Urologist update

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So I'm pretty frustrated now. Last week I had the urodynamics test done. They tried to fill my bladder, and started at (speed) 20 and it was pretty quick that my bladder contracted and then leaked. They tried several times at that speed with the same results. Finally they slowed it to a 10 and it took only a bit longer before my bladder contracted again.. so clearly the results showed what I have expressed to them, that my bladder thinks it's full when it's not which causes leaks. Also my flow was slow, which I routinely notice. Well when I went in for my follow up appointment today to review the results, the doctor asked me how it went and I retold everything, while asking her if she had the results herself (why was she asking) and mentioned to her I had anxiety about having to have the appointment and that the nurses administering it did not help because they kept acting shocked to each other at what was going on in my test. So she just proceeds to say, well I am going to count that as a useless test because you are too young to have the results that showed from the test ao your anxiety must've thrown off the test. She then asked me about my accidents, asking me, so are most of your accidents when you have put off going to the bathroom and then are like, oh crap, too late, or what? I found that insensitive and demeaning like I am a child too absorbed in video games or something to go to the bathroom on time. I once again explained the urgea out of nowhere and that I usually go frequently and even after an accident still go in the toilet after. Then only at my request did she order blood work to rule out certain causes. Then she just told me to do Kegels twice a day and come back in 3 months. Really??? I am at a loss and disbelief. I was hoping for answers and all I got was the results can't be right because you're too young. Should I go for a second opinion or are all urologists this insensitive, unconcerned and dismissive?

 

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I'm sorry you had a poor experience. I have found, visiting 3 different urologists that they don't necessarily have the answer. I have received 3 unique diagnosis from 3 urologists. I would though get a second opinion if that is reasonable for you to do, as patients it is important we advocate for ourselves.

 

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Agreed, even if you don’t get a definitive cause or answer, a doctor should have a better bedside manner. None of my 4 urologists have ever been that insensitive or demeaning. Regardless of whether you get a different answer (the Tests can travel to your next doctor) you should have a doctor with whom you can feel comfortable that will not exacerbate anxiety

 

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Sarah,
I’m sorry to hear that you had such a poor experience, sadly I think you’ll find that type of disregard / dismissal not so uncommon with a lot of folks in this group…. To many of these Docs A=A or B=B, but never could A cause C? That would require critical thinking! I won’t even go into the “experiments” that were done to me, I’ll just say I live with those very painful results 30 years later….
I have to take some of the blame as I was young, desperate and I trusted Drs. I shouldn’t have. I didn’t have a group like this to turn to, so I simply trusted them.
I would seek out another Dr. as the symptoms you describe are textbook OAB. If it gets painful to hold, then maybe some interstitial cystitis (inflammation of the bladder wall) too. With our disease you can have A=C+D+Z-Y, rarely are two the same.
I know it’s frustrating,as I’m going through something similar myself right now. After 15+ spine surgeries to date, my PCP thought we should try another group of neurologists just to get a fresh look, as I had been injected with some WRONG MEDICINE which within hours induced a series of mini strokes last year, and by the time I got to the ER it was too late, they do have a drug to fix their mistake, but it would kill me, GREAT??
After 30 years the bowel incontinence is back, along with a variety of other side effects, one you and possibly some of the other women brave enough to give birth might be aware of? It’s call Diastasis Recti, where as I understand it: as the baby grows it can literally tear the abdominal muscles loose, pulling them to the sides to make room. In my case, Monday night I woke up once again with these horrible body spasms from that medication (the spasms have already torn my knees apart) this one was so intense it tore my chest / abdominal wall in two, leaving me with a lump of muscle larger than my fist protruding out of my chest/ abdomen just below my heart. Still, these “New” Neuro’ wont tell anyone including my referring doctors what has gone wrong in my spine now, only that there is new & severe damage at 3 different levels of my lumbar spine?
Sarah, I apologize for going on a rant, it just seems to be so hard to get “good” care these days, while at the same time I have a core team of fabulous Docs who are as frustrated as me.
I know you’ll never believe this, but the Dr. that administered the muscle relaxer that started all of this, and the “New Neuro” have still not returned a call to me or my Drs or possibly stopped by my hospital room (same hospital both work in)?

Hang in there, we’re all pulling for you!

 

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Theres already some good advice given to you here in this forum, so I will keep it short. I believe that most urologist really do not know how to cure incontinence. I think they rely on the body healing itself and kagels seem to be helpful in that regard so they go with that most of the time. My take on what you wrote would be to find another urologist that you feel is acting in your best interest. And keep looking till you find one.

 

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Sarah think of the doctor who you had the best communication with doesn't matter a specialty. Ask for an appointment for a referral by to a doctor they recommend?

Try to find a uro gynocolgist?

I will tell y the most empathetic medical care I ever got was at planned Parenthood. Yo could try an appointment with them for a basic check up and then tell her the problem.

On the whole although it is hard to hear we aren't getting easy fixes for Over active bladder here.

 

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Time for a new doctor. One that is at least respectful. Find a different clinic and tell your clinic why you are leaving.

 

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I am a believer in second and third opinions. And verify specialized doctors and what they offer.

 

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Sarah,
I simply want to send you my apologies regarding my response to your post expressing your frustration with your tests and Doctor, and the overall apathy apparent in the way you were “Handled” by your doctor.
You came here seeking help, direction & support, and instead I handed out my rage, anger & frustration based on what I was going through.
That is entirely unfair to you, as by expressing my anger I diminished your suffering & frustration and did little to support you, lift you up and offer help. My frustration with my situation is no excuse period!

Again my sincerest apologies, I assure you it won’t happen again. You deserve better.
Best regards,
Tom

 

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Tom/sprung when I read your post I thought the terrible things you are going through it are worthy of a separate post. I don't know if you are home or in hospital right now but you are dealing with a lot. This post from yo tells us what a good head you still have on your shoulders. Wishing you relief and health.

 

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@Maymay941 I didn't know Planned Parenthood saw patients for urology needs, but unfortunately I can not see anyone there due to my deep conviction against abortion, which is one of the main things they do.

 

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@Sprung87 You have no need to apologize for anything! This forum is for everyone to give and receive empathy, and often something one person suffers can bring up a memory of something similar they went through. You sharing it helps me and others know we are not alone. Don't ever think you need to hold back your own stories to be empathetic to someone else!