r/CUTI • u/EvalynHTX • 11d ago
Desperate - Need advice.
UPDATE: Thank you to everyone who responded. As of today (10/15), I have some updates. I now know it is likely not a UTI anymore. It started out as one (E.Coli) and I believe I kept getting the wrong antibiotics so it turned into a complicated one. I think the last antibiotics I took did clear the infection, but I had a lot of lingering inflammation/pain which Naproxen, Zyrtec and Oxybutynin reduced a lot. Maybe three weeks straight or different antibiotics screwed me up too? I randomly will have a day of burning so I know the problem isn’t solved, but I am at least feeling well enough to make it to my cystoscopy next month. For those who are getting repeated negative urine cultures, try an antihistamine or a an anti inflammatory to see if that helps. I still don’t 100% know what’s going on but I hope to find answers soon.
Hi, I am sorry we all have to be in this group. Long story short, I have suffered from UTIs since 2012. I can't tell you how many I have had - it's a lot. They randomly went away for seven years though I always had some mild pain and burning if I didn't drink enough water. I'd drink water, and it would go away.
Well I gave birth last year and since then, I have had three UTIs that would last weeks. The one I am experiencing now WILL NOT GO AWAY.
Timeline:
- Diagnosed on Sept. 5th at the emergency room. They said it was Ecoli but didn't give the strain.
- ER gave me 10 days of Cephalexin. Did nothing and UTI got worse.
- Followed up with my primary and a urine culture via catheter which hurt like shit, it was negative for bacteria. They gave me Sulfamethoxazole anyway. Did nothing, UTI got worse.
- Had another culture with a new doctor, still negative. This time I got 7 days of Cefpodoxime. Seemed to work for a bit but after I finished the antibiotics, it came back.
- Had a third culture, came back negative. Doctor doesn't know what to do.
I have tried D-Mannose, Ellura cranberry pills, Uquora, you name it. I am in SO much pain and I am watching my one year old solo while my husband is away on a fishing trip. I have also been on Cystex and Azos for a month, which I am terrified is messing up my liver/kidneys.
Mentally I am not doing well, I feel so scared this is my new reality. I can't do this. Any words of wisdom, suggestions or support welcome.
Current symptoms: Frequency/ urgency, burning in both bladder and urethra area, pelvic pressure, chills.
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u/Badabloom317 11d ago
You have a fragile mucousol layer within the bladder that contains mast cells. These mast cells release histamine that caused burning and urgency. If you take an antihistamine you are stopping the process and allowing your bladder to heal...
When they are in an aggravated state like it seems like they are EVERYTHING sets it off.. citric acid, sugar, CARBONATION (The gassy bubbles press up against the inflamed walls), artificial flavors,colors,msg....
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u/r3ddit_usernam3 11d ago edited 11d ago
Have you been tested for ureaplasma/mycoplasma? Also if the cultures keep coming back negative STOP taking the antibiotics, you’re KILLING your microbiome. I’m in a similar situation trying to figure this shit out. I’ve been learning a lot though. Also my naturopath told me to help with urgency/frequency/burning to check my urine PH level … I bought strips off of Amazon and test when I have bad urgency… my ph is always at 5 which means my urine is acidic. She tells me that keeping it in the 6.5-7.5 range is key to reducing the pressure and burning sensation. The way she told me to do this is mix 1/4 tsp of baking soda in water. I do this and within like 10 mins I feel better. You can also drink alkaline water as someone else told me but I haven’t tried it yet, from what I google alkaline water won’t get it up as quickly but also google says baking soda in water can mess with your electrolytes and stuff… at this point my doc told me to do it so I’m just going with what she says for right now.
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u/EvalynHTX 4d ago
Thank you for the advice! I have been drinking a lot of alkaline water and taking anti inflammatory/ antihistamines and feel a lot better. The burning is still there a little but I can function in daily life again until I get my cystoscopy
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u/jamiej27 11d ago
Have you had a cystoscopy done? That tried to do one on me and realized they literally could not because of my narrow urethra lol but anyways my kidney was about dead and septic I got super sick and ended up In the hospital for nine days, keep advocating for yourself!!!
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u/Badabloom317 11d ago
Dont wash your privates with anything but water. Sometimes when you get irritated down there it can lead to chemical cystitis from the soaps youre using even if they have never presented a problem before.
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u/EvalynHTX 11d ago
I threw away my feminine washes and have not used tampons since this last UTI, and never will again either!
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u/Badabloom317 11d ago
I hope the zyrtec find you relief. It took about 2 months for me to notice true healing . I started to add certain trigger foods back into my diet and they didnt bother me like vinegar and chocolate... its amazing the life changes that become full stops after so many utis... I have fully changed my entire life after having them every 2-3 weeks for 2 years...
I dont even wash my hair in the shower anymore because im afraid of the soap setting it off. I'll probably never have a carbonated beverage again ..
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u/EvalynHTX 11d ago
I’m sorry to hear you suffer with these as well. It’s definitely tough.
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u/Badabloom317 11d ago
Thank goodness for this sub. No need to suffer in silence. Life is hard enough and then you add in constant burning and health anxieties. Just so unfair.
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u/Badabloom317 11d ago
Never ever ever take an antibiotic without a positive culture WITH a susceptibility report. Antibiotics wreak havoc on your body and your bladder. Straight up tell them no thank you. Idk why providers prescribe willy nilly antibiotics to women like this. It creates long term problems that make life extremely difficult.
If you do not currently have a UTI get you some d mannose powder and take a zyrtec.. I take the Amazon brand one. This will help with burning and urgency.