How does a urologist test you for IC?

[Impatiente]

Hello everyone,

I have an appointment in 4 days with a urologist to determine if my pain is caused by IC for which I never had a diagnosis. I don't know if it is estrogen related, stress related but I know that oxalates don't help me at all. I don't have bladder pressure or pain, I have however burning urination, vv, and sometimes; frequencies. When vv goes away for a few week, the burning and frequencies stops. I am extremely anxious because of the life style it had imposed on me. I am 53 years old...post-hysterectomy. I had endo and adenomyosis.

I would like to know what tests should be done to determine if I have IC, high-anxiety (depression), bad menopause or estrogen deficiency. I have been tested for my estrogen a year ago. I've been put on a vagifem then I used only a .0375 mcg patch for 6 months and my burning urination came back. I am now on Lox oxalate diet, patch and vagifem and it doesn't seem to help. I am sensitive to all lubricants (prop. glyc) and can't use anti-fungal cream, just difflucan and I feel a intense burning on vulva when I do use that pill.

I searched on internet, and it is not clear what kind of test (I've read about a potassium test) what the uro does to really know if you have ic and if you do, can he determine how bad it is.

Could you help me with that?

Thanks!

[MelanieR1227]

Re: How does a urologist test you for IC?

Hi Impatiente,

I'm really sorry to hear about your frustrations but you are definitely not alone! I guess it would depend on your urologist. In my experience, I was diagnosed simply by symptoms, but this was after years (over 12) of meeting with this same urologist practice (I met with various doctors in the group over that time) so they had a record on me. Why it took so long - I don't know, but I think it could be because I started with them when I was a teenager and most urologists think IC doesn't happen so young, which frustrates the heck out of me! Anyway, I was finally diagnosed last year at age 30 and put on elimiron. In my experience as a teen and in my 20s, I only had burning after eating/drinking something bad (tomatoes, soda, coffee) with no bladder pressure or pain in my abdomen. However, now I do, with urgency and frequency when my flares are at their worst. Which makes me believe that IC is a progressive disease and not something everyone has every single symptom right off the bat. I can imagine this is why it is so hard to diagnose.

I was also referred to have a hydro-distention, but declined after hearing all the horrible things about it. I've heard urologists will also refer to this in order to diagnose patients with IC, but it is a controversial subject. I would recommend researching it if your urologist recommends this for diagnosis.

I also have trouble with lubricants and always seem to have a burning sensation every time I pee after a Pap smear. For yeast infections, I always request diflucan as those over the counter creams are the worst!

I'd say explain EVERYTHING that has happened over the years to your urologist. Give them a thorough history of your systems as I've heard (and am living proof) that for most doctors to diagnose, they need a long history of symptoms. Most may not base it on something that just happened. I hope this helps!

I wish you the best of luck!!!

Melanie

[ICNDonna]

Re: How does a urologist test you for IC?

Different urologists will use different methods for diagnosing IC. At the time I was diagnosed (40 years ago) hydrodistention was usually considered the best diagnostic tool and that's how I was diagnosed --- after other potential problems had been ruled out. The good thing was that it helped with my symptoms.

These days, there are many doctors who will make a diagnosis based on symptoms plus the ruling out process to be sure there isn't something else going on. Some use the potassium sensitivity test. One thing you can do is a voiding diary between now and your appointment, writing down times and amount when you urinate. Also, I suggest you have a look at the IC diet at the link in my signature below --- you could even start the diet now. There's also a link in my signature to the American Urology Association Guidelines for Treatment, which I think may be a help in talking with your doctor.

In my forty years with diagnosed IC, my worst time was before diagnosis. Once I learned what I have, I am able to deal with it.

Sending healing thoughts,
Donna

[Impatiente]

Re: How does a urologist test you for IC?

Hi Impatiente,

I'm really sorry to hear about your frustrations but you are definitely not alone! I guess it would depend on your urologist. In my experience, I was diagnosed simply by symptoms, but this was after years (over 12) of meeting with this same urologist practice (I met with various doctors in the group over that time) so they had a record on me. Why it took so long - I don't know, but I think it could be because I started with them when I was a teenager and most urologists think IC doesn't happen so young, which frustrates the heck out of me! Anyway, I was finally diagnosed last year at age 30 and put on elimiron. In my experience as a teen and in my 20s, I only had burning after eating/drinking something bad (tomatoes, soda, coffee) with no bladder pressure or pain in my abdomen. However, now I do, with urgency and frequency when my flares are at their worst. Which makes me believe that IC is a progressive disease and not something everyone has every single symptom right off the bat. I can imagine this is why it is so hard to diagnose.

I was also referred to have a hydro-distention, but declined after hearing all the horrible things about it. I've heard urologists will also refer to this in order to diagnose patients with IC, but it is a controversial subject. I would recommend researching it if your urologist recommends this for diagnosis.

I also have trouble with lubricants and always seem to have a burning sensation every time I pee after a Pap smear. For yeast infections, I always request diflucan as those over the counter creams are the worst!

I'd say explain EVERYTHING that has happened over the years to your urologist. Give them a thorough history of your systems as I've heard (and am living proof) that for most doctors to diagnose, they need a long history of symptoms. Most may not base it on something that just happened. I hope this helps!

I wish you the best of luck!!!

Melanie

Thank you for your kind post, it really help me morally. I know I have IC, but my flare ups seem to be triggered by low estrogen. I have my bad flares only after huge physical efforts. I have also depression caused by anxiety. I drink so much water because I am afraid of the burning. It is almost normal to urinate that much.

I think, I just want to have a urologist to check on my kidneys. I will tell him the story of my last 3 years.

Thanks Melanie!

[Impatiente]

Re: How does a urologist test you for IC?

Thanks Donna,

I will read the links carefully. To be honest, I don't really know if I am looking for a diagnosis since I don't want to take any medication...I know the doctor is going to elaborate and speculate. I will be probably told that I need an antidepressant. It is the keyword in medecine now. I went to a physiatrist recently for shoulder pain and what was suggested for the pain? An antidepressant. What do they prescribe for pain nowadays; antidepressants, SSRI and anticonvulsants. I already take clonazepam and it helps. It's just that when you feel down; it makes you feel a lot more down! I tried gabapentin and that's when I hit rock bottom. This medecine made me almost suicidal. The vv is bothering me a lot more than the urination.

The truth is that I am exausted physically and I don't know if it is hormonal or emotional. I am afraid to become incontinent, I can't find the energy suddenly to do any type of exercises. I always feel like that after a big flare. But this time, it seems deeper.

I can go for a walk though... Yesterday, I went to walk for 2 hours; drank 2 bottles of water (one before and one during the walk) and went to the bathroom once. Some days, it is fine; some others it is not. It seems to go with my periods (I kept a calendar even if I had hysterectomy). When it comes around the days of my "absent" period, my estrogen drops dead. Then, if I eat something wrong; watch out!

My mind is just wondering. Is it hormonal, nervous, urinary or just menopause? Maybe it is a mix of all that.

Thank you Donna, you're so kind

[ICNDonna]

Re: How does a urologist test you for IC?

Our doctor explained to us that the reason low dose antidepressants help with pain is that they interfere with the pain receptors in the nerve system. That makes sense to me and my husband takes a 10 mg Elavil at bedtime and it helps with the pain of his arthritis --- and at that low dose it doesn't cause any side effects.

Donna

[joannharllee]

Re: How does a urologist test you for IC?

Impatiente, I had the burning bladder and vaginal region, and frequency. I went to a gynecologist who specializes in menopause. She tested my hormones, I was very low in estrogen and she diagnosed me as having vaginal atrophy. I too am very sensitive to propylene Glycol and polyethene glycol. I could not take Vagifem, it made me worse. i now use estrogen compounded by a compounding pharmacy in a coconut oil vaginal suppository. I was so sensitive down there I had to start with a tiny dose of estrogen and work my way up. Now all my symptoms--pain, burning, frequency are all gone. The compounded estrogen suppository has been a miracle for me.

I am also helped by the IC diet and especially avoiding anything with PG in it. PG is in so many things--cremes, detergent, soaps, medication (my blood pressure medication had PG in it !). I am also allergic to dairy and if I eat or drink anything with dairy in it I burn.

I would suggest you try compounded estrogen in coconut oil and the IC diet. I found more help from a gynecologist specializing in menopause than I did the urologist.

Hope you feel better soon. Jo Ann

[icnmgrjill]

Re: How does a urologist test you for IC?

Now I would actually approach this a little differently. You have three critical goals. #1 - You want to know if your bladder wall is injured/inflamed/has a lesion that could be triggering your symptoms and #2 - You also want to know if you're pelvic floor is tight and also causing some of these symptoms... and #3 you also want to know what the overall health of your skin "down there" is.

Rather than the potassium sensitivity test, most doctors now use an anesthetic challenge to test the integrity of the bladder wall. It doesn't irritate like KCL does and is much gentler on the bladder. Some doctors, though, can diagnose the bladder wall as the primary source of your discomfort from your symptoms... such as pain or distress as the bladder fills with urine, your frequency/urgency from a voiding diary (do one for a couple of days and bring it to the appointment) and/or if you react to certain foods. That all suggests bladder wall involvement.

Pelvic floor involvement has slightly different symptoms. You may NOT have issues with food. Your pain can be more intense. Your urine volumes could be higher.. and sleeping may be easier because when you're asleep generally the pelvic floor muscles are relaxed. So, you should also have a quick pelvic floor assessment during that FIRST diagnostic visit. Super easy... just a couple of minutes... no worries. If they find tight muscles, you'll be reffered to a pelvic floor physical therapist who will do a more thorough assessment to figure out which specific muscles are tight and dysfunction.

And, if you are perimenopausal or menopausal, then having the doctor just look at the health and quality of the skin on the vulva will help you determine if hormone depletion is part of your problem. If your vulva is dry, then so will your vagina, urethra and bladder... and using some hormones can help improve the quality of your skin. That's a completely separate discussion from the IC per say but is worth a quick look during that initial exam.

In general, the diagnosis does NOT require a hydrodistention or other major test UNLESS your diagnosis is in doubt or the doctor suspects that you have a Hunner's lesion. Then, it's necessary so that it can be treated promptly.

Check out the educational parts of our website to read up on this... just start at the front page and go from there. http://www.ic-network.com

Jill

[Impatiente]

Re: How does a urologist test you for IC?

Hi all!

I appreciate so much all of your posts right now. It is great support, truly. I don't have any family in the States and I don't want to worry them since they are so far.

- All your posts make sense. The thing is that I can tolerate Vagifem even if there is propylene glycol, because the pill is so tiny. I apply coconut oil on the vulva and feel no burning 3 times a week until the vulva would be healed of all the urination. It does stop my urgencies and doesn't bother my bladder. My vulva and vagina were checked and it seemed all fine...that is what my obgyn told me. She is not familiar with compounded estrogen and I live in a rural area. I don't know if there is a pharmacy that make compounded estrogen. She tested my estrogen last year and it was low. She added a .0375 mcg estradiol patch because I had frozen shoulder. I have a bad shoulder. It made the pain go away. I was fine from september to november. Then I hurt my neck badly. Same side then my bad shoulder. Then in the winter, it went down hill.


- Yes, I've seen a PT (pelvic floor) in May this year, a great woman who helped me to adjust my stretches because of my bad shoulder. I made them twice a day, the whole routine (Amy Stein book). I was pain free, completely, for 3 weeks. But in the same period of time, I was going in PT also for a pinched nerve in my neck. Last winter, I was sleep deprived because of my neck injury and at the spring; I was prescribed gabapentin to make me sleep, decrease my anxiety and stop the nerve pain. If my pain (urethra and vagina) is caused by nerve pain; well it didn't go away with gabapentin. My neck pain did go away though...All these intense exercises at the Spring, bad sleep nights (last winter), pain and whatever they put in Tylenol...brought back urgencies for 3 weeks in July. I am so tired...

My next step after the urologist is to find a good endocrinologist because I personaly suspect adrenal fatigue. I am normally a very active person, and I physically can't go on with physical exercises anymore. I am tired after 5 minutes on the treadmill. It is not my mind, it is my body.

- Can I put up with 10 mg of elavil Donna? Maybe yes but I fear the side effects. But I should definively try it before I get so down and need Effexor or something like that.

So, since I know I see a urologist; I feel better. Also, it is because of you all who keep on posting. Thank you so much. I use my patch, Vagifem for another month or two when all the symptoms will be gone. Right now I am fine but just tired, very tired. I also got a squirt bottle and I guess, oxalates are done flushing because it feels better in this area.

I am going to consider a test for IC, one that doesn't give me pain. I just can't mentally take any more pain. There is a limit to what a human being can take. I suffered adenomyosis bad since 3 years. My hysterectomy saved my life. I don't want to pack up with estrogen, since it may bring back my endo pain. It is not because your uterus is gone that endo is over if you keep the ovaries.

I am on L.O.D. I should mention that almonds, which are on the IC food list are high in oxalates. While I was on PT (may, june) I was eating home made granola made with almond extract....and almonds every morning. I was eating potatoes a lot, we ate on the grill often. Sesame (very high) snacks, the tiny bits at the nature store...These are all high in oxalates. Then I tried spaghetti meatballs and that was it! Outch! Not bladder pain though, urethra burning and I flushed during weeks in July. A whole winter taking Tylenol arthritis for my shoulder (4/day), gabapentin (2 months - 300 mg/day), high oxalates foods (not knowing it was high in oxalates...) stress, pain, menopause; that was it. I have to eat something, I am so skinny that when people meet me, the first thing they ask it's if I am sick. No wonder I can't store estrogen, I have no butt, no breast, no belly.....!!! I am not a Kardashian, lol Some of my neighbors asked me if I had cancer! Very good for stress...So I stay home. Not good for moral...It is a vicious circle that I am in ladies!

Now, my next after the urologist is to have all my hormones checked by an endocrinologist because I have hypothyroidism since I was 34 years old.

Thank you so much to you women, God bless you all! I take all of your advices in consideration and I am very grateful.

I am on the L.O.D (search for yahoo group for the food list) and it helps a lot. I had a binge in peanuts just before my major flare in July. Everything has to be gradual and balanced with that diet. I was doing the IC diet only after a flare in the last year. It is not good to do that when you realize how oxalates are tricky.

Thank you again from the bottom of my heart.