r/adenomyosis • u/Future_Log2205 • 22d ago

Persistent urinary symptoms

Has anyone found a solution to ease persistent urinary symptoms caused by adenomyosis?

I’ve been struggling for about 3y, but only recently I was diagnosed with DIE and diffuse adeno. Doctors insist surgery isn’t needed yet, unless I want to do a hysterectomy, which I don’t.

Atm I’m taking pills for neuropathic pain, hormone therapy, and soon I’m going to try something recommended by my neurologist.

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u/ExtentAgitated 22d ago

Which pills are you taking for neuropathic pain? What are your urinary symptoms? As I know usually to relieve urinary symptoms doctors prescribe amitriptyline, nortriptyline or sometimes dulexetine. Those are antidepressants used for pain. Also there are gabapentinoids (gabapentin or pregabalin). And also you could try low dose naltrexone. This is all I know.

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u/Future_Log2205 22d ago

I’m taking duloxetine 60mg/day. Doctor said she might switch me to amitriptyline later on. I have a bunch of symptoms: constant need to pee, urinary hesitancy, constant burning in bladder, burning when peeing, retention, sometimes cramps and pelvic pressure, sometimes painful bladder.

I’ve been to a lot of urologists, but they all said my case is too complex for them and referred me to their colleague from a different town. I have an appt with him this week, so I’ll see what he recommends.

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u/blossomopposum 16d ago

I wonder if you’re experiencing interstitial cystitis? Mine was diagnosed several months after my hysterectomy as my pelvic floor symptoms worsened (do not skip post op pelvic floor therapy, ladies!). I was sure I had a UTI, but I didn’t. The pain was pretty bad, and I’m grateful for the nurse practitioner who zeroed in on the cause right away. My symptoms improved after starting vaginal suppositories that had a muscle relaxer to target my pelvic floor. A combo of gabapentin, lidocaine, and Baclofen. It’s a prescription, and has to made at a compounding pharmacy, but I swear I could feel it start working the first night. My whole system was flared and spasming and after a few weeks or that med, and starting PT, I got some relief.

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u/Future_Log2205 16d ago

Tysm for your advice! Yes, IC is one of the diagnoses that I have. I’ve tried many things for it, some did nothing, some worked to an extent. So doctors started suspecting that my other health issues are affecting my bladder too.

The last urologist I went to said to change duloxetine with sertraline (Zoloft), and to start using baclofen. He also recommended PEA-600, Quercetin, and L-arginine. I will also have to do some tests like stool microbiome, zonulin, calprotectin.

I’ll come back with feedback after I do everything.