another newbie checking in

[barefootdyke]

i stumbled across this forum yesterday while googling 'ic support'. i spent the next couple of hours reading everyone's introductions and found myself in tears because i felt like i was reading my own story over and over again. so yeah, i 'had' to sign up. thanks for approving my registration.

like everyone else, mine is a long story, and i'll write it out another time (don't have the energy right now), but i just learned about ic last week when talking with a nurse practitioner i used to work with (i work at a hospital). i was telling her about my recent symptoms that my doc was treating as a uti. without hesitation, she told me "it sounds like you have interstitial cystitis". i said 'superficial WHAT?" :lmao:

so of course, i came home and spent all weekend researching it online.

oh. my. gawd. i've never felt so validated. every. freaking. symptom matches exactly what i've been experiencing FOR YEARS.

so i called my doctor's office today and asked them to refer me to a urologist right away. if they don't call me tomorrow, i'm calling again. i've passed some kidney stones over the past couple of years and i had a kidney infection last summer, so with this most recent uti (that they figured it was), they told me if i had one more infection or stone, they would refer me to a urologist. i don't want to wait ... i want to see one NOW.

one of the sites i found suggested i keep a bladder diary, so i started that yesterday. i discovered that between 6am yesterday and 6am today, i pee'd TWENTY ONE TIMES. i knew i had to go a lot, but wow, i had no idea it was THAT often! i was going to do the diary for a week, but i decided one day was plenty. the doc should get the message. :rofl

so anyway ... i'm thankful i found this place. i have a feeling i'm going to be hanging around a lot.

:grouphug:

[dyno]

:welcome: I am sorry you had to find us this way, but glad you did. One other thing you might want to try while waiting to find out for sure what is going on is the IC diet.

Diet helps so many of us gain some control over our symptoms. It is not the total answer but helps. Look for it in the handbook, link in my signature.

Getting an IC diagnosis sometimes takes awhile, so working with your Dr. through the process and bringing him helpful information like your voiding diary will really help!

[crkshnks79]

Hi , Im glad that you found this place ! It helps alot to have people to talk to . Ive have Chronic pain for yrs ( and other IC symptoms not realizing what they were , just kept getting treated for UTI's) and when I found this place , it was like you said " such a validation " I finally felt like I wasnt alone or crazy . I hope you get help at the Uro and start to feel better !!

[traceann]

Hello and :welcome: to the ICN!!! It's stinks we had to meet under these kind of circumstances, but like Jolene said, glad you found us!! I totally identified with your post - when I first found this place, I read the patient stories. There was one that actually brought me to tears reading it because I had all the crazy things going on that she did, and I felt so much relief, I can't even describe it accurately!!!

So, once again, welcome to the gang, don't be shy - jump right on in and I look forward to seeing you around the boards!!!!

Hugs,
Tracey :)

[yvette]

Hi there and welcome....I see you're from MI...You've got some KA urologists in Mich. like Dr. Diokonos and Dr. Peters....heard people rave about them both.
Glad you found us and feel free to post, post, post, ask, ask, ask....we'll certainly to share our experiences and of course, give support :)

[Briza]

Hi:hi:
A voiding diary as well as a pain, frequency, urgency, etc., diary that included how these symptoms were affecting my work, social life, family, friends, and personal relationships were very helpful for me in getting a diagnosis and adequate treatment. Sorry you have suffered for so long...I hope the support you get here helps and that you find adequate and appropriate treatment soon! It may take some time to get it all worked out, but most of us do eventually :) Best wishes!
Bri

[SharonA]

:welcome: to the best support group on the internet. We are glad you found us. Sad that you have a reason to search us out. I hope you find a good Urologist who understands what IC does to people and who wants to help you find what will work for you. :) :) :)

[barefootdyke]

thanks for warm welcome, everyone. :smile tee

no word yet from my doctor's office, so i need to call and bug them again. i planned on doing it today but i was too busy and didn't get a chance to.

this site is awesome ... such a weath of information collected here! :woohoo:

[barefootdyke]

well, i got a letter from my doc's office saying they've scheduled me for the urologist on June 13. i just realized i have plans that day and will be out of town, so i think i'm going to have to move it to another day that week.

but yay! i'm happy to have gotten scheduled. :)

[ICKIRSTI]

Welcome! :hi:

And good for you! Standing up for yourself and being your own best advocate! That is the only way to get anything done in the Medical System today. No matter what we are here for you. Before treatment I was peeing up to 100-120
times a day, or more. With treatment, I am down to about 60-80. SO if there is hope for me, there is indeed hope for you :smile tee Keep doing what your doing, and don't stop until you "know" you are on your way to a more comfortable and peaceful day.

:welcome:

[karen10]

Hi Barefootdyke and welcome to the ICN! This place has been a lifesaver for me. In addition to fabulous support (and some new friends!), there's soooo much information here. Jill keeps us updated on the latest news on IC.

Here's some great articles I would recommend you bring to your doc appt. They are found on this site, here's the links:

http://www.2006icpatientconference.com/rosenbergtranscript.html
Check for Dr. Rosenberg's contact info at the bottom of the article, he's located in Michigan as well.

http://www.ic-network.com/md/OP371a_8_28.pdf

I wish you well! Keep us posted! :)

[barefootdyke]

I'm finally seeing the urologist this afternoon, after having my appointment postponed TWICE. I'm nervous as all get out ... I really HATE new doctors. I've got my bladder diary (that I mentioned previously) and a list of foods that I've noticed cause me discomfort. So I'm ready ... I just hope he takes me seriously.

[SharonA]

I hope this doctor will be able to help you. :)

[Mothergoose]

Ihave just been lerking reading your post, i didn't havemuch to add because you have been given good advice, but let us all know how it goes, there aremore peolpe than you know following your story, I hope your app went well.

[nottoc4]

Hoping for an update after the trip to the Uro Dr.

[barefootdyke]

alas, no answers as of yet. couldn't have any procedures done because of my stupid period that decided to show up two days ago. i'm at the point where i won't have one for months and then whoosh, here it comes. and this was that time. when i pee'd in the cup at the office, it looked like koolaid. seriously. i told the nurse "trust me, there IS pee in there". i was really embarassed.

so anyway, i talked with the doctor about my symptoms (didn't get through all of them ... he appeared to be in a hurry :( ). i showed him my bladder diary, i also gave him the PUF questionnaire that i filled out before i went in (i scored a 24 on it).

he said "the majority of patients with IC do not present with urge incontinence." he said i most likely have "primary detrusor instability". (this is all written on my medical note that he gave me a copy of before i left).

well DUH, can't women have BOTH??? :confused:


so anyway, i'm rescheduled for SIX WEEKS FROM NOW for a pelvic exam, cystoscopy, and a urodynamic evaluation. it's really hard to get an appointment in this place, and it's frustrating that i have to wait so long again. that's the only reason i didn't cancel today's appt when my period showed up this weekend. grrrrrrrrr....

in the meantime, i've been able to identify foods that do trigger the pain, so i'm doing okay. just frustrated that this is taking so long.

[Claredale]

Yes, I do believe you can have both. I don't have incontinence, but I have certainly known people that do! Sorry you are in a holding pattern right now!

So your doctor is going to do the cysto in the office? I really wish you would talk to him about doing it under anesthesia. Yes, I am "old school" about diagnosing IC by the hydro/cysto, but it definitely gives you and the doctor more information on what is going on when your bladder is expanded.

Good for you on getting started on the diet!

T83

[barefootdyke]

yep, it'll be done there in the office. the gal at the desk said i should plan on being there a couple of hours.

[nottoc4]

I started out with Urge incontinence over 2 years ago and have been on meds for it ever since. I went from that to very frequent UTI's and then finally IC. It just sort of evolved.

[barefootdyke]

i've had the urge continence for YEARS ... and it's just gotten worse over time. :(

[barefootdyke]

Yes, I do believe you can have both. I don't have incontinence, but I have certainly known people that do!...

i've been thinking about what he said and now it bothers me ... is this a sign that i might have an issue with this guy taking me seriously about ic? everything i've read EVERYWHERE about ic does list incontinence as one of the issues. sure, it's also a symptom of other stuff, but to tell me that the majority of women with ic don't have incontinence? i don't know ... maybe the fact that i'm pms'ing is making me overly sensitive, but the more i think about what he said, the more i'm getting worried that he won't bother looking for ic next time i go in.

[nottoc4]

If at anytime your gut tells you this Doc isn't taking you seriously,go for a 2nd opinion. I wish I had done it sooner.

[SandyRN]

You could have pelvic floor dysfunction AND IC. Urge incontinence can be caused by PFD and can sometimes be controlled, or made better, by physical therapy. I'm not sure why your doctor came up with that diagnosis out of the blue without even looking at you, but I would mention PFD to him and tell him you have all the symptoms of IC. Also, is he doing an in office cysto or one in the hospital where they do a cysto and a hydro? Sometimes they can't tell if you have IC from an in office cysto and they can misdiagnose you. Just a thought and something for you to question your doctor about.

Hope you find some answers soon!

Sandy

oh, and btw, nice to meet you!

[barefootdyke]

he's going do all of the procedures in the office ... but they have a rather large building and i was told that i'm going to be seen in 'three different areas' of their building and that i'll be there at least two hours. he said that he's going to insert a catheter and insert some fluid, blah blah blah.

thanks for the info re: the pfd, i'm gonna research that too.

[barefootdyke]

i had my appointment today ... FINALLY. it didn't go as expected. ended up only having a cystoscopy done. need to go back in three weeks for a follow-up catherized urine culture and then in three months for another cystoscopy and the urodynamic evaluation then.

without going into way more detail than i'm in the mood to type out (i seriously did not have a good day and spent quite a lot of time crying to a friend afterwards), his note says:

"...findings of abnormal mucosa with multiple yellow and submucosal nodules consistent with follicular cystitis. urethral orifice these are visualized with clear effux noted. evidence of exophytic tumor."
he has given me one week of antibiotics (cipro) and then i need to take macrodantin until i go back in december.

when i get my composure together, i'm going to ask to see a different doctor in the office. this guy completely dismissed my comments AGAIN about the pain i feel, stating again (in a VERY stern manner) that "women with IC do not experience incontinence. the american medical journal states this. he may be a very good doctor but his personality and bedside manner SUCKS. :mad:

[Mothergoose]

Sorry things didn't go well, I never understand the we will test but lets wait 3 mons to do it, like you came in to see doc the first day you had problems. Sometimes people ned to be hit with sledge hammers to get it, and for what ever reason some docs get how much this hurts and others don't. I would go see someone else mentioned you were unsure about this guy, if you have that feeling follow your gut. I have done this and I told the new doc (insame office why I wanted to change, he under stood why) things went way better with new doc.