Hi All,
 

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:)

Sorry to hear you still can't catch a break with all this stuff.
 

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. :D)

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. :eek: 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.

help for IC
 

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.

BIllye
 

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

Thanks all,
 

I thought of Roxie when the GYN was talking to me. The sling would be done right away if she thought it would heal. So we are going to continue with some more testing and the hormones and see what happens. Who knows, it might all just go away. The break I had was at S3-S4 and that's when I suffered from the bladder mishap so maybe it's all related to this break and it will heal.

Oh, thought I'd post about another disaster with University of Texas at Southwestern in Dallas. Remember I was to see the doctor at the Metabolic Bone Clinic there. Well I got his letter to the doctor today. He sent it to the wrong doctor, addressed the letter to the doctor with my last name as the doctor, medications listed were the ones I took over a year ago when I saw the neuro there. Failed to follow thru with the testing he told my husband and I that he would recommend my rheumie do. Total Disaster!!!!!! I called and they now have a real respect for what I can say over the phone and also what I threatened to do. My case was badly mishandled by one of Texas's leading Medical Schools. This is the second time I've been seen by that school and both times were utter disasters. I strongly do not recommend anyone be seen there! Huge building, drug advertisements everywhere and doctors who should be out of business. I'm reporting this one to the AMA.

Billye

What a nightmare. AMA is useless... Report it to the state licensing board. Form the complaint as doctor giving erroneous information to affect outcome with future doctors, etc. This represents poor record keeping, and poor policies with your files. Standard of care includes your medical records and their accuracy. In my state, EVERY complaint to the health board is followed up on.

Many doctors do not belong to AMA anymore. They have no policing power.
Accrediation boards, DO have power, so if you can find that hospital's
accrediation board, complain there, too.
That will get their attention PRONTO!

link to texas medical board:

http://www.tmb.state.tx.us/

link to federation state medical board ( has all the states )

http://www.fsmb.org/directory_smb.html#b3

LJ that was a great book. And Mrs d couldn't agree with you more.
Billye you get better and blessings to you. Hugs to all Sue

Perhaps I'm a bit slow on the uptake...are bladder issues often connected to certain kinds of PN? Is it a symptom of some sort or a direct result of the PN or whichever type of neuropathy it might be?

I've had some bladder issues but just assumed between age and having had 6 children some of this was fairly normal. This has got me thinking and wondering...

Yes, unfortunately--
 

--bladder--and bowel issues can be part of the package with small-fiber neuropathy that has an autonomic component.

In the large majority of people, these "annoyances" are often "subclinical"--very much like the fleeting problmes many small-fiber people have with postural hypertension or anhidrosis--and they don't become major conditions themselves. But in a significant fraction of people with major disease processes (and I definitely think Silverlady and cycleops and kmeb here, and maybe some others, fall into this category), these symptoms become major parts of the syndrome.

I liken it to how a good number of people--not all, but a significant number--have bowel/bladder issues with MS. A lot of whether one gets these symptoms depends on just where, and to what extent, the nerves are damaged.

The Washington University Neuromuscular website rather definitely indicates that autonomic dysfunction is common in Sjogren's (and has references); diabetes can often lead to autonomic symptoms, and there are also a batch of hereditary/genetic disorders, a number of them mitochondrial, that have autonomic nerve dysfunction as a prominent feature.

For those who like overwhelming amounts of listings, take a look at:

http://neuromuscular.wustl.edu/autonomic.html

I am going to agree with LizaJane. I went through all the testing. In my case there are issues with the L5/S1 and I have a fractured coccyx...C3 to be exact and the tip of it. ALL of this nerve damage has caused a lot of problems. So, Premarin Cream, pelvic floor PT and every now and then an injection into the coccyx. There is not much more I can do other than the above. Of course it is different than having IC. But you are right...the Premarin Cream may make alot of difference. It did for me. The PT, internal work, helped with the muscle spasms and the coccyx injections take the inflammation down. All of it has worked well. Actually, the Premain Cream if it is not a neuropathy issue, will help with the burning pain if you have that symptom as well. And I believe your doc is taking the right course. LizaJane is right...you would be amazed at how this all comes together and/or connects. It doesn't have to necessarily be neuropathy or even IC. Because I thought the same thing at one time and that wasn't it at all. It is just mainly nerve damage from my lumbar/sacral area causing a lot of this. It gets very involved and very complicated. I am thankful I had a great Reproductive Endocrinologist and Urogynecologist along with my spinal PM to help me get it ALL figured out. And very thankful for a PT specializing in this.

yes, it can be tricky
 

It can be tricky determining what is what. We're doing the elimination process to find out. Glenn thanks again for reminding me of that website.

MRI tomorrow. Next step. I feel that I have a very "on-top-of-it'' GYN. We'll get to the bottom of this.

Billye

Good luck at the mri. I never knew that bowels and bladder could be because of pn. Anyhow hope you feel better.