My Fascia Sling Surgery Part Two
To understand why I went back to UCLA for this surgery you have to understand what complete incontinence is. Believe me I did not understand until after my mesh was removed. Like many I would have thought It was like the incontinence I envisioned women had the sling put in for, had it not been for this journey. I remember when I was asked if I leaked when I coughed or sneezed, long before I had any surgery done. I truly wish I had said “No”. I wore a simple mini pad at that time ‘just in case’. So even though I was told incontinence could happen when the mesh was removed, I never understood exactly what that meant.
Yesterday I wrote part one of this part of my mesh journey. You should know that the two ladies I met out there again, who had full mesh removal, do not have total incontinence. Both are doing well and are not dealing with any of this. What are the odds of full incontinence? I truly don’t know but I know it is not huge because I know many who are not dealing with it after removal surgery. So don’t place all your fears in one pot. If it happens then deal with it then and don’t take the view that it will happen to you.
What is complete incontinence? The mesh had damaged my urethra and was cutting through it by the time it was removed and Dr. Raz had to repair it when he did my removal surgery. When I saw Dr. Kim who was going to do the surgery this time, she told me my urethra is now shorter than it was. I can’t tell you if that is part of the problem because in truth I don’t really understand all this. It’s one of the facts that I place in my mind in a place to remember, but not completely understand. What I completely understand is that I was a bottle without a cork. Every step I took anything in my bladder came out so I leaked constantly. When I sat down for awhile and was talking on the phone, I did not leak. But the second I stood up, I emptied. When I laid down at night my bladder would fill up and when I woke up because it was telling me I needed to empty, then as I moved it began to come down before I ever stood up. Therefore protection was the form of stacks of pads along with extra towels I kept beside the bed and toilet so I could change quickly. I washed clothes’ constantly. I hated it! But because I wanted to heal before I went back for this surgery, I allowed myself 6 months.
Dr. Raz told me I could go back within 3 to 4 months of the removal surgery and have this done. But for me it was far too soon. Healing is about both mind and body and I needed to take the time for both. I also decided that whatever needed fixing would have shown up by the time six months had passed, so I endured the extra months of mess and frustration and held off for six months. However, I did not expect that getting in for a second surgery would take many more months with Dr. Raz because this blog works so well, so I asked him if I could switch to Dr. Kim. Why Dr. Kim? I had not met either Dr. Rodriguez or Dr. Kim so it was a ‘pull out of the hat’ situation. I know other women who have had surgeries by both, so I just decided on Dr. Kim. Nothing more. Nothing less. I called and set up the appointment and just ran with it. I figure that many very sick and injured women need Dr. Raz’s long term expertise on mesh removal and therefore I should not take up one of his slots. As it is I know he has added more surgery dates to his own roster to help women so therefore I need to leave him free to do what he does best.
Tests before this surgery.
On Monday 15th April I was at the office for my first appointment. I had been told it was a cystoscopy and I should be there at 1 pm. I wrote about this test along with the others on the following link. http://meshangels.com/2012/10/ucla-tests-before-mesh-removal-surgery When I arrived I was told my first test was going to be the urodynamics test. I was horrified because I knew it was a stand up test and I could not hold my urine. So I asked to speak to a nurse. The lady who does this test told me not to worry. They do this test on women like me all the time and they would take care of it. So I decided she knew what she was talking about so I would stop worrying and go with the flow. One again I was handed a cup to give a sample to test for infection. I knew I did not have one because since the day the sling was removed, I had never suffered with another bladder infection again. A big positive for having it removed. I felt a bit embarrassed but I told the guy who handed me the cup that there wouldn’t be anything left in my bladder because I leaked it out as I walked. He said not to worry, but try. I did and of course nothing came out.
I went into the urodynamics room with the attendant and Diana the lady who does these test welcomed me and put me at ease. I have found her to be friendly, compassionate and caring and it really helps when you are worried about incontinence. You feel constantly embarrassed about a situation you have no control over, but she is a master at putting you at ease. Like any test there is some discomfort but once done I felt relieved and dressed again expecting to see Dr. Kim. However I was told she was still on her way back and I would have to come back the next day to see her and do the cystoscopy.
The next day found us waiting a longer time because Dr. Kim was held up in surgery. But finally she was on the scene and I was prepared for the test. These tests have to be performed by a doctor because they are invasive. The test was uncomfortable but soon over and then I got dressed again. Dr. Kim then came back in to explain the complete procedure to me. Did I want the complete and utter truth? Yes I did but as always you have to digest the truth. So my daughter and I sat there while she explained about my now shorter urethra and that my bladder capacity is now 280, where as a normal capacity is around 400. She assured me it was still good.
She continued on to explain exactly what fascia tissue is. She said when you look at a steak you will see a white part under the skin and that is fascia. It is stronger and tougher when taken from the stomach area and she said she would then ‘wrap it’ around my urethra. That took a bit of understanding because I thought it was the same type of sling that goes under the bladder. Not so! She then explained that there was a fine line between too tight and too loose and that the fascia would shrink as time went by so I had to make a choice. If I wanted to be totally dry immediately then she would make it to fit BUT as it shrank I would have to self cath to remove all the urine from my bladder. I was horrified and a little shocked.
This may not seem to be bad for some women but right now my right leg has remained with nerve damage. Pulling my leg up to place in the ankle supports on the examining table causes me excruciating pain in my groin. I remember doing self cath after the sling was put in me but at that time my leg injurey was nowhere as bad. As time went on the mesh pulled on my nerves as it shrank and it got worse. So now after six months I probably have to admit it will not completely improve. So I stared at the doctor thinking “Oh no. Nothing will ever be the same again”. But I had to make a decision. I told her I would rather leak a bit rather than have to self cath. From that moment on all I could do was pray that I would eventually be okay.
My daughter and I left her consult room filled with emotions. Kim said o me “Mum it’s a dammed if you do or don’t situation”. Yes she was right. So if you have not had a mesh sling put into you as yet, you need to understand what we are going through and how this is effecting us and our daily lives and will continue to do so while we live upon this earth. Then ask yourself “Do I really want to take this risk?” Believe me if anyone had written any of this on the Internet then I would have RUN LIKE HELL! Don’t believe any doctor who tells you he/she does not use THAT mesh. I can assure you that ALL mesh is doing this to women. Don’t become one of them.
Before we had gone into Dr. Kim’s consult room my daughter had called to get the surgery time for the next day. You have to call to find out your time after 3 pm, so I knew my surgery was going to be at 11 a.m and I had to be there at 10. a.m. We went back to the Tiverton feeling very stoic and subdued. It was all on the table and I had made my decision. Now all I could do it is hope and pray it was the right one. Luckily other women were waiting at the hotel and I did not have time to completely dwell on it. The decision was done and I would now put it aside. Onward and upward ………………………..
So now you know the truth, the whole truth and nothing but the truth so that you can review your own situation and decide if this surgery is right for you and you can take it in long before you make the decision to go. I did write more about this surgery after I spoke to Dr. Kim over the phone a couple of weeks ago and you can read it here. http://meshangels.com/2013/03/no-mesh-fascia-slings
Tomorrow I will write about my surgery day. Time for me to rest.