Pain Management for Interstitial Cystitis
While pain is not always a symptom in IC, for the men and women who have it, it can be agonizing, as if razors are cutting our bladders. Yet, for years, patients have been told that it’s all in their heads and that they just need to ignore the pain. Hogwash!! Would you deny a cancer patient pain care?? Of course not. IC pain has been rated equivalent to cancer pain and deserves urgent, compassionate treatment. Each patient faces three challenges: (1) To isolate where the pain is coming from, (2) to catch pain early and (3) to use a balance of self-help and traditional treatments to control and reduce pain.
Who would have thought that the bladder could hurt so badly as to drive a patient to complete despair. We associate pain with broken arms, legs, appendicitis, or childbirth, not our bladders. Yet, the pain experienced by many interstitial cystitis patients has been rated equivalent to that experienced by cancer patients and can be agonizing.
As an IC pain patient, I can relate. In the year that my symptoms began, I struggled to sleep more than an hour at a time, was unable to drive in a car without searing pain and found many basic daily activities difficult, if not impossible. There were moments when the pain was so severe that I felt as if I was dying. Yet, as I write this today, I can honestly share with you that I found relief for my pain and a dramatic improvement in my symptoms.
Fighting pain requires building a solid foundation of knowledge, discipline and skills. You, the IC patient, must take the time to gather information on pain management. You must be open and willing to try various IC & pain treatments as you work with your physician. Although many of you love coffee (regular & decaf), tea (regular & green) and soda, you must be disciplined enough to stop those things which we know badly irritate the bladder. A hot cup of peppermint tea, chamomile tea or steamed milk is much more bladder friendly.
Pain also takes a toll on our spirit, emotions and family lives. I want to remind you that you have done nothing wrong nor do you deserve to be alone. When you can’t travel comfortably, invite family and friends over to your house for a potluck or video night. When you’re feeling confused about your IC, come check the ICN web site for new articles. If you need support, you can visit our ICN Support Forum 24 hours a day for new ideas and encouragement. You are not alone! – Jill Osborne, ICN President & Founder
Bladder Pain Is Real
The bladder, like any other part of the body, can generate pain so severe that patients require immediate medical care and treatment. Unfortunately, IC patients struggle to overcome the perception their bladder pain “isn’t that bad”or is very mild in nature. The first published epidemiological study on IC in 1987 found that the pain of IC rated equivalent to that of cancer pain on the McGill Pain Scale. Similarly, the quality of life for some IC patients was rated equivalent to patients in end-stage renal failure. Given the fact that patients suffering from cancer pain or kidney failure usually receive immediate care and attention, many IC patients also deserve prompt and compassionate pain care.
Potential Sources of Pain
IC pain can originate not only from the bladder but also from nearby muscles, nerves and even referred pain from other parts of the body. With time, most patients learn the subtle difference in symptoms between an IC flare caused by direct bladder irritation (i.e. diet) versus a muscle spasm (i.e. sex, driving in a car,etc.). Bladder wall irritation has a tendency to create more of a sharp, intense pain. Pelvic floor muscle spasms create a deeper, heavier burning sensation that can make sitting more uncomfortable. Nerve pain can be more electrical, hot or searing in nature. Each potential source of pain has its own symptoms and treatments.
1. The Bladder Wall (AKA urothelium):
The urothelium is the most specialized epithelium in the human body and all of mammals. It must act as a permeability barrier to protect underlying tissues from urine while also stretching as the bladder fills with urine. When it is damaged, urine can reach into the deeper layers of the bladder wall where it will trigger irritation and/or inflammation. Bladder wall irritation may provoke frequency, pressure and/or pain. Some patients may just have frequency, particularly at night, while others may experience pain as the dominant symptom.
Potential Pain Triggers For Bladder Wall Irritation:
DIET – The most common trigger is diet. Most patients report intense discomfort and/or pain after eating or drinking certain foods, particularly coffees, sodas, various teas, fruit juices (citrus, cranberry juices) and tomato products (i.e. tomato soup, juice, pasta sauce, etc.). Thus, diet modification and avoiding those foods known to irritate the bladder is the easiest and, often, most effective way of reducing bladder wall discomfort.
HORMONES – Menopause and hormones also influence the bladder wall and vulva. As estrogen levels drop, the tissues of the vulva, urethra and bladder become thinner, more vulnerable and sensitive to stimulation. Most care providers will test hormone levels in patients struggling with pain and discomfort and, if needed, suggest an estradiol vaginal ring (aka Estring), hormone replacement therapy or a compounded, preservative-free estrogen cream.
CHEMICALS – From chlorine in swimming pools to perfumed laundry products, IC patients have long known that certain chemicals provoke urethral, bladder and vaginal discomfort. Many brand name laundry detergents (i.e. Cheer, Tide), bubble baths and soaps (i.e. Irish Spring, Dial, etc.) are known to trigger urethral irritation and pain. Similarly, the heavy chlorine found in swimming pools and hot tubs can be harsh irritants. Even bath soaps, particularly liquid soaps that are heavily perfumed, can trigger an IC or vulvodynia flare.Dove soap for personal hygiene and Ivory Snow or Dreft for the laundry are better tolerated by IC patients. Fabric softeners or other products that add a scent to clothes should also be avoided.
SMOKING – Unsurprisingly, smoking is the number one cause of bladder cancer. As the body excretes the thousands of harmful chemicals found in smoke, they become concentrated in urine and can cause irreversible damage to the bladder. Research released by the University of Florida in 2006 also confirmed that these chemicals actually reduce the ability of the body to heal itself. As such, smoking can badly irritate an IC bladder. Patients are urged to stop smoking or, at a minimum, try the nicotine patch.
2. Bladder Spasms
Bladder spasms occur when the muscles in the bladder contract suddenly and unexpectedly. Men and women may experience a “flip-flopping” sensation in their bladder. For some women it can be a deeper sensation in the vagina, very similar to the irritation felt with a yeast infection. Still others may have brief but excruciating pain at the end of urination when their bladder walls briefly touch.
Potential Triggers For Bladder Spasms: Catheterizations, diet-induced bladder irritation, UTI, etc.
3. Pelvic Floor Muscles
The pelvic floor muscles provide support for the organs in the pelvis including the bladder and uterus. Over the past 20 years, urologists and gynecologists evaluating IC patients have often found pelvic flo