This is part of a series of consultations with surgery specialists at the University of California, San Diego. In this hypothetical conversation between patient and doctor, we present an example case that is a composite of the most common signs and symptoms we see in patients who have this problem, along with the standard exams and treatments we recommend in a typical case.
Whether or how a person is affected by a particular disease or problem can depend on the person’s age, gender, or race. In each consultation we present on the UCSD web site, we will possibly indicate whether gender, age, or race makes a difference. The following consultation about chronic pelvic pain and interstitial cystitis (IC) could apply to any adult. IC also occurs in children.
This consultation is presented for purposes of general information. If you think you have a similar condition, please see your primary care doctor and your surgeon to discuss your individual case and the exams and treatments that are best for you.
Introduction
Pelvic pain and urinary urgency/frequency are symptoms that can come from interstitial cystitis (IC), a disorder of the lower urinary tract that affects both women and men. A person who has IC may feel pain in any one or more locations between the navel and the thighs, front or back, in any combination. It can be very difficult to diagnose IC because the symptoms can affect a person differently from day to day, and one person’s IC symptoms may be very different from another’s. In this example, the patient is a 28-year-old woman.
Recent research suggests that IC may be surprisingly common, affecting as many as 1 in 4 women and many men. Because of its symptoms, IC can be mistaken for endometriosis, urinary tract infection, overactive bladder, or yeast vaginitis in women, and prostatitis in men. Unfortunately, the average patient with IC has suffered from symptoms for several years, and seen many doctors, before a correct diagnosis is made. However, there are now new diagnostic tests and new approaches to treatment that make it possible to identify IC early and treat it successfully.
Consultation
Doctor: Good morning. How are you?
Patient: I’m okay.
Doctor: What brings you in to see me today?
Patient:I have pelvic pain, and sometimes pain in my lower back, almost all the time. My gynecologist referred me to you because she heard you give a talk about this bladder problem. It doesn’t feel like it’s in my bladder, but I’ve tried all kinds of things, and it’s getting worse.
Doctor: How long have you been having the pain?
Patient: About three years ago is when it really started bothering me. Before that, I don’t know. It seems like I’ve had it forever.
Doctor: Are you in pain right now?
Patient: Yes, it’s really bad today.
Doctor: Where is the pain?
Patient: It’s sort of across my lower back, but I feel it in the front, too. It’s hard, because it hurts in more than one place, and I don’t know if it’s all coming from the same thing. Sometimes it goes away, but it comes back. Really, I feel like this sounds crazy, but that’s what it’s like.
Doctor: Are there any other places where you feel pain, either now or in the past?
Patient: No.
Doctor: How about urinary symptoms. Do you have to urinate frequently?
Patient: No, not really.
Doctor: Any urgency? The feeling that you have to urinate right away?
Patient: No.
Doctor: Do you ever have to get up in the middle of the night to urinate?
Patient: Maybe once a night.
Doctor: And are you sexually active?
Patient: Yes. Well, not so much right now. That’s why I went to the gynecologist, because I got married, and I started having pain when my husband and I had sex.
Doctor: Are there any times that you’ve noticed the pain tends to be worse? Times of the month, or seasons of the year?
Patient: It seems like it gets worse the week before my period.
Doctor: Do you ever avoid sexual activity because of the pain?
Patient: Yes, often. It’s a problem.
Doctor: And what did your gynecologist say?
Patient: She said that I had a problem with the vulva, vulvodynia, and she said I had endometriosis.
Doctor: And I see that she’s tried various treatments for that. Did any of them help?
Patient: Not really.
Doctor: All right. Do you have seasonal allergies, hay fever, food allergies?
Patient: Hay fever, yes.
Doctor: Have you ever been diagnosed with a urinary tract infection? Did the gynecologist do a urinalysis, urine culture?
Patient: Yes, several times, and it was always negative.
Doctor: All right. As you know, we had you give us a urine specimen when you arrived here today, and I see that it showed no sign of infection, and no blood. We also had you fill out a questionnaire, the PUF questionnaire, to look at the symptoms you’ve been having and how bothered you are by them.
Patient: Yes, I got a score of 12 on that questionnaire. What does that mean?
Doctor: A score of 12 indicates that there’s a fairly good chance that the bladder is the real source of your pain. You may have interstitial cystitis, or IC.
Patient: But my bladder feels fine. I don’t have any bladder problems.
Doctor: That’s what can make it so difficult for a doctor to find the actual source of your pain. You see, because of the way the nerves and the spinal cord work in that part of your body, pain that comes from a problem in the bladder can actually be felt anywhere in the pelvic area, front or back, all the way from the inner thighs to the belly button and everything in between. You might feel the pain in any of those locations, in any mix or match. And about three-fourths of our patients who have IC come in saying that they have pain with sex.
Patient: I didn’t know that. How can you tell if I have IC?
Doctor: I’m going to go ahead and take a detailed history and do a physical examination to determine whether there might be any other cause for your symptoms. Then there’s a test we can do right here in the office today if we do think that you might have IC.
Patient: Okay.
EXAM: The doctor takes the patient’s medical history and performs a physical examination. In her family history, he learns that she has a sister who has had many urinary tract infections, and an aunt who had severe pelvic pain for which no cause was ever found. During the doctor’s examination of the bladder area, the patient indicates that she feels discomfort when he presses on the base of the bladder. All other findings are normal.
Doctor: After hearing your history and doing the physical exam, my impression is that you may have IC.
Patient: What is IC, exactly?
Doctor: It’s a chronic inflammation of the bladder that can cause pain or urinary symptoms or both. The symptoms tend to come and go, and they vary from person to person, which can make it difficult for a patient to get a correct diagnosis.
Patient: How can you tell if I have it?
Doctor: We can do a test that will help us determine whether the pain you’re having today is actually coming from the bladder.
Patient: What is the test?
Doctor: Because you’re in pain today, right now, we are able to do the test by placing a liquid anesthetic in your bladder for a few minutes. If you have relief of your pain, that tells us the bladder is the problem.
Patient: Does the test hurt?
Doctor: We insert a catheter, and you may feel some discomfort from that. Some patients feel some discomfort from the liquid solution itself. Overall, most patients feel it’s not very uncomfortable.
Patient: All right. It doesn’t sound too bad.
Doctor: My nurse will come in and do the test, and then we’ll discuss the results.
The anesthetic bladder test is performed. After the nurse explains the procedure, the test takes about twenty minutes.
Doctor: How are you feeling now?
Patient: The pain is almost gone. It got better and better after the solution went in, and now it’s still much better. I just can’t believe this. How long is it going to last?
Doctor: Most patients feel pain relief for a few hours. The solution we gave you contained both an anesthetic and a drug that we believe helps the bladder lining to repair itself.
Patient: So does this mean I have IC?
Doctor: I believe that you do.
Patient: What causes it?
Doctor: Well, as you may know, the urine contains salts and other normal by-products of metabolism that could irritate delicate tissues like the bladder’s muscles and nerves. But a healthy bladder has a protective lining that keeps the urine from touching those muscles and nerves. In IC, what appears to happen is that this protective lining isn’t working properly. As a result, substances in your urine are irritating the bladder and inflaming it. We believe that’s what causes the symptoms of IC. We’re finding that a surprisingly large number of people with IC have a faulty bladder lining.
Patient: What can you do about IC? Is the bladder always going to be like that?
Doctor: We have treatments that help the bladder repair itself and help relieve your symptoms. The bladder solution we just used is one of them. We also have oral medications for IC, and I would like to have you start taking two of them.
Patient: What are they?
Doctor: The first one is Elmiron, pentosan polysulfate sodium. Its purpose is to help the bladder lining repair itself. You’ll take it twice a day. The second one is hydroxyzine, also known as Atarax, to keep your allergies under control. We’ve found that IC patients who have allergies often get flare-ups of their symptoms during allergy seasons, and the Atarax works to prevent that from happening.
Patient: How soon will I start feeling better?
Doctor: Elmiron can take weeks or months to reach its full effect. For patients who are particularly bothered by their IC symptoms, we suggest that you have two or three weeks of treatments with the bladder solution, two or three times a week, as you start your medication. The bladder solution helps reduce your pain while the oral medication starts to take effect.
Patient: Do I have to come in here two or three times a week?
Doctor: You can either come in to the clinic or we can teach you to do the treatments yourself at home.
Patient: I’d like to do them at home.
Doctor: All right, we will set you up for that. There are also some dietary changes you can make. Some of our patients find that consuming certain foods, such as coffee, tomatoes, and citrus fruits, can make their symptoms worse. Before you leave here today, we’ll give you a list of foods that you may want to avoid.
Patient: Okay.
Doctor: I’ll see you back here every three months, and we’ll adjust your medication as needed to keep your symptoms under control and give your bladder a chance to heal.
Patient: Am I always going to have IC? Does it ever go away?
Doctor: IC is a chronic disease, but we have effective treatments for it. Every patient responds differently, and it may take some time before your symptoms are under control, but the bladder solution helps most patients right away, and the oral medications will help your bladder to heal.
Patient: Thank you, doctor. This has been going on for a long time, and I was getting so discouraged. I forgot what it was like not to have that pain.