Have you wondered, why does my bladder feel like I have a urinary tract infection (UTI) but its negative for bacteria when I have it cultured at the doctor?
Do you have any of the following symptoms:
- Bladder pain that’s chronic
- Urethra pain or discomfort
- Increased urgency to go
Realizing you have an ongoing, hard to discuss, and hard to treat condition is initially both frustrating and depressing. I’m talking about Interstitial Cystitis or IC for short. In other words, a range of conditions from stabbing pain in your urethra to dull aching in your entire bladder, its raw, its tender, it can make working, exercising, and having sex impossible or at the very least excruciating.
IC short for Interstitial Cystitis, is defined as bladder pain syndrome that can have a variety of symptoms. If you have bladder pain that lasts for more than 6 weeks and is not a kidney or bladder infection or kidney stones, there’s a decent chance you have IC.
Photo Source: Mayo Clinic
The way I define it for other people is “it’s like having an ulcer in my bladder” or “the lining of my bladder is easily injured and is sensitive.” While there is no known cause or cure for Interstitial Cystitis, there is hope for symptom remission.
My IC Story
I’m a 42-year-old woman, with four kids, two dogs, a frisky husband, a job, friends and a life I want to live PAIN FREE. My IC has been affecting my life chronically for the last 5 years now. Before that, I was a kid that had a couple more UTI’s that other kids (now considered a possible precursor to IC). I probably damaged the lining of my bladder from the time I was in my late teens and early 20s, the truth is I abused my body, drinking lots of soda, coffee, espresso drinks and of course alcohol. I didn’t drink enough water and had a horrible diet. Back then it didn’t affect me other than the occasional UTI.
When I still lived at home, I remember my mom complaining about her bladder pain off and on, she was in her late 30s at that point, but I was young, and her condition didn’t seem to affect me. As I got into my late 20s and early 30s, I got UTIs more often, which were not always cultured and confirmed as having bacteria present, just treated. This tends to be the norm in many doctors’ offices. I wrote these infections off! I thought you’re stressed, busy and not properly hydrated. You’re not peeing after sex, or you need to cut out the soda.
My First REAL Bladder Flare
Then there was my first “FLARE”. IT STOPPED ME DEAD IN MY TRACKS. I was shocked and horrified how much pain I was in, I cried, I was depressed. What else do you do when you can hardly get out of bed, get to work, help your family, love your man and so on. My bladder was tender, my urethra throbbed and at times felt like someone was stabbing it with a little tiny knife. I felt the urge to pee several times per hour and many times got only a few drops of urine.
That sadness, sulking and pain turned in to determination over several months. Darn it, I’m a problem solver! I did what I did when I had other problems in my life, I put time and effort into a solution! I did research, saw a Urologist, who I can honestly say was very little help, and talked to other IC sufferers.
Much of what I will share here as far as short and long-term solutions, I learned through many hours of research, trial and error and time.
One of the first things I did was talk to my mom. I asked her to recount her symptoms and struggles. Well that’s when I realized this was a family affair, although not the case for all those that develop IC. In my family, it started with my grandmother. Back then they had no idea what her IC pain was, the poor woman was subjected to “urethra stretching” using a metal rod, I think no explanation is needed here. There was no help, she had her flares, spent time in bed and in pain, she probably realized that certain foods or drinks bothered it and tried to act accordingly.
My mom had a similar fate, but Urology progressed a bit more by the 1980s. She was actually diagnosed with IC, but she too suffered, sure they gave her Valium and pain pills when it got really bad, but she had no defense against IC…THAT SCARED ME. I didn’t want a chronic debilitating condition. Thank God this is 2019 and we have the Internet and so many women’s stories to compare ours too.
I can honestly say that after much trial and error and some diet modifications I am 99% Flare Free! I also credit this to a multitude of supplements, modified foods and beverages and overall healthy living that’s given me my life back.
My IC Mission
- Help you figure out if you have IC
- If you do, how you can best treat those immediate FLARES as well as make some long term tweaks that I promise you are 100% worth it for the little you will have to give up.
- Connect you to IC people, products and medical sites so you can be fully equipped to face IC head on.
I personally have tested lots and lots of supplements and there are a couple I think are key to your long-term success, I also take a daily prescription and from time to time take Valium or other muscle relaxers when all else fails, but the latter is rarely the case. Everyone is different and something that works for one of you may not for the next. That is also true for my sisters and my mom, oh yes, my younger sisters have it too. Luckily not as bad, but they do take supplement too. This is a fight for your health and I am so pleased you found this website. It comes from a place of passion, passion for health and vitality.
Why Does My Bladder Hurt?
If you suffer from reoccurring a Urinary Tract Infection (UTI) especially if you don’t get relief from Antibiotics, you could be one of the upwards of 8 million women in the United States thought to have Interstitial Cystitis (IC). Many women go to their doctor expecting a positive bacterial culture and instead are told that it is negative, yet again.
According to the Center for Disease Control and Prevention, “IC affects men and women of all racial and ethnic backgrounds and ages. However, it is more common in women than men. Early prevalence research suggested that IC ranged from 1 out of every 100,000 to 5.1 out of every 100,000 in the general population; but updated epidemiologic research conducted in 2006 suggests that up to 12% of women may have early symptoms of IC.”
How do I know if its IC?
IC is diagnosed by ruling out other diseases and condition, some but not all include: endometriosis overactive bladder, bladder stones, kidney disease, irritable bowel syndrome, fibromyalgia and even possibly multiple sclerosis and bladder cancer. Specifically, if a patient has had several assumed UTIs that are cultured as negative they will be referred to a Urologist or Gynecologist that will assess:
Patients health history
A patient’s health history includes history of voiding, pelvic pain, urinary frequency as well as family history of urological issues.
This will include a pelvic exam, women with IC may have tenderness when the bladder is manipulated externally as well as at the anterior vaginal wall near the urethra. Pelvic floor muscle strength and tenderness is also assessed.
This identifies the presents of red blood cells, white blood cells, casts, crystals, bacteria, yeast cells, parasites, or squamous cells.
Cystoscopy (if needed)
A cystoscopy allows your physician to look inside the urethra and bladder. During this in office procedure the physician can see and remove bladder stones, blockages, identify narrowing of the urethra, perform dye contrast, biopsy urethra and bladder tissue.
Photo Source: NIH
Patients with IC that do have these biopsies do tend to have damaged bladder wall tissue.
How is Interstitial Cystitis Diagnosed?
Going to a Urogynecologist or a Urologist or Gynecologist that specializes in Interstitial Cystitis is a great first step in confirming your suspicions.
Check out the IC Patient Guide (coming soon), a helpful resource to read and take notes before going to your doctor. This guide discusses symptoms, causes, tests, diet as well as touches on prescription treatments and supplements, the latter I will discuss in great length.
What is wrong with my Bladder that Causes Pain?
IC is diagnosed by ruling out other conditions, as there is no test to accurately diagnose IC. What causes interstitial cystitis? There are no known causes of IC but we do know more than one mechanism is at play. The mucin layer of the bladder wall that protects the urothelium is thought to be defective.
This allows for acids and toxins to seep through, which in turn can trigger nerve and muscle tissue pain. There are lower levels of glycosaminoglycans (GAG) in most IC patients’ bladders. Some patients actually have Glomerulations, which are basically small hemorrhages. Some IC patients may actually refer to their bladder and urethra pain as similar to having an ulcer in this tissue. There is also a line of research that suggests people with IC have antiproliferative factor (APF), this substance found only in people with IC is thought to block normal cell growth and healing. This is being considered as a biomarker of the condition, according to Harvard.edu.
Nerve Damage or Auto Immune Response
There is also a school of thought that believes most of the pain in the bladder and urethra are due to changes in nerves that affect bladder sensation, still others believe the substandard tissue that lines the bladder and urethra is compromised by the bodies on immune system and is under attack from the body itself.
The Doctors Talk about Interstitial Cystitis
First of all, let’s talk about what a Flare is. A fare is a sudden and dramatic worsening of your symptoms. It can last a few hours to a few weeks. Flares can be unpredictable. They cause increased pain and irritation along with increased urgency to urinate.
- Hormone Induced Flare: Some women notice they happen around their period, also known as hormone induced flares
- Diet induced Flare: When an offending food or drink is consumed it usually can be felt within minutes or hours of ingesting
- Sexual Intercourse Flare: Sexual intercourse flares may take 24-48 hours to surface
What can I do to get Immediate Relief?
Take a warm bath preferably with Epsom Salt. This will relax your pelvic floor muscles which can spasm during a flare. Don’t add bath bombs or other bath salts as these can cause further irritation.
This will relax your pelvic floor muscles which can spasm during a flare. Don’t add bath bombs or other bath salts as these can cause further irritation.
Switch to drinking nothing but plain water, with the exception of Marshmallow Root tea, which can be very helpful.
Eat a bland diet for a few days with no spicy food, no alcohol, and no caffeine. If you must have caffeine get it from caffeinated water or tea, and drink as little as possible. Don’t consume sparking beverages, even water, it can be an irritant.
Take Prelief. Its a miracle supplement that almost immediately improve my symptoms.
5. Apply a heating pad or warm water bottle to the perineum, below the opening of the vagina.
Have an orgasm, this is a great way to help halt the spasm, for most women. An external orgasm using your fingers, or a toy is a better option than putting anything inside the vagina.