Dealing with doctors...

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Hey everyone!

Looking for some advice on dealing with some doctors. Last year I was diagnosed with OAB and urge incontinence and was started on medication. I tried two different types and both gave me some severe side effects. Needless to say I quit taking them and resorted to protective underwear to manage this.

Aside from my urologist, I have been to other doctors for unrelated issues and are asked what medication I’m on after seeing I have OAB and incontinence. When I tell them I don’t currently take any medication for it and manage with underwear I always get some off color remark or they try to push further testing or different medication on me.

Did I ever expect at 30 I would need to wear diapers? Well no and it’s not always the easiest thing but right now it is what works and is best for me. My question is what is everyone else’s experience with wearing protection and dealing with doctors? Have any of you had similar experiences?

Thanks for any feedback!!

 

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My urologist was very understanding with my side effects. She helped with other alternatives like exercise and diet. She also helped with insurance covering 180 diapers a month (they are not the best).I'm 37 and never imagined I would have to wear diapers

 

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Have you asked your urologist about treatments beyond meds? There are several treatments available after you've tried at least 2 meds....PTNS, Botox and SNS. Each has drawbacks but most people get some improvements. If your urologist doesn't offer these later stage options, you can ask him/her to refer to someone who does.

 

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Oh my urologist is fantastic!!! She is one of those doctors who is there if I need anything but pushes nothing on me. I have tried Botox which did help some but didn’t fix the problem by any means. My issue is with other doctors like my GP or random doctors I go to when sick. Sorry for the confusion

 

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I am now taking two different meds that seem to be helping my fecal incontinence issues. 1 immodiom tablet and one dose of cholestyramine (packet) in the morning. It has only been 4 days. So I would keep reading asking and experimenting with what might work for you. I was wearing diapers daily and yesterday went without. So good luck

 

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It seems like some of the clinical studies on the stimulation technologies - PTNS (no implant), SNS (implant) - address multiple issues including urinary and fecal incontinence. Most people get some amount of symptom resolution but Inconguy is right...nothing seems to fix it all the way.

 

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That's tough coming from your doctor. Yes I had similar situation years ago in that different medications were prescribed with some help during the day but none overnight. Once I was diagnosed with a neurogenic bladder, probably since birth all he offered was surgery which may or may not help. My history with surgeries has been extremely negative so I'm not excited about that idea especially since its a maybe help at best. My urologist doesn't care one way or another about diapers and only worries about skin irritations. I am very lucky in that department because I never have any skin problems related to wetting.

 

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Starting about three years ago, my urologist tried me on 6 different drugs for my OAB and urge incontinence. I tried each of the drugs for 3 months. All of them except the oxybutynin skin patch caused side effects that were unpleasant but could have been lived with if the drug helped my incontinece. However, none of the drugs helped significantly. I’ve found that wearing a good, high-capacity diaper is a good way to manage my condition and get on with living a normal life.

 

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Wow. I'm trying to decide about the options for third line therapies because I the meds make me feel terrible. Were any of you offered those options? I really don't want to have a big back surgery...

 

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I have had a long discussion with my urologist about this, after 14 years of treatments and medication that were invasive, had side effects and did not entirely cure my incontinence or symptoms (pain, urgency, issues sleeping, not emptying) we finally opted for a procedure that provided relief but created almost total incontinence. I was worried but needed relief, BEST decision I ever made. Total 24/7 incontinence has not been the end of the world I thought it was, if I knew 15 years ago what I know now, would have skipped the years of misery. I had a blunt conversation with my Uro that good incon products make it very easy to deal with and that they don't counsel people on this and that is a big problem. She agreed and they have actually sought my advice to help others with products. Bottom line, communicating the discomfort and feelings you are having to your Doc is key, we often don't disclose those things. I have had many other Docs comment and I tell them this story (and to SUCK it!) Good luck everyone

 

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"Off-color remark"? That is unprofessional and, in my opinion, unacceptable. Perhaps you could try telling the MDs who are trying to push other medications and tests that you have an excellent urologist and that you would prefer not to confuse the issue by dealing with more than one physician, then start talking about the reason for your visit. Ask if the offending MD would like to consult with your urologist, and offer to give him/her the urologist's card. (Just be sure to carry a few such cards with you, on the off chance that someone accepts the offer.)

 

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I’ve been to 13 doctors. They pretty much all sucked. I had one urologist make a rude comment to me once during an exam. It was my last visit to his office, he was a HUGE asshole, and I wanted to punch him. I think if you are “matter of fact” about wearing diapers and you are clear that you are content with being in diapers as a management option. If you are clear about being done with meds and being ok with the diapers they won’t push treatments anymore. It’s your life, be your own advocate.