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amylr
03-23-2009, 10:44 AM
Hello everyone,

As the title states, I am new here. Im probably one of the youngest members on this forum, if not the youngest. I am 18 years old and currently a college freshman. Last Wednesday, I was diagnosed with IC after a cystoscopy with hydrodistention. Since I was asleep for the procedure and very groggy afterwards, I dont really know much except for what my mother told me. She stated that the doctor said I do have IC and she (my mother) also was pretty sure the doctor said I had ulcers. They had intended on taking a biopsy, but decided that since I am so young it would be very unlikely if anything came back and would just make recovery a bit more extended.

I guess this is the part where I give my background information, right? Well, lets see here...where to start... Ive been having bladder problems since I was about 16, but never told anyone. I kept it a secret because I thought people would certainly think I was losing my mind. Heck, even I thought I might be! However, when I met my boyfriend things changed. We have a long distance relationship so its very hard for me to visit him. On one particular trip, I had a horrible episode on the car ride home where I needed to go every 10-15 minutes. Of course, everyone was wondering what was wrong with me and why I needed to stop so much--frankly, they were getting annoyed. At that point, which was just last September, I broke down crying and explained to my mom that something just wasnt right. She insisted I visit the doctor, so I did. After getting good blood work results, she suggested I go to the gynocologist also. At one point during my Senior year of high school, I had such bad pelvic pain that I began to black out during school and physically couldnt walk. When my mother took me to the hospital, they found a complex ovarian cyst and a simple ovarian cyst. We figured that the pain was just caused by the cysts, popped some pain meds and I went along my way. My mom thought maybe I had more cysts that were pushing on my bladder, causing me problems. Obviously, I didnt. The day before going to the office I had that same exact crippling pain after my morning college class, but I also was urinating every 5-10 minutes. I figured I had just drank too much water that day. I used to hardly every drink liquids because of the bladder problems I was having, so I thought maybe I just had a little too much water. It seems to me that I get really bad episodes right before that time of the month.

Anywho, we went to the gyno who said she couldnt help me but recommended I see a urologist. So I did. Now that I know a bit more about IC, Im guessing the crippling pain I was having was never actually caused by ovarian cysts but was just an odd coinsidence. When I was at the urologist, I picked up a pamphlet on IC and my mother and I filled it out together. Automatically, my mom said, "Hey, this is you." When we went back in to see the doctor, she asked me about 5 questions and then said, "Well, were going to send you for a procedure." She didnt really give me any information, but Im pretty sure she knew what she was looking for even before I told her what was going on, especially since I had told her that when I was at the gyno's they gave me antibiotics for a "bladder infection" because I had blood in my urine-- of course, the culture never grew and they called to tell me I was taking the AB's for nothing.

So basically, everything moved very quickly--no xrays, no kidney scans or similiar things. I had the hydrodistention done, which I was told would really really help, but it hasnt or atleast not that I can notice. I feel like Im urinating just as often as I was before and Im having some mild pelvic pain as well--sort of like if someone is sucking your insides with a vacuum. I go back for follow up appointment in late April, so I guess Ill just have to wait and see what comes next.

Honestly, Im just relieved that Im not crazy haha! I think the hardest part for me was making up excuses for why I couldnt ride in the car for more than 15 minutes or why I needed to dash off to the bathroom 4 times in the same hour. Atleast now I have a real explination.

ETA: Im not sure if any of this is related, but I also have GERD and OCD/depression. Oddly enough, I used to be on Paxil which I have heard is used in mild doses for IC patients. Also, I tend to wake up in the middle of the night and notice that my pelvic muscles are tensed up, does anyone else have this?

mish
03-23-2009, 11:26 AM
Hi and welcome. I'm fairly new here myself. I also have heartburn issues and depression. And I had my first experience with kidney stones and an ovarian cyst a couple months ago.

This is a great place, tons of information. I've learned alot. And extremely grateful to find others that have the same issues with frequency. I knew something was wrong, but I had no idea what it was. I just assumed it had something to do with having such a big baby...lol!!

Oh, and just to let you know.....my heartburn issues are gone since I started eliminating things from my diet. Who knew?? LOL!! I'm taking amitriptyline 20mg and MSM/Glucosamine. And following the diet. It's really helped alot.

mish

jaisa
03-23-2009, 11:40 AM
Hi Amylr and Welcome to the club:welcome: we'll have to think of a cute nick name for you as the youngest ICr I've heard of. It sounds like you have a great Mom which will prove to be a huge blessing for you. It also sound like just not having to hide things and worry all alone must be a huge relief for you.
There is more info on hydrodistention on this site I think it helps some people but not others and it may not help right away --I'm not sure. First and foremost get a copy of the IC Handbook and learn the IC diet --the diet makes a big difference also I suggest you look into Preleif (helps with the acid in food) check ICN Shop. Has your MD given you a treatment plan?Sorry don't want to slam you with too much at once . Just be proud of youself for getting help. This site is a great place to find info or to just vent --Again welcome and Good Luck!! Jaisa:)

amylr
03-23-2009, 11:50 AM
Thanks for the warm welcome! My parents are both wonderful and very helpful with everything, which is a great relief in general. So far, I have no treatment plan, medicine plan or anything along those lines. Basically, I was released from the surgi-center and told to come back the last week of April. Im assuming they want to take some time and let everything heal up. Im on that time of the moneth currently, but its almost over and I seem to be having more pain than I was having before the procedure. Thats probably to be expected though--just annoying haha.

Ive been doing alot of research and still feel a bit confused, just because my doctor didnt really explain things to me. Although, I guess its not every day that urologists deal with people my age.

Just for my own curiosity, does anyone else experience these things:

-Clear urine during "flares" (only during though, not normally)
-Pain that feels like a suction
-Debris in urine
-Extreme sleepiness (this one is a killer for me! Im assuming probably because I get up so often during the night)

jaisa
03-23-2009, 12:25 PM
I definitely become more exhausted during a flare.Sometimes it feels like my insides are falling out --is that what you mean by suction? In my case I think it's Pelvic Floor issues which many ICers seem to have.--J

dyno
03-23-2009, 03:45 PM
Hi, I wanted to add my welcome. I could have just about written your story myself without the ovarain cyst. I was a teenager when diagnosed at 17 and had problems for several years before that.

I know how you feel about the the rides in cars and all the bathroom stops. I once had to leave a German class field trip early because of my IC. I didn't know then that was what is was but do now. I also went to visit a friend in the 9th grade and was suppose to ride the bus home and couldn't because of the freq. potty stops I needed.

I could go on and on with what I went through in high school for what I now know was IC.

My suggestion until you get into the Dr. for your followup is to look in my signature line and follow the link to the IC diet. That helps so much of us so much.

Also you may still not be feeling the benefits from the hydro. Your bladder has to heal from the procedure and maybe in another week or so you may be feeling better.

We are here for you, there is a ton of information on here. Lots of ideas of treatments to try. Work with your Dr. and see what you can come up with. :)

leelee88
03-23-2009, 05:02 PM
Hello and :welcome: I am glad you got a diagnoses..

When you get a chance I hope you take a look at the Patient Handbook. There is a lot of helpful info in there.. Also Have you checked out the IC diet? It can really make a big difference in many IC patients..If you need anything please do not hesitate to ask..

SharonA
03-23-2009, 05:33 PM
Adding another :welcome: to the boards. :):):)

luvsterriers
05-13-2009, 04:28 AM
Hey amylr..I sent you PM earlier...

Welcome to the site. Someone mentioned about heartburn, I too also have acid reflux disease. :rant:

Venus26
05-13-2009, 07:37 AM
Thanks for the warm welcome! My parents are both wonderful and very helpful with everything, which is a great relief in general. So far, I have no treatment plan, medicine plan or anything along those lines. Basically, I was released from the surgi-center and told to come back the last week of April. Im assuming they want to take some time and let everything heal up. Im on that time of the moneth currently, but its almost over and I seem to be having more pain than I was having before the procedure. Thats probably to be expected though--just annoying haha.

Ive been doing alot of research and still feel a bit confused, just because my doctor didnt really explain things to me. Although, I guess its not every day that urologists deal with people my age.

Just for my own curiosity, does anyone else experience these things:

-Clear urine during "flares" (only during though, not normally)
-Pain that feels like a suction
-Debris in urine
-Extreme sleepiness (this one is a killer for me! Im assuming probably because I get up so often during the night)


Hello! I am new here and also just had my cystoscopy in April. I know hiw you feel about not having things explained to you! I was not told anything!! Which landed me right back in the hospital a few days later. Had I known more, I would have not wasted so much time over there. I experience all that you listed!! I also feel like this twisting and pulling inward pain on my left lower pelvic side. It hurts so bad at times I cant sit or stand up straight. I can only stand/slouch. I look pretty NORMAL doing that!!! (sarcasm at its finest) lol

I have noticed that if I, lets say, put a load of laundry in the dryer, I am breathing SO heavy afterwards! As if I ran a marathon. If you stop talking to me for a few minutes, I will also most likley fall asleep on the couch. Im just exhausted ALL THE TIME.

I hope you feel better. I think its so sad that you have to be suffering through this at such a young age! YOu should be worrying about so many other more important things right now! <3