Unexplained Bladder Pain after hysterectomy w/normal Cystoscopy: Confused

Now I am so confused. I saw the doc today.

He said the bladder scope was normal so I don't have IC? He thinks my bladder pain and burning has to do with the sutures of the vaginal cuff healing. He said the bladder pain can be from them healin because they sit right on top of the bladder?

I am not sure if I agree. I don't understand how that can cause me to feel like I have a uti. The urine was good today.

Any ideas? Have you ladies heard of this explanation before?

It would be great if this was true but it doesn't sound right to me.

, dear sister, and, as one who has managed Interstitial Cystitis for several decades, may I suggest a second urological opinion or even a urogynecological one?



It doesn't sound like you left your appt. with a good sense of an explanation, a diagnosis, a plan for pain relief, or a sense of next steps. IC is a diagnosis of exclusion so it can be difficult to diagnose but there are many resources on the web that I'll share below.

I discussed with my urologist the links between IC and hysterectomies and what she told me was that, for some women, the surgery is the final trigger for IC flares.

Basically, it's a condition that is more and more understood, though it wasn't decades ago when I first had the onset of symptoms. The symptoms mimic a bladder infection with all the pain, urgency, burning; but, since it's not bacterial, it doesn't respond to antibiotics.

Bladder Spasms seem to be common after a hysterectomy; but you're about 1 month out, so one would have hoped they would have subsided.

Something else to consider that helps oftentimes is an estrogen cream: you could be suffering from vaginal dryness, which can mimic bladder symptoms.

In the meantime, I can also share some things that have helped me, including drinking plenty of water and choosing bladder-friendly foods (avoiding caffeine—and not just coffee and tea but dark chocolate [sob], plus alcohol, citrus, vinegar, tomatoes, acidic/heavily processed/salty foods, carbonated beverages…. all the fun stuff)!

Here is the link to the IC Diet, a life-saver:
IC Diet

And, if you've not yet checked out these resources, both are terrific (even if you don't suffer from IC): there are excellent recommendations that can really improve the experience of bladder symptoms.

ICA
and

IC-Network

Wishing you all the best, please keep us posted. Try to get all your docs involved in the diagnosis and treatment,
and sending you many

from Romy

Thank you do much.

I have started the elimination diet about 2 months ago, maybe a bit longer. I have found a couple triggers.

My doc is a gyno/ endo specialist. So he might not be the right one for this problem. I am so tired of seeing doctors. The bills are just incredible at this point. I have had 2 pelvic surgeries in less than a year.

I am going to try to be better wih my diet. My triggers seem to be tomatoes and I love them, and too much caffeine. I am weaning myself down but still get headaches. It's all about balance I guess. I have increased water I take a lot.

I'm camping with family and friends now but when I get home to my tablet I will check out the links you provided.

Thank you for your support!

Stephanie: Did the baking soda help at all?

Yesterday I woke up with UTI symptoms back again for the 3rd time. I did drink coffee previous day and might have 'overdone' it with gardening. I drink the baking soda and was fine by noon.

I woke up again today with the UTI symptoms a bit worse than yesterday. Last night I drank a diet coke. I drank the baking soda at 10 a.m. and it seems to be subsiding.

Romy: Are IC flares more common in the mornings?


I'm not sure if this is IC or not, but it's driving me insane. I did have a bladder scope during surgery that came back normal. I'm not sure if that would have shown IC or not. This has been the absolute the worst part of my recovery. Mine doesn't hurt, but it is a continuous urge. SO annoying.

I haven't tried the baking soda yet, I ran out of it. Can you believe that lol.

I loved diet Mountain Dew and now can't tolerate anything with artificial sweetener in it. Citrus is another big thing and of course caffeine.

My pain is like burning when there is no uti present. It hurts so bad I can't sleep. I hope I can manage it will diet and not have to find yet another doctor.

, good morning, dear sisters,
For your questions about flares and the like:
I always found, actually, that I was *better* in the A.M. For me, this was so very much about diet. And even the ICA is cautious about a one-size-fits-all diet. Even the *type* of water you drink varies from person to person. If I drink a litre of Crystal Geyser, e.g., over the day, I'm great. If I drink a glass of Evian, I'm peeing all day.

One magic food for me is: blueberries! They immediately calm my bladder and urethra (the latter where my IC mostly manifests).

Please don't give up on finding the right docs. Since, as I mentioned, IC is a diagnosis of exclusion, it can take awhile. It's also possible to have it with a normal cystoscopy (as I did when I was finally diagnosed). But there is SO much that can help, so many different drug protocols or instillations or local / topical treatments, biofeedback. Diet is key. In my own case, the minute I go without caffeine, alcohol, grapes, vinegar, tomatoes, citrus, highly acidic, salty (no Chinese food... sob), no artificial sweeteners (for me those are the devil), no carbonated beverages (I can't tolerate any form of club soda)... I'm a thousand times better.

I think I mentioned too that HRT or local estrogens can help: vaginal dryness can mimic bladder symptoms.

Wishing you all the best, please keep us posted,
and sending you many

from Romy

Thanks Romy, you have been super helpful on this topic!!!

Mine is positively worse during the morning. This morning it was a constant urge (no pain or burning). I drank the baking soda and it was gone within 2 hours. At this point I"m not sure if the baking soda is working or if it just goes away on its own after I'm up for awhile. I just saw another thread about morning UTI symptoms, so at least I'm not alone.

Stephanie: Try the baking soda girlfriend! haha