Urinary retention and incontinence issues

Ladies, I am honestly in total shock.
My health issues have been dragging on forever. And now it’s becoming clear that these urinary problems were just a symptom of something deeper.
I am at my wits' end. I truly don't know what to do anymore.
Basically, I dealt with this "persistent inflammation" down there—fibroids, doctors being unable to pinpoint the exact cause of my pain, and all that. Everything was blamed on the fibroids, and they told me surgery was the only way out.
Well, fast forward to now: the fibroids are gone, but the symptoms? They haven't budged.
What I'm dealing with is chronic sensitivity in my lower abdomen, described as this intense, burning pain. I foolishly assumed it was just my poor bladder being crushed by a uterus weighed down by massive fibroids, so I rushed into surgery to fix it once and for all.
However, during those nine agonizing months leading up to the operation, alongside the typical symptoms explained by the fibroids, I would occasionally feel that same burning sensation right above my pubic bone. My gut told me it was my bladder, but I rationalized it as the uterus pressing against it, thinking everything would resolve itself once the fibroids were removed.
That didn't happen.
I mean, maybe it did initially, but about two months into recovery, I made the mistake of picking up a small child, and I felt it—that uterine pain.
The sharp pain subsided (right where the internal incision was), and an ultrasound showed the uterus and the surgical site were fine, but that heavy, bloated feeling in my lower abdomen persisted.
I managed to keep everything under control until I had to step in and help my mother. She's elderly, and she needed assistance getting to a surgery for cataracts. Fearing any complications, I spent the day before helping her pack; I was packing myself (with some help from MM) for our trip. The next day, MM was handling all the heavy pots and pans while I just flipped the meat. But I was on my feet a lot. Constant sitting and standing. I wasn't resting. Even though it had been four months since my laparoscopic surgery and I decided to try being a bit more active, God, that was a costly decision.
That burning pain flared up again. I thought to myself, *fine, it’s probably not the first or last time.* But after spending two days following my mom and MM around hospitals (though I tried to stay seated most of the time), that burning sensation intensified. Okay, I thought. Enough. Let MM handle things; I’m going to bed.
AND THEN THE SHOCK—my bladder actually started leaking urine! 😲
And then I remembered what my gynecologist said during my last exam—how she noted my bladder was full, even though I had been in the restroom just three minutes prior!
When I pointed this out to her, she just looked at me and said, "That's impossible." She insisted, "Trust me, you probably just drank too much water before the appointment." Fine, whatever, I thought, but a seed of doubt remained.
Once that involuntary leaking started, everything finally clicked into place.
It turns out my bladder hasn't been functioning correctly for this entire year. It doesn't empty completely. So, the issue was that localized pain all along, not the uterus recovering, as I had originally believed.
So, what now?
Nothing. I'm heading to a urologist. I'll see what happens next.
I am in a state of total despair. After all the struggles with my uterus and fibroids, I've now opened up a whole new, terrifying chapter of misery.
Does anyone here have experience with retention or involuntary voiding? What are my actual options?
I will let you all know how things progress.
Keep your fingers crossed for me, ladies... 😢

The thing that’s really keeping me in a state of shock is this: I’ve been reading up on it, and apparently, for these kinds of issues, they use a catheter—and there’s even a chance that catheter might become permanent... 😲
Or, if they actually find the root cause (and my hunch is it's a prolapsed uterus—though nothing is confirmed yet), then the uterus comes out! 😲
I mean, it's a total horror movie. Honestly, incontinence itself isn't even what scares me as much as the thought of a hysterectomy, or whatever else might happen...

I am completely spiraling. This is the breaking point. After spending nine months mostly stuck in bed following doctor's orders, followed by surgery, then another four months of forced rest (interrupted by one massive, stupid mistake—carrying a one-year-old around—I'm such an idiot!!), and now this...
I was terrified that something had gone wrong with my stitches, or that I wouldn't develop enough adhesions because of this (it felt like they were growing, which was hard enough to deal with, but whatever...).
I thought I had come to terms with everything, but this is just too terrifying..
I don't know... I can't wait for my period to end so I can finally go see the gynecologist and the urologist. But given how long the wait times are here (my gyno is private, but the urologist is giving me a real runaround), I have no idea where to turn..
Does anyone have a solid urologist they can recommend?
Please, please help me out with any experiences or recommendations for a good urologist!!
Thanks in advance!

Brenda Johnson68 said:Please, please help me out with some experiences or recommendations for a good urologist!!
Thanks in advance!

I don't have any personal experience with him myself, but while I was searching through urology specialists a little while back, I did come across some very lovely reviews for this doctor: http://webmd.com/specialist/perobokarica/d9983
Best of luck! 🙂

Dr. Milko Padovan (Mayo Clinic), I’m giving you a massive thumbs up for this guy—he is honestly one of the kindest, most attentive doctors you'll ever meet. He handled my double J stent insertions and removals, so while I’m not 100% sure if he focuses specifically on your exact issue, he's definitely worth a shot if you want to ask him about it...

Have you guys actually tried doing Kegels? And I mean doing them the right way.
You’ve got to engage all the muscles, not just the ones around the urethra but the ones around your bowels too. You need to take it slow, do them multiple times a day, and gradually ramp up the number of squeezes and releases. Honestly, learning how to properly relax those muscles is just as vital.
You should be doing these exercises every single day without fail. You can do them in pretty much any position.

I ended up having a hysterectomy because of fibroids. The issues start immediately, but you really have to get everything under control.
The doctors here in the US don't give you any real guidance after surgery—at least nothing smart, anyway.
It's like they don't even know what to tell you; I've heard some absolute nonsense from them.

While searching online, I stumbled upon some instructions from a hospital in Australia regarding my condition. Apparently, there are limits on what kind of exercises you can do following a hysterectomy. Basically, I shouldn't do anything where I can't simultaneously squeeze my glutes and perform a Kegel. My version of a crunch looks something like this: I do the crunch while squeezing my butt and those specific muscles. (image)[/IMG]

Working out after a procedure like that has to be gradual and done correctly.
Just sitting around is terrible for you; that's how you end up with organ prolapse.

Right now, I’m working the hospitality season, pulling basically every type of job like a jack-of-all-trades, and I'm doing it without any issues at all, even after the hysterectomy.
The symptoms I had right after the surgery were pretty scary. I was dealing with pain, too.
I honestly thought I’d end up needing stents or bladder lifts, but I managed to avoid that through my own effort.

The real key to recovering from major surgeries is exercise. Staying stationary does you zero good other than weakening all your muscles.
Also, you need to make sure you're emptying your bladder completely. If you feel like there's still urine left right after you go, you should immediately do some pelvic circles—kind of like you're spinning a hula hoop—and then try to go again. Keep doing that until your bladder is totally empty. The fact that my gynecologist could see residual urine means I wasn't fully emptying.
It’s all part of exercising and strengthening the muscles that hold your whole body together.

Sometimes problems stem from other things, like hip issues or whatever. Scar tissue can cause trouble, though I think scar tissue is a minor issue if you stay active.
You also need to watch your weight; your condition after surgery can definitely worsen if you gain weight. That’s exactly when the pain starts showing up for some people.

Thanks so much for all the info, I really appreciate it. I'm going to have to weigh my options and see what makes sense. My mom is actually staying with me right now and she knows a specialist urologist, so we’re probably going to start by scheduling an appointment with him to see what he thinks..

Dear casualbadger22,

I haven't even attempted those Keglov exercises because the second I try to engage anything (you know, actually doing pelvic floor work), I get these dull, aching pains in my uterus right where the internal stitches are... so basically, I've given up for now, though certainly not forever. I fully intend to start those Keglov exercises as soon as my uterus allows it. That’s my only sliver of hope right now.
And that was before this whole burning sensation and urinary leakage started. Now, on top of that dull ache—which flares up if I exercise or carry anything heavier than a small water bottle—there's this intense burning and pain in my lower abdomen. It feels like I have an open wound down there. It's horrific... 😲 So, exercising is completely out of the question at the moment...

At this point, my bladder is the biggest nightmare. My leaks? They're even worse than they were yesterday... I finally tracked down a urologist (he's actually a family friend of my mother's from back home), but he won't even see me for a consultation until this Sunday, and even then, he just wants to talk first to figure out what's going on; he refuses to do anything over the phone. Typical. Honestly, I feel even worse after that conversation... I don't know if I can even make it to Sunday, let alone wait for him to schedule a full exam... oh boy! 😲
My period is tapering off; it should be completely gone by tomorrow, so maybe I could manage some exams then. But that lower area just keeps burning and burning, truly like a raw wound.
I'm terrified I'll end up having to go to the ER, and then may God help me... I'll probably just have some residents or interns shoving a catheter into me. 😲 🙂
I am praying I can hold out until Sunday, and then through next Monday, without ending up in the emergency room. I would much rather this doctor see me immediately... 🙂 Please keep your fingers crossed for me so we can somehow convince him to squeeze me in...

@casualbadger22/">@@casualbadger22, would you happen to have a link to that website where you found those exercises? I would truly appreciate it if you could share it...🙂

I haven't had a chance to catch up on everything yet; I didn't even see your post.

So, how did the checkup go?
I was looking at those exercises maybe two or three years ago, so tracking down the exact same pages is a bit of a pain.

Here’s some stuff I jotted down myself after running it through Google Translate.

Exercise Routine
Squeeze your muscles inward slowly as hard as you can, hold that tension for five seconds, then relax for ten. Do this ten times every morning, afternoon, and evening. You can breeze through the contraction and relaxation cycles without waiting around. Gradually work your way up to 15 contractions (mix slow and fast ones) three times a day; move to 20 contractions three times a day, then eventually hit four sessions of 20 a day, plus an extra 20 whenever you feel like it.

Do these exercises at least three times a day. Do them in three different positions: lying down, sitting, and standing. You can do them while lying in bed, sitting at your desk, or just standing in the kitchen. Doing them in all three positions really strengthens the muscles. Just be patient and don't skip them. It’s only five minutes, three times a day.

You should probably take a minute to actually read up on how to do Kegels properly. It’s vital that you get the squeeze and the release right. Try looking at some American websites; the explanations are much better.

It seems to me like all these issues, including fibroids showing up, stem from hormones that aren't functioning correctly. I was on Dijan 35 for five years and it was honestly a great period of my life—all my problems just vanished. Before those meds, I had constant bladder issues, and after a few months on them, everything that had been bothering me for years just cleared up. No amount of herbal tea ever helped. Not only that, but my whole string of allergies disappeared too.

Unfortunately, the meds stopped working, so I ended up having a hysterectomy because of the fibroids. I spent a year struggling with herbal supplements, but nothing worked. Now I'm back on hormone replacement therapy, and I feel reborn.
I've noticed that my weight definitely makes things worse, and I feel much better when I lose a few pounds.

I have regular checkups because I'm on hormone therapy. I’d also repeat something I was told once: it's a waste to worry about the "downside" of hormones if they're fixing a serious imbalance. People take hormones for their thyroid, for crying out loud. I want to spend my life in peace, not in misery. Hormone replacement therapy brought me balance and peace of mind.

Dear casualbadger22,

Thank you so much for getting back to me! I’ll definitely try to implement all of that when the time is right..

So, I ended up at the urologist. I actually had to head to the ER because I just couldn't take it anymore.. The urinary retention has subsided for now, as I managed to force things back to a somewhat normal rhythm..
They ran some tests and even did a cystoscopy. Thankfully, there aren't any polyps or tumors; they just found signs of chronic inflammation in one specific spot.

And then, of course, they just send me home without any kind of treatment plan. "Rest".. seriously? How am I supposed to just rest?!
I honestly don't get it.. After all that bed rest and making one little mistake, my bladder issues clearly flared up again.. They really should have prescribed me some anti-inflammatories or something.. it's ridiculous..

But hey, I guess the good news is that nothing is physically growing inside. Not that I was expecting anything else, really. My main concern was figuring out how to stop this ongoing "deterioration" of my bladder caused by all this pelvic inflammation.. I just wanted them to give me something to help dampen that chronic inflammation (which apparently isn't even "there")—some anti-inflammatory medication to lower the risk of things getting worse.. but nothing.. just "go rest".. oh my God..

Whatever. I have patience.. if I could manage to stay in bed for an entire year, I can handle one more.. 😲🤦😁

I’ll probably go see a private urogynecologist to check the positioning of my pelvic organs (just to make sure they aren't pressing against my bladder or that it hasn't prolapsed..) and to finally get some anti-inflammatory meds.. I'm not leaving their office until I walk out with a prescription..! 😁

Not one single urologist I saw was able to help me. I had this weird spotting issue near my bladder sphincter, and none of the meds did a damn thing. Eventually, I ended up being treated by a guy who’s now a PhD and runs his own private clinic here in the States.

Then, out of nowhere, these cysts started showing up on my shins. Dr. Gusić, who was working at the Sun clinic back then, told me straight up that in my situation, hormones were a necessity, not just an option. After about 15 years of pure misery and agony, getting on hormone therapy felt like seeing the Sun for the first time. My urinary issues just vanished like they never even existed. Something was clearly missing and totally out of whack.
Basically, with certain bodily imbalances or deficiencies, you can end up feeling like you're going through menopause; the bladder lining can thin out or go haywire, much like what happens with interstitial cystitis.
Over there, they treat this stuff with hormones or topical estrogen creams, but here, people don't even realize what they're looking at.
Your blood work doesn't necessarily have to show a hormonal imbalance for one to be lurking somewhere in your tissues. It’s the exact same deal with PCOS. You could have perfectly "ideal" hormone levels in your blood while everything else is a mess.
I went to see Gusilć because I was in massive pain, and he basically told me right off the bat that he suspected a hormonal issue. I went in complaining about debilitating pain—whether from a small fibroid or some cysts, I don't even know—but the guy basically brought me back to reality.

It might actually be worth asking someone to prescribe you some Linoladiol cream containing estrogen so you can try applying it regularly for a few months. Even just the cream itself might provide some relief. If things improve, great—at least then you'll finally know what the actual problem is.

I have a feeling you’d really get a lot out of seeing a physical therapist who specializes in pelvic floor health. It might be worth getting checked out just to see if there's any prolapse going on, and to get a better sense of your muscle tone... plus, they can give you some great tips on how to actually improve everything.

@Casey Palmer5/">@@Casey Palmer5,
Look... I honestly don't know. I'm just in too much of a state right now to even attempt any kind of effort, let alone actual exercises. If my only issue was incontinence or something similar, fine—I'd be out there working out!
But for me, the real problem is this sensation of an "enlarged," painful bladder. It’s hyper-sensitive to everything—touch, pressure, you name it. It feels heavy, like it's just getting in its own way.

And according to my urologist, nothing is technically "wrong." They say it’s just slightly irritated—maybe from constant pressure caused by a fibroid? But then comes the heaviness (which hits me at the slightest exertion, and my definition of "exertion" for my bladder is frankly ridiculous), and then that overwhelming urge to go kicks in. It feels like a pregnant woman dealing with a massive baby pressing down, except in my case, it doesn't feel like the uterus is squeezing anything. It feels like the bladder itself is the culprit, just taking center stage and causing all the trouble. Poor thing.
So, yeah.

@Petra... I can't help but wonder if my issues might actually be hormonal. My cycles have been acting so strange these last few months—they’ve shortened by half and the flow has dwindled significantly. Am I freakingly heading toward perimenopause? 😲 It feels a bit premature, doesn't it? 😁 Though, then again, at 47, perhaps it isn't entirely out of the question...
We shall see. Once this cycle passes, I intend to book a private appointment with a urologist to get a comprehensive ultrasound—both transvaginal and abdominal—to determine if there's some kind of pressure on my bladder or if something has simply failed.
A little more data will allow us to be smarter about this... closer to the truth.

And oh, the misery of it all... I suppose I should vent to you all, though what choice do I have? To go from being an active, healthy woman to feeling like an invalid for an entire year now—I simply have to let it all out. It all traces back to that one moment when I spilled ice water over my thighs on the final day of my period, and my suffering began right then and there. That is why I want to tell every woman reading this: those old wives' tales our grandmothers told us about being careful during your period? They aren't just superstitions. You truly do need to be cautious during those days. 😢 If only I had taken them seriously sooner... but alas, I didn't.
Well... hopefully, things will improve. We take it one step at a time.