Fibromyalgia Support Group

I've had fibro since 1995 (officially) and have had occasional bladder problems and pain during that time. In May I was hit by SEVERE bladder pain, and am still having pain - just not as severe. (By SEVERE, I mean similar to labor pains!) During that time, I've had 2 bad bladder infections (Cultures were done.)and treated for a possible third, although several times when I went to the doctor revealed no infection with the pain. My pain is NOT associated with urinating; the pain is an almost constant companion. I'm in the process of a diagnosis through a urologist at this time. I've had ultrasounds of my kidneys and bladder, plus urine and blood tests. I go back to the urologist on August 4th. He has mentioned having to exam the inside of my bladder using a cystoscope (Sounds painful to me.). I had a total hysterectomy at age 34, so any pain from those organs can be ruled out.) Two other doctors have mention Interstitial Cystitis, or IC, as a possible diagnosis. Until now, I never knew what IC was or that it often accompanies fibro.

Interstitial Cystitis (pronounced in-tur-STI-shul sis-TY-tis), also known as painful bladder syndrome (PBS), is a chronic, oftentimes painful, inflammatory condition of the bladder. Its cause is unknown.

Some or all of these symptoms may be present:

PAIN: Can be in the lower abdominal, urethral, or vaginal area.

FREQUENCY: Day and/or night frequency of urination, sometimes severe.

URGENCY: The sensation of having to urinate immediately, which may also be accompanied by pain, pressure, or spasms.

PELVIC FLOOR DYSFUNCTION (PFD): is usually related to too much tension or “high-tone”—the opposite of the too-relaxed state or “low-tone” that contributes to incontinence—of the muscles that support the pelvic floor.

OTHER DISORDERS: Some people with IC also report muscle and joint pain, migraines, allergic reactions, and gastrointestinal problems, as well as symptoms of IC.

http://nfa.convio.net/site/News2?page=NewsArticle&id=7035

For those of you who are experiencing bladder pain, I wanted to recommend checking out and joining the Interstitial Cystitis support group on MDJunction. We would love to hear your story and how you are coping with yet another problem. If you don't have a clue what IC is, just pray that you never do!!

Hi Carla. I came across this post since I'm Fibromyalgia. I'm just wondering if you are the same Carla as the one who currently posts on the IC site. If so, I would assume you were diagnosed with IC. This is all frustrating and this support system really helps!!! --Nickie

This is interesting and timely. I am having urinary tract problems and have been since 2007 when it started off with severe bleeding one morning in July of that year and ended up with having them go in and get a kidney stone out in December because it was too big to pass.

Every since then I always seem to have some degree of hemarturia (blood in urine). Lately I have been having a lot of pain also. I always think it is another stone but when they do a CAT Scan there is nothing there.

I have done some research and discover that all SSRI's have that as a side effect. (I take 3, 100mg Zolof, 50 mg Deseryl and 300mg Ultram ER.) When I changed doctors recently I broached the possibility that maybe that the SSRI's were causing the problem and he did not think so but is sending me to another urologist next week. Apparently I am bleeding pretty bad but not enough to see it.

I had never really thought of interstitial cystitis even thought I have heard it mentioned as one of those conditions that seem to pop up when talking about co-existing conditions with fibro. I am looking to see if hemartiuria is a co condition of interstitial cystitis. I haven't seen anything yet.

Nitalynn,

I was diagnosed with IC in 2006. At my Urologists I have a symptom checklist I fill out every visit and the specifically ask about blood in the Urine. I have only had this after Cystoscopies and Hydrodistentions (both are tests that are done to view the bladder possibly diagnose IC) but I do believe it can be a symptom. It can also indicate other Urinary/Kidney issues like you mentioned. The most common symptoms of IC are frequency (going alot) Urgency (always feeling like you have to go) and pelvic pain. It can be associated with the act of urinating itself or when your bladder is full, or can be a steady constant pain or both. Mine feels like severe, burning, period cramps.

Hope you get some answers. PM me if you need someone to chat with!

-Rachel

Does the pain have to be in the bladder or can it be in or around the kidney?

The pain from ic is most generally in the lower back & pelvic area. It can radiate. There is another condition called vulvidenia that sometimes go hand-in-hand with ic.

Blood in my urine 3 months after a hysterectomy is what tipped my doctor off that there was something wrong. The fact that I had had a hysterectomy & they had done a ua to check for a uti & there was no other logical reason for the blood, my doc was pretty positive that it was ic & referred me to a urologist for the testing called a cystoscope, where a tube like a catheter is inserted into the urethra to look inside the bladder. I had microscopic holes in my bladder & got the dx of ic.

I tend to have a lot of cramping, similar to menstrual cramps, & occasionally so severe I'm in bed with my heating pad for days. There's also the spasms & difficulty urinating, frequency, urgency, having to go numerous times in the night & just having to urinate upwards of 20-30 times a day. My family members give me a hard time because I go through so much toilet paper, easily 1 1/2 rolls a day. No fun!

My sister IC and was part of a medication trial at UCSD about 10 years ago. She immediately felt some relief and was eventually told the med that was being studied was Welbrutrin and she did receive it not a placebo.