Interstitial Cystitis????

I am still having so much pain after my hysto (Feb. 7, 2001) and my doctor tried Lupron to help clear up any endo. left after surgery. This did not help the pain at all. He refered me to a specialist (gyno) and I saw them Tuesday. She thinks that I might have Interstitian Cystitis (a deteration on the bladder lining) I have blood in my urine, but no infection. They did a KCL test today, where they but some soulition in my bladder via catherder. If I had pain, it wqs a positive test. Well... it hurt, but only because it was cold and I had a catherder.and they said it was a positive test. Im really getting frustrated!! I really dont think that this is the problem. The top two symptoms are frequency and urge of urination. (like getting up in the middle of the night between 1-10 tomes and not being able to hold it) I do not even have these symptoms. All I have is constant abdominal pain! The new dr. feels like this is the only problem and is not exploring any other options. Does any one have any suggestions? or have you gone thru this...help! Please reply! ~Becky

Hi. I understand what you're going thru. I've been having a bad time with my bladder too. The uro-gyn dismissed me and told me I need a urologist. He saw some swelling in urethra and blood clot (I occasionally have a spot of dried blood in urine, but mostly burning pain). I went for a CAT scan of abdomen today to rule out tumors, stone, etc. I've already had pelvic and renal sonograms.

personally, I hate urologists above all others. They try to tell you how you feel. They keep trying to tell me I have f requency when it doesn't bother me a bit. I tell them - no, it's the pain I'm worried about and where is that blood coming from.

Good luck. By the way, the uro-gyn believed in IC; the urologist says it's not a disease but a blanket term to describe symptoms. I think the urethra is the cause since it looks swollen or something - but the stupid doc wants to do more tests - why? urodynamics. I suppose I'll do it and then that's it. They can give me pain meds to get me through bad times.

Hey you guys, I feel for you...I really do, I am post op since 3/00, and I am still struggling with the bladder problems...for me, it has settled into lots of frequency and I don't think I can have an ounce in my bladder without knowing about it...

I had the urodynamics test last year, didn't tell me a thing that I didn't already know and it was an expensive test...that would be my last resort test if I had to do all over again..

hope you both start feeling better soon..bj

I have IC.Mine was always pretty mangeable until I had my June hysterectomy. Go to IC network and ICA websites. They will give you all the info you need when going to a urologist.I know you are fightened and do not want to believe you have this disease.Trust me.I don't want to have it either. It is frequency/urgency with pain or can be anyone of these things. There is usually no infection present. If you are put on antibiotics you are probably just making things worse. Lot's of doctors are clueless. It is important to watch what you eat and cranberry jsuice is jsut abuot the worst thing you can drink.It is basically that the lining of your bladder is being destroyed and anything acid burns it.The only time it fels good is when you actually pee because no urine is in there. Diet really helps. And there are drugs that can help too. I used to only have pain and the hystercomy casue d me to have urgency and frequency.Estrace helped that as my urethra was atrophied.I also now have bladder and rectal prolapse which is actually casuing infections and urine retentions for me. This was caused by the hysterectomy and is not common for IC. It is common to get IC after any surgury. Ther are lots of drugs that can control the symptoms and I urge you to go to these sites and read up on it before seeing a urologist. So may people run from doctor to doctor because so much isn't known about it.You will be you own best resourse. Please, read up on the medications and treatments. The base thing I did was find a pan clinic.I wish I did that before I had a hysterectomy or I wuold have not had one. Now I have prolapse and another surgery to face and my IC is worse than ever. No one told me my IC might get worse or that I might have prolapse to face. Please, read up On Interstitial Cystitis.Put it in a search engine.They can give you a simple potassium test in the office to see if yo have it.Read Dr. Parson's interview. Start on the diet right away.It is hard but I didn't used to do it and I feel so much better now.It helps so much.
It sucks but it is not going to kill you and some people resond very well to drugs.Good Luck.
Kathi

Thanks for replying to my message~ the reason I dont think that I have IC is because I am not having any trouble with frequency or urge. But I do have a lot of pelvic pain, constantly!! I had my histo for adnomyosis and endometreosis, but they did not remove any endo, adhesions or scar tissue, I am guessing because they did it vaginally. I think that it is what is causing the pain. I want them to do a lap. at least to look around to see if there are any other problems. I dont mind the surgery, as long as they find out what is wrong. But they are not even considering any other posibilities besides the IC. I have looked up IC on many sites and still do not think that the symtoms apply to me. What do you think?? I am open for all advice

I have IC. I was diagnosed 23 years ago. The definitive way to get a diagnosis is witha cystoscopy done under anesthesia. They will do bladder biopsies. IC affects people in different ways. Some only have pain, some just have frequency and some have both. I would go to a uro who treats patients with IC. Some uros just are not that well versed about the disease. I would also press for a lap if that is what you want, you probably wont be satisfied till you get one.

It used to be they did a hydrodilation under aenethesia to diagnose this but now they can do a simple test where they fill your bladder with pottasium and then with plain water.You will feel pain with the pottasium and not the water if you have IC. I like you wanted to believe it was just something that could be surgically removed.Like the previous post said it can be either pain or both or one or the other .Before my hyst.I only had pain.Now I have both.Be very careful before you start delving into more surgery.Surgery just makes IC worse if you have it. I am sorry for your pain. I di dhave endo and adenomyosis but my main pain was always from the IC.It is so much worse becasue I had the hysterectomy.I regret having it. I wuold rather have pain than frequency although with it.It makes it so much worse.Have the simple test frist before you have a lap.Be well.
Kathi

So confused. CAT scan showed nothing. So I have pain and now back pain too, speck of blood from time to time. Uro said I could do another type of CAT scan or pelvic MRI because a tiny kidney stone could be in ureter. But he didn't really sound like this was necessary. Said come b ack if you see lots of blood and we'll do another cysto. Can't wait!

What are you guys doing for pain? I was given Pro-Sed and am trying today for first time. Could not sleep a wink all night.

I don't know what to t h ink any more. I will go back to some doctor - which one? - to discuss I guess. I asked uro, What about the Pain? and he said, What pain? (!!!!) Don't they ever listen? then he said I should come in again (sure: $$$$) because we couldn't discuss on phone. GEEZ.

Me again. Finally got uro-gyn to come to phone. Told her of latest findings. Now she thinks it's urethral syndrome which is rarer and harder to treat than IC! Sounds good so far. There's one doctor in the area who specializes in it. First appt. is in 2 weeks so I'm signed up.

Asked about pain meds - she says nothing taken orally will help. that was terrific news as you can imagine. Luckily, pain has quieted down for the moment. But I am so scared that it can come back at any minute. What a way to live. I'm trying the IC diet I got from the website - if it helps for that, maybe it will help me too. In the meantime, maybe I can lose a few pounds.

we gotta hang in there and check all this stuff out - no choice. We can't live in pain if there's an alternative, right?