Newbie here, my symptoms are different

[ConnieSue]

But I can read various similiarities in many of the posts. I am reading everything I can find on line. Some contridicts, but most agrees. I had thought I had IBS only, but after several tests now, the Uro thinks it's IC and is planning the scope and extension tests. He plans to do that at his office without sedation?! Some have said it's best done with? What has your past experiences with this suggested? I am a 56 post menipausal wife and grandmother. I can see that I ignored alot of the symptoms and just toughted it through. I would spend hours curled up in great pain, and just pee little amounts at a time. my urine tests always had small amounts of blood, but now moderate. I only pee once or twice a day, but sometimes once I pee the pains and spasms begin and lock me down for hours or days. Sometimes my guts tightened into horse shoe mode...:( I was on Xanax for the sleep and aniety that developed. Been in counseling for 4 months, but was determined to find this needle in my ever growing haystack of misdiagnosis. I found the diet for IBS and adherred to it and it helped. It's similiar to IC diet but more strict. Unfortunately i have lost weigh that got me hit with a eating disorder by drs, but when they did a diet watch with me, I was eating twice the amounts of food, but low fat and no caffeines. removed all triggers. Now this disorder...the tests triggered 4 days of pain, and I am dreading May 9. They have put me on Detrol la. i am scared of it. If I am only voiding 2 times aday,,,am I going to back up and get worse? I admire and respect all the stories I have read, they have helped me understand more compassionately and deeply the road no one here CHOSE to travel....we need each other, information is the best path through these good and bad days.
Thanks and so glad to have found this site.
Connie

[ICNDonna]

I'm very glad you found us. Have you read the information in the Patient Handbook? It's at http://www.ic-network.com/handbook

Do you know the name of the test you will be having? Is it a cystoscopy? If what your doctor plans to do is to just view the inside of your bladder, that is frequently done in the office with no anesthesia.

However, if the plan is to distend your bladder (called hydrodistention or over distention), then it definitely needs to be done under anesthesia. I suggest you telephone your urologist's office and find out the specific name of the test you are scheduled to have done. You can then look it up in the Patient Handbook and know what to expect.

Donna

[Sarojini]

:welcome: to the ICN!

Many patients have just pain, rather than frequency and urgency associated with IC, so you're not that unusual. I am sorry you have been diagnosed with this disease.

However, I think that you should ask for your hydrodistention to be done under anesthesia. The procedure is extremely painful, and I worry that you will not be able to take the procedure without some kind of anesthesia. Please discuss this with your doctor -- my personal feeling is that doing the hydro without anesthesia is barbaric and unethical.

In addition, you may want to read our patient handbook at http://www.ic-network.com/handbook. It discusses various treatment options; you should be informed on each. Detrol LA alone may not work for you especially since frequency is not your major symptom. You may benefit more from other treatments, but this is something you need to discuss with your doctor also.

[ConnieSue]

I had a procedure done on last Thursday where they filled the bladder with sensors inside to determine when I was full and how the bladder reacts when I pee and when I hold it. The Spasms began after the first part and was going on while the device was still measuring. I had a terrible time and have had an episode everyday, but ...TODAY! yeah!..so far..:) The Dr. said he would be putting some water inside on May 9 with the scope. I think I should call and make certain, because altho we all have become generals in this campaign of pain and survivial, I don't want to go through any unnecessary pain. I also had a serious itch from the betadine they used to clense the area. How are you doing? Do you follow the diet. And is it as difficult as I am reading, finding triggers is very individual? Had it not been for the IBS web site of Heather's, I think I would have taken my life in Dec. I purchased a cemetary plot and left my husband because I had just spent 10 years caring for him through a lifte threatening illness, that he has now overcome, taking care of my Mother who died when this first hit full force. But finding sites where everyday folks discuss this and offer encouragement and ideas has given me the hope of keeping on...:) :angel:

[dyno]

If he is planning on doing a hydrodistention with water, I would highly recommend that be done with anesthesia at a hospital. As Donna said, if it was just the scope to see inside your bladder with no distention that can be done in the office.

If this Dr. insist on doing a hydrodistention in the office, I would seriously think about finding a second opinion.

[lindy lou]

Hang in there and have patience. It is difficult to deal with at first with so much new information and since each person is different, it makes it all the more difficult. It has taken nearly nine months to find a treatment plan that works for me and makes me feel almost normal. A combination of diet, meds, instillations, in-office therapy, home exercise, yoga and meditation have finally reduced my pain and symptoms to a "new normal" for me. And we are still "tweaking" the meds. Come here with your questions and for support; there is a wealth of experience from people just like you who have struggled through the period of pain and not knowing what is wrong to finding what treatments work best. Only time and a lot of work with your health care team will give you an answer. Hopefully it will be soon that all these facets of your IC story start falling into place and you have some relief. All of us have been there.

Linda

[vm]

Definitely call to check. I know that during a plain old cystoscopy there is some fluid put in, but if he is planning to overdistend it with a lot of fluid you will want to have anesthesia for sure.

[ConnieSue]

I am not savy on how to respond to each post personally, so am testing this one to see if it comes up under your personal responses, I do appreciate all the advice and will try to find other threads that already have tlaked about this, so I don't wear you out or take you donw painful memories. Thanks for the encouragement!