Cystitis Gladularis

[Tracy 2920]

Hello, was recently diagnosed with cystitis glandularis through a cystoscopy under anesthesia. Doctor has me on 100 mg of macrobid per day long term. 3 months to start.

Has anyone else been diagnosed with this? What is your doctor doing? Are you getting better? How long does it take?

Anyone?:hi:

called cystitis glandularis

[ICNDonna]

Anyone? I have to admit that I'm not familiar with this diagnosis.

Donna

[Mothergoose]

I have not heard of this either, I am going to google it, sometime Dr. use different names for the same condition.

MG

[Mothergoose]

I looked it up but I am none thw wiser, when I googled it I got this post. there is info about it but I would need someone to explin it to me in simpler terms.

When do you go back to your dr. I would ask him to explain it better.

MG

[Tracy 2920]

After probably 10 doctors of all sorts over the last 4 years, I have been diagnosed with pelvic floor dysfunction and was most recently diagnosed with cystitis glandularis.

My doctor had found tons of polyps in my urethra. I have a relatively constant burning feeling and pain in my urethra. Sex is impossible. I also burn after I urinate. Sometimes urgency and frequency. Many of the same symptoms alot of the other people here have. I have chronic inflammation in my urethra.

After my cystoscopy under anesthesia they cut out a couple of the polyps and sent them for testing and they are saying this is cystitis glandularis.

My bladder is perfect and my ureters are fine as well. This is completely confined to my urethra.

He cannot remove all the polyps because I have so many he said I would leak. It would be like swiss cheese. Holes all over.

Right now I am on macrobid long term to hopefully remove the source of irritation which he believes is some sort of chronic infection.

What I see it is a "chronic reactive inflammatory disorder that occurs in the setting of chronic irritation."

"Metaplasia (Transformation of cells from a normal to an abnormal state) of the urothelium (the tissue layer that lines much of the urinary tract, including the renal pelvis, the ureters, the bladder, and parts of the urethra) is incited by irritants such as infection, calculi, outlet obstruction, or tumor. The urothelium then proliferates (grows or multiply) into buds, (i.e the polyps) which grow down into the connective tissue beneath the epithelium (Membranous tissue) in the lamina propria (A thin vascular layer of connective tissue beneath the epithelium of an organ)."

"The buds then differentiate (alteration or modification) into goblet (specialized epithelial cells) resulting in cystitis glandularis."

"Cystitis glandularis can occur in association with pelvic lipomatosis (pathology in which fat accumulates in lipomas in the body) and is believed to result from bladder obstruction and chronic infection."

"Biopsy is necessary for a definitive diagnosis."

"Treatment consists of removing the source of irritation and surgical excision of the area of inflammation or cystectomy in rare severe cases."

"These patients should be monitored carefully because of the possible association with adenocarcinoma. (A malignant tumor originating in glandular tissue.)

:woohoo:

[Nal]

I just wanted to say that i am sorry you are suffering first of all. Any idea what caused the condition in the first place? What test did you dr do again to find out you had these polyps? I hope you find something that helps and soon!

Nancy

[Tracy 2920]

Hello,

Sorry it took so long to get back. My doctor in Chicago did a cystoscopy in the office and found the polyps. Then I had to change insurance companies and am now looking for a new doctor. In the meantime I went to a urologist in my hometown and he did a cytoscopy under anesthesia and actually cut out a couple of the polyps and sent them to the lab for testing. I am not sure what test they did but the path report came back saying I had cystitis glandularis.

I am seriously down. I have been going back and forth with my new insurance company because they refuse to cover my urogyne in Chicago so I am trying to find a doctor. I went to the urologist here in Quincy and he said after a month of being on macrobid that since it hadn't done anything yet that he couldn't help me so he referred me to a urogyn in chicago that would be covered under my insurance. I sent my records and they won't let me see a urogyn there because they say I am not a surgical candidate. (I can't have the polyps removed because there are so many that I would literally leak urine. I was told it would be like swiss cheese. holes all over. so they wanted me to go to og/gyn there. I told them that I have seen several ob/gyn's and they haven't been able to help me. This is my URETHRA for pete's sake. Don't they realize that ob/gyn don't work on urethra's...do they?

Anyway, I found a urogyn in St louis that would be covered under my insurance and sent them my records today and they called me back and said the urogyn looked over my records and they are recommending I see a urologist. I was crying and so upset. I told her that a urologist was referring me to the urogyn.

Someone PLEASE HELP ME. I am desperate. I have pelvic floor dysfunction and multiple polyps in my urethra, called cystitis glandularis. I live in Quincy Illinois. I need a doctor. Should I see a urogyne, urologist, or ob/gyn and does anyone know a good doctor either close to quincy illinois or I would be willing to go to St. Louis MO, or Chicago Illinois. Please, any help would be greatly appreciated. My husband is begging me to go to Mayo but I just can't afford to go that far I don't think. Dealing with this for 4 years and thousands and thousands of dollars.

Thanks

[NancyB]

Dear Tracy -

Sorry you are going through such an awful time trying to find someone to help you.

You have something that is pretty unusual. I think Mayo, which is relatively close to you, is your best bet. I think these types of lesions are burned off with a laser. However, I am not entirely sure. Why don't you send your records to the Mayo Clinic's Urology Department and get their take on your case. If they can't help you, the other hospital that could help you would be Johns Hopkins in Baltimore, Maryland. They are the #1 Urology Hospital in the nation.

Hope this information is helpful to you. Keep us posted on what happens with you.

NancyB:)

[aep109]

Not sure if this will help, but there is a doctor familiar with IC in the Chicago area- Steven Mutchnik.

I'm extremely hands off with my IC/Urethral Syndrome and after my first cystoscopy 12 years ago I haven't let anyone near my urethra for any further testing- so other than pelvic floor therapy (which made my symptoms worse) I did not have any other treatment by him, but he was nice and familiar with the disease so he might be worth a shot. He was definitely better than some of the other urologists that hadn't even heard of it and told me it was all in my head.