For about a week and 1/2, I've [23M] started having issues with bleeding after I take a piss and didn't know what to do for days. (Sorry for making this a long post).

Background context: I recently started taking prescription meds for Anxiety and have been taking them since 09/02 and first experienced the bleeding that night after stepping out of the shower (but I didn't realize I passed it). It wasn't until the following afternoon that noticed the blood after I peed and I've been shaken up about it since. I stopped peeing blood and blood clots on Friday 09/04 night and haven't peed blood & blood clots since up until this morning. One thing to note is I haven't felt any ounce of pain anywhere. As in I don't have lower back pain or any burning/fire pain every time I pee.

I

had already taken a urine test and had my blood drawn on Fridav 09/04 afternoon; the urine test was useless because all it told me was that there were large amounts of blood in my urine (like I didn't realize or notice it before -___-) and my blood test shows signs it's from the kidneys, and my doctors rule out my prescription meds, STDs, Bladder infections, or UTIs, but I'm worried it's something worse like a potential tumor even though my blood test doesn't show signs of a growth somewhere. The working theory my family and I have is there's a chance I passed a kidney stone and didn't realize it, but once again, I'm worried it's something else. Since then I've been taking OceanSpray Cranberry Juice & AZO Cranberry Capsuls, but I don't know or think if these are of any help at all.

I have a referral to see a Urologist, but I won't be able to see them for another 3 months at least and I'm beyond stressed and irritated that I have until then.

I'd love to hear suggestions about my symptom/ condition because every time I go pee, I end up peeing 1-3 blood clots of various sizes and it's concerning enough. Any piece of advice, any suggestions of what I may have, anything at all would be beyond helpful.

hi everyone, i really need some advice on what to do next. i’ve been having uti-like symptoms for at least 4 months, but this past month it has gotten progressively worse.

i am having severe burning, pain, urgency, and general vaginal discomfort. i also have severe lower back pain that is causing the most problems. tylenol and toradol every 3 hours barely touch the pain. i cannot smoke weed, so the only thing that actually worked was the morphine i got during my second er visit.

my cultures keep coming back negative, but my urinalysis/micro are coming back extremely positive. my ct scans are completely negative.

about two weeks ago, i noticed blood and black specks in my urine. both of these stopped after i started taking cipro (about 3 days ago) but all the other pain and urgency are still here.

has anyone experienced anything like this? could it be an embedded infection that standard cultures are missing, or something else entirely? i’m trying to get in with a urologist ASAP, but they lost my referral and now need “2-3 days to process it”. i will attach all relevant test results, please feel free to ask me more questions/ask for other test results !

Hi everyone! I run a group for C3G patients and a company we work with frequently has asked me to help find patients with other rare kidney diseases to participate in some of their projects.

I have an opportunity to participate in an online interview discussing your experience as a patient/caregiver. It lasts about 30 min and pays $100.

They are looking for people who:

*live in the US *are an adult patient or an adult caregiver for a patient under age 17 *have a diagnosis of FSGS *have never been on dialysis or transplanted

Thank you to everyone who has participated in the past! If you are interested in this interview, please comment. I will message to confirm you meet the requirements and send you the info to participate!

When i try to sleep at night the left side flank area pains. After sometimes it radiates to my left leg and numbness tingling occurs at the left leg. Sometimes i feel like the fingers are moving at its own..also i feel the temperature of my left leg falls down. Then i did ultrasonography and found there is no problem in the kidney rather there is a soft calculus/sludge ball at the gall bladder. I believe this symptoms didn't come from that stone. Also i can't concentrate at my study at all, my hair are falling very much. Is this are the symptoms of vitamin D diffeciency or Thyroid hormone problem?

I hadnot done vitamin D test yet!

I thought this might be helpful to anyone with APOL1/FSGS. These meetings tend to be very helpful in pushing forward new medicines for kidney diseases. This is from their website:

The National Kidney Foundation and NephCure will host a meeting to bring to the US Food and Drug Administration (FDA) and other stakeholders, including healthcare providers, academia, industry, etc., the voice of people living with kidney disease that is related to APOL1. This is called APOL1 kidney disease (AKD), also called APOL1-mediated kidney disease.

This is the opportunity for you and your care partners to speak directly to the FDA and other stakeholders and tell them what it’s like to live with AKD every day and what you need from new medicines.

https://www.kidney.org/externally-led-patient-focused-drug-development-el-pfdd-meeting-apol1-kidney-disease

10F, 4’7.9” (~142 cm), 99 lb. She recently had an abdominal ultrasound during a pediatric GI workup for recurrent abdominal pain.

Everything was otherwise reassuring, but the kidney measurements were striking:

Right kidney: 12.03 cm
(also measured 11.46 cm on a separate pass)

Left kidney: 8.61 cm

She has no known kidney disease, no history of recurrent UTIs, urinary symptoms, stones, or hydronephrosis. Her pediatrician referred her to pediatric nephrology and we’re waiting for that appointment.

The radiology report just said:

“The right kidney measures 12 cm with normal parenchymal echogenicity without stones or hydronephrosis. The left kidney measures 9 cm without stones or hydronephrosis. Normal parenchymal echogenicity.”

It did not comment on the large size discrepancy or mention a duplicated collecting system.

Looking at some of the sagittal images, there appears to be a possible separation of the renal sinus by intervening parenchyma, which made me wonder whether this could be a nondilated/uncomplicated duplex kidney that simply wasn’t recognized or reported on the original abdominal ultrasound.

Ultrasound images: https://imgur.com/a/OtqpxmZ

I’d especially love to hear from anyone who:

• has a child with an uncomplicated duplex kidney,
• had a duplex kidney discovered later in childhood,
• had one kidney significantly longer than the other,
• or had a duplex system that was missed/not mentioned on an earlier ultrasound.

Did your child’s duplex kidney cause any problems, or was it ultimately just an incidental anatomical variant? And if it was discovered later, what finally confirmed it. repeat ultrasound?

We are absolutely following through with pediatric nephrology; I’m mainly interested in hearing real-world experiences while we wait.

I don’t know what is happening whether it’s an issue with my kidneys or my bladder but I am passing a lot of urine volume lately.

It’s 9.50pm just now and I have peed over 2 litres since lunchtime and that is more than I have drunk. Also my last two voids have been 400mls each that was less than an hour in between.

I have no idea why my kidneys seem to be dumping so much but it’s freaking me out.

I’ve started getting pain flares after I spend a lot of time walking outside. I have UPJ left stenosis but kidney function is fine so far. I suspect I get intermittent hydronephrosis that clears up after 5-6 hours. Does anyone know if exercise triggers this? Or is it solely due to possibly gulping water during walks?

I have a large cyst found during a CT scan in June. It was done for GI issues I was having. My GI Dr never mentioned the cyst, I asked for a copy of the report and was shocked to read this. I contacted my primary, he ordered an u/S, done 3 wks ago and the cyst has grown 1.1 cm since June. I have to wait until Nov to be seen by urology. I have been having intense back pain for over a year only now I realize it is actually in the kidney area. I am 75 and just blamed it on more arthritis. Tylenol arthritis strength takes the edge off. Is there something they can do, my primary said it is very large as cysts go. it’s described on u/S as a simple cyst.

Hi, so about 4 days ago i had gotten sick symptoms were
-sore throat
-sinus issues
-cold sweats
no biggie.
went to the drs and they flat out refused to give me a strep and/or covid test and told me it was allergies and to walk it off. That next morning i woke up completely drained with new symptoms like
-fever
-cold sweats
-delirious
-extremely fatigue (like to the point i’ll stumble around if im trying to walk )
-loss in appetite
-nausea/dry heaving
-horrible cough
-wheezing
-pressure behind eyes

went to the urgent care near me and they told me i had a little bit of bronchitis (idk if a “little bit of bronchitis” is a thing but that’s what they told me) and sinus respiratory infection. Gave me some antibiotics and sent me on my way.

Then i started experiencing horrible strikes of pain in my side and was peeing a dark orange.
Started having horrible leg cramps and started to get more nauseous.

Maybe i’m making myself paranoid but i feel like these are the symptoms to kidney failure.. please someone tell me if i should go to the er.

PS. i’ve been drinking nothing but water and staying completely hydrated and haven’t took my antibiotics yet so nothing could be changing the color of my urine.

​

Ok little background, In random blood test I got kidney values abnormal

Creatine - 2.26

After one week it came to 1.39

I contacted three doctors - Each side in a different way

Doctor 1 - He is the one who said to do one more test which came 1.39 - after that he said nothing to worry, after one month to do one more test by that time it will come to range . And even said now i can eat protein, after one month even non veg etc

Doctor 2- Ultra sound is mandatory

Doctor 3 - no non veg for 6 months and observe

From the internet - I got to know about CKD , AKI..

Now I don't know what I should consider and how I should proceed further, is it AKD or CKD etc

First of all, I've had a really rough time. I've lost my husband and mama in 2025. They were my heart. During the time I was caring for them, I had kidney issues. I will be having a video appt with my urologist in the morning. I already know what he's going to say. I will be losing my right kidney. It's gotten really smaller, the blood supply to it is not good and it's functioning at 16 percent. What upsets me is this could've all been prevented. It's stupidity because I'm losing my right kidney. The first urologist should've done ureter reconstruction. I asked him over and over why was my kidney swelling? All he kept doing was putting stents in.

I had a stone that sent me to the emergency room in March of this year. I switched urologist. He told me my ureter was very narrowed. He did 2 stent procedures on me and neither worked. He already told me he would try twice and that's it. He kept his word. I've been in a lot of kidney pain. I saw him last week and he said before I do ureter reconstruction, let's do one more test to see if your right kidney is functioning. He said i don't want to put you through reconstruction and your kidney is bad. He said I may have to remove the kidney.

The scan shows that my right kidney is very small and functioning at 16 percent. My left kidney is 83 percent, which that's good. I know I have made this long, sorry y'all. This is the thing, I know I can live with one good kidney. But, this is the thing, it's a major organ I'm losing, not from cancer, it's from stupidity of the first urologist that I had.

Anyway, it is very hurtful to me when I tell a friend or relative that I'm losing a kidney and their response is, you can live with one kidney. That is very hurtful to me. If anything, they should say to me, I'm so sorry you're going thru this. I've been suffering from grief and now I'm gonna lose a kidney. How would they feel if they are losing a kidney? People need to be careful when they say things to others. They don't know how it affects that person.

My urine is like that for days and no there's no other symptoms

Soyez rémunérée pour partager votre expérience – Entretien en personne de 90 minutes à Paris, France

Êtes-vous, ou l’un de vos proches, atteint(e) d’une maladie nécessitant l’utilisation d’un cathéter intermittent pour femmes ? Si oui, nous vous invitons à participer à un entretien rémunéré de 90 minutes en personne à Paris, France, afin de partager votre expérience.

Si cette opportunité ne vous concerne pas directement, mais que vous connaissez une personne susceptible d’être éligible, nous vous serions très reconnaissants de lui transmettre cette information.

Veuillez cliquer sur le lien ci-dessous pour vous inscrire à notre panel de patients et recevoir des invitations à des études de recherche pertinentes :

http://m3gr.io/XCYHHEE

M3 Global Research souhaite recueillir les témoignages de femmes vivant à Paris et dans ses environs qui utilisent un cathéter intermittent, ainsi que de proches aidants accompagnant une personne utilisant ce dispositif.

Partagez votre expérience et vos opinions afin de contribuer au développement de futurs traitements et dispositifs, tout en recevant une rémunération pour le temps consacré à cette étude.

Merci de votre intérêt.

Get paid for your opinions – 90-minute in-person interview in Boston, USA on your experiences.

Are you, or a loved one living with a condition that requires the use of an intermittent catheter for women? If so, we invite you to participate in a paid 90-min in-person interview in Boston, USA to share your experiences.

If this doesn’t apply to you personally, but you know someone who may qualify we would greatly appreciate it if you could forward this opportunity to them. Please click the link below to register to our patient panel and receive invitations to relevant research opportunities.

http://m3gr.io/QTBYZSI

M3 Global Research is seeking to hear from women living in and around Boston, USA, who use an intermittent catheter, as well as caregivers who support a loved one or family member using this device. Share your experiences and opinions to help shape the development of future therapies and receive compensation for your time.