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.

What I learned today about Abnormal Vaginal Bleeding and Thyroid Disease

So, I'm bleeding. And I really should not be, as my period came and went last week.

This is (given my current health situation) obviously a bit distressing. Once again, I don't really know what is going on. I just know it is all related.

Since it is Saturday night, my reproductive endocrinologist is out of town, and my OB-GYN just declined to examine me further as of Thursday morning, my best option right now is to remain calm and wait for a logical explanation.

I decided to look into a possible connection between the fact that I have just discontinued my T3 medication and the bleeding. Sure enough, there is a definite connection.

Of course, I'm not a doctor and have no ability to diagnose myself. Who knows, maybe I'm completely wrong. Still, this is what I learned tonight while researching about the connection between thyroid and abnormal vaginal bleeding:

• Changes in thyroid levels can lead to irregular menstrual cycles, heavy menstrual cycles or loss of menstrual cycles


• Thyroid disease can cause mid-cycle vaginal bleeding


• Abnormal vaginal bleeding is often treated by adjusting levels of hormones in your body such as estrogen and progesterone

So, even though I don't have proof that the bleeding is coming from the sudden change in thyroid hormone levels, it does seem likely. Especially as I had that full MRI and CT scan just two months ago and neither showed any pelvic masses, lesions, etc. Plus I had the full CBC just last week and it was normal. I would think a serious uterine problem like cancer would have shown up in any of those.

I'm going to take it easy and assume that everything is going to be okay. It isn't that much bleeding after all. Just a bit. If I start soaking pads I'll call my OB. But for now, I think a little faith and trust are in order.

This is what I know as of today.

I'll let you know what I learn tomorrow.

What I learned today about T3 thyroid replacement hormone side effects

Ever since the beginning of January my husband has been begging me to get a second opinion about the thyroid hormone replacement medication that I went on in December. He feels that all of the medical problems I've gone through started since after I went on the medication. Here is a list of what I have been struggling with:

• extreme weight loss (10+ lbs in two months)


• heat sensitivity


• rash and mild hives from heat sensitivity


• heart palpitations


• anxiety


• depression


• headaches


• nausea


• loose bowel movements


• chest pains


• vaginal burning and dryness (constant)


• diagnosed w/ UTI but no resolution with antibiotics


• night sweats

In addition, when I first started taking the T3 I experienced hair loss and tachycardia.

I did ask my prescribing doctor on MANY occasions via email (maybe 10x?) whether these symptoms could be the result of the T3. His answer was invariably no. He said my symptoms could be due to a variety of things including stress, liver detoxification, and autoimmune disorder. Since I already have confirmed Hashimoto's thyroiditis, this last one seemed quite plausible.

As the weeks have passed, my symptoms have progressed in their severity and I have begun to look extremely gaunt. My breasts have vanished, dark circles hang under my eyes and I seem emaciated. All this, coupled with the vaginal burning and extreme worry over the Group B Strep phantasm and antibiotic reactions has had me on edge.

Throughout everything, my husband has asked again and again about the thyroid medication. I had my TSH, Free T3 and Reverse T3 levels checked twice in two months. All the bloodwork remains normal. Or rather, "perfect" - as three doctors have told me.

On Thursday when I got the referrals for vulvadynia and IC, I came home devastated and weeping. My husband once again begged me to go see a "real" endocrinologist and get my medication checked. So, I did.

I went to see an endocrinologist I had met once years ago after my second pregnancy. I told her the whole story, described my symptoms, and this is what she said:

"Your bloodwork says your thryoid is perfect. But I am looking right at you and I can tell you that clinically, you are hyperthyroid."

She based her clinical diagnosis on all of the above listed symptoms and also: my "bulging" stare, the tremor in my hands and how extremely thin I am despite eating six meals a day.

She told me to get off of the T3 immediately and give it a few weeks to clear out of my system, and then we would use a different thyroid medication to regulate my Hashimoto's and hypothyroidism. She said she expected all of the symptoms to remediate except possibly the vaginal ones, which are not necessarily explained by hyperthyroidism. (I'm thinking because there is blood in my urine and no UTI or cancer that it has got to be Interstitial Cystitis...)

I'm just excited to put some weight back on! And mostly, to have hope that things are going to get better.

I feel so grateful to my husband for pushing me incessantly to keep asking for a second (okay, fourth) opinion.

And to cap it all off, I spoke with the original prescribing doctor and he told me that he had just learned that Cytomel (T3) has gluten in it as a filler... which is not good if I truly have Celiac... so he thinks now there are several reasons why I should get off of the medicine.

In stopping the T3 I fear I am saying goodbye to mental clarity and welcoming back the brain fog I had been living with all last Fall. Still, better foggy than losing all of my flesh and muscle mass.

I'm now Day 2 of no T3 and so far, I've noticed most of all that I haven't felt itchy or as heat sensitive. I have however been waking up a lot more at night and having nightmares. Maybe it is a withdrawal thing.

If you have found this post and like me you are experiencing side effects that could possibly be from your T3 hormone replacement, please ask a qualified endocrinologist for a second opinion. There are other options out there for thyroid hormone treatment which you can use instead. I hope you will not suffer in the way that I have been suffering.

This is what I know as of today.

I'll let you know what I learn tomorrow.

What I learned today about Vulvadynia and Interstitial Cystitis

It's been a few days since I last posted, so I've learned a few new things.

First, my OB-GYN confirmed that the Group B Strep is probably not causing my symptoms after all. Group B Strep is a natural flora to the human body and usually causes no symptoms in people that it colonizes. I have apparently been heavily colonized with the stuff for almost a year with no symptoms before now - and most significantly, my symptoms did not change even while being treated (effectively, it worked) with antibiotics to kill off the population of Group B Strep.

Which means I have been prescribed at least three unnecessary antibiotics in the last two months. Oh well, at least we know that I am not allergic to penicillin now. I only wish I could have avoided all of the stress and worry.

The new diagnosis is that I may have one of two chronic pain conditions for which there is no known cure. Vulvadynia or Interstitial Cystitis. Apparently they can both cause persistent vaginal burning which increases when sitting or with pressure on the area. So, I have now been referred to two high level specialists in my city. One is a vulva clinic (who knew that there was such a thing!) and the other is a well known researcher in the field of Interstitial Cystitis.

I am still learning about both of these conditions, and I will post more information as I get it.

One thing I've learned this week is that you have to submit an application to be accepted at the vulva clinic (no joke!) including a letter of recommendation from your referring GYN. Good thing it was her idea for me to go, as I don't get the impression that anyone ever gets into a clinic like this through self-referral. They were really serious about all of the lab reports and data they wanted before they would even schedule my appointment.

The prestigious IC researcher is also difficult to get an appointment with, mostly due to the fact (according to his secretary who was very kind on the phone) that he is pretty much the only person in my city who specializes in this kind of medicine. He is inundated with women anxious to get his help. The first available appointment they had was in July. (It is now March.) I asked how long a woman can live with IC without treatment, and the answer was: years and years. There is no cure for IC. Just treatment of symptoms.

One interesting thing is that I have to keep a three day urine log to bring with me to my first appointment with the IC doctor. I've been peeing carefully into a cup and measuring the urine in ounces. What I've learned so far by doing this is that I don't drink enough water. I know you're supposed to drink 64 oz a day (which I don't) and I doubt I've gotten half that much back out in 24 hours. So, I think I need to seriously focus on hydration. It can't hurt.

So the take home message from all of this for me has been (a)You can be misdiagnosed for months with a UTI and then told that you don't have one after all, (b)High level specialists can be very difficult to get appointments with, and (c)A person can live for years or a lifetime with chronic pain that has no cure.

I guess chronic pain can go into spontaneous remission on its own though. So, there is always hope.

This is what I know as of today.

I'll let you know what I learn tomorrow.

What I learned today about Medical Clinical Policy Bulletins

As I wrote in the last post, today my GI ordered two blood tests to find out if I have genes most commonly found in people with celiac disease. Those two genes are called HLA DQ2 and HLA DQ8.

Since we've had problems in the past with excellent doctors prescribing exams and tests that our insurance company has later refused to cover, I decided to do my homework before going to the lab for the blood draw.

First I called my insurance company to ask if they would cover the test. The representative asked me for a CPT code. As I was still at my GI's office, I asked around and the secretaries and nurse tried hard to find out what it was for me. They referred me at last to client services for the hospital (billing).

Client services tried for over two hours to find out the CPT code and even "googled" it for me but had no luck. They recommended that I call the customer service department for the lab. Which I did. And fantastically, the man answering the phone knew exactly what I was talking about and gave me the CPT code for the bloodwork within minutes.

So I called back to my insurance company armed with the correct code for the procedure and this is what I learned.

Insurance companies issue clinical policy bulletins to physicians which detail research in the field related to the diagnosis, and then give directives about the "correct" route to diagnosis that will commonly yield the most positive results for the least amount of money.

Our insurance company has a website and on it there is a whole section for health providers. Your doctor can enter in several quick codes and it will bring up a wealth of medical clinical policy bulletins, detailing the insurance company's determination of "best practice".

If your doctor follows the insurance company guidelines, the procedure or medicine will be covered at your selected level of benefits. (For our family, this means 80% after we reach our annual deductible, and then 100% after we reach our co-insurance maximum.)

If your doctor chooses a procedure or medicine that he/she believes is best practice but the insurance company does not agree, your insurance company will tell you that the procedure selected is "experimental or investigational" and that neither you nor they are required to pay for it. Unless of course, you have signed a paper that says you will pay whatever insurance doesn't cover. (Which of course, every doctor's office has you sign before you even get to see the doctor or describe your symptoms...) So in the end, you as the patient are stuck with the full bill... which is not even adjusted down by your insurance company.

If you find yourself in this situation, where you've been given some test, procedure or medicine that your insurance company refuses to cover - best thing to do in my opinion is contact the office of the billing physician and find out if you can negotiate a cash price or payment plan. A lot of the time they would rather get less cash right away than spend years trying to get the full amount from you through collections agencies.

The takeaway message here is that it might be a good idea to go online to your insurance company website to find out what their medical clinical policy is about your particular situation.

For my situation, I discovered that my insurance company views both the genetic blood test ordered by my doctor AND the endoscopic procedure he discussed (wherein you swallow a vitamin sized camera that then takes pictures of your gut) as being experimental and without enough evidence to support their use. So, they are basically going to deny any services he has in mind for me.

My husband and I agreed that we would rather spend $200 for the 8 blood tests at $25 a pop to find out if I have the genes for celiac (95% accuracy) out of pocket than end up with an even more expensive endoscopy that the insurance company also won't cover. So, we're going with the blood work and I will keep everyone posted about the results.

This is what I know as of today.

I'll let you know what I learn tomorrow.

What I learned today about genetic testing for Celiac disease...

Today I went to see a gastroenterologist. As one piece of the puzzle of what is happening with my Group B Strep overgrowth, I wanted to find out once and for all if I have true Celiac disease (vs. plain gluten intolerance). I recently read a study out of Spain showing that people on a gluten free diet have a significant decrease in healthy gut flora and increase in negative gut flora like E.coli, even over the course of only one month.

I have been gluten free for almost two and a half years now and somehow my flora has gotten way out of whack. So, I went to see the GI to learn whether or not my lack of gluten could have created this situation, and how to find out definitively whether or not I need to remain gluten free.

My GI emphasised the difference between Celiac and Gluten Intolerant, explaining that if I turn out to be truly a Celiac, I must stay off of gluten for life. However, gluten intolerance in his view is not a disease but rather a question of comfort -- related more to irritable bowel syndrome -- in which case I could choose to eat gluten and see how it affected my health.

The first step will be to do a blood test to see if I have inherited genes that predispose a person to Celiac disease. The blood test is called HLA DQ2 and HLA DQ8. I am still in the process of trying to figure out if my insurance company will cover those tests.

Apparently if I do not have those genes, it is highly unlikely that I am a Celiac and then we could go on a gluten challenge diet. If I do have those genes, it is an "open and shut" case and then there is no point to putting me back on gluten.

The other news from today is that my hormone panel is back from the lab and my OB is going to go over it with me tomorrow morning. I am praying so hard that they have discovered a hormonal imbalance to help make sense of this burning and pain I have had for the last two months.

This is what I know as of today.

I'll let you know what I learn tomorrow.

Vitamin D3 Can Heal Desquamative Vaginitis

Here is something new I learned today...

Desquamative vaginitis is one of the alternate theories I am working on as a potential cause of my burning and pain.

It makes sense that Vitamin D3 could help to heal a vaginal condition since D3 is a hormone and many vaginitis conditions seem to be caused by an imbalance of hormones.

Treatment of desquamative inflammatory vaginitis with vitamin D

This is what I know as of today.

I'll let you know what I learn tomorrow.