had my cysto--nothing --now what ?????

[cathyada]

I had my cysto with saline--didnt take long--Im sore in the urethra when I pee now from the cysto--The doctor said--he doesnt see anything wrong. I still burn in the urethra out of nowhere. I am relieved and ticked off at the same time. I have burning out of nowhere--it comes and goes--does anyone, anyone at all have any idea why I would be burning in the urethra??? I know what its not--I spoke to the doctor after and he said everything looks good. I am practically in tears. I am not lying about this--something makes me burn in the urethra--please can someone help me with some thoughts on there point of view--please--Im more confused then ever--thanks Cathy banghead

[dyno]

Cathy, I am sorry for what you are going through. I would hope that your Dr. is trying to find out what is going on if he doesn't think this is IC. If he isn't it might be time to find another urologist. Are you trying the IC diet? That might help some if IC is the problem. Hang in there and keep us posted. grouphug

[cathyada]

can you help me find the diet--I have looked in Donna's page and I dont see it. Thank you Cathy--by the way--what do you think about "prelief" ???

[vm]

Hi, cathy. Did you have a cysto w/ hydrodistension in the hospital or was this just a cysto at the doctor's office? If it was just a cysto in the doctor's office ------ the bladders of most people with IC look normal. It isn't until the bladder is distended under anesthesia that the hallmark IC signs are seen.

Also, some people with IC have bladders that look normal even with the hydro. These people are often diagnosed later with the potassium sensitivity test. You might ask your doc about that option.

Here is a link to the diet information:

http://www.ic-network.com/handbook/diet.html#topfive

Good luck - I hope you find out what is going on. kissing

[cathyada]

I had a cysto where he put a lot of saline in me--I mean lots--he did keep me awake--I also had my urethra dialted again. He said there is NO Signs of bleeding or scars--I took a lot of saline and took the pain. He is a good doctor an I traveled over 2 hours one way to see him. I know that somehow this product called "Prelief" seems to be helping. My concern is why. Thanks so much Cathy

[DanaW]

They add water to the Cysto. in the office. That is normal. But, you must not have had a Hydro/distention because you would not have been able to stand the pain without being out or numbed completely. You need to have a hydro/distention done to diagnose IC. Not just the Cysto. My Cysto. looked normal too. But, the next procedure, the hydro/distention, did not look normal. Please either mention to your Uro. that you want this other procedure done, or a potassium test. He must not be a good Uro. if he thinks he can diagnose you on just a Cysto. Good luck!

[cathyada]

I dont think I would say that my doctor is not good at all. I think he is very good. infact, he is the only one that has worked to help me find the problem. If he has to he will refer me to another uro. at least this uro listens to me and is trying.

[cathyada]

you know--Im angry--saying my doc cant be very good. He has tried with me. what are the symptoms of IC??? Can hydro/cysto be done with a spinal? I dont pee 50 times a day. I have little or no pain in the bladder. I fricken burn in the urethra and its not a uti. how dare anyone make a judgement about my doctor--your not a doctor--he looked-- stretched it quite full and it was uncomfortable--no I didnt get "knocked out" is that the criteria for being in this forum??? seems like everyone is knocked out--why not a spinal--in fact--if anyone knows of the perfect urologist in NY state--let me know--I will go to that uro.

[Dianne]

My urethral pain is totally controlled now with Blue Diamond almond milk (vanilla). You can find it at health food stores. Our local Safeway grocery carries it too. At first I had to drink 4 oz. every 4 waking hours. The relief is immediate-within the hour. Over the counter Azo Standard is a urinary anesthetic that might help you for short term or pyridium. Now I only have to drink the milk 3 times a day. When the pain starts I drink some quick and it's gone in an hour. Good luck.

[October]

Hi Cathy,

I understand what you mean about finding out what's wrong. I have the same burning sensation and had the same cysto done (in hospital but not under anaesthetic). I did go through about 6 months of bladder pressure and frequency prior to my cysto (which is the reason my doctor referred me to a uro even though I'd been complaining about the burning for 3 years). My uro said that based on my symptoms (even though my cysto didn't show anything) he felt it could be IC and wanted me to try a 6 month course of Elmiron and Imipramine. I started on the Elmiron about 6 weeks ago and within a few days my burning was gone - I'm not convinced it is the drug since it isn't supposed to work that fast - I suppose the only way that I'll know for sure is if I stop taking it. I have had some minor burning the last few days but I'm convinced that it is hormonal (which I really believe all this is related to - I'm 44 years old). I didn't get the Imipramine. Now today, my physio told me that she has a woman with burning who only takes Imipramine and her burning has gone. I would really like to know conclusively if I have IC but I don't want to subject myself to the cysto/hydro if I'm feeling well. It is frustrating to say the least but I too have faith in my doctors (both uro and family) and am willing to give the 6 month drug trial a fair chance. Good luck and hang in there with your doctor if he is taking an interest in you!

[ICNDonna]

One of the strange things about an IC bladder is that it can look completely healthy and normal in a regular cysto, without the hydrodistention. It is absolutely possible to have a hydrodistention with spinal anesthesia. Hydrodistention has been a major treatment for me since my diagnosis in 1975 --- I have had the procedure 35 times now and my choice of anesthesia is spinal.

The fact that Prelief helps you could be an indicator that the IC diet could help you. You'll find diet information in the Patient Handbook on this site http://www.ic-network.com./handbook/

I encourage you to give the diet a try. And if I can answer any questions for you, please feel free to ask.

Sending warm healing thoughts,
Donna

[DanaW]

Sorry Cathy if I offended you by saying that. To be honest I was surprised that you got so angry at me. I was trying to help. I just hate to see a person in pain and I guess I just felt that your Uro. didn't explain everything to you. I
was just trying to explain that the Cysto. isn't a definitive way to diagnose someone with IC. There are different degrees of IC and not everyone has pain. I do hope you feel better soon.

[DanaW]

Oh, and, I had my hydro. done by spinal also. Take Care

[vm]

Cathy -

If you had a spinal it does sound like you has the cysto w/ hydro. Please understand that we see a lot of people here who have just had the cysto alone and don't know that the bladder may look fine if the hydro wasn't done. Many of us seek clarification on that so we can try to be helpful.

It sounds like you feel good about your doctor and hopefully he has some ideas for more testing or more conditions to rule out. If the Prelief is helping you then following the IC Diet to reduce acidic foods would probably be very helpful to you.

I get urethral burning when I flare, also. I have bladder symptoms, too, but the urethral burning is a part of IC for me, too.

There are a few people here whose bladders looked fine when the hydro was done and they were still diagnosed with IC. Hopefully some of them will see this and will be able to offer some support or ideas.

Hang in there. kissing You stick with your doc if you feel he is on the right track.

[cathyada]

thank you for all your help. I didnt have a spinal. He looked filled me up a lot and then drained and filled again...he also stretched my urethra, 3rd time in 4 months. The prelief seems to be helping. I dont really get pelvic pain, although sometimes when the burning starts, I have gotten some lower back pain and urgency to pee more. On a good day (and lately they have been good) whew...I have also gotten some pelvic pain--like period cramps--but I had a hysterectomy last Sept, they found a large tumor in me the bigger than a newborn babies head, I am blessed it wasnt cancer. When I go back to him in 2 weeks I will mention the hydro/cysto with a spinal. After having a almost 4 hour operation, Im a little "gun shy" about being snuffed. I will certainly keep everyone posted. I am taking pyridium right now and I am having coffee and I popped 2 prelief. I cant explain the difference using prelief. I thank all of you for your help. Cathy grouphug

[franya]

HI,

Hi I had a hydro about 3 years ago and was dx with IC I was treatred with everything ELmiron DMSO Nerve Block you name it I tried it. I saw the #1 specialist in my area (Dr. Sant) he suggested DMSO w/heparin no luck. I just had 2nd Hydro and i was told there was no evidence of IC!!!! Great ???????? I still am in so much pain and I do not know what to do. They say it is nerve pain. I got to the Doc on thurs. Is there anything anyone can suggest for tests to see what else could be causing the pain. Any suggestions would be helpful. My brain is mush right now. Does this mean I am cured or in remission?:(

[jobobbi]

cathyada i was just writing to let you know that you can get a spinal for a hydrodistension. my doctor offered me one for my procedure. just wanted to let you know:D

[franya]

Hi,

Thank you I got put out for minr and that is the only way I am goinng to do it. In the future. I was at the Doc and she said that even if my hydro was negative IC does not just go away . So I at least know where the pain is coming from still. Thanks a bunch.

Franya