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!
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.
An Excerpt from my book,
by JoAnne Lake (this is my real name) with Julia Parker
So, here is how to insert a catheter without looking. The key is to understand the anatomy in the female genital area (vulva). The clitoris kind of stands out on its own. The vagina is the large opening behind the clitoris. The urethral opening is between the clitoris and the vaginal opening. I start by washing my hands with soap. The catheter I use is self-lubricated, so that takes out a big step. If I accidentally touch the tip of my catheter with my hand or another object, I throw it away, to prevent infection. I do not clean my labia at the time of insertion, since I shower once a day. My urologist told me it is not necessary, anyway. There is another school of thought, and that is that cleaning your labia with an antibiotic solution before using a catheter is best. My thoughts on this vary. I know there are bacteria in the labia, but the stinging that can happen if I had to put a solution on my labia six times a day makes me “ouch” just thinking about it. For advice about this, ask your doctor.
After washing your hands, gently press the catheter in the area between the clitoris and the vaginal opening, and soon you will find the spot. There is definitely an opening, which will become apparent as you probe gently. It will happen, I promise. After I use my catheter, I throw it away because reusing catheters can cause bladder infections. If at all possible, I suggest you use a single-use catheter.