Dealing with OAB and struggling to stop thinking about my bladder

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Hi All,

I am looking for words of support about my OAB. I had to have an operation that did not go well and cause me extreme distress. Ever since my bladder has not been the same. I never used to have to think about my bladder or going to the loo. It was in my subconscious and I just went when I needed to. Now its like the opposite I wear thick pads and I never now when my bladder is going to cramp up and give me that urgent need to go. It frightens me and I can’t stop worrying about it. I worry I will never stop worrying about my bladder and when will it leave me and I get so down about it. It mainly happens in stressful situations like when I am walking to work etc so there is a connection between my brain and bladder definitely. I feel like if I didnt think about my bladder then this wouldn’t be so bad. I am having pelvic floor training excercises. I guess I feel i dont know my bladder anymore. So any words of encouragement to tell me I will get through this would be amazing. Thanks

 

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I have OAB that is the result of radiation treatments for prostate cancer. The symptoms came on unexpectedly several months after the treatments ended - urges, cramps, pain. I also became totally incontinent. Eventually, the doctors implanted an Artificial Urinary Sphincter to control the leaking, and this was like a miracle. For the urges, cramps, and pain, they put me on Gemtesa, which reduced all of these symptoms, but not to zero. The symptoms are worse when I am stressed, so I try to calm myself and relax my pelvic muscles, which helps. Finally, you will get to know your pain and other symptoms. You will understand your body, and what helps to offer relief, which in turn, reduces your stress.

 

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Thanks Ricard I really appreciate your reply. I am finding it tough at the moment. Did it take you some time to get to understand your body again. I am just curious? Would you mind if i asked you how you spread your fluid intake out over the day? Thanks again

 

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I have OAB and an enlarged prostate that causes my incontinence, During the day at home I wear Depend underwear, and can usually get to the toilet without much problem, but need to wear diapers to bed. When traveling, I have to wear diapers constantly, and am always concerned that someone might notice. But, I have decided that I will not allow my bladder to control me. I will live life in spite of my bladder, and do what I want to do regardless if I am wearing diapers. I am always reminded how blessed I am to only have to deal with my incontinence and diapers, when I see others with much worse problems. When life gives me lemons, I make lemonade.

 

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I have OAB as a result of prostate surgery. I am continent (with an occasional leak/dribble) but the urge comes fast and intense and it is frustrating when you don't have quick access to a toilet. On top of this, I've had salvage radiation (my cancer came back) and the OAB was at first worse, but now 3 months after my treatment ended it has settled down to what it was before the radiation therapy.

If your Dr. has eliminated a medical problem like a UTI, then you can start with conservative methods like: altering diet (avoid carbonated drinks, etc. - this helped me), bladder training (this helps), pelvic floor exercises with three different PTs (it helps, and it is good that you are doing this), pumpkin seed oil (limited medical evidence on this - didn't help me), transcutaneous electric nerve stimulation (using a TENS unit...works for some, not sure if it is helping me but still trying), medication (Oxybutynin - helped but side effects were not good)... Your PT and Dr. can guide you.

One of my PTs emphasized the bladder/brain connection, and that OAB is related to thinking waaay too much about your bladder. I agree, but trying NOT to think about it can only happen if I am distracted by doing something active like golfing or gardening or changing the oil. This helps.

I too wish for the days when I never gave my bladder a thought. When voiding was just natural, and I never worried about where the closest toilet was. I still have OAB, but there are many tools to deal with this issue effectively so I haven't given up. For me, there has been some minor improvement over the months, but I know for sure that I have learned to manage it better and think about it less. So I'm encouraged.

 

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Thanks so much I am glad it isn’t just me who wishes for the days when I never gave my bladder a thought.It really helps to know I am not alone. It’s hard to distract myself and honestly there have been days were I have thought about giving up. They have put me on anti depressants as a result. No UTI but I have had a camera in the bladder and they havre confirmed it is muscly in line with over active bladder. You have been through so much I really appreciate you responding. I have not heard of the tens unit I will look into that. I start my Pelvic Floor exercises with a PT on Friday. I will look into the bladder retraining - I guess I am quite new to all this really.

 

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I can’t recommend getting Botox injections in the bladder enough. Your physician administers them. They stop my daytime incontinence by 90% and my nighttime by 65 to 70%.

 

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I promise you will also feel better with time. If somebody had said that to me in the first 2 to 3 years of my suffering, I wouldn’t have believed them that it was going to get better, but it did and now I notice it but don’t obsess over it any more.

 

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@Zowxuk6kasqy - Hello Z. Re Bobsyeruncle. I take Pumpkin Seed Oil. The NOW brand 1000 mg from Amazon. 2 gel caps twice a day morning and night. Reading the reviews, some people said that they noticed improvement with bladder control quickly. Others said it took 4-6 weeks. I was in the later group. Honestly, it is not like WOW, I'm cured. Not even close. But, it does help some. At least for me enough to notice. - whatever that means to you. If you Goggle it there are other health benefits, but for us who cares about that. Just fix my bladder. I decided to stop taking it to see if I really noticed a difference. Too early to tell on that point, but I just decided to chime in. Wishing you the best - Pam

 

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@snow Are there any down sides to Botox injections in the bladder? How often do you have to get the injections?

 

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@JoelCairo if you get too much Botox, it can cause urinary retention. That’s the only real side effect. I get it every 3-5 minutes.

 

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.@Pammy53 Thanks Pammy53. I was taking 1000 mg per day of the NOW brand pumpkin seed oil. If I understand you correctly, you are taking 2 gel caps in the a.m. and 2 more at night. A total of 4000 mg/day. That's 4x more than I was taking, which might explain why I didn't see any improvements.

I'm glad this has helped you.

 

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@Bobsyeruncle - Well, Bob like I said, It can take some time. For me I was in the 4-6 weeks group. For others results were quicker. It does help "some" - and yes, 4000mg a day split AM and PM - Pam

 

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@snow Thanks, Snow. I'll ask my urologist about it. Did you mean every 3 to 5 months?

 

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@JoelCairo Yes, sorry, every 3 to 5 months.