Undiagnosed and looking for answers...

[fragileclover]

Hi. :hi:

Sorry in advance for this insanely long post!

I am 23-years-old, and stumbled upon this site a few days ago. I was doing a search for 'intermittent vaginal/urinary pain', and got several hits related to Interstitial Cystitis, which I had never heard of. In reading the symptoms, it sounds quite possible that I may have it.

When I was in my Junior year of high school (6 years ago), I started noticing that every once in a while I would get a burning sensation after using the bathroom, which would then last for roughly 5 minutes after. Then it would stop. This pain didn't occur every time I urinated, and not even every day...but WAS recurring. My mom has quite the history of UTIs, but I knew from seeing the constant pain she was in before going on pain relief and antibiotics each time (she gets them so frequently that she has to only call her doctor, who will then call in her prescription), that I was not suffering from a UTI.

In the last 1.5/2 years, I've developed urinary frequency, to the point that the people closest to me, particularly my boyfriend, will joke about it (as do I). I am constantly going to the bathroom, even if I haven't had anything to drink. When we took our Disney World trip in December, his whole family was in on the joke, because I literally had to stop at a bathroom each time I got off a ride. When this happens, I usually only pee a small quantity. If it's a small quantity, my urine is usually yellow...but if I have a full bladder (usually only upon waking...of if I've been forced to hold it a while), it is clear. I started keeping track of how many times I pee a day, as I noted it was a question on a IC related test:

Monday: 17 times
Tuesday: 15 times

So far today I've gone three times, and have only been up since 9:30 (and have only had half a cup of water to take my antibiotic for my ear infection). Based on those numbers, it appears I go roughly once per waking hour. I DO NOT typically wake up during the night to pee, although, since I typically don't go to bed until 2 am and wake up at 10, and often get up once to pee around 7, I guess that does count, since it is in the middle of my 8 hours.

I tend to pee more often if I do a lot of sitting, like today. When I am at work, standing for several hours, my frequency isn't as great.

The sensation I get when I need to pee isn't neccesarily 'pain', but just a very mild form of the sensation one has when their bladder is completely full and they've been holding it. I could go pee, go back to my room, and have that sensation no more than 5 minutes later. This may be TMI, but I HAVE to use the bathroom right before sex, because if I don't, I won't have enough time before that sensation returns, and then it is impossible for me to orgasm (I still climax, but the typically sensation of orgasm is replaced with an intense urge to pee). Speaking of sex...it is sometimes very uncomfortable or I will have a burning sensation when I pee afterward and some pain. Other times, it is great. My boyfriend is slightly less endowed than average (due to a congenital defect also related to the bladder), and I am thankful...I always get the distinct feeling that if I were with a 'larger' guy, that my discomfort would increase.

Anyway, the reason I ended up here is that in the last couple of months I have had two pain episodes that really stood out. Once was a couple of months ago. I was at work, and randomly started having severe pain down there...I went to the bathroom, and it was only a small amount and it BURNED. I went back to work (i was the only one working), but was almost in tears I hurt so bad...this went on for a long time...close to an hour. I had never had pain last that long, so I called a friend to come in and work for me, while another friend brought me Uristat. I took the Uristat, then headed to Patient First, convinced I had a UTI. By the time a doctor saw me, however, the pain had already subsided. She prescribed me an antibiotic, but called me later to tell me there was no sign of an infection. I finished the prescription, but never had any more pain.

Just the other day, I had a similar episode, but this one only lasted about 15 minutes (usually when I have urinary pain, it will only last a few minutes after going)...unlike the last one, this pain was triggered by using the bathroom.

Compared to a lot of posts, my pain and discomfort seems incredibly mild (i.e. I am not constantly in pain), so I wasn't sure if this could be IC or not. I know that there are different levels of severity, and that not all symptoms are always present, so I'm fairly convinced it is. Any opinions? Should I go see my GYN first, and see what she says...or seek out a Urologist? I haven't been to the GYN since I was 14...9 years ago. :tsk: I'm not big on doctors (I have a very mild form of Aspergers...a high-functioning form of autism, so I have some sensory issues with doctors offices and instruments). As a side note, I would be quite relieved, even if the issue is chronic, to be diagnosed with IC, and not something vaginal or uterine...I've lived in enormous fear for years that my pain was related to something that would leave me infertile!

Thanks for sticking with me...I'm glad to have found people going through something similar! :)

[jenjen05]

I'm sorry you find yourself in so much pain, fragileclover. I'm 24, and it is hard at Disney World lol


From what I understand a "normal" person pees 8 times a day. So by that standard, you are definately having frequency issues. Then, your bladder being jostled around on theme park rides (some of us don't have a problem with that, by the way) aggravated your bladder and made you go after every ride. Your bladder definitely sounds like she's not a happy camper.

I have the same sleep to pee schedule/ratio as you.

Sitting I build pain/frequency, standing I'm A LOT better.

I experience the same thing with sex as well. I have to go before hand (which is a good idea anyway) because if I don't it's like my bladder's engine died and needs a jump start to pee again. I personally have very little pain with sex as long as my overly well endowed boyfriend takes it slow and doesn't hit Ms. Bladder or Ms. Cervix. And yes, we refer to them like that.

Now let me get into the bulk of your post. First, the antibiotics your taking for your ear infection might be making your bladder angry and contributing to your current frequency. Everyone on these boards is different. Some people tolerate some antibiotics while others wouldn't dream of taking them for the frequency/pain they'll cause.

Next, usually upon waking your urine is darker than it is during the day because it's been sitting in your bladder for so long. Or that's what I understand. So it's interesting to me that your urine is clear upon waking.

A question... did you take the Uristat BEFORE you went and gave your urine for the urinalysis? This might have thrown off the result.

You do sound like you have IC. The majoirty of my bladder pain and frequency started in September 2008. I was diagnosed in January 2009. I had graduated from college in May 2007. I'm sharing these dates with you because it was only after being diagnosed in January 2009 that I realized that even when I was in college 2003-2007 I was having frequency issues I simply dismissed as having been a college student who drank a lot of water and sweet iced tea. Now, looking back, I realize this was probably the beginning of my downward spiral. In fact I remember saying to my best friend Amber, "I always have to pee." When being asked if I wanted to go with her to the bathroom at the cafeteria. :-(

Please see a urologist. You can get a list of some in your area by contacting the ICA at www.ichelp.org Also, try and begin following the IC Diet: http://www.ic-network.com/diet/ You should find relief, though not total relief, from giving it a try. But do remember to stick to it, don't falter (I know its hard) and go back to your old ways of eating and drinking or the diet will be no good to you. Be informed by reading through this site some more about treatment options, drugs that can help, etc before you go to the urologist and be an informed patient. You'll find the doctor generally has more respect for your situation if when offered, say Elavil, you say "I heard that may be very helpful" in response.

I wish you the best of luck. If you are diagnosed with IC, I'm glad you have caught it early before your pain progresses. With treatment, you'll do much better than those of us with moderate/severe IC on a daily basis. Especially if you follow and stick to the diet.

XOXO

[SharonA]

Seeing a Urologist is a very good idea. Taking into consideration what you said about having difficulties with doctors and instruments, I am giving you a link to an area on this sight that talks about the different ways of diagnosing IC. Please pay special attention to the PUF questionnaire. It might give you a better understanding about if your symptoms could be caused by IC.

http://www.ic-network.com/whatisinterstitialcystitis/#diagnosis

I also suggest that you read the Patient Handbook. You can find the link to it in my signature.

The IC Diet has already been suggested to you. Please take a look at it. It has helped most of us discover if we have diet triggers. The link to it is also in my signature below.

I am so sorry that you are going through so much. I hope you are able to find out what is causing your symptoms. Always keep in mind that a diagnosis of IC does not mean that your life is over. Many of us have gone one to live happy and productive lives despite having IC. There are so many medications/treatments out there that can help with the symptoms.