Understanding your bladder Part One


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It has been eleven days since I removed the catheter after coming home from the last surgery three weeks ago. I knew I had an infection when I got home because I had pain and did not feel well. At first, infections make me feel like I have a headache all the time and I have little energy. Then they progress to pelvic pain and constantly feeling like I need to go to urinate and yet little comes out and my bladder spasms. I had antibiotics at the ready and decided to give them one week to clear it or I would have been asking for a urine culture test at my doctor’s office. Fortunately it worked this time and I began to feel better within a couple of days. Don’t wait if you don’t feel better within a few days because different antibiotics effect various infections. They give you one they think will work, but if you feel unwell, it is wise to get your urine checked. A culture takes about four days to tell your doctor what infection you have to make sure the antibiotic you are taking is for the infection you have. As you may know if you followed this blog in awhile, not all infections are simple which is what I found out all too well after my fascia sling surgery. I am learning to be wise and knowledgeable to help myself.

Fortunately this time I am doing fine in that respect. However, after the infection cleared I realized things were not great in urinating on my own. I did write an update about this already, but what I then decided to do was begin a study of my own bladder function. I know it sounds a little off the wall, but my bodily functions are mine and who else would be qualified to study it. So each day I wrote down every drop of urine I either did or took by self cath. I paid attention to time and how long between. At first it was because I wanted to know what times of the day would be easier for me to leave the house and how long. Doing self cath does restrict your life and all of us fair better if we don’t live behind the walls of our homes, without a break.

My study showed me that in mornings I did not make as much urine as I did later in the day or at night. That was the simple part. What I also began to notice was as the infection cleared, at first I thought I was able to go more on my own. But then I realized what was happening was that I dribbled out more on my own but my bladder did not function as normal. I did not have the pressure capacity to push it out and when I tried, I stopped going. So I tried various positions without luck. I then knew for sure I just did not have pressure and I began to read.

Before I continue this I want to say that my plan for this blog was and is never to scare women. I have been accused of this although rarely, and this is not true. Most women will not experience the issues I am experiencing and therefore you need not worry about this. However, a few do and this is information for those and of course to warn all women about the after affects of bladder sling surgery. I wish I had known some of this and my story would be vastly different and an implant would never have entered my body.

I should also say from the moment the implant was in me in March 2010 I had immediate issues with urinating. I have written about this more than once so won’t go into details once again, but I believe my bladder was compromised from that moment on. I even complained to the surgeon within a few weeks that I no longer urinated the way I had before surgery. All I was told was “I’m not surprised, your bladder is small”. That did not make sense as to why I could once go normally but all that stopped after the implant. So what I deal with now I believe is from long term effects of a mesh implant that compromised my bladder from day one.

I will explain my situation more in a moment, but first I want to answer a few questions about doing self cath. When I began searching on line to find answers about this issue, I found YouTube ads for self catheters which have now become big business. But there was nothing real about using them from a woman’s point of view. So I did like most women. Trial and error. So when I get email questions from women about doing self cath I understand the frustration and I am willing to share and answer any questions.

One of the things I am asked is “Does it hurt?” From my own experience, I can say that doing self cath too soon after surgery will hurt because of inflammation. I knew my mesh was completely gone so I never worried about erosion in my urethra any more, but if the mesh is still in you, even a small portion could cause pain and the only way to know it is all gone is to have the translabial ultrasound which is at UCLA. I know women who thought it was gone as told by their doctors, when it wasn’t. While out at UCLA this last time a lady from Canada had it done and you could clearly see pieces all around her urethra, which is the reason she was in so much pain. I have no doubt that if she self cathed it would be painful.

Also if you have any severe infection, it may hurt enough to cause a lot of pain when you self cath and you may not get much out when you do. That is the reason I had a catheter in me so long after my fascia sling surgery. Also to do self cath too early can compromise a new fascia sling. So waiting is wise. This past surgery I had to wait two weeks before removing the catheter and resuming self cath. I am glad I did as at first it was uncomfortable although I would not describe it as pain.

To help you understand what self catheters look like I took photos.


Mine come in packets like this and are about 8″ long. They are sterile and although you cannot see it, there is a clear catheter and a foil packet of water enclosed in a package and you do not open it and remove anything to get ready.


I opened one to show you a clearer photo, but now it is no longer sterile so I will not use it. You can see the clear coated silicone catheter and one end has a rounded point and the other a funnel end. The rounded end goes inside your body. Before you open it you bend the packet end in half while still enclosed. When you do this it resealed the water and you swill it around on the catheter and this makes it lubricated. It is still completely sealed. Then you can open the top and have it ready to use, while you do your preparations.

When I had the sling put into me and I could not urinate for many weeks, the sling was cut in the center. I still could not go and had to learn how to self cath. I never even knew about any of this before the surgery. When I was taught I was handed some catheters that were not lubricated and I had to use a lubricating jelly to use them. You cannot do self cath without it as it would be most uncomfortable. Your urethra does not have self lubricating properties unlike your vagina.

It is not easy doing self cath for any women. I use a mirror and do it on my bed. Other women have told me that they tried and could not figure out where to put it. I understand because it is not quick and easy and it takes time to learn. We have two holes and to see we have to open the folds with one hand and insert the catheter with the other. Cleanliness is important or you could give yourself an infection. You will insert the catheter in the top hole. This is your urethra. The urethra is a very short passage to the bladder. Almost as soon as it reaches your bladder you have to be ready to catch the urine and that too takes practice. Make sure your bed is well protected just in case of accident.

You can use your mirror to tell when you have emptied although I have noticed a distinct feeling as when it empties. I believe it is my bladder deflating. It is not painful so don’t worry but then you can remove it. I put the used cath back in the package for disposal. One more important thing. If you are just learning and/or are tired, it is easy to put the catheter in your vagina accidentally. It does not hurt but nothing will happen and you will quickly learn your mistake. DO NOT USE IT AGAIN as it will then be contaminated.


I can tell you honestly that I hate doing self cath and wish I could go on my own. However, I have to do it, so I have tried to keep the things I need neat and beside me at the ready when needed. I have everything in a fabric lined basket on the right side of my queen sized bed. I sleep alone and I do not have to worry about someone else, but I want everything neat and in order. I have a container with the catheters, hand sanitizer, a jar with makeup removing pads that I use to clean myself with iodine. A bottle of iodine and a spray bottle of Vetericyn that I use to control the chance of infection. I also have extra pads to protect my bed and a container of baby wipes. I discovered one at Wal-Mart that looked nothing like baby wipe containers. On the left side of my bed is a container I use to catch the urine and a heavy based mirror. I don’t think anyone wants to do something like this, but I find being organized is better especially at night when I have to wake up and do it.

It does help to understand how much your bladder holds after you have been through surgeries and still have problems. That is what the urodynamics test does. It provides the doctor with pressure readings and how much your bladder now holds now. Things change with mesh complications and for me it changed a lot. I believe it is because my bladder was restricted for so long and could not work the way it was supposed to and got used to not being able to inflate. So because I knew mine, I know that the 280cc I hold is pretty much spot on and my bladder does not expand as it used to. When I awake during the night, I know I am full but cannot push it out. I always sit and try but I just dribble a small amount and then remove about 250cc. I have measured this over a few nights and it is always around the same. I do not seem to have any signals telling me when I need to go. The feeling is more of discomfort of being full. Frankly when Dr. Kim told me after the urodynamics test study was done this last time, that she was not sure my bladder would ever work as normal again, I believe now she is are right. She also told me she thought my bladder was only a vessel now to catch urine and that is all. After doing my own self study I am inclined to agree with her completely.

Anyway, I have many links and information to share with you in part two of understanding your bladder but I wanted to get this finished because women are asking me how I am doing now. We are all different in our injuries, and it does take time to heal so things can change. The more we learn the better it will be for us to make informed decisions about our care in the future. That is why I am doing my own self study and learning all I can now. I hope this has helped some of you and you now understand about self cath.

 

10 Comments

  1. Batya Sarah

    Linda,
    I am in awe of how well you are handling this major disappointment. My heart aches for you and wish you could some how can a new bladder. Perhaps you could be a candidate for a transplant some day? My surgeon who gave me my mesh monster gave self-cath classes which I failed miserably and they told us we could wash and reuse them! I refused as my arms were too short. I could not reach even if I could see what I was doing. Sending you much love and hoping you keep your spirits up despite your new lifestyle limitations. Thank you for your wonderful descriptions of what you are going trough. I hope mesh makers read this blog and become enlightenel

    Reply
    1. lavalinda

      Batya Sarah thank you but I wish I was handling this as well as you may think I am. I didn’t have a choice because the Foley catheter was so painful and doing more harm than good. I had to keep it in this last time two weeks after surgery and it felt like a knife was cutting me each step I took. Agony. So I was so glad to get it out and then had to resume self cath. You lose a lot of sleep waking up to self cath at night and then trying to go back to sleep. It has become the necessity of two evils. One this happens to you, you do things you never thought you would.

      Reply
  2. Barbara Vance

    Great info! Continue healing sweet lady.

    Reply
  3. Gay Courter

    First I want to say that Linda helped me some rough days and steered me to Dr. Raz for my first–and last–removal surgery. I do understand the fears of having surgery so far from home (3000 miles for me) and no local doctor for backup. I have so wished for Linda to have had an easier time. It seems as though you are destined to have to chronicle all the complications to help so many and you write with such grace, honesty, and intimacy.

    But, for those who hear Linda’s complex situation, there are many others like me who do not write a blog and who move on because we’ve had such a good result. I think anyone would be pleased to be me after removal surgery–which turned out to be more complex than Dr. Raz thought. It would have even been EASIER for all (dr. and patient) if I had had the surgery as soon as I discovered mesh complications. I learned that the mesh is always moving, threatening to do more damage, and creating an infectious process. I’d encourage anyone with the first twinge to make the first appointment at UCLA–these are hard to get and you have to get in line for an evaluation and then return for surgery. Start the process soon and know that many women find a total cure of all pain and misery.

    Reply
    1. lavalinda

      Thank you so much Gay for leaving this comment. It is so important for women to know that not everyone winds up with many complications. Had I been able to have the mesh removed much sooner I believe things would not have gone this far. I appreciate you giving women hope. There are many others on the good side of mesh removal and they too are doing very well.

      Reply
  4. Becky

    I have had my complications in the past. I feel that every women will endure some sort of trial when dealing with catheters. For me I had major issues just using a catheter. Getting use to it was very difficult for me. One of my problems was I didn’t know as much as I should and I wasn’t aware of infections and stuff like that. I did a whole lot of research and found good info a http://selfcatheters.com/ for example. I than became more familiar with how catheters worked and that helped ease my frustration and pain.

    Reply
    1. lavalinda

      Becky, yes the more you learn the better. I learned over time and the more you know the better.

      Reply
  5. Liz

    I want to trust my doctor whom I have had for 20+ years….but now I am not so sure. And I am constantly blaming myself for not doing more research beforehand. I am literally sick to my stomach and scared after stumbling across this site. I am not one to ever post on websites, but I feel like God has led me here for a reason…and is giving me plenty of other signs as well.
    I suffered from uterine organ prolapse and had major incontinence issues. Being a physical education teacher this was not ideal. As soon as dr advised a sling…I asked if it was like the mesh ones that have been shown on the tv ads. He assured me that it was not the ones on tv…although yes it was a mesh like synthetic? material…and added that in all his years of practice he had never had to remove one except for one patient that had the procedure done somewhere else to begin with. I asked about complications and recovery periods. He said the normal 4-6 weeks and mentioned that very rarely will he have to send someone home with a catheter from hospital and if so it normally was only an additional day or two. No big deal really.
    I went ahead with my surgery 4 weeks ago. I had a total vag hysterectomy in addition to I believe a TVT bladder sling. I am going on week 4 of being home with a foley catheter bag. Week 1, they instructed me to remove catheter then come into office. Once there I was able to release only a total of 25-75 cc at a time. He sent me home with no catheter and instructed for me to urinate frequently. I did (or tried) every 15-20 minutes, within 2 hours I was no longer able to urinate unless I was straining and pushing, which caused bladder and back to spasm terribly. By that evening I was in terrible pain, called the dr on call and she instructed me to go to nearest ER to get another foley cath. and to call my dr in the morning and suggested that I needed to be seen by a urologist. Once at ER, I had over 1300 cc in my bladder when they finally put cath in. When I called my dr office next morning to get a urology specialist recommendation, they did give me the name of a practice. I called several and set up an appt. The following day I get a personal call from dr…leaving a voicemail that he has never had to send someone to a urologist ever for something like this and I absolutely did not need to see a urologist and he apologized that I was told that I needed to see one. Again trusting my dr. I cancelled the appt.
    Week 2- same drill, take cath out, go to dr, try to pee….only 50cc will come out, send me back home with foley cath bag. I asked at this point if perhaps sling was too tight. Dr said he purposely did sling loose so he didn

    Reply
    1. lavalinda

      Liz, I am terrible sad for you because I know first hand what you are going through. Your story is mine. I did this with my surgeon for 9 weeks before she ‘snipped’ it. I then had to go through hell with bladder spasms and pain and self cathed for weeks after that. I finally thought I was going normally, but I ran out of money and did not have health insurance. I began taking marshmallow root capsules because I was certain I still had retention, because my surgeon kicked me off post op help and I did not have any more money to go to other doctors. Sad to say that no other doctor would have touched me anyway, and this is going to be your problem because we become a liability to them. So even when you get an appointment, they throw you out in a nice way, making out you are fine or act like you are ‘too hot’ to touch. Please to save your young life, get an appointment with one of the surgeons at UCLA soon. This will not get better. You need to have this sling removed and then have repairs done without mesh. UCLA is your best bet. If you go to these doctors as soon as possible, then you stand a good chance at all being well.

      Reply
  6. Liz

    I also wanted to mention that I am 41 years old and have had 3 children.

    Reply

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