Understanding Your Bladder Part Two
Soon after I posted part one of this blog, a lovely lady left a comment saying she was amazed at how I had adjusted to my new situation doing self cath. I wish I could say it was easy but it wasn’t. I wish I could say I am brave, but I am not. I do what I have to do in order to continue living my life. The truth is, I had no choice. The Foley catheter gives me serious pain and feels like a knife is cutting into me as I walk. When Dr. Kim did the cystoscopy before the last surgery three weeks ago, she pointed out the raw looking places on the inside of my bladder and said that that is what the Foley does to me and it is the cause of my infections. So doing self cath is my only option right now. The reason I write about it is because there are many of us doing this and no one likes to talk about it. However we need to, to those who understand how this feels because it eats away at our spirit if we don’t.
We already suffer the consequences of injuries that never should happen because of a ‘simple and non evasive’ surgery. I write because I want mesh manufacturers to know what these products are doing to us both medically and spiritually. I also want women to know all this BEFORE they have bladder sling surgery. These are the side effects no doctor will tell you because it is kept under wraps. It’s time it wasn’t.
Before I had this surgery I was like every other woman. I took my bodily functions for granted as I went about my day. I think back about my childhood in England. We called it ‘going to the loo’ when we felt that rush of a full bladder. It felt like such a relief to empty when we had left it for too long. Even now I can remember how a full bladder sounds as it empties into a toilet. However I used to think that sound was too loud and embarrassing and I wished I could go to the loo a bit quieter. How I would love to hear that loud sound now! Now all I hear is a slow trickle into the toilet and even that is music to my ears. That sound has only been in recent days and it is such sweet welcome music.
You could not have paid me to read up on bladder function before all this happened to me. I had no desire to learn anything medical even though I am an avid reader and love learning. It just wasn’t my thing. I just don’t do medical and yet here I am trying to figure out what I can do to stay alive and well as I get older. Reading is scary yes, but if I don’t understand my options now, if things turn from bad to worse, how am I going to make an informed decision when the time comes? Well I can’t unless I understand each option and to know how my bladder works to understand what options I have to choose when the time comes. I simply cannot run away or bury my head in the sand even though I truly want to.
So first thing I did was find a link to help me understand every part of my urinary track system. It was important to understand how things worked to know if mine wasn’t working the way it should. This is the link. http://kidney.niddk.nih.gov/kudiseases/pubs/yoururinary
This link tells you everything you never wanted to know about your bladder but now you have to if you are suffering from mesh complications that affect your bladder. It is written so that any lay person can understand the language and you don’t need a medical degree to figure out words not used in daily language. I have taken one simple sentence from this link that describes the function of the bladder. The bladder is a hollow muscular organ shaped like a balloon. It sits in your pelvis and is held in place by ligaments attached to other organs and the pelvic bones. The bladder stores urine until you are ready to go to the bathroom to empty it. It swells into a round shape when it is full and gets smaller when empty. If the urinary system is healthy, the bladder can hold up to 16 ounces (2 cups) of urine comfortably for 2 to 5 hours. .
The urodynamics test goes by CC’s which is surprising because we don’t use those liquid measurements here in this country. I of course was quite curious as to how much my bladder now held in comparison with a normal bladder and one day put water in a measuring jug. It really isn’t very much. I had to make green tea this morning so decided to show you how much a normal bladder holds verses mine. Even a normal bladder doesn’t hold a huge amount which is why when we wait too long, we really do feel like we are busting to go.
I never really thought much about how much urine I could hold before this surgery. It just happened as I drank fluids and I went to empty as I felt the need to go. However, I have learned that the bladder is more than a muscle. It takes nerves to tell us when we are full and when we need to empty. Those nerves inform our brain when it is time for us to go.
This is also from that same link. Nerves in the bladder tell you when it is time to urinate, or empty your bladder. As the bladder first fills with urine, you may notice a feeling that you need to urinate. The sensation to urinate becomes stronger as the bladder continues to fill and reaches its limit. At that point, nerves from the bladder send a message to the brain that the bladder is full, and your urge to empty your bladder intensifies. I took this for granted too until I realized that I did not know when it is time for me to go. Believe me it took me a LONG time to realize it and at first I did not want to face it.
If you have been dealing with mesh complications for some time then you will know all too well about urodynamics testing. In the past nine months I have had three of these tests done before each of the surgeries I had to remove the mesh sling and reconstruction. This site also explains why this is done.
Urodynamic tests evaluate the storage of urine in the bladder and the flow of urine from the bladder through the urethra. Your doctor may want to do a urodynamic test if you are having symptoms that suggest problems with the muscles or nerves of your lower urinary system and pelvis-ureters, bladder, urethra, and sphincter muscles. Urodynamic tests measure the contraction of the bladder muscle as it fills and empties. The test is done by inserting a small tube called a catheter through your urethra into your bladder to fill it either with water or a gas. Another small tube is inserted into your rectum or vagina to measure the pressure put on your bladder when you strain or cough. Other bladder tests use x-ray dye instead of water so that x-ray pictures can be taken when the bladder fills and empties to detect any abnormalities in the shape and function of the bladder. These tests take about an hour.
I never thought much about it before the last time I sat in Dr. Kim’s office and she had the results of the urodynamics test in her hand and I saw all the notes she had made on it. I realized that a good urologist has to study the test and figure out how ‘normal’ our bladders are once a mesh sling has been removed. We don’t realize how much work is involved to understand and interpret these results to get us the help we need. I am at last learning to appreciate what the UCLA urologists do.
One again I want to remind you that I am not writing about this to scare women. This will happen to so few women and the chance of it happening to you is slim to none, so if this upsets you, then please do NOT read it.
As I began to study my bladder function, I realized that things really didn’t work as they once had and began to read to understand why. I also remember Dr. Kim saying to me that she was afraid my bladder would no longer work as normal. I didn’t want to hear it of course, but I need t know so that I understand what may happen in the future. It is honestly scary, but not knowing is even scarier. What I realized as I read was that it takes more than our bladder muscle to work to make us go. It takes nerves to tell the brain we need to go. When the nerves are damaged, then we wind up with a neurogenic bladder. Slowly but surely I realized that this is what has happened to me. You can read about this on this link http://www.urologyhealth.org/urology/index.cfm?article=9
Damage to the nervous system of the bladder is not rare and happens because of diabetes, MS, accidents and many other reasons, not one of which you will find listed as the results of bladder sling mesh. This is why I write about this because it does happen to some of us from a product that should never be put into our bodies. That is why I am angry! And it is why I write so openly and tell the truth about what is happening to some women because of this terrible product.
At first I thought things would have an easy fix and I could once again be normal. I have wonderful mesh injured friends who also have medical backgrounds and they send me great emails to give me hope. But they didn’t understand my complete situation because I wasn’t ready to face it myself for some time. Only since this last surgery have I allowed myself to read and pay attention to my bladder function and then I could no longer ignore it. As I read, I realized just how many issues there are with bladders because of mesh injury because I recognized many things women had told me. I also talk to women daily who have issues I never knew existed until I had this surgery.
I have my good days and bad days while handling self cath and a bladder that does work the way it should, mainly because of lack of sleep on nights when I have to self cath a few times. Being sleep deprived makes my life even slower than when I have had a few hours of sleep in one stretch.. A good night means I sleep 4 hours before my body wakes me to tell me to self cath. A bad night is waking up every two hours and then trying to get back to sleep in-between.
Believe it or not, I do not spend my every waking moment thinking about my current situation. Lately I am trying to be more normal and have been trying to get my life back together again. I am slow when doing anything and I am only four weeks post op, but I am doing more things to get everything around me back to normal. My organization of self cath supplies means I removed almost everything in my bedroom that made it look like a sick room. I have cleaned and dusted and I am enjoying my newly remodeled bathroom my daughter built for me while I was away at UCLA. I am back taking a lot of supplements which does ease my leg pain to manageable. I am used to living on a ship with rolling seas. That is how the vertigo is and I have learned to balance as I move, avoiding toppling too much. Life is about adjusting when it comes to mesh complications and about hoping that slow healing can relieve some of the symptoms you have to deal with on a daily basis.
I never think that what has happened to me is the worst possible thing that can happen to anyone. This is because I know other women suffer more than I do because their nerve damage is opposite to mine. So before I continue with my own situation and what my choices are, I am going to share another woman’s story in Part three of understanding your bladder, because she has shared with me her situation and how she is handling it. I hope to post it soon.