Hi there new here, and have some questions. PLEASE HELP!!!!!!

[allie13]

Hi there, my name is Allie, (I just turned thirty last October) and I was just diagnosed with having IC (so that's what the Doctor seems to think). I'm a lil confused here; I saw a Urologist back in Jan. 2004, and he ran all kinds of X-rays, tests, scans, MRI, etc. He also did the cystoscopy, and said everything was fine with me after the test was over. So now I'm thinking, " well here I am again!"
It started to get bad again around Thankgiving. So I went to my local Doctor, and she gave me a cat scan of my abdomen thinking it was my back, or my kidneys since I have had so many UTI's in the past. Well it came back that it was all fine, so she then did one of my pelvic, it came back that I had a cyst on my right ovary. I asked her what to do for the pain, and she didn't really have a clue. I then called the Urologists I had seen in Jan. and had him look at my scans. He ruled out it wasn't my kidneys. With that, he reccomended I see a OBGYN.
I did and he said it wasn't my ovaries. He even checked my urine, and again I had blood in it (not visible). He put me on Macrobid (I think that's how to spell it), and it didn't do anything. I have SO MUCH pain in my back, it even comes around to both my sides. It does not hurt or burn when I pee. I have been taking Tylenol with the Macrobid, but before that, I was taking Vicodin, and that didn't always help. I called the doctor today to tell him I'm not feeling any better, and he thinks I have IC. I'm all confused because if the Urologist said my bladder, and kidneys were fine how can this OBGYN say I now have IC? Does anyone have any advice for me? I am willing to hear from anybody!

[Betsie]

Hi allie,

So many new folks here tonight. Welcome and good luck along this jorney. click on this link, i am off to bd, but I will pass along an earlier thread...

http://www.ic-network.com/forum/showthread.php?t=12618

To another newbie, this is what i offered, so I hope it helps. :)

[theclownster]

Welcome Allie to the ICN. Not all urologists will agree to an IC diagnosis because there is not one specific way to diagnose it. Which usually means that they try every alternative first. It may be a good idea to put doctors in touch with each other so they can confer as medical professionals. Additionally it's probably a good idea to get a second opinon from a different urologist. Not all urologists are experienced in treating IC. Whatever you have, it's important that you feel confident in the doctor that you are seeing.

One of my primary pain symptoms upon diagnosis was lower back pain. I seldom have lower back pain now - which is so nice. I also went through a whole bunch of tests to make sure I didn't have an kidney or other bladder related problems. Do you have a primary care physician who can help you figure this all out? It sounds like some communication between your doctors might be helpful.

Hope you find some relief soon!

Hugs~
Jennifer

[allie13]

Hi,
Thanks for the advice. May I ask what your Doctor gave you for the pain or what kind of antibiotics your on? I go tomorrow for my OBGYN to talk to me more about IC and to see what he's going to put me on.
thanks so much and take care,
allie

[ICNDonna]

Diagnosing IC includes ruling out other problems, which it looks like has been done for you. A cystoscopy done in the doctor's office will not diagnose IC. I know when I was being diagnosed, my bladder appeared to be normal and healthy. However, when it was distended under anesthesia, the IC was apparent.

I do agree that seeing a urologist is a good step for you. In the meantime, I suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook and put yourself on an IC diet to see if that helps.

Sending healing thoughts,
Donna

[vm]

One reason your other docs may have said your bladder and kidneys look fine despite your possibly having IC is b/c all those scans and even the in office cystoscopy wouldn't necessarily have shown the signs of IC.

When someone has a cystoscopy with hydrodistension they are put under general anesthesia and their bladder is filled and filled with fluid. Once the bladder is stretched in that way THEN they can typically see the signs of IC.

I hope your visit today with the OB/GYN goes well.

[Laura Bay]

Hi Allie,

I too had the terrible lower back pain and it was one of my main symptoms. I also had the cystoscopy done in the doctor's office and it came back inconclusive. It was only when they did it under anesthesia that I got my diagnosis. I saw several urologists to get different opinions. I wish you luck and if you have any questions don't hesitate to ask me.

Good luck.

Laura

[Dixiefireball]

these ladies gave you some great advice i strongly recommend you look at the icn handbook and get started on the I.C diet.

I just truned 30 Oct 15.

ask all the question you need to we are here for you we do understand and care.
sending you hugs and lots of prayers
Rhonda

[trytosmile]

Lots of good advice above Allie. I was almost two years before they finally diagnosed as IC. Went to alot of specialists and had ALOT of tests to rule out all other possibilities. Having said that they did suspect it was IC and was trying specific IC treatments during this 2 year periods. One of my many symptons includes alot of lower back pain. Some self help tips, massage, heating pad, light yoga stretches, warm bathes.

I had a cystoscopy's done and the first one they did, showed an almost perfect looking bladder other than the lining was thin, but no lesions etc. Yet other cystoscopies look the complete opposite. I believe I've had 5-6 on total over the course of 6 years. Has your urologisit talked of a "potassium sensitivity test". I had one done by the second urologist that I went to. (been to three of the best in Canada) It is a test done to help in the diagnoses of IC. It isn't fun, I won't lie but doesn't take long to do and there are no after effects of the test. A few moments of pain and away you go.

I hope you find some answers soon. Maybe a second opinion would help. Like alot of IC sufferers you may have to see several doctors to find somebody you are comfortable with and someone that is understanding to your needs. It can be frustrating. You know there is something wrong but finding what is the tough part. We know our bodies the best. Keep us posted on your progress, this is a wonderful place to be for information, support and people to talk to that KNOW YOUR PAIN.

[SharonA]

Hello Allie and :welcome: ... :)

[allie13]

hi everyone,
I jus want to take this time and say thank you all for caring so much and giving me advice its so greatly appreciated.
thanks so much, :)
My visit today went ok I guess, he put me on Pyridium, has anyone tryed this or heard of it, and has it helped?? The one thing he told me was it may take up to 4-6 weeks to notice any results, which I didn't really like. He said to come back and see him in 6 weeks and if I'm not better then he will send me to a Urologist. That's all for now, thanks everyone and take care!!!!
allie

[theclownster]

HI Allie! I'm glad your visit went okay. You might want to check with your doctor to see if it is okay for you to take pyridium for long periods of time. I've been told it's not good to stay on it for an extended period of time (you might even be able to ask a pharmacist). Pyridium turns your urine a different color (orange I think) so don't be alarmed. There is also a different version called pyridium plus (which I have found to be more effective). The orange urine will stain things (such as clothing) so be careful. I have also tried prosed which turns it blue or green. I have samples of both meds and only use them when I'm in an extreme flare (maybe once a month).

You asked about meds. I'm not on any narcotic pain meds, but am taking elavil (a low dose antideppresant used for pain), atarax (antihistamine), and ditropan xl. I also take birth control pills that help with symptoms. The combination of those meds, prelief, and avoiding trigger foods - keeps me pretty comfortable most of the time. Ditropan is similar to detrol (which I tried several times) which helps with the frequency. Some people with IC have difficulty with these meds because they can cause urinary retention. Unfortunately, it's a bit of trial and error with the medications until you find the right combination of meds that will work for you. Even though we all share similiar symptoms, we are all different in how we respond to various treatments. The time period where you are getting diagnosed and trying to figure out the right meds for you - is the most difficult period of time. I alot of different meds before I found treatment that really worked. I think it would be really good for you to get a second opinon from a urologist who is knowledgable about IC.

Let us know how your are feeling on the detrol. May you find relief soon!

Hugs~
Jennifer

[Sarojini]

Just wanted to :welcome: you to the ICN and say you've gotten some great advice... I also think the next step for you is going to be the cysto with hydrodistention. You can read up on that in the patient handbook (you were given the link in another post so I won't repeat it here ;) ). Unfortunately, IC tends to hide from doctors until they do this test or a test called the potassium sensitivity test, in which they put a potassium solution into your bladder to see if they can induce symptoms (IC bladders are usually exquisitely sensitive to potassium because the lining of these bladders are usually degraded, and the underlying tissues are no longer protected as well).

Good luck finding your diagnosis!

[allie13]

Hi,
I was reading about some disability things with having IC, is anyone getting SSI or how do you go about getting it?? I am unable to work right now, and would like some help with this, can anyone help me??
thanks again,
allie

[traceann]

Hi Allie! I just wanted to add my welcome to the rest! I take 100mg elmrion 3x's a day, 5mg Ditropan 3x's a day and 25mg vistaril at bedtime.

For pain, I use 800mg Motrin as needed (but I try to space them 8 hrs a apart, I say I "try", lol) & I have some Ultram (tramadol) just in case more extreme pain killers are needed-- haven't had to use them yet thanks to a lot of home rememdies! I also use a heating pad, stick on heat pads (like Thermacare) when I need to be "wireless", like for sleep or travel.

Diet diet and more diet (my biggest tool in my routine), Uristat or AZO Standard (otc pyridium, only as needed, it's an analgesic for the bladder/urethra), for urethra/bladder burn I will either take 1 tsp baking soda in a big glass of water (be careful if you have health issues that lots of sodium can aggrivate!) or a few Tums. I also have some filled water bottles in the freezer (they fit between my legs perfectly - kinda half sitting on it -- for icing) for when my urethra spasms and just won't respond to heat or anything, and an cold pack.

This I have learned in just a couple short months from being around all these wonderful people, and I have to say, I am now very confident with my IC tool-kit that I can handle almost everything. That's all the advice I have to offer along with my welcome and glad you found this place, I know I was!!

Hugs,
Tracey :)

[hazellin31]

Hello Allie. I'm new to this as well, but I wanted to add that I have also been told by my doctor that Pryidium is not good for long term use. Also, I have cysts on both of my ovaries. I was put on birth control to shrink them. Maybe you could discuss this with your doctors. I know this isn't much, but I hope you are feeling better!!

:grouphug: :grouphug: :grouphug:

[cinder]

:welcome: Hi Allie, I Was Just Diagnosed With Ic Too And Understand How Confusing It Can Be. My Advice Is Have A Cystoscopy With Hydrodistention Done In
Surgery, That Is One The Most Accurate Ways Of Finding Out For Sure. Ask
Your Primary Doctor Who He Thinks Is The Best Uro In Your Town Or Surrounding Area. I Just Started The Ic Diet Today After Being In Pain And
Having A Major Flare From My Surgery 2 Weeks Ago. I Also Just Started Taking Prolief And Elimon, Just Take A Deep Breath And Know That You Have A Support Group Here That Understands Better Then Anyone Else. I Haven't
Found Anything That Helps My Back Pain , But I Have Only Tried Tylenol And
Ultrum. If You Need A Friend Please Email And Maybe We Can Help Each Other
Thru This. Your In My Prayers
Cinder

[trytosmile]

tracey...

What are these "thermacare" products you talk of. I haven't heard of this in Canada but wondering if sld be looking for something else. Wld work wonders on long car trips for me and I love the frozen water bottle idea. Will get some in the freezer tonight, my b/f laughed his butt off when I told him of this home remedy but then replied..."well if it will work"

Thanks

[traceann]

Oh hey Jen no troubles! I get them in the pain reliever section at my Kmart or Walmart, or any drug store, etc. The Thermacare patches come 3 to a bocx I believe from reading the boards here, Playtex makes them, and Windwalker told me about the Well Patch brand, and that they are a bit cheaper. You could probably ask a pharmacist or sales clerk for that matter, as to if they are available. As soon as you open the package, the air activates them to heat up, and they have sticky stuff on them, the menstrual ones, you stick to the inside of your undies, right over your bladder area, etc. I have heard (also here on the boards) to check often, if you are wearing tight clothes, a couple have been burned from it holding in too much heat. I have never had that problem with them. Always good experiences with them.

Oh yeah, my boyfriend thinks it a hoot with my water bottles! I first tried it with non-frozen ones as we were on a car trip, and no relief in sight, I had my guy stop at a convenience store and buy me a couple of bottles of water to drink, so I used on on the crotch, and drank the other, lol! I was very comfortable the rest of the way home! And I was close to the point of asking him to find a motel so we could stop for the night, cause I was miserable! For Christmas, I decided to freeze a couple, and I "sat" on one (plus a bedpillow) right form the start of the journey, even though I felt fine, and I was good the whole trip. Just a few minor troubles hours later on the return trip, but nothing one good emergency pee-stop couldn't fix!! LMAO! (We had been on the raod making the visiting rounds since 9 am, troubles didn't start til about 11:30 pm on the last leg of the trip)

Hope this helps!!!!

Hugs
Tracey :)

[trytosmile]

Tracey...

Tried a couple drug stores here in Canada and nothing yet, may just jump in the car and cross the creek to the States and get over there. Will likely have more luck but then that means Victoria Secret too .... :dance:

Boy do I need the water bottles today. Pain so bad when voiding and after causing dizzy spells and bleeding. :headbang: The water bottles do help with the pain. Better mark the bottle "do not drink" or my other half will take from freezer, let thaw and drink. Now wouldn't that be funny...hum I'm ticked at him right now ..........revenge is sweet ?

Off to the tub and epson salt, oh what fun on a Friday afternoon. I'd rather be playing pool and chugging back brewskies... :dizzy:

[traceann]

Oh yeah, I agree, I suck at pool, but I do love to go karaokeing.... I am usually found at the local watering hole on Fridays with the girls for our troublemaking...LOL I might go out tonight, it's a bit different now, not drinking...I have stage fright so bad it's horrible! At least a couple of beers would calm me down!! Maybe I'll try a whiskey on the rocks, (boyfriend is on different shift now, so he'll be up here at about 8, so I don't have to drive, YAHOO!), I had one for New Year's eve with a few prelief chasers, lol, and did fine.

I can understand the water bottle thing, my man thawed one of mine out last weekend and drank it, even after I told him it was my "special" bottle, lol. He didn't care, I made sure he filled it back up and stuck it back in the freezer for me!

Oh I miss Victoria's Secret, been so damn broke with all the meds I'm on, I haven't been able to order anything from them in ages. I just get depressed when I get a new catalog and throw it away, although, boyfriend gets bummed cause he can't look at mine, men....ugh.

Hope the pain troubles take a hike for you, I hate pain!! I would rather have to pee evey half hour, than have pain, well, that's if I HAD to have one or the other. Would prefer none of the above, lol!!!

Hugs, and keep me posted on your quest, lol,
Tracey :)