No answers...I'm a mystery it seems

[Sher E]

I went to the Uro today and told him of my progress and continued pain since our last visit. I told him how certain foods seem to trigger me and the level and type of bladder pain I'm feeling. I even brought up the use of Doxycyclin.

He does not think I have IC because I don't have the classic symptoms of urgency & frequency. He explained that with IC patients they can not hold much urine and the fact that he put 12 oz in my bladder and I wasn't racing to the bathroom is usually an indicator that it's not IC. He would not give me an antibiotic just for the sake of doing so since my unrine is clear. He obviously doesn't buy into the "let's just see if it works" theory.

He said for me to wait another month and if my pain was still there that he would do a biopsy. But I'm miserable. Although the pain is bearable (today it feels like one nerve that runs from the pubic bone area to the middle of my bladder is irritated~like it's being pinched), I feel so hopeless. He thinks maybe something else is irritating me like the endometriosis. But I have had endo for years and it has never effected my bladder. It seems neither my Gyno or the Uro know what to do. My GYN suggested putting me on Lupron to reduce the endo pain... I don't know what to do.

Is there anyone here that has been diagnosed with IC by biopsy or distention that has only bladder pain? That is no burning, no urgency, no frequency. Just bladder pain.

I'm just as afraid of being diagnosed wrongly with IC as well.

Replys welcome.

Thanks.

[BigFig]

Hi Sher, I am one that does not have the urgency or frequency and I have IC. I was diagnosed in December without the hydro. Even though the cystoscopy I had in the office didn't show any evidence of IC, my symptoms and tests that I had done were enough for my uro to determine it was IC. I did just have a hydro three weeks ago, not for diagnosis, but for a bladder biopsy, pics and capacity and to hopefully give me some relief. It confirmed IC. Even though I didn't have visible Hunners Ulcers I did have Glomerulations and inflamation. I am glad I had it done, even though I had been diagnosed, it was always in the back of my mind that maybe it wasn't IC.

[Sher E]

What are your symptoms like Fig?

He has me wondering if I have a "hysterical bladder"... could it be something else? It was weird but after leaving his office my symptoms almost seemed to lessen. Like once my mind heard "No IC" that it decided to let my bladder rest. I know how powerful the mind can be after suffering with anxiety attacks. When ever it feels like screwing with you (your brain that is) it just does it.

Since my post I've emailed my OB/GYN to ask him his thoughts and what I should do next. At some point you start to wonder if there isn't something more serious... like a tumor pressing on the bladder or something neurologically.

Have you heard of any IC'ers having an MRI during the diagnosis phase? And what tests did you have done (besides hysto) that confirmed IC?

Do you have relief?

[Emma's Mommy]

i had an ultrasound, x-rays, and CAT scan all to make sure it wasn't another problem which just made my OBGYN and Uro point more towards IC....i am schduled for an cysto/hydro April 21st to conferm the IC....the might just be making sure it isnt something else


What are your symptoms like Fig?

He has me wondering if I have a "hysterical bladder"... could it be something else? It was weird but after leaving his office my symptoms almost seemed to lessen. Like once my mind heard "No IC" that it decided to let my bladder rest. I know how powerful the mind can be after suffering with anxiety attacks. When ever it feels like screwing with you (your brain that is) it just does it.

Since my post I've emailed my OB/GYN to ask him his thoughts and what I should do next. At some point you start to wonder if there isn't something more serious... like a tumor pressing on the bladder or something neurologically.

Have you heard of any IC'ers having an MRI during the diagnosis phase? And what tests did you have done (besides hysto) that confirmed IC?

Do you have relief?

[Sher E]

Erika~ Do you have the urgency, frequency or only pain?

[rosesitty]

Sher - not everyone with IC has frequency and urgency. Everyone's symptoms can vary significantly. That's what makes it so difficult to diagnose and treat. In fact, for 2 1/2 years, I just had mild symptoms. Some occasional bladder burning and discomfort, and occasional urethral pain, but never frequency and/or urgency. I've been in a flare since November and have had some frequency and urgency, but not continuously. Right now I have bladder and urethral burning and discomfort - and some pelvic floor spasming, but I have normal voiding. Also, IC can be diagnosed by cystoscopy and by symptomology. I haven't had hydro or PST. There are meds that can be prescribed that could potentially help your pain. The first thing that comes to mind is hydroxizine (Elavil). It's an anti-depressant, but usually is prescribed for pain. If it were me, I probably would do some research and find another uro that specializes in IC. You could go for a consult. I live in Portland and went up to Seattle to meet with an IC specialist to develop a treatment plan.
I hope you find some relief soon!
Stephanie

[Emma's Mommy]

it depends on the pain.....when i'm having a really bad day it's usually all 3....and i end up spending all day in the bathroom not being able to pee and crying my eyes out. On the good days i just have some mild discomfort in my bladder and urethra....i call it mild but others who don't have IC or who havn't had this type of pain would call it major b/c it hurts alot. i'm sure once my diagnosis is confermed and we develop a better pain management stragity that i won't always be in this type of pain.....but for now it's either this or live my life drugged up, and i'm no good to my daughter when i'm sleeping on the floor b/c i'm drugged up on pain pills. I have to think of her too.


Erika~ Do you have the urgency, frequency or only pain?

[patricia1]

The others are right, you do not have to have urgency and freq to have IC. There are some with only pain and others with the urgency & freq and some with all 3. It sounds to me he might have done an in-office cysto? If so this will not diagnose IC. You must have the cysto with hydro done under sedation for that. I had many, many in-office cysto before my diagnose and they never diagnosed me with IC. While your pain could come from Endo, it could also come from something else. Has your uro suggested a PST (potassium sent test)? This can diagnose IC with out surgery...

[BigFig]

What are your symptoms like Fig?

He has me wondering if I have a "hysterical bladder"... could it be something else? It was weird but after leaving his office my symptoms almost seemed to lessen. Like once my mind heard "No IC" that it decided to let my bladder rest. I know how powerful the mind can be after suffering with anxiety attacks. When ever it feels like screwing with you (your brain that is) it just does it.

Since my post I've emailed my OB/GYN to ask him his thoughts and what I should do next. At some point you start to wonder if there isn't something more serious... like a tumor pressing on the bladder or something neurologically.

Have you heard of any IC'ers having an MRI during the diagnosis phase? And what tests did you have done (besides hysto) that confirmed IC?

Do you have relief?

Sher, interesting, when I left my doc's office (after we scheduled the hydro) I had a couple of days that I was pretty much pain free. But, it came back. I think it's our brain playing tricks on us.

My symptoms in the beginning were the worst. Of course I had alot of vulvar pain, which if you have this kind of pain you know how bad it can be. I couldn't sit, walk, wear pants or undies. I pretty much lived in sweats and used a heating pad while I was laying down, if I did sit it was with my legs spread. I felt swollen and like I was on fire. I saw my gyno and she did a ultra sound, which they found cyst on both of both ovaries, which were small and they said should not be causing my pain. She put me on 1gm of Estrace Cream that I use every night and believe me it helped. Before I saw my gyno I had several test done, CT Scan, Xrays (rule out stones), blood work (rule out cancer) and then I had a IV CT Scan and numberous other blood work and urine samples/cultures.

My pain was in my left leg (thigh area) arm, wrist, lower back and vulva. I also had left kidney pain. I just felt horrible all over. Really sick. My symptoms are better now. When my bladder is flaring I get uretha spasms, kidney pain and lower back. The vulva pain in gone (YEA!) at the moment.

I have not heard of anyone using and MRI for diagnosis. Hope this helps some. Good luck!

Carol

[Sher E]

Well, hopefully he will order a CAT or MRI which ever is the best suited. I haven't had much in the way of vulva pain, although this past weekend I did experience a feeling of irritation (not fire but sore and prickly) of the outer labia to the point of taking off my jeans and undies and just wearing sweats. Lately I'm feeling my Urethra even when I'm sitting I notice it feels a bit raw. Although when I pee it doesn't burn.

I so hope the symptoms do not escalate because of the nerves irritating other surrounding nerves.

Lunch today was difficult as I scanned the menu and came up with Fettucine Alfredo (which doesn't thrill me). Who knows if that will cause me grief. I really wish I knew what was happening. I feel tender today, nothing needing pain meds, but enough to be aware that I have a bladder that is not well.

What meds do you take Carol?

[Casi]

Hi Sher, have you had a cystoscopy with hydroodistention? That's the best to tell if it's IC. I don't have frequency a lot, but the urgency is pretty bad. But when I was first diagnosed my main complaint was pelvic pain. I have real bad urgency and didn't know it until I described my symptoms to my uro and she said that's what urgency is.
Im sorry you are feeling bad, I know what it's like to feel hopeless trust me. I finally have a good uro and we are trying some natrual remedies and self hypnosis which is pretty much deep relaxation.
It's not a good feeling to not know what's going on when you know it's something, just don't know what exactly. I cannot give medical advice of course, but it sounds like you do need a cystoscopy with your bladder distended (sp?) so your dr would be able to see the pinpoint hemorages if there are any. You mentioned you could feel your urethra and I can feel mine a lot of time too. I get bad urethral spasms sometimes and they are horrible!!
I really hope you get some answers SOON. It's like you don't want anything to be wrong, but if there is you want to know what it is so it can be treated.
Keep us updated on whats going on, and I hope things get better. This website is the best, and the people are wonderful and helpful!!!!! :grouphug: :grouphug:

[BigFig]

What meds do you take Carol?

Hi Sher, I currently am taking for my IC Elavil 25mg, Nuerontin 600mg, Cymbalta 60mg all at bedtime. I also take hydrocodone as needed for pain.

[ICNDonna]

A 12 ounce bladder capacity does not automatically rule out IC. Normal bladder capacity, when awake, is about 16 ounces so you are a little under that, but still might be considered normal capacity.

Have you read the information in the Patient Handbook about symptoms? You'll find the link to the handbook at the top of this page. If you feel you fit the pattern and your doctor isn't listening to you, my suggestion would be to see a different urologist for a second opinion. You'll want to pick a doctor who is not in the same practice group as your current doctor for the second opinion.

While I hope you do not have IC, it's best to know if you do have so you can begin treatment and take some steps to help you feel better.

Sending warm hugs,
Donna

[BigFig]

A 12 ounce bladder capacity does not automatically rule out IC. Normal bladder capacity, when awake, is about 16 ounces so you are a little under that, but still might be considered normal capacity.

Donna

Sher, I'm with Donna on this one. My bladder capacity when I had my hydro was good. Like I said I didn't have the urgency or frequency (hopefully never will) like typical ICer's do and I have IC.