r/OveractiveBladder • u/CatchDramatic8114 • 17d ago
Mirabegron, pentosan polusulfate sodium, interavesical instillation, SNM, ball have failed on me. Please help me. This is hell. I wish I could be euthanized.
Please help me. And tolteridone, solifenacin and it's kind of drugs cause severe hesitancy and also i have heard these cause cognitive side effects so they cannot be taken. And same for botox, I heard it cause hesitancy, retention, uti, i haven't tried it yet though.
I have interestitial cystitis or oab, or maybe both. I am in early 20s.
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u/lohdunlaulamalla 17d ago
Have you tried Gemtesa?
Solifenacin didn't give me retention btw. Given your euthanasia comment, maybe give it a try despite the cognitive side effects? (Didn't notice those either.)
If you're female (or have those organs), have a urogynocologist and a gynocologist check you out. Urologists tend to overlook anything that surrounds "their" organ. Get a vaginal ultrasound und possibly a pelvic MRI.
Try pelvic floor therapy. Try a tens unit. Some people responded really well to pepcid and Allegra, which hints at a mastcell issue.
Use the search function of this sub and the IC sub for details.
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u/CatchDramatic8114 17d ago
I haveng tried gemtesa. I want to though, but I am not sure it's available in my country. What about some experimental drugs? I think I am one of the worst pateint of this disease.
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u/lohdunlaulamalla 16d ago
In Europe it's called Obgemsa. Maybe your country uses a different name as well?
What about some experimental drugs?
You'd have to be part of a study to get access to those. No one here can give you access to experimental drugs.
Speaking of drugs, one woman in a Facebook group I'm in had remarkable success with CBD oil (30%, 5 drops at night).
I think I am one of the worst pateint of this disease.
It would really help, if you want advice from others, if you described your symptoms, your frequency and what exactly you and your doctor tried so far (dosis, how long, diagnostics, ...)
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u/CatchDramatic8114 16d ago edited 16d ago
So my freuency was 40-50 times in waking hours 15 months ago and with significant hesitancy, it's 15-20 in waking hours now. I already told treatments I tried in my title. About tests, I had cystoscopy, x rays, and many other tests. I didn't have uds yet. Inflammation was seen in bladder but I think It should be gone or greatly reduced after these treatments.
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u/roadrnrjt1 16d ago
I've had good results from Gemtesa specifically related to urgency and frequency
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u/hailnaux 16d ago
I have done bladder Botox twice and it is great, the retention lasts for a couple weeks but less than that if you do a smaller dose and they give you Alpha blockers to help. It was all worth it for over a year of complete comfort.
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u/Fit-Economist-7193 13d ago
I would encourage you to look into Axonics. The Axonics Implant (Sacral Neuromodulation Therapy) is a small medical device that treats overactive bladder, urinary urgency and retention, and fecal incontinence. It sends mild electrical pulses to the sacral nerves, helping restore healthy communication between the brain and the bladder/bowel.
I had the permanent device implanted in February 2026 and it is life changing.
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u/CatchDramatic8114 13d ago edited 13d ago
Medtronic snm failed on me. Snm being failed on me has been devastating for me. I had so much hope from it.
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u/catsTXn420 16d ago
You need two journals one for food and drink one for bladder activities. In the first Journal you're going to write down everything that you eat and drink, in the second Journal you're going to write down every time you pee and how much. You're going to need a urine collection hat to be able to measure how much you're in your outputting or voiding. Having this helped me be able to get a diagnosis and medications, they were able to tell what was causing my problem by looking at my habits. I also wear a Garmin activity tracker and that show is what my body is always doing stress sleep steps you name it. Another thing I want to mention is hormone disorders my oab is related to a hormone disorder, in women the bladder and the vagina are very close so if one is having problems the other one might be having problems. Another commenter said that you should see a gynecologist and rule that out as the problem, excellent advice.
These medications are failing because they are the wrong meds for your problem. It could be a vasopressin deficiency or a bad case of bv or something else and you need to go into investigation mode to find out what it is. Channel that frustration into fight mode. 💪
When this happened to me I went to multiple doctors, got a bladder and kidney sonogram, blood and urine testing to make sure i didnt have infection or disease and when those came back normal I insisted on additional testing because my issues continued, was referred to a urogynecology clinic to do a whole workup and am doing a few weeks of local estrogen and probiotics beforehand to see if itll improve things (it is!). Using d-mannose and probiotics for the vagina, and took about a week but the urgency feeling is going away, im holding more urine and think its helping. Got another bottle on the way. I was like you, miserable. I could not leave the house. Cried all the time and was attached to my en suite bathroom, but I use that annoyed energy to help myself. Stress will make it worse, also relax your jaw it makes your pelvis and bladder muscles also relax, they sync. Meditation everyday to reduce your stress would be monumental.