Question:
Dear Trudy,I would like to be part of a support group of neurogenic bladder. I am very concerned about it as far as the urologist advised me to self-catheter twice a day. I am in shock. My husband is helping me right now but I have to get used of it. Also I am afraid that doing two catheters a day I will not able to do by myself. My bladder is working but obviously it is not doing it well. I have a lot of retention. I am very, very sad, and to read your blog made me think that not everything is lost. Forgive my English, I am Spanish speaking, and I live in Israel. Thank you if you can get in touch with me, thank you very, very much!A ReaderAnswer
Dear One,
Thank you for your email. You are exactly who I write the blog for. I agree, the diagnosis is devastating. I felt so compelled to start this blog because I felt as you do. You are very fortunate to have found out. I suffered for years before I discovered that my bladder was the size of a large melon.
As far as support groups, I am on one, on Facebook. It is called Neurogenic Bladder and Bowel. I have tried others and they have not worked for me as this one has. It is a closed group, so ask to join.
This group has helped keep me sane. Not long ago I woke up and felt complete fear. I had a busy day, I was constipated (often if you have an underactive bladder you have a underactive bowel as well.) I had bladder pain and I was off to a substitute job at a nearby school. I was not sure how I was going to pull the day off. I sent a post out to this Facebook group and really let it rip..whaaa, whaaa, whaaa, you know what I mean? I was willing, but my body was weak. It just felt good that there was a group of folks out there who understood how I felt. I received the sweetest comments and wonderful encouragement. I agree, support groups are important.
You did not mention your physical limitations in the email. Are you physically able to cath yourself? It is easy to learn. You will become more independent. Also, it might be better for you to cath more than twice a day. Talk to your doctor about this. If you are able, I promise you will get used to using a catheter. I use a small compact cath and use it about 4-5 times a day. I sit on the toilet, as I use a catheter.
I do not use a mirror because there is no need to.I find this funny because I am sure a male urologist suggested that women use a mirror. Men can see their parts. Perhaps whoever suggested that we use a mirror (a male I would bet money on) could not imagine that seeing is not important to us. We women were born with a three dimensional road map and have never seen our private parts. We need to feel. We do just fine without a mirror.
Bladder infections, are the hardest part of an underactive bladder, for me. They happen at inconvenient times. Using a catheter is not perfect and it leaves us susceptible to them. This is something that we live with, but the good thing is, we live. Perhaps we have broken bodies. All do really. What is not broken is our soul. We have a lot of living to do!
You are not alone. There are many of us that lead happy, productive, good, lives. Many children learn to use catheters too. Now you are part of our club. Welcome.