Question for Trudy:
Hi! First I want to say thanks for being brave and speaking out about this problem.
I have small, flaccid neurogenic bladder. My question is should I wear diapers? I do wear menstrual pads, but sometimes they are not strong enough to keep the fluid in, so I must change them from time to time. I do not have incontinence, but I cannot pee right, it always stays in my bladder, so I relieve myself in the pad. I cannot live in lady room, right? (Sometimes it feels like I should.)
How do you step out of your comfort zone? Going out is really a problem for me. I am always afraid I will leak in public as I have small bladder I cannot hold too much, my urgency is at 180 ml. My max. is 200 ml. I am a 26 year old women. I been having problems since I was 10 years old. I did not have any medications for it, nor catheter. I do not know why, I am also afraid it will get worse since I did not have any treatment. Tina
Trudy's Answer:
Hi Tina,
Thank you for your question.
I step out of my comfort zone because I want to live my life. I get into trouble now and then, I admit, but at this point in my life I am not ready to stay housebound and you shouldn't either.
You say you do not have an urologist that you are working with? Finding a good urologist is key. You need to see a doctor because your health depends on it. Perhaps he or she could answer some of your very important questions. Please write me back and tell me that you will do this.
There are several organizations that can help you. To find a urologist and perhaps help with product choices.
I use an intermittent catheter. I do not leak, but many do, so finding help, for the products you need, is what you need to do. For years my attitude was exactly like yours. I thought that this was what I was chosen to live with and I needed to just live with it. What I did not understand is that I was not doing my body a favor by ignoring symptoms of an underactive bladder. There are other body parts you can hurt by trying to be stoic.
Here are some contacts you can make: A quote from Beyond Embarrassment, JoAnne Lake with Julia Parker
Page 219
Start with the above contacts. There are many more in the book. I do not know where you live but if you have a teaching hospital nearby perhaps that would be a good place to start as well.
Here is another idea to help you find the products you need.
Quotes from Beyond Embarrassment, JoAnne Lake with Julia Parker
Page 76
Incontinence Pads and Diapers One of the most obvious issues people with Neurogenic Bladder deal with - and unfortunately, one of the greatest sources of frustration - is finding the best bowel- and bladder-accident protection for their needs. No two people are exactly alike, so we can't use one-size-fits-all devices and aids. What's best for leakage will not work for a full-on flood. So for "the rest of the story," I interviewed Scott Beckert, RN, an expert in the field of incontinence products, having worked with patients living with all types of urinary incontinence. He explained that, by default, many of us go to the grocery store and buy an adult brand of protection from stocking clerks who have no idea what we need. They sell us their own brand suited to a woman who dribbles, not a full drencher. The diapers in the store may be geared to light incontinence. What if a person needs help for overnight incontinence? Then a person should use a product that can contain the amount of urine that is expelled overnight. Buying an inferior product can cause frustration and perhaps disaster. The search for the perfect adult diaper or pad is daunting because there are so many products available and so many factors to consider. It is important to be well informed of your options. Scott recommends that first we look for gender-appropriate supplies. Men and women are different, and it matters. How and where the urine enters the product makes a difference in how efficiently it is absorbed.Then further down, on page 78 is:
I have found that talking to an online salesperson about my needs is most helpful. He or she is an expert in the field, and there is the added bonus of much-needed privacy. Make sure that the product you order online or over the phone includes discreet packaging. No need for your neighbors or the mailman to know your business.I hope this helps you. Please keep in touch.
