I've been off line a bit for several reasons. I am having bladder issues and being tested out the kazoo. Today they determined it isn't neuropathy causing the problems and Thursday they will do an MRI to see if something is putting pressure on the bladder. It feels to me that the broken pelvic bone is putting pressure on it, but not sure. Tonight after doing a lot of research, I begin to think I may have Intersital Cystitis. Sure fits the description. That is something I will bring up when next I see the doctor. In the meantime, some testing to be done. Also found out that they can't do the surgery to do the bladder sling thing on me because the Sjogren's has done a number on the vaginal area. Between lack of hormones and the Sjogren's dryness, the doctor said she was afraid it would never heal. It's in such bad shape. So I have to use Premarin Cream and oral Premarin for a few months to see if the area will improve enough to do surgery. I'm a work in action right now.
Just been missing all of you. Tired of doctors again. I'll be popping in and out.
Billye

But, if it is cystitis, it may be treatable relatively easily--given, of course, the Sjogren's limitations.

Feel better. (That's an order. Maybe I can scare your innards. )

Silverlady,

It is interesting that you posted this and I am sorry IF it is IC. I just wanted to say I have been using Premarin Cream for about a year now and it has made such a difference! I do not have IC but have had a total hysterectomy. I have also been in pelvic floor PT. You didn't say what your symptoms are but I think I might know. Anyway, I had my annual exam with my ob/gyn yesterday and he says things are great. Oh, I do have have some MINOR prolapses as well. But he says between the cream and PT...things are not only getting better but the pelvic floor is becoming stronger as well....more supportive. Anyway, I was just glad to hear that I can STOP the Vivelle dot patch and just stay with the cream. It is amazing what that stuff can do! Oh, and I should have clarified...it was my Urogyn who suggested PT and it is my ob/gyn that started me on the Premarin Cream. And I realize you are speaking of Sjogren's I am just hoping the cream helps! And I had all the testing done too; not fun but at least I got the answers I needed.

Silverlady---There was a time when I had symptoms that seemed like IC. I went on the IC boards and read about it, and felt terrified. But then I found a book by Larrian Gillespie--You don't have to live with Cystitis, and she connected bladder pain to low back pain and nerve pain from the lower spine.

I found that attending to my back significantly decreased the bladder symptoms. It might be worth looking into.

Its good to see you check it - although hearing things are so tough again is furstrating.... on the IC - my gyno just told me she wants me to see a specialist about this too - she is pretty sure I have it - from my gastroparesis group I've found many members with GI issues for what ever reason (in our case autonomic PN) deal with it also.... some of them have been able to regulate with diet, etc.... and say pain control is a major component too.... LJ - thanks for recommendation on book...

Feel better

Hi. I am sorry you are dealing with so much. It may be different but Roxie deals with a lot of bladder issues so you may want to email her or she may see your post. Hang in there