I think I have IC, but not sure

[mopsy]

Hi. In the past couple of years after intercourse I have had what felt like a UTI, but my UAs didn't show bacteria. I took antibiotics anyway ( I insisted the MD give them to me) and the symptoms went away after 2 weeks. Since then I haven't had anything like this.
About 1 months ago I bought I vibrator;) and these same symptoms began. Again, I thought it was a UTI, so i took a round of antibiotics and used the vibrator again,t hsi time making sure it was super clean ( I had washed it the first time too,but this time I was super anal). And again,t he symptoms began. This was about 2 weeks ago. SInce then, I have seen a urologist who poked around on my stomach and looked at my urethra (visually, no scoping etc). He said that everything looked ok and that I should call him again if I had pain. Well. Ifelt ok for a few days and then yesterday the pain began again ( I had felt fine from Friday until Tuesday). Last night was the worst it had ever been and I took some pyridium (the stuff that they give you wehn you have a UTI that turns your pee orange). This seems to help....
These are my sypmtoms (generally speaking I forgot to list them in the beginning).
Supra Pubic Pain (aching, like cramps- for the women in the house)
Pain around the urethra
Some pain upon urination
Some urgency ( everytime I have to go I feel like I have been holding it for even and my stomach aches)
Some relief after emptying my bladder but still, the general suprapubic ache continues...
Anyone who has been dealing with this for a while have any thoughts.
Thanks so much. I'm glad I found this place!

[Sarojini]

Hi mopsy,

Welcome to the ICN. :)

Let's see.... looking at your list of symptoms, I can totally relate. Sounds a lot like my symptoms. Ugh. I really hope you don't have IC.

I think you need to go back to your urologist (or a different one if this one has been less than helpful) and describe these symptoms in detail. You might have to have some tests to rule things out, but it's important to get an accurate diagnosis.

Have you checked out our Patient Handbook yet?

Keep us posted on how you are doing!

[mopsy]

Jen, What were your symptoms. What kind of tests should I request?
What has your 'journey' been like?
Also, where can I find the patient handbook?
Thanks
Renee

[Sarojini]

Hi Renee,

Ok, I see someone's already given you the link to the Handbook... sorry about that, I thought I'd put it in my original post but don't see it there... oops :(

Anyway, my IC started out with frequency of urination (it got to be 30-40 times a day at one point) and urgency of urination (sometimes I'd urinate, and then 10 minutes later I would feel like I had to pee so badly that I could barely walk or talk or think of anything other than how I was going to get to the toilet). In fact, during my worst flares, I have periods where it feels like I really, really have to pee every second of the day.... and then I go pee and only about four drops come out, which makes me mad and frustrated, which starts the cycle again...

Anyway, these symptoms are what originally sent me to the doctor... however, during the months when I was searching for a diagnosis, I developed other symptoms, like pelvic pain (sometimes it's crampy and throbbing, sometimes it's "sore" like the muscles in my pelvis were somehow overworked, sometimes it feels like someone is taking a knitting needle and poking me in the bladder from all sides including up the urethra, and sometimes it's a combination of all of them --- luckily, I do have pain free days too, so I can deal okay :) ). When it gets real bad, the pain radiates to my lower back, crotch, bum, and upper thighs. Also, occasionally I'll get some urethral burning... this happens most often after sex and feels like a bad UTI, but it usually isn't.

Okay, as for my "journey", when the symptoms of frequency/urgency got really bad in December, I went to my gynecologist's and told her I though maybe I had an infection because I couldn't quit peeing. She tested my urine and said that there was nothing showing up, but she gave me antibiotics anyway and sent urine for culture. That came back negative but I was still totally uncomfortable... she then sent me to see a urogynecologist who was one of her partners. This doc tested me for an infection, gave me more antibiotics, and made me try a drug called Urispas, which was supposed to help with the frequency/spasms. It did nothing, so back in there I went. She brought up the possibility of IC. I did all my research and decided it was pretty likely this was the problem... however, the doc gave me Pyridium, Urised, Detrol LA, and Prelief, and said to try them each for a while. Helped a little, but not a lot...

Fast forward... that doctor ended up cancelling three appointments with me in the space of one month. This was AFTER telling me to go off all meds because we were going to do a study called "urodynamics" (this test is for checking bladder function). I was miserable for 2 weeks, and then she called and cancelled the urodynamics test too!!!

So I did what any self-respecting girl does in situations like that... I called my husband in tears. ;)

Hubby, through his contacts here in town, found me another urologist. This guy called me that night from home on his own time and talked to me for half an hour even though it was Friday night... he was pretty sure I had IC, and prescribed some pain meds and told me to start taking the Detrol again. He saw me in his office at 8am the following Monday, did a pelvic exam, and scheduled a cystoscopy with hydrodistention (a technique for diagnosing IC) for the following Thursday.

That Thursday was March 4 of this year... I was officially diagnosed with IC that day. My uro told my husband while I was still under that it was no wonder I always had to pee... my bladder was a bloody, scarred up mess that probably didn't like any urine touching it :rolleyes:

Anyway, I'm dealing... I did a bunch of DMSO instills but decided to quit. I have been taking Elmiron and Atarax for several months, and Ditropan as needed. Also, I take Darvocet for pain when I need to (although I've had to have that bumped up to Percocet a couple times)... and when I burn after sex, Pyridium helps.

Ok, that's my story... I'm sticking to it!! ;)

Hope it helped!

[mopsy]

Thanks for sharing that with me:kiss:
How well do you feel now? What has helped you the most? Do you obey "the diet?" I have started the diet today. Too bad too, I love wine (have this great bottle I was planning to bring to a freind's tonight, but alas, I can not).:mad:

I have been taking pyridium which helps and have a call into the urologist (as of this morning) and am going to ask him to do a cystoscopy- although i am not excited by the idea in the least.

But I hope I get relief soon.:pray:

I'll probably be on here in the coming days until I determine if I do indeed have IC.
Thanks again for the support:thumbsup:
Renee

[Sarojini]

Hey again,

Well, I do okay now... I am just now having a flareup, so I've had pain/frequency/urgency since Monday night, but I think I might be getting better now already. As for what helped the most, well, taking Atarax at night before bed has helped me get more sleep now. I used to be up 5-9 times a night, and now it's 0 to 2 times! That was a big improvement for me. I think the DMSO treatments did do some good, too... but my urologist seems to rely very heavily on them as a first line treatment, and that is extremely inconvenient for me at this point (taking time off from work all the time to go get a bladder instillation was tough, for one thing). I'm hoping the Elmiron will kick in a little better... it can take 6 months or more to really get going.

I try to follow the IC Diet, but I do cheat from time to time... I had tomato sauce on my pasta the other day, and that is contributing to my current flare. I love wine too... I find that if I am feeling okay to start, and then take 4-5 Prelief first, I can do two glasses of white wine. Red, however, forget it... no way...instant bladder pain even with Prelief! I'm hoping someday I'll be able to drink it a little again, but for now, it is on my "absolutely not" list :(

Ok... just one more thing... you will likely need to have the cystoscopy done with hydrodistention -- this is done under anesthesia at the hospital. They distend your bladder with fluid and look at it, and this will reveal glomerulations/pinpoint hemmorhages that are indications of IC. Be warned that the regular kind of cystoscopy that urologists do in their offices (with you awake) may not reveal IC. IC bladders can look completely normal in the office, and the IC only appears when the bladder is distended.

Good luck!!!