What I learned this week about Cystoscopy and Interstitial Cystitis

A lot has happened in the last ten days since I posted about the abnormal bleeding and thyroid levels. Lately, it seems like my situation changes day to day based on the whim of whatever doctor I am seeing. I think the answer (for me, not intended as medical advice for anyone else) is going to be to stop seeing doctors for a while.

Last week I went, on the recommendation of my new OB-GYN to see a local urologist. He genuinely seems like a nice and smart guy. That said, his examination of me has brought on A LOT of new and unnecessary worries in the last week.

When I saw him last Thursday we spoke at first about the condition of Interstitial Cystitis. From my description of how the burning came on in January and how it has been treated multiple times for Group B Strep UTI with no reduction of symptoms or improvement (and no progression of any UTI symptoms to becoming a real full blown cystitis) he was able to rule that one out for me completely. At last. This is what he said (paraphrased):

"Group B Strep is a normal vaginal flora. If I were to take your urine by catheter, there would be no Group B Strep in it. The Group B Strep has been a red herring, and I do not think that you have ever had a UTI."

"So", I responded - "Does that mean I have been on four different antibiotics unnecessarily for the last two months?"

"Yes, it would appear so."

He then went on to tell me that my story is a classic Interstitial Cystitis story... gone from doctor to doctor for months, misdiagnosed multiple times, treated with antibiotics for UTIs with no resolution of symptoms even when on the drugs.

I asked him to explain more to me about what IC is, how women get it, and how it is treated. I will post his essential response in bullet points:

• We don't know what IC is, even though much research has been done for a long time


• It may be a variety of conditions all sort of thrown together into the same trash can


• It may be triggered by stress, an autoimmune response, an allergy, a prior infection


• There is no cure


• Treatment is typically symptomatic


• One theory is that the mucous layer lining the bladder becomes depleted causing irritation


• A drug called elmiron is often prescribed to try to rebuild this mucous layer. Unfortunately only 5% of the drug actually makes it into the bladder so it takes a long time for the medication to have an effect and it has not been proven to make a real difference for patients


• Another treatment would be antidepressants to break up the neurological pain response


• It is not necessary to treat this condition and sometimes it goes away on its own


• It goes hand in hand with another autoimmune condition - vulvadynia

Apparently my symptoms are more typical of vulvadynia.

So that was all well and good, and he asked if he could examine me before I left the office just to rule out any other problems... and to take a urine sample. I agreed.

And then when he was doing the pelvic exam, he stopped the friendly banter and got a really concerned look on his face. He asked if I could feel where he was palpating. And yes, I could - he was pushing very hard from both sides.

Then he said he wanted to do a cystoscopy on me, as he was concerned that I might have a bladder tumor. "It may be nothing," he said "because you are very thin and maybe I am just feeling your uterus. But I feel compelled to look in your bladder to make sure."

"Even though I had the negative abdominal and pelvic CT and MRI just two months ago?"

"I would like to see that CT and I still feel compelled to look into your bladder."

Well, as you may imagine, everything else became kind of a blur. Within two hours I had gotten him a CD of my CT scan and MRI (that could be an entirely different post... did you know that you have the right to get the actual imaging from your CT and MRI on a compact disc that you can look at on your home computer?) and was on my way home feeling a bit tense.

By the time I got home, he had left me a message. "Hi, this is Dr. X - I am looking at your CT scan and I think it probably explains what I was feeling. Your uterus is sitting right on top of your bladder and you are very thin so I think I was feeling your uterus. Just didn't want you to worry. However, I still feel compelled to look in your bladder next week to make sure."

He later told me that what he had felt was the size of a golf ball and something of that size would definitely have shown up on the abdominal and pelvic CT.

Despite this, we were to go ahead with the cystoscopy which is typically performed in the office with a local anaesthetic (lidocaine jelly) and finished off with a prophylactic antibiotic.

With all the drug reactions I have had lately, I felt concerned about going through yet another likely-unnecessary procedure and taking yet more unnecessary medications. How lame would it be to have a drug reaction related to a procedure that was completely unnecessary.

In my research I learned that the local anaesthetic is completely unnecessary, and has not been shown to significantly reduce pain or discomfort in either male or female patients undergoing cystoscopy. Several studies have been done in the last 10 years showing that patients indicated no difference in sensation when given the local anaesthetic vs. plain old KY jelly. So, for me the answer was obvious - no local anaesthetic please.

As far as the antibiotic went, I decided not to take my chances on a new antibiotic that I had no prior history with. I requested a Keflex pill and when they could offer me only Cipro, Macrobid or a sulfa drug, I politely declined and offered to take one of the Keflex or Amoxicillin I had at home. Which they said was just fine.

The cystoscopy itself was very fast and actually not very painful at all. In fact, the greatest discomfort of the exam happened when the nurse accidentally turned on the water too early and the doctor jumped backward instinctively so his pants would not get wet, right at the moment when he had just inserted the cystoscope. That wasn't a great moment. Oh well.

There was a very slight burning feeling as the instrument went up the urethra and then basically nothing as the bladder filled with water and he looked around. And, drumroll please?

You guessed it, no tumor. In fact, my bladder looks perfectly normal with no sign of infection, stones or growths. He said it is quite typical for a person presenting with symptoms of Interstitial Cystitis to have a normal looking bladder.

The most painful part of the procedure for me has been just trying to urinate afterward. Every time I pee it really burns, similar to what a real bladder infection would feel like. However, I have taken the single dose of Keflex and expect that to stave off any bacterial infection. I'm happy to be done now with this particular urological episode of my quest for healing.

Here is what we have ruled out in the last two months thanks to what feels like one million physical exams, blood tests, imaging tests and now cystoscopy:

• Group B Strep UTI


• Any abdominal or pelvic masses, fluids or abnormalities - other than possible fibroids or endometriosis


• All possible bladder problems other than IC


• Cervical cancer or cervicitis


• All problems with ovaries


• All possible vaginal infections including yeast and BV


• All possible STIs including herpes


• Appendicitis, liver condition, pancreatitis, kidney disease

So, we move forward with a diagnosis of probable Interstitial Cystitis and Vulvadynia. Plus Hashimoto's Thyroiditis and postpartum hypothyroidism. That part is definite.

I have chosen for the time being to decline symptomatic treatment. I'm ready to be off all medications for a while, and let my body do what it can to heal itself. Hopefully my endocrinologist will agree with this decision when I see her tomorrow. I'd like to eat well, sleep well, get exercise and maybe take a few vitamins. Seems the healthy way to go.

This is what I know as of today.

I'll let you know what I learn tomorrow.