new----not IC after all- urethral stuff

[jakesmom37]

Hi-I'm sorta new- First wondering about protocol- I don't have IC...am I allowed here?! this is so new to me -I was convinced I had IC and fully expected that dx today. and..My pattern doesn't fit and my urgency is different;I've already been worked up for most other usual suspects.
I had been sx-free for 2 years (almost-dx w/IC then); my sx started again in June - they were certain I had (apparently invisible) kidney stones...all hell broke lose this month. It seemed to be a bad UTI-cultures negative.
Last week I awoke to something like hot shards of glass- short of labor, I've not had such exquisite pain..ice and pain-killers for 48-hrs and gradual reduction in pain and frequency. I've been logging for a few weeks-
now average 15X day and it's usually tolerable. (Two years ago I was at 100+living in the bathroom and about to lose it.)
Pyridium helped w/burning ,though not frequency -now trying Prosed.
Seems worst just before and day of my period.

I have questions (of course)....
I'm absolutely terrified of waking to that pain again- wondering how often y'all have severe pain intense pain and how you cope. (I wanted to
impale myself upon an icicle-really..)

Do your sx flare around menstruation?
Does your frequency and pain wax and wane- or is it more constant?
Have you found the "IC diet" helpful?
Last-for now- what do you tell others? I can only say UTI for so long.
I appreciate you folks are out there!
Best, Amy

very short bio: I'm 47; married;have an amazing son on the spectrum; rescue and owned by golden retrievers; I'm a psychologist in PA.

[NancyB]

Dear Jakesmom -

What do they say your diagnosis is? Did you have a cysto-hydro?

NancyB

[ICNDonna]

You are welcome here. I do wonder what kind of tests you had which ruled out IC and what is your diagnosis.

Warm hugs,
Donna

[VickiB]

I was convinced I had IC and fully expected that dx today. and..My pattern doesn't fit and my urgency is different

Like Nancy & Donna I'm wondering then, did you get another diagnosis or simply the determination that it's not IC? I guess I'm wondering, more specifically, what it is about your pattern and urgency that doesn't fit?

I'll give my answers to your questions but I don't know it will be helpful as it seems we are all somewhat different in how, when, and even which symptoms we experience.

I'm absolutely terrified of waking to that pain again- wondering how often y'all have severe pain intense pain and how you cope. I understand that. I absolutely dread my next major flare that I know from past history is bound to hit again at any time. The pain can be so intense that I don't know which way to turn! In the beginning this would happen to me in episodes that lasted anywhere from a week to two months in duration. Some days were slightly better than others, but overall it was ! (I'm way, way better now, thank God!) My main coping mechanisms would include significantly increasing the amount of pure untreated water I drink, using baking soda in that water, taking OTC meds like AZO or Uristat, a heating pad on the bladder, long baths, and rest. In the end one of the things that help me cope the most is simply the knowledge that the flare will pass.

Do your sx flare around menstruation? Actually, mine tends to flare around ovulation.

Does your frequency and pain wax and wane- or is it more constant? For 30+ years it has waxed & waned. Sometimes, -mainly in the beginning, and definitely before I saw the diet connection, there was very little waning in between the waxing episodes.

Have you found the "IC diet" helpful? Absolutely!

Last-for now- what do you tell others? I can only say UTI for so long. This varies depending on how close they are to me and their 'need to know'. If my IC has the possibility of having an impact on people I will tell them "I have a bladder disorder that at times may cause....." (Thinking of a field trip with my artists association and those carpooling with me wanting to know why we will be stopping at every wayside on the trip. -In case they wish to pick another ride)

Vicki

[jakesmom37]

I guess I left urethral syndrome out- I assumed it was assumed b/c I posted under this thread -sorry!
Two years ago I had scans/ultra-sounds/bloods/scopes w/ Dr Hanno-
my sx stopped before the scheduled euro dynamics test. He was 50-50 about IC dx vs. bad, prolonged reaction to UTI. I cancelled the test and was great until this year. (sigh)
This June I had awful pain similar to kidney stones...but no stones were found on CAT scan/MRI,etc.(gallbladder and appendix long gone) I landed in the ER- between the ER and prior tests, lots ruled out: ruptured cyst; ovarian torsion; ovarian cancer ( benign mass); pregnancy (!).... labs good- no infection. Presumed kidney stones -resolved w/o TX. Recent gyn/pap all good. No endo/other gyn stuff.
I had a neuro event last Fall (t’s been a bad stretch)- Iam one well-scanned body....have pictures of most every part. June episode resolved and I was briefly sneak-attacked n Sept (pain 3-4 days around period) and then taken hostage in October.

last month (just before period began) was tx w/antibiotic for presumed UTI (no culture- weekend on-call). Burning upon urination was new to me; urgency/frequency/familiar. culture negative. Labs all ok...no kidney/liver/etc. issues apparent. Second culture negative- given pyridium and pain-killers and name of uro.

So. I had pain/frequency/urgency w/o apparent infection. Until today, I thought that triad could only mean IC. I saw a new uro today. Nothing weird on exam except my screech when he pushed somewhere close to my urethra. No scope today ((I already hurt, he didn't think it necessary today) I passed the "cough and see if anything drops" test. Bladder emptying ok (45 ml left); urine looked okay -labs pending.

I was struck by how much time he took with me....he described "typical" IC progression; difference between my urgency and that in IC. He believes the "shards of glass" was urethral pain. Apparently, my story is pretty typical- though I'd never heard of "urethral syndrome". He suggested IC diet to minimize irritation and gave me Prosed DS. I was surprised my frequency diminished for a few hours after one dose. Maybe there's hope? I'm talking to him Monday- he's a long way away from procedures under anesthesia. Frankly, I like that he's conservative- well, at least I like it today when I'm not in morphine-bad pain. Last week I'd have done anything to stop the pain...

RE "what to say"...for weeks, I've been telling my clients it's a UTI when I need to re-schedule or leave session.I didn't work on days when I couldn't last 20min or had taken a pain-killer. Seems this has no schedule-I really don't like surprises and so don't want my sx to impact clients. I can tell them- this is the same crew who chose to wait 11 weeks while I was out w/neuro stuff. I feel ethically obliged to disclose to new patients that I have this thing that may impact therapy. I wouldn't much like it if my therapist left my session! I hope I can figure out a pattern- menstrual cycle/food/whatever. I really don't like not knowing what to expect. I realize if this worsens I may need to cut back my hours. I love my work and after 20+ years in the field can't imagine doing anything else.
So, I'm okay w/dx- 15Xday (and little discomfort) is manageable for me. I am scared that the sudden pain will return and that sex is forever changed. BTW - we were anxiously abstinent these past few weeks. I'm sad to learn that it's painful (at least now)and dearly hope we'll figure this out...off to search the boards for suggestions on having a sex life despite this stuff. Sorry for this diatribe! Hope this filled in some gaps.
I am deeply grateful these boards exist.
Thank you for being there- Amy

[NancyB]

Dear Jakesmom -

Have you thought about the fact that you are perimenopausal and may be low in estrogen. It can cause the problems you are having. You might want to go and read my thread entitled, "Estrogen as an IC Treatment." You can access it by clicking on my name in the upper left corner, then clicking on Statistics, scrolling down and clicking on Threads Posted by Nancy B and then clicking on Estrogen as an IC Treatment.

If you have questions, feel free to PM me.

Hope this information helps you.

NancyB

[jakesmom37]

thanks, nancy-I'll look into it

[Nonna]

My doctors have basically told me that nowadays "urethral syndrome" is pretty much the same thing as IC and it was often used in the past when the cysto/hydro showed a pretty normal-looking bladder with no glomerations, and the patient's pain was primarily around the urethra and not deep into the bladder. But it seems that with IC things often migrate and symptoms change. My first hydro led to a diagnosis of urethral syndrome and I was overjoyed not to have "IC". I thought I was home free. I've had periods of almost remission, only to have them end with new and very different symptoms, and new diagnosis when they did other cystoscopies (diagnosis of "Marked IC" upon cystoscopy). I was told that urethral syndrome is an outdated term because it's all part of the same syndrome. Nancy

[jakesmom37]

hi -Thanks for your input; I appreciate that sx and dx can change over time.
best,Amy