Sorry I haven't been around lately..

[Dee74]

I've been in a neverending flare.. my endo and cysts have also been acting up really badly. Not to mention the darn IBS as well. The bladder pain is horrendous lately. I haven't done anything different, and have been doing the diet except for my half cup of coffee in the morning.

I'm going back to my uro this afternoon.. I'm really really bloated. I've gained 5 lbs in the last 2 weeks for no reason at all. I look like I'm 5 months pregnant. So, my uro is concerned that something is up with my kidneys. I'll probably have to have some more tests run. Not sure what's up with that.

All I know is that the Elmiron doesn't seem to be helping at all yet and the pyridium that I take every now and then isn't doing ANYTHING for the bladder pain anymore. I had to quit taking the Ditropan. It started to dry me out WAY too bad. I would wake up in the morning and I wouldn't be able to open my mouth because it was practically sealed shut. My eyes burned because they were so dry, and it wasn't helping my bladder spasms at all anyway.

So now I'm just on the elavil and elmiron now. I don't know what the next step is.

Anyway, I just wanted to update everyone.. I haven't fallen off the face of the earth. I just feel like I want to at times. :headbang:

[dyno]

Hi Dee,
I am sorry you have been having a rough time. I know for me even a half cup a coffee would tear my bladder apart. Have you given any thought to trying to do away with the coffee completely and see if that makes a difference with your IC?
Good luck with all the tests, I will be thinking of you.

[Dee74]

Yes I have.. and I will. I've gradually cut way way down on the coffee. I also smoke and I want to quit that as well. I'm going to have to give up them both up and I think I will have to do it at the same time since they go hand in hand with me.. in the mornings at least.

I have a question.
Has anyone ever had an issue with pyridium causing serious back pain? EVERY time I take it, within half an hour, I get a horrible pain in my back where my kidneys are. It's like a very hard cramping type pain.. it only lasts for maybe 5 minutes tops. I don't know what on earth it is, but it's every time I take the pyridium and ONLY when I take it. I can't find anything on it that has that as a side effect. But I know that it's the pyridium..

Any ideas?

[ICNDonna]

You are wise to quit smoking and coffee --- either could be contributing to your pain. I know it's not easy to quit (been there, done that) but it's well worth the effort.

Sending warm encouraging hugs,
Donna

[twiggy]

I am sorry you are feeling rotten. I have many of the same problems and, sometimes, it seems like an endless mess. But, eventually, things clear up and I get a little relief. Have you tried elavil? It has made my life so much better. Hope you are feeling better soon!

[traceann]

I sure hope you are feeling better soon! Enough is enough! LOL The only trouble I ever had once with the rx for pyridium, was I threw it up almost as soon as I had swallowed it...understood first-hand how it numbs and got a lovely look at an orange tongue! LOL Mouth and tongue were quite pain-free (too bad there wasn't any pain to begin with, ugh), lmao! :) Took me years before I could come around to taking again...only had that happen once, but it only took me one time to throw up too much wine to not touch it for 20 years...

Ugh, I can sympathize with the "ditro dry-out", my mouth can get so dry that my throat hurts, and my contacts can be unbearable. I tried skipping it once and discovered that it takes appx 30 min for it to kick in, in my mad scramble to get it back in my system!...that was a failed experiment...ack. :( My skin is even taking more of a toll this winter with it, then it ever did normally in the past...my hands look terrible. (not that they were any great shakes to begin with..lol)

So, that said, I do hope you are feeling better soon, and the Uro has some relief to offer you somehow...keep your chin up!!!!

Hugs,
Tracey :)

[Dee74]

Well, I went in to the uro yesterday.. of course I didn't get to see HIM (as usual), but I did see a wonderful assistant this time - much different than the previous assistant. He was very nice, very helpful, and actually asked ME alot of questions. I really like this guy, possibly even more than my actual uro!

As far as the urinalysis yesterday goes, I do not have an infection, just alot of blood as I always have. They are culturing it though so I'll know for sure soon enough.

He feels as though the endometriosis is VERY likely to be on my bladder. I have alot of swelling in my abdomen and either the endo is on the bladder or it's everywhere else and swelling and putting pressure on my bladder - of course exaggerating the flare even more. It's exactly a week before my period is due, and he said that that is the time that everyone who menstruates experiences a hormone surge. If you have endometriosis, the tissue swells and creates more discomfort.. even if it's not on the bladder itself. So, that makes sense to me.

He agreed that it was wise to stop the ditropan since the side effects were so bad and it didn't seem to make a difference at all. He sent me home with some samples of Detrol La.. hoping that it eases the spasms. He also wants me to stop the pyridium since apparently my kidneys are not agreeing with it. He gave me a prescription for Urised to try instead. He also wants me to try to take the Elavil twice a day (once in the am, and then at night) during bad flares around this time of the month. I'm not sure yet if I can tolerate it since it pretty much makes me loopy and knocks me out.

I have to call my gyno today and set up an appointment so that we can get the laparoscopy scheduled as soon as possible. The sooner I get on treatment for the endo, the better. I just hope I don't have to take the Lupron route (gosh I HATE that stuff so much!!). We're all 99% sure the endo is back.

Wish me luck.. I think, and HE thinks, that once I can get the endo under control, my bladder will be a little better.

[Sarojini]

So glad you had a good visit :)

I'm glad you were given Urised to try -- I had that for a while and found it did help some; it will turn your pee blue instead of orange, but the dye (methylene blue) is a bit gentler on the kidneys, so I hope you get better results with that.

As for the Detrol LA, you may have better luck, but remember it is also an anticholinergic antispasmodic drug and can also have side effects similar to Ditropan, so watch closely. However, some people tolerate one better than the other and I hope that is the case for you!! :)

Good luck with the endo... it sure sounds like you're having a REALLY rough time... I'm so sorry, but I hope it can be controlled soon.

Sending hugs and support