In-office cysto results

[teelag]

Hello all,
I have had bladder pain sporadically for the last year with all negative urine cultures, with the pain and frequency of these episodes much more in the last 6 months. My gyn sent me to a uro to consider IC. Antibiotics and Ditropan XL didn't seem to help. I started doing a modified IC diet before I saw my uro and felt much better.

My uro did an in-office cysto about a month ago to check things out (I was having no symptoms that day). As soon as he started filling my bladder it got very full of blood vessels and he said it looked very irritated. He told me to tell him when it was too painful and I stopped at about 300 cc. He also said my urethra was very inflamed and constricted smaller than normal. The urethral tissue looked "shredded" instead of smooth. He said it is likely IC, but wants to make sure by ruling out other things. I have had all negative gyn cultures and urine tests this entire time. The real bummer is I have had almost daily bladder pain ever since this cysto, with some days really bad and others pretty good.

Has anyone else had urethral issues on their cysto? Is this part of IC too? I would love to find out that this is something other than IC, but diet changes (no coffee, acidic stuff) has helped me.
For the past month he put me on Levaquin and then a low-dose Bactrim and I see him in a week. These have not helped at all.

Sorry so long...just trying to make sense of all this and see if anyone has had a similar experience.

[MakinIT]

Everything else was a mess but my urethra was cool...however, I know other people do have problems with urethras.

Tracey

[Sarojini]

My urethra was okay, too... just my bladder was affected.

However, I remember reading someone else's post on here -- they said their IC was mainly in their urethra and bladder neck. Maybe they will see your post and reply to you...

[Anita4]

Yes I have had the same problem. I have been taking pyridium and that helps greatly.
I also had a cysto w/hydro and that seemed even more.
I now have a steady stream, I am able to empty my bladder and not have it burn or feel like I still have to so when I am finished.
I hope you can find some relief soon.
Grace and peace.
Anita

[classics]

My gyn thought I had a diverticulum of the urethra, but my uro checked me and said that I felt burning when he pressed at the base of the bladder. My burning pain never felt directly in the urethra, but rather in the glands below it. At least that's until I was examined vaginally and felt burning where he pressed.

[teelag]

original poster here....Interestingly enough, before the cysto I never had pain in the urethra upon urination. I think I would localize the pain to low bladder area, just had that feeling of pressure and burning like I really had to go but not a lot would be in there. But after the cysto and urethral dilation, I find that the pain is both bladder and some urethral. This is so driving me crazy...feel like I have to be a doctor myself trying to nail down these symptoms so the "real" doctor can make an educated guess. Thanks for the support!

[liznazz]

a lot of my IC symptoms are urethral. However, quite a few years ago before being dx'd with IC, I had a very narrow urethra . The doctor performed a urethrotomy ( they cut the urethra and widen it to drain better). That helped me through many years. It's painful for about a week or two, but eased my symptoms. This time around, when I had the cysto/hydro, my new urologist said that the urethral surgery performed years ago still looked good, but unfortunately, My symptoms are still located there. I found that taking Celebrex helps me a lot in that area and helps control the pressure and uncomfortable feeling. I hope this helps. Liz

[Iris]

Hi, I had problems with my urethra evidently, found this out when I had my cysto/hydro performed. The urologist at that time dilated my urethra, said it was very narrow. I had several surgeries at the same time, so recovery was a little longer for me. Do not know if that helped with my pain, it has not been so intense as it was, so maybe that was some of my problem, adding to IC. Hugs Iris.:hi: :grouphug: :flower:

[MakinIT]

As far as becoming a "doctor" goes, L.O.L....we all have gone through that, because the diagnosis is so hard to make and symptoms present so differently in different folks. Remember, it's not their pain so they are not motivated like we are to find out the info, so, in a sense, we do become experts on the disease. It is up to you to read, read, and read some more...write down questions, information you found out, and cite anything you come across so they can read it too. They are the technicians regarding the disease, we are the heart and soul of it.

Best to you all...Tracey

[Sarojini]

I liked your comment, "They are the technicians of the disease, we are the heart and soul of it." Fabulous. :)

But sometimes, in the dark of night, it feels like they're the technicians, and we are the EXPERIMENT...

[Audrey Rose]

Let me add:
Keep a daily journal of voids, pain, diet, meds and other symptoms. It really helps you understand what effects what and what helps the most. I now add activity and feelings to my daily journal to be discussed with my psychiatrist. She is helping me see how my repressed feelings and depression increase my bladder pain and frequency. WOW!! She is so right!!
I seem to be dragging that notebook everywhere these days. It really helps me and my team (URO, PCP, GYN and Psychiatrist) keep organized and informed about what is really happening in my body. And all the data gives us trends to determine the effectiveness of the various treatments. Sometimes I am surprised by the facts. I may think I am doing better or worse than I really am. You can't argue with facts. Anyway, that is what has really helped me.

BTW, I have frequent urethral symptoms and have since the IC stuff began 1 1/2 year ago. When it is really irritated, soaking in a hot tub helps me. And when it just burns and burns, ice is the answer.