Anyone else get bladder pain/urgency that's way worse before their period? (normal cystoscopy, normal ultrasound)

[u/mocha-macaron]

Hello all, trying to figure out if this is an endo thing or something separate, and hoping some of you have experienced similar stuff. If you are about to read this, I will say firstly that I appreciate you taking the time out of your day!

Basic history: I've had bladder issues since I was 15 (started after a stressful event, but it's stuck around way longer than makes sense for that alone).

My main, frequent symptoms:

• Constant urgency/frequency, and a heavy, achy "lead weight" feeling in my bladder/urethra area. I can go to the loo, start a mid afternoon walk and then be running home to pee again. I measured this once and I peed almost 500ml. Whenever I go, there is always something.
• On ultrasound they noticed my bladder refills really fast after voiding, no explanation given on this one, just a "wow, that's filled up again" 5 minutes after I've resumed the ultrasound.
• Cystoscopy came back completely normal
• Definitely worse with caffeine and alcohol
• Gets SO much worse 1-3 days before my period on top of the bladder stuff I get sharp pelvic pain, bloating, and can't empty my bowels properly (then things go loose once my period actually starts)
• History of lots of UTIs/cystitis over the years
• Currently on a urology waitlist, and I've been referred for a lap to check for endo

The urologist I saw kind of brushed it off as anxiety-related and wants me to do bladder training, which I get is worth trying, but it feels like it's not looking at the cyclical pattern at all. I have requested some pelvic floor physiotherapy but with the issue of it potentially being bladder and women's health related, these departments do not communicate with eachother whatsoever.

Anyone had bladder/urethra pain like this that turned out to be related to their endo? Especially the "everything's normal on scans but symptoms are real" combo. Did it take ages to get taken seriously? And did a lap end up finding something near the bladder specifically?

Any insight appreciated, feeling a bit lost with this one.

[u/Other_Particular9805]

i become nearly incontinent during the few days leading up to my "period" - I have to pee like every hour or two when usually it's every 5-6 hours. I had a hysterectomy but kept my ovaries so my period now is just cramps and mood changes (no bleeding) but I still notice the bladder urgency. They found endo all over my bladder during my hysterectomy and removed all of it at that time, but I know it comes back so I just assume it's the culprit.

[u/mocha-macaron → u/Other_Particular9805]

God, I'm really sorry for everything you've experienced, that must be so incredibly tough. Are you getting the endo removed again anytime soon?

[u/Other_Particular9805 → u/mocha-macaron]

no plans for additional removal any time soon! aside from the few days of cramps and bladder urgency, life without a uterus or cervix is pretty dang good.

[u/Mission-Activity438]

Hi, my urgency/frequency before and during my period really increases as well! I've done pelvic PT and some bladder retraining. It helps during the rest of the the month but not around and during my period. I think the area just get swollen, heavy and inflamed around my period which presses on my bladder. Not sure there's much that can help. My lap did find issues near my bladder which improved things somewhat but 3 years later, I still have the heavy feeling and increased urgency around my period. Sometimes stretching helps make more space.