My Fascia Sling Surgery Part Sixteen
The depths of despair and the wonder and power of mesh injured sisters.
Several hours ago I got some news and I had to spring into action. But my brain was so sleep deprived because of the changes in my bladder issues that I couldn’t think and wondered what my future will be. Even writing is a strain and I don’t want to. But I have to. I have to make the world believe that mesh can take you from a normal happy life to a life of devastation. No more covering this up! No more suffering in silence. This story has to be told and regardless of what it costs me, and I will tell it.
I knew something was wrong. But what? I have gone from a woman who was healthy and had no illness of any sort to a woman who has many issues to deal with. My mind is a jumble of possibilities and none seem good right now. It is after two in the morning when I first began writing this and I had had less than four hours of sleep before I had to turn on all the lights, get up on the bed and do self cath. Then I am awake and tired out. I am a mess.
Everyone thinks I am strong but right now I don’t feel it. I am just trying to get through each day and wonder what to do next? That is the legacy of bladder sling mesh. It ruins your life. There is no up side to the complications, only down. There is no easy fix.
I finally got through to Dr. Kim that something is not right and I now have a date to get tests and surgery at UCLA once again. Life is never easy and then once it was set, other complications arose. Flight, hotel and all the things associated with going to UCLA. I tried hard to get the one test changed so as to move it all closer together but to no avail. So I have to figure out what to do. I will have the first test at 8 am on Monday June 24th which is the urodynamics. 8 am means I must fly in on Saturday so as to be sure I am there. Any flight delay means I won’t be and everything could be cancelled. Wasted money and wasted time, let alone waiting longer. Then I have nothing until July 1st for a cystocopy and surgery on July 2nd. I will flight out alone because my daughter gets raging headaches for weeks after flying, from infected sinus. It took her a few weeks of nonstop headaches this last time to get over it and I don’t want to put her through it again. Her life has been complicated enough by mesh. I don’t want her to wind up with a serious illness because of me.
A few days ago I received an email from a woman who is only twenty-seven years old. She is raising young children and now has a prolapsed bladder. She went to the doctor and of course he told her he could fix that in an instant with a sling. She decided to research on her own and came across this blog. She is horrified. She begged for help so I enlisted the help of a mesh injured friend who was a nurse practitioner before her injuries. She has always taken the young women because many have been terribly mesh injured and without the right surgeon they lose the partners, lifestyle and some have lost their children. So it was imperative that this young woman had someone to talk to. My friend will do this over the phone and learn if she is closer to the right doctor, has insurance etc; We will always be afraid for her. She is very vulnerable right now.
This blog still works every day giving women the truth. Not just my truth but the truth of all those who are mesh injured. Most women have found a way to get out to UCLA and seek help. It is never easy. Learning also means taking time to digest the information and then enlisting the help to get out there both emotionally and financially.
I never believed that when I began beating on a keyboard because of my own injured frustrations that I would be beginning a vast network of women helping women. But I watch it in awe. This past week this network of women has also been my saving grace. Only mesh injured women understand other mesh injured women and what they deal with.
Over the past few days I have had to digest much information. I have cried many tears but I know those are only relieving my anger and sadness. I had to read, think and digest regardless of what I feel. As I digested I have also realized that now I am a prisoner of my own body. I can’t leave the house except in short spells. There are reasons and I will explain why.
You all know by now that the mesh was in me two years and seven months before Dr. Raz removed it all. I finally have my records and read how difficult it was for him to unpick the mesh from my nerves and muscles. It is a miracle he was able to do it. But I am still mesh injured. Thankfully now I don’t use a walker ever. I only use a walking stick when I leave the house. I don’t use pain meds and my diligence in taking certain B vitamins to help the injured nerves has paid off trememdously. I have hope for a better recovery although I will never be perfect. I am sure the nerve damage will never completely go away and I will learn to accept it. Until then I will keep trying to do more to have a better life. But now there are new obstacles and at this point I don’t know if I can overcome them.
Almost eight weeks ago I went out to UCLA for a fourth surgery. The purpose was to try to change my situation with excessive incontinence. Like many, many women incontinence was never an issue for me before, but the sling surgery was added on to a rectocele repair. I never understood what it was that was put inside me and only when I began immediate problems did I begin digging. And here I am today, still digging for information that can help me. The second purpose for this surgery was that once the removal incontinence was taken care of I could begin physical therapy on my leg. Now everything is on hold and I will be hoping for a better outcome this next surgery. I have to go out there regardless of financial worries. I have to try to change my new mess.
You see now I cannot urinate at all on my own. My bladder capacity had diminished with the sling because my bladder was held far too tight over a long period and it stayed that way. A normal bladder holds 400 to 500 ccs. Mine holds a max of 280 ccs. If you find a container with cc measurements put water in it and see how little that is. It is quite shocking.
So now the problem is my bladder cannot have any relief unless I self cath. Dr. Kim recommended every three hours. This is because any longer can push my bladder to its limits. I have found I produce more urine during the night than during the day. I am slowest in the morning which means I could stretch it to the max of four hours if I am lucky. What happens when my bladder is full, I am sure you want to know. I feel extreme tenseness across my abdomen and pressure. I have to get it out……… The soonest I do, the sooner I feel better.
This month I will turn sixty-six. I am not longer agile because I can’t do all the things I used to do. I have a right leg that screams when I raise it at odd angles. It is in my groin where the nerves are. The last Houston urologist, a man, hit a raw nerve when he told me that doing self cath is so easy. He is a man with a penis whom he can grab and see where to put the catheter in. It is easily accessible. He is also a compassionless man with no heart who puts slings in women all the time. This was his own admission although he says none have any complications. Obviously he is perfect. But if that is the case then how does he know about how easy it is for women to do self cath? Yes it makes you wonder.
I wish I could raise one leg up, prop it on the toilet and put the catheter in as he suggested it should happen with such ease. Not so when you are already mesh injured. So I have to prop pillows behind me on the bed, get everything prepared including a mirror on a stand that I can move at various angels. You see I am also near sighted. This means that I need glasses to watch TV or long distance. I don’t need them up close. So when I get my legs in position glasses don’t help me because it is not far away enough and I can’t see well because of the lack of closeness. I know it sounds odd but I have tried to figure it out, but can’t do any better than to just not wear them when I self cath.
I have a tray beside me on the other half of my queen size bed. It holds baby wipes which I first used one to thoroughly clean myself. I have a container to drop anything used to throw away. After cleaning I have small pads normally used for removing makeup. I add iodine solution onto the pad and I use my left hand to open my folds and then put the iodine to cleanse to avoid infection. I then sanitize my hands from a bottle I also keep on that tray. I next take a self catheter and break the seal to release the fluid that will make it lubricate. I open the packet far enough to be able to pull it out. Then I lay it aside. Next I open the folds again with my left hand and spray Vetericyn directly on the area so that I avoid pushing any bacteria inside when I self cath. (I wrote about this a few blogs ago and will leave the link in a moment) The I carefully find the right hole to push the catheter in while making sure my mirror is at the right angle and the container is in the right place to make sure I don’t have urine going on my bed. To protect my bed I use a throw away mat under a towel. I found the cheapest mats are ones from the dollar stores that are used to train puppies. Waterproof on the back and absorbent on the front. I drain quickly because I do not have much capacity to hold urine and therefore it is very fast.
This is the blog about Vetericyn. http://meshangels.com/2013/06/those-really-difficult-infections
I get up and take everything through to my bathroom to wash with soap and water. I am meticulous at cleaning up after myself because I am a woman and very self conscious of smell and germs. I then put on fresh underwear with a protection pad because if I get full and then walk, I will begin to leak. I never leak enough to help ease the bladder discomfort if I am very full.
If I go and sit on the toilet I have to relax and never push and I will do a small amount. 35 to 50 ccs. Not enough for any relief. It never gets better.
Yes, this is all graphic, perhaps to some disgusting. For me and many mesh injured women it is hell………….
I am now a prisoner of my body. I live out in the countryside which I love, but driving to anywhere takes time. To leave the house I have to calculate time both ways and watch the clock to know how close my next self cath will be. I have to think about any inevitable. Traffic hold up and other things can happen. I am afraid to push it. Doctor’s appointments must be planned for everything. Travel and waiting time. I worry…………..
Visiting friend or going to the movies is out. Not enough time to drive, visit or watch a show and get back. No day trips. Wherever I go there must be a bed where I can get up and relieve myself. No one would like it f I said “Can I use your bed to relieve myself?” It would be absurd. So these past few days the reality of a failed fascia sling that does not allow me to go, has set in. I can’t believe this has happened.
So what now? I don’t know what can be done but I have to go out to UCLA, take those tests and see. I have envisioned many horrors and have taken myself down to the depths of despair. I have read up on things they do when you can’t go. They do something called a Urostomy Surgical Procedure. This is the link. http://www.clinimed.co.uk/Stoma-Care/Stoma-Surgery/Urostomy-Surgery.aspx
The terrible part of this is the fact that these procedures are performed because of bladder cancer and they too have their own complications. Yet no one recognizes that this can happen because of bladder sling mesh.
I am hoping things won’t go that far. But I am afraid………….. As I age I won’t be able to self cath and unless Dr. Kim can open the path for me to go I am screwed. I have been living in a catch twenty two since the day bladder sling mesh was put into me. You have pain, you do nothing it worsens. You have infections; you do nothing antibiotics stop working and if infections get serious enough you can die. You have the mesh removed and according to how damaged you are, you can have extreme incontinence. So extreme you can’t leave the house for fear of drowning yourself and anything you sit on, regardless of the amount of pads you load into your underwear. You carry many items with you to make sure you don’t feel embarrassed. You can never relax.
So I hoped for the best. I did the fascia sling surgery so that I could have a better future. But I never seem to have good luck. Things are worse. I am ruled by my bladder functions.
After I heard from Dr. Kim that I was going to go back out for tests and possible surgery, (nothing is guaranteed) I panicked. Financially mesh complications drain you. I needed a hotel and it is over the July 4th holiday. I knew the odds were not good to get in at the Tiverton, but I called and hoped. Nothing available. I tried other hotels in walking distance. Odd days were available but I needed two weeks. I reached out and asked if anyone knew of a place to stay close by UCLA. Lots of suggestions came in, but many women don’t realize that distance is everything. I cannot drive anymore. Walking distances is very far is hard for me. Getting on and off of public transport means more climbing on and off which exacerbates the right leg nerve injury. I am slow.
I was feeling so down and then the phone rang. A mesh injured friend who I have helped through for a long time while waiting for her surgery on the 28th of this month said she wanted me to stay in the room with her. She was adamant. But she has sisters who will come and go to care for her. How could anyone put up with someone turning on the lights two or three times a night to do self cath up on a bed. I was horrified. I explained to her how I felt. She told me not to be such a ‘Brit’. She made me laugh. Then she told me what she had to do to pee or have a bowel movement and believe me she has it bad. I knew her surgery was going to be a bad one because she is so messed up.
I sat and cried at her compassion for me, and I accepted her offer. It won’t be easy but I have to have a roof over my head with transport or walking distance to UCLA. There is a free shuttle that goes back and forth from the Tiverton to the hospital.
I have no clue how all this will work out. I worry about everything. I don’t know if a fifth surgery will help me at all. I worry how many more surgeries are in my future.
I have ports from a PICC IV hanging from my upper arm while treating the awful bug pseudomonas. I hope I can clear it before yet another surgery.
I look back to just over a week ago when I saw that last male urologist. He said something that now rings loud and clear. “I’ve never heard of anyone having any complications from such a small piece of mesh from a bladder sling”. Is he blind, deaf or dumb? Or purely ignorant? That small piece of mesh wipes out women’s lives and he is continuing to add to the piles of injured bodies.
I am forever grateful for the women who help other women through these terrible times and now they are helping me. There truly is some good in life.
My journey continues…………