At least once a month I talk with an IC patient who, for a variety of reasons, is simply unable to talk about their bladder and pelvic pain symptoms. They usually offer vague, non specific words like “it hurts down there” thus requiring twenty minutes or more of carefully worded questions to determine what’s really going on. Unfortunately, doctors rarely have the time it takes to get these patients talking more, thus leaving both the patient and the physician frustrated and unsatisfied with the appointment.
One of my most memorable conversations was with a very kind, elderly woman who was unable to find the right words to use with her doctor. In addition to her IC, she struggled with some unusual “crotch” symptoms. It took dozens of detailed questions before she was able to say that when she urinated, she also had a strong “pressure like” sensation to have a bowel movement. This had been going on for years and yet she’d never been able to describe it to her doctors. This was, indeed, a very unusual symptom that was later determined to be fairly severe pelvic floor dysfiunction.
There’s no doubt that men and women of an older, gentler age were simply discouraged from talking about their “personal” problems but, in 2010, even younger folks struggle with finding the right words to describe their symptoms. Men with IC often have referred pain to the tip of their penis and the testicles yet often feel uncomfortable telling their doctors where the pain is and when it occurs. Similarly, women with IC might struggle with vulvar pain or an unusually odd “painful arousal” sensation that occurs when the pudendal nerve becomes irritated. Not surprisingly, women rarely tell their doctors about it for fear of being labeled a sexual pervert.
Teenagers and/or people who have not read books about their health or anatomy may not know what their different body parts are called. Asking “do you have pain in your urethra” to them is like speaking a foreign language. They may not know what the urethra is and where it is located, much less be able to tell you that the sharp burning they feel when they urinate is located in the urethra. Fancy words are not required. If you’re comfortable using the word “pee” rather than “urinate,” go for it!
Tragically, there are patients who are unable to talk. One of the saddest conversations I had was with a mother whose teenage daughter had several cerebral palsy and IC. She couldn’t speak and the only way that her mother could tell when her IC was bothering her was when she squirmed in bed or cried. Similarly, senior citizens with often struggle with consistent and severe bladder problems that medical staff incorrectly assume are bladder infections. In one case, one family member related to me that her mother, long diagnosed with IC, was being given coffee and cranberry juice every morning and by the afternoon was suffering severe pain. Once the staff were educated about the IC diet and provided other drinks, the patient improved dramatically.
Your ability to verbalize and discuss your symptoms is not only a gift but essential to your health. If you find yourself struggling to describe your symptoms, consider the following words and use those that apply to you:
Location:
bladder, bowel, urethra, rectum, vulva, vagina, penis, testicles, scrotum, lower back, upper back, legs, hips
Symptoms:
frequency, urgency, pressure, pain, difficulty starting urination, constipation, spasms,
What does it feel like:
Burning, aching, razor blades, ground glass, tightness, an electrical shock sensation, something falling or dropping out of you, something being pushed inside of you, stiffness
How often does it occur:
Is it episodic or continuous?? Does it occur every night?? Every morning? Is it worse before meals or after meals? Does it happen before your menstrual period?
Are your symptoms positional?
Does it occur when you’re sitting, standing or walking? Does movement make it better or worse?
Does it involve urination or defecation??
If so, how? Is the pain worse before you urinate, while you are urinating or after you are done urinating? Does the pain change when you have a bowel movement?
Saying “I’m in pain down there” is not going to get you very far. But, if you say, “my bladder hurts before I pee and I feel a bit better after I pee”, that’s much more helpful and suggestive of bladder wall irritation. If you say “My pain is the worst at the end of urination and it’s so bad that I hate going to the bathroom”.. then that’s suggestive of perhaps some bladder or pelvic floor spasms.
Remember, there’s no shame in having IC or any other medical condition. Most doctors talk about urinating, bowel movements, hemorrhoids and many more embarrassing conditions every day. Don’t allow yourself to suffer! Just go for it.
By Jill Osborne MA
