I'm firing another specialist

I had my hopes up with this 3rd urologist I've been seeing. I was hoping she could help me get my bladder symptoms under control. Sadly, she's being confusing both myself and my GP to no end. She has managed to tell us that I have the condition, I don't have the condition, I have a variant of the condition, I have a mild form of the condition.... her latest I don't have the condition. I have to ask myself how on earth do these 'specialists' get their jobs?

Meanwhile she has kept me on amitriptyline, wants me to do physio, and wants me to try a hormone cream to prevent uti's. Well that's nice, but you claim I'm fine doc! She then explains to me in the consult yesterday that my bladder is fine because it holds urine.... what the?!? (She gets dumbest comment award for that one.) She then explains uti symptoms to me and said I should look out for those and get tests when I have those symptoms. I'm thinking to myself is she stupid? So I then explain excuse me I'm here to see you because I have all those symptoms you just described every single day for almost 3 years and I don't always have uti's. In fact I don't have uti's most of the time as the previous urinalysis tests show. I asked can you explain why I have symptoms when I don't have uti's? She just smiles and shrugs her shoulders on me.... nice.

Well that's it.... I obviously live where urologists aren't too bright when it comes to identifying interstitial cystitis. I'm thankful for good online support groups who have been able to point me in the right direction with reading up on diagnosis requirements for urologists, etc. Here they seem to have 2 criteria only... you must have lost bladder capacity and you must have visible wall damage. The Amercian Urological Association guidelines mention no such thing... I would've thought Australian guidelines for urologists would be similar if not the same. As to living with pain, not being able to urinate properly, urgency, frequency, burning, reacting to food and drinks, not being able to walk or do activity without aggravating it.... who cares? The urologists certainly don't. All they can confirm for me is what I'm dealing with is chronic. The first urologist said I had interstitial cystitis but refused to acknowledge my kidney infections I had been hospitalised 3 times for.

I'm fed up! I'm now having to have a discussion with my GP who will be just as disappointed as me. Somehow I think I'm not going to find a urologist that knows what they're talking about... shame!

What that means for me is yet another condition that isn't controlled properly. It impacts everything else of course, including my diabetes. The pain of this condition isn't easy to control that's for sure.... some pain meds don't even touch the pain.

Galja said:

Do you live near a urogynecologist? A pelvic floor specialist? Is a fresh look by someone kinda related in specialty possible?

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yeh I think we only have about 2 of them in our city. I have to make enquiries. What I'm finding is that docs do not understand conditions where they don't know the cause. Unfortunately for me I have more than one of those. It's a case of playing with medications, etc.

I don't think I realised how much docs can mess with your head until I got sick. I'm living with bladder problems that I don't know the cause of why I've got bladder problems. This urologist I am not going back to see told me I have pelvic pain syndrome which is just a fancy way to say I'm in pain. My GP was disgusted when he heard that she had said that. He said well pain always has a cause and that's her job to find what the problem is. Also he said pain isn't your only symptom so she is ignoring your other symptoms by saying you just have pain.

Hopefully one day I may get a decent answer, and more importantly a specialist that will work with me on this one.

khkwong said:

Good consult another specialist n get a second opinion

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thanks this was my 3rd opinion so not my first specialist.

Indy51 said:

Personally, I'd start looking at alternative medicine options, though unfortunately we don't have the same expertise among practitioners in Australia. If you haven't done so, I'd really recommend you watch the video I posted of Dr Alessio Fasano talking about the causes of autoimmune disease. There are a number of protocols for healing intestinal permeability and rebalancing the gut microbiome that might help you - like the GAPS diet, the Specific Carbohydrate Diet, the Wahls Protocol and others. Since you have so many conditions, you might find the GAPS Protocol is the place to start as it has a well-established reputation for healing many conditions. The author is Dr Natasha Campbell-McBride.

I'm reposting the Dr Fasano talk for ease of reference:


(Even though I'm recommending alternative medicine, both of these doctors are MD's and Fasano is a world-renowned coeliac researcher and clinician.)

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Thanks

This is mainly addressing auto-immune disease though which I don't have.

Also I don't believe in detox diets in any form as the body is designed to detox itself.

A lot of these alternative medicine diets have things that I can't eat either.

I've already done the low FODMAP diet a few years back and none of my symptoms for any of my diseases improved one bit even with eliminating gluten, lactose, and fructans from my diet. My doctors concluded that food wasn't the cause. Of course I always get people suggesting I try this diet and that diet as they think I can make myself better with food.