anyone have urethral syndrome? with a recipe for relief?

althea · March 2008

althea · March 2008

My mom has a long history of bladder and kidney infections. It has progressed to the point that she now has what is called 'urethral syndrome.' From what I understand, this syndrome is nonstop discomfort, whether there's an actual infection or not. Sometimes an infection is present, in which case she takes antibiotics. Other times, infection is absent, but she still has discomfort every day. She goes to the best internist in town. She goes to the urologist. A recent scan showed no kidney stones, which is good, but they basically have nothing to offer for relief from this syndrome.

Does anyone know of a remedy for this condition?

Anonymous · March 2008

I've never heard of this. How horrible. I wonder if acupuncture would help?

Jellydonut · March 2008

Althea,

I'm sorry your mother is suffering with this condition. My only suggestion to you is perhaps she may want to see an intergrative doctor who will do a comprehensive assessment (not to suggest her current doctors have not done that.) But the intergrative docs consider diet, supplements and vitamin levels.

The solution could be somthing as simple as adding daily probiotics, or perhaps a very small amount of estrogen.

There is a NY integrative medical doctor that has a call-in radio show

on wor710 where you can listen over the web. The call is free and it may be worth your time to call. Of course he can not diagnose over the phone, but perhaps he can give you some useful advice. He is extremely knowledeable about supplements. I've called him in the past and he helped me with my problem. His name is Dr. Ron Hoffman. www.drhoffman.com

I hope she finds relief real soon.

TenderIsOurMight · March 2008

Jellydonut already suggested what I was thinking, estrogen. Your mom doesn't have bc, does she, Althea?

A small amount of topical estrogen, to the vulva (perhaps the vagina, although they are differing creams not one and the same) may help by raising the local tissue's estrogen content, thus providing some relief.

The most exterior part of the urethral tissue is estrogen sensitive, and perhaps this will help ease her pain.

Hopeful,

Tender

althea · March 2008

She's a bc survivor also. I'm not sure if they had er/pr tests 30 years ago. She got it after being on prempro, however, and never touched it again, so I suspect she's er+

TenderIsOurMight · March 2008

Well in her case, still, her doctors might consider low dose estrogen (for external use) to the vulvar region closest to the urethra for a short period of time. Even several weeks of a small amount daily might be suffiicient to estrogenize the lower urethra sufficiently for pain relif and reverse what ever pain cycle she's currently in.

In her case they might even draw serum estradiols and follow them: my understanding is they often go up and then in a brief period fall. If they stay up, then stopping the estrogen would be advised.

The only other thought I have, as with other pain syndromes, perhaps Neurontin might be a consideration. Any drug to break the current cycle may lesson or eradicate a recurrence for a while. GABA is used for so many types of pain, including burning pain in diabetics. I take it she has a burning pain either constantly or exacerbated by voiding.

She isn't diabetic is she? Someone's ruled that out.

Sorry for her troubles.

Tender

Bliz · March 2008

Is it intersitual cystitis? (Probably murdered the spelling). If it is that frequent urge to go when nothing is produced, I found a heating pad on that area to work at night, which is the most bothersome.

SoCalLisa · March 2008

I had urethral caruncle from arimidex...I used a dab of topical prempro each day for two weeks, then two times a week for two weeks, then once a week for a month or so and it worked...if I felt it coming back, I did it once a week. Three docs came up with this plan, my onc, my OB/GYN and my urologist.

celia088 · March 2008

I don't know if UTIs (Urinary Tract Infections) are similar to what your mother has, but I have had UTIs quite often and the doc gives me antibiotics and an additional pill that is supposed to work immediately (before the antibiotic kicks in) to take away the burning feeling and the feeling like you have to urinate when you don't really have to. Sorry, but i can't remember the name of the medicine, but they told me that this pill will turn the urine purple (kind of a unique feature). I don't know if this is the same thing as what your mom has, but it might be worth asking the doc about the medicine.

althea · March 2008

I forgot about her UTI's celia. She gets those too. In fact, that should've been where I started in describing her symptoms. The feeling of having to urinate when you don't have to, difficulty urinating, and inability to get a good night's sleep because she's up and down all night going to the bathroom. She doesn't get more than 2-3 hours of sleep at a time.

Celia, I'd love to know the name of that medicine you mentioned. Lisa, I think she's tried the topical prempro, but I'll ask again. My memory is having lapses. Imagine that.

celia088 · March 2008

althea,

I googled it and found it. It is a small round purple pill and it turns the urine reddish-orange (sorry i thought it turned the urine purple but it is the pill itself that is purple). It is called Pyridium and its full name is Phenazopyridine. It has worked for me. Good luck!!

Here is some info from webmd.com:

"PYRIDIUM PLUS ORAL

This medication is used to relieve symptoms caused by irritation of the urinary tract such as pain, burning, the feeling of needing to urinate urgently or frequently, and bladder spasms. This drug does not treat the cause of the urinary irritation, but it can help relieve the symptoms while other treatments take effect. This medication is a combination of three different drugs. Phenazopyridine is a dye that works as a painkiller to soothe the lining of the urinary tract. Hyoscyamine belongs to a class of drugs known as anticholinergics/antispasmodics. It works to decrease bladder spasms. Butabarbital is a sedative that helps to relieve the anxiety that can happen when you experience urinary pain and spasms.

How to use Pyridium Plus Oral

Take this medication by mouth 4 times a day after meals and at bedtime or as directed by your doctor. If you are taking this medication along with antibiotics for symptoms related to a urinary tract infection, do not take it for more than 2 days without talking to your doctor.

Take each dose with a full glass of water, and drink plenty of fluids while taking this drug."

Info from www.rxmed.com:

"PYRIDIUM

Action And Clinical Pharmacology: Phenazopyridine is excreted in the urine where it exerts a topical analgesic effect on the mucosa of the urinary tract. This action helps to relieve pain, burning, urgency and frequency. The precise mechanism of action is unknown.

Pharmacokinetics: The pharmacokinetic properties of phenazopyridine have not been determined. Phenazopyridine and its metabolites are rapidly excreted by the kidneys. In a small number of healthy subjects, 90% of a 600 mg/day oral dose of phenazopyridine was eliminated in the urine in 24 hours, 41% as unchanged drug and 49% as metabolites.

Indications And Clinical Uses: For the symptomatic relief of pain, burning, urgency, frequency, and other discomforts resulting from irritation of the mucosa of the lower urinary tract caused by infection, trauma, surgery, endoscopic procedures, or the passage of sounds or catheters.

The use of phenazopyridine for relief of symptoms should not delay definitive diagnosis and treatment of causative conditions. The drug should be used for symptomatic relief of pain and not as a substitute for specific surgery or antimicrobial therapy."

althea · March 2008

celia, thanks for the information. I gave it to my mom last weekend. She told me later that one of the ingredients sounded very familiar to her. She read the label of some over the counter medication she's been taking for some relief. I think she said it's called azo. I was glad to hear there was something available for her to get some relief until she sees her doctor next week.

anyone have urethral syndrome? with a recipe for relief?

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