.
Since my MD left the state, I've been assigned another doctor within the same group, but I won't go back for blood workup for about 4 more months. My Nephrologist has retired also. I believe it's just a 'catch-as-catch-can' system out there now, but I'll hang in there. Not overly worried; can't afford that.
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Ladyprudence
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Hi Ladyprudence.I'm not sure what age you are but have you looked into Vaginal Atrophy? Low Oestrogen levels can cause these issues. I know because I have had these issues lately. You can be referred to lots of specialists and still be none the wiser. Its when you meet a doctor that knows their stuff, that you start to get somewhere. Obviously it might not be this but it is something to research. Google it and read forums from other women and see if the symptoms are similar to yours. A large percentage of women suffer from this but but many are embarrassed or dismissed by medical staff. Wishing you all the best x
Ziggydoodah, interesting that you mentioned that, because the urologist said something like my urethra had dropped and estrogen could make get back the way it should be. That sounded weird to me, but she prescribed 6 weeks of applications of estrogen, low dosage. I said, Do I have a choice about that because that sounds scary to me? She very nicely told me she was going to help me, but I should trust her to do her job. Anyway, that sounds on the same wave length as vaginal atrophy. Thanks so much!
Start treatment ASAP as it only gets worse!! I have a mild form of it as it was caught early by my GP. I kept thinking I had a urine infection but tests kept coming back negative. I have looked into everything..cystitis, biofilm in the bladder etc all roads led me back to this. I was demented. Go to the menopause forums and read up on it!!
Okay. I'll go as fast as I'm allowed, but since I've found a doctor I like, I must match her pace. She did say normally she waits a few months to check this out, but she was pushing this up to 6 weeks. I think that's a good start with her.
Butterbread, you sound on the same page as ziggydoodah. Yes, to both of you, it is painful and for the first time I walk like an old lady. One friend told me she has botox injections every 5-6 months for something similar. Says it keeps her from constant urine leakage. Thank you for your response.
Hope everyone feels better. I haven't tried Botox. DSMO treatments. I think that's the right letters. Six treatments, one weekly for 6 weeks. It goes into remission but comes back. It took about 8-10 years to finally get diagnosed with interstitial cystitis I guess it's pretty rare because most urologist don't seem to know about it or they made wrong diagnosis. I finally found a doctor who said that I either had cancer or interstitial cystitis. Dr. Nichol was a God send.
Yes, I understood that. It's just that my doctors never mentioned cancer. I'm sure they know anything's a possibility, but I've never had one throw the word out there like they did to you. That's why I said Ohmigosh. Well at any rate, I'm glad you didn't have it, though I know cystitis is bad enough. Thanks again, butterbread, for your help. I hope to know a little more by the end of next week. So slooow......
I’m so sorry to hear about the situation, what kind of diet do you have?, my niece has some similar problem urinariting, she said she doesn’t feel like emptying the bladder, my sister had search for a lot of natural stuff, some of them, aloe Vera, massages, herbs, and some are working, I think you should change your diet for some time like a few months, only vegetables, chicken and fish, try to avoid all sugars since some bacteria rely on sugars, maybe you have some bacteria in there, and get as many vitamins as you can, try the vitamin C shots, try hibiscus tea with no sugar, and search for some more herbal teas to clean your body, there most be some inflammation, and you don’t urinate right, so the pee is getting back to the kidneys and that’s why you’re getting CKD, hope the best for you, take care.
That was all very informative, Justicelover! I've been pretty good with my diet; in fact, the doctor said don't even think about your kidneys right now. Your numbers are good and your kidneys are functioning well. Let's concentrate on your bladder.
The Uroligist's nurse did a quick ultrasound and said 'Your bladder is empty; that's good'. I said that's odd because I always want to 'go'. She said, Well it's empty now.
I eat lots of chicken, fruits and veggies and some bread, I have a weakness for sourdough. Some fish. Am light on the vitamins, will ask the doctor about taking more. Was back to snitching candy, and I admit sugar is a dangerous thing. Some renegade cells love it, and it's not good for kidneys.. I'm craving anything sour, tart or acidic. Wonder if Bicarb of Soda would figure in there. Does your niece have that problem? I also still have a little potassium, per my MD's permission, but I watch it.
Also, not many people talk about this, but I seem to have my biggest attacks after exercising or working in the yard a little too hard. That has been a BIG issue.
I hope your niece finds a resolution to her situation. I like her ideas and diet. I'll also stay with the doctor because I don't want to miss something she needs to monitor.
Thank you for your message. You've been very helpful.
Hi there. I have something called renal tubular acidosis, it's a secondary kidney disease where youer blood and urine become acidic due to too many oxolates or other buildups. It can lead to kidney stones. It definitely affects the urethra and can cause pain while urine is in an acidic state.
An imbalance can happen like this to people with ckd as well. I hope you can find a nephrologist because my primary care provider was completely unfamiliar with such things
Missdc, that may be what happens next, but first the urologist will hopefully be able to rule out what she can. I'm willing to go where they send me for as long as it takes. From your and other responses, it sounds like this could be a pretty long road. Did you have protein/blood in your urine? I do, and the urologist said she was sure that's why I was referred to her in the first place. Last year, I had a colonoscopy done for extremely heavy vaginal/rectal bleeding. Doctor was satisfied he took care of everything, and dismissed me. No more bleeding, but an invitation to come back in 6 months if I wanted to. Well, no I didn't want to, but sometimes we could go on and on with symptoms before we start adding up.
I'm sorry you're having to deal with tubular acidosis. Do you feel like they're taking good care of you? I don't have much trust anymore. I appreciate you.
I always have trace amounts of blood and/or protein in my urine, it's a symptom of RTA. I also tend to have high chloride which is what the bicarbonate is supposed to even out. Basically, I have a lack of natural bicarbonate in my blood, which is what keeps it from being too acidic.
Because it's a symptom and it's mild, they never treat it past the bicarb pills. Instead they monitor it. I am not sure what they would do if my labs went crazy, though. Everything related to it with me is mild.
PS I actually am looking for a new nehprologist myself, but the last one WAS good and he was the one who caught the RTA. However, he retired. Luckily I have a primary care NP who worked in the renal specialty and ER for 30 years, so she is able to advise me better than most. I see a new renal doctor in November I think. My labs are monitored by my primary care right now and are pretty good.
To be honest, nobody explained either disease in full and I am eager to see a new kidney doctor. I need to know what symptoms to watch out for bc I am in danger of electrolyte imbalance. Sometimes I get so tired "out of nowhere" and it can't be my meds. It has to be one of my several health issues, and I never know if it's my kidney
I keep intending to bring up the bicarbonate question with one of the doctors, but other things crop up. BTW, I am 81 years old, and I could make a list of docs who say, that for my age I'm doing very well. I see where they get that. When I'm getting ENOUGH SLEEP, I feel and look good, it makes that much difference.
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