I do have IC

[Omaklackey]

Hi,
I was just diagnosed with IC. I was diagnosed with stage 4 endometriosis in april 2009 and in sept. 2009 I had my hysterectomy with both ovaries gone due to the endometriosis. In recovery after my hyster I started having horrible problems with feeling like I had a UTI. I had always had the frequency and pain if I held it to long. I ended up in the ER once on a weekend and they tried to cath me to get a clean catch. I screamed and bawled and they finally gave up. I left after I proved I could still pee and was sent to the PCP. She got me in with a urologist who did a cystocopy. It came up clean but when he did the urodynamics I wasn't definitely not emptying my bladder all the way. He says not to worry about it and to just take more time to pee. what? So I figured that was as good as it was going to get until my surgery 2 weeks ago. I went to an endometriosis specialist who is also a gynurologogist. She said it sounded like IC and did a partial hydrodistention. She also found some kind of bladder defect which she fixed and then did only a partial hydrodistention and saw IC. So my post op is next week and we are discussing bladder installations etc. If catheters hurt me that much how do I get a bladder installation? I admit I'm pretty concerned about it

Currently I am on:
Hyophen
hydroxzine
Tramadol
Flexeral

[Barbm]

Note from ICNDonna: The following are only suggestions --- what works for another IC patient may not work at all for you.



1. try Elmiron. this is like lotion for your bladder
2. Add amitryptilline.25 to 50 mg. This will block the pain signal that goes from bladder to brain
3. Add ranitidine 300mg daily. This is an H2 blocker and stops the degranulation of mast cells that causes the pain.It is commonly used for heartburn and can be obtained over the counter.
4. Follow the ic diet carefully
5. Do vaginal stretching and pelvic physical therapy.. You can find some great books for this on this web site.
6. Get some narcotic pain medication for severe pain
7. Do all the above and then be patient.. YOU WILL GET BETTER BUT IT WILL TAKE TIME!

[Omaklackey]

I'm on ranitidine and pantoprazole already for stomach issues, and zyrtec, hydroxizine and flonase and my night stand looks like an old lady lives in my house. I have two drawers of medicine that I take. Its kind of frustrating, but If I could find one that worked it would be awesome! My doctor did give me tramadol for pain and flexeral for the pelvic spasms. I can't take amytriptiline. I was on it for six months after my hysterectomy and it was awful. I'm really scared of the bladder installations though which is what she wants to do. Anything down there is unbelievably painful!!

[astone0611]

Omaklackey, I personally do the bladder instills & will tell ya the first couple times my urethra hated me!!! Maybe your Gyno/Uro might perscribe you a topical lidocaine to numb the area before insertion. Couldn't hurt to ask.
I would say that after several months of self-catherization, it does get easier and only takes me 5mins to complete the whole process, pain-free.

I hope you find relief.

[Omaklackey]

Is there a thread or something that gives good ideas for what to ask, etc at my appointment? Any advice would be appreciated?

[curlycue]

New to IC

You will get better it just takes TIME and that is the hardest part.

[Toto]

I'm on ranitidine and pantoprazole already for stomach issues, and zyrtec, hydroxizine and flonase and my night stand looks like an old lady lives in my house. I have two drawers of medicine that I take. Its kind of frustrating, but If I could find one that worked it would be awesome! My doctor did give me tramadol for pain and flexeral for the pelvic spasms. I can't take amytriptiline. I was on it for six months after my hysterectomy and it was awful. I'm really scared of the bladder installations though which is what she wants to do. Anything down there is unbelievably painful!!

Oh my gosh. I cracked up laughing when I read the first sentence of this post. Not that there's a defining "old" age...but as for me...I have so much medicine in my closet it looks like I'm on death's door. LOL... Sorry...have to chuckle about these things once in a while.

Omacklacky...I agree with the suggestions Barbm gave. Perhaps writing some of those things down that she suggested would be useful. If you are not emptying your bladder you might need some PT to help with the muscles surrounding the bladder areas. When they are tight/constricted (from stress, etc...) they can cause issues with emptying the bladder. I have that issue and am in PT. (of course you may have different issues but it wouldn't hurt to ask)

I hope things get better for you.

[Omaklackey]

Dr. Mosbrucker does want me to get PPT but I would have to pay for it myself and the nearest one is 2 hours away. I haven't decided how to do that...
And She also suggested coming here for help. I have been making a list about things to ask. I also have a notebook I bring with me every where with all of my issues/charts/notes etc. I was wondering if there was a thread with things to ask though?

[Toto]

Maybe someone here's knows of a thread.

That stinks that PT is 2 hours away. There's no other option??? You might consider it twice a month if you can afford it. You could at least get the exercises and tips from the PT.

Hope you get other answers.

[Julie B]

I am so sorry you have been having problems with endo and IC. I don't do well with catheters myself, so I would be just as nervous as you. Hopefully, they can use lidocaine on the catheter...

The good news is, as people have already said, you CAN and WILL get better eventually.........Sending you understanding hugs.....

[Barbm]

Omaklackey, Buy the book "Ending female pain" by Isa Herrera. You can do the therapy at home.You can buy from here.

[Omaklackey]

Thanks for the suggestion BarbM, I will definitely order that one! I had a good appointment today. I did get my first instill and I was shaking like a leaf by the time she did it because I was so terrified of the pain. It wasn't super bad, but doing it myself should be... interesting! The used a ped cath, and ordered an even smaller one for me. My Urethra is major sensitive and It hurt like fire when I finally peed out the instill an hour and a half later. We are staying at my mom's for the next few days. I'm not sure I'm brave enough to try the instills here. I may wait until I'm home. Kind of an awkward thing to do 1st time, NOT in my own home. Dr. Mosbrucker is so awesome. She asked me how I was doing, and how my pain was and how many dilatid I had left and gave some suggestions about the bowel issues I've had and then she left and came back in and says: "you should have more Dilatatid, you don't realize how much work we did, you need it" and handed me a script. How cool is she!

[curlycue]

prayer req.

and God is in control, thanks

[Julie B]

I am glad that your first instill went better than you expected. Did the instillation itself help?

[Barbm]

It sounds like you have found a very supportive doctor! That is wonderful! You will get better !!!!!