Mesh & A Little Ray of Sunshine
From my diary of a journey back to living.
What would I do without all the supportive women who have gone through the hell of mesh pain and mesh removal. I am blessed because of this blog. I have met extraordinary women who have suffered greatly for years and finally are mesh free. During their times of sadness, anger and stress, I reached out and in turn they are doing the same for me.
Women are meant to be the family rock. The strong anchors that holds a giant ship in place. But who helps them when they need extra support? Their families are tired of years listening to someone in pain because of this product. Tired of doctors telling women there is nothing wrong with them, and the family believes it too. That is why we need each other.
Yesterday was a good and bad day. I woke up at five because I went to sleep early the night before. It was catheter removal day. Yippee right? Not quite for me. I wrote about what happened to me after the surgery when this was put in me. Months of hell with catheter, self cath and non-stop infections. I lived in a world of fear and sadness and at that time had no one who had been through this to share it with. I felt alone. You can read that part of my story here, just in case this is where you are at now and remember, you are not alone. We are here to help you. We too are struggling through our own daily lives, but we all try our best to help those who need it so that they can help themselves.
So what happened yesterday to make the feeling of stress and anger re-emerge? I removed the catheter per the instructions pointed out to me both by a nurse and Dr. Raz. It was easy. First fear over. You know the one. “What if it doesn’t come out. What if it gets stuck” Once it was out I began to relax. A lovely post op mesh removal friend had told me it could take up to four hours for my bladder to work. Fear again. “I hope it will. I don’t want to do self cath for weeks on end”. I fought that fear and within an hour my bladder told me it was time to work. I felt relieved in more ways than one. “Thank God” I thought. But as I walked over to the sink to wash my hands I felt a dribble. I had prepared for this with a pad, but each step another bigger dribble. “Oh No!” I thought. I am one of the 20% of women who will remain incontinent after mesh removal because my urethra had to be rebuilt. That gives us a higher chance of this problem and yet women are telling me every day that their urethra had to be rebuilt. This bloody mesh is the cause!.
I fell into a deep morose pattern of thought. I had just had a fifteen hour day to fly back after this surgery. I am writing a full detailed blog about my trip and surgery, that I will post when it is finished and share with you. “I don’t want to have another surgery” was going through my head. “I’ve spent two years and seven bloody months suffering and changing my life to one of a disabled person” I want my life back!” More down thoughts.
I answered other women’s emailed and comments on my blog. Trying to give them hope. A lady in Australia who found the blog and realized that’s why she is laying in agony. I connected her to someone in that country who could give her hope. I always feel lifted by helping others, but this time I didn’t. Every step I took, more leaking. “Oh no, I have to buy those big, ugly incontinence panties”. I felt really down. Dr. Raz warned me it could happen. I am aware I am sixty-five years old and my tissues are not those of a young woman. He had to rebuild my urethra because the mesh was cutting into it to cause the obstruction so that I could not pee. I had sent him an email telling him I had removed the catheter and what had happened and asked when I should remove the pieces of surgical tape that help my incision together. He said remove it now, but do it in the shower. So in the shower I went and removed several pieces of tape that was well stuck to my body. Now I know why to do it in the shower. I’d hate to pull it off without being soaked.
I dried off and made my way back to the bed with a mirror. I studied the scar. It is approximated 4″ across my pubic area. It was the only way to get the mesh mess from out of my nerves and muscles. I know one day the scar will fade but I felt marked. Marked by a product that was suppose to stop a little dribble when I coughed or sneezed. Now I was flowing without control and I had a big scar. BLOODY, BOODY MESH! I felt the anger boil up again. I went and got the camera. I wanted to take a photo of this ugly scar to remind myself why I fight so hard to stop this from happening to other women. It took me over thirty tries until I got a picture good enough to keep. I calmed down.
Then I felt the sadness. I would have to travel out to UCLA again for surgery to place a sling made out of my own fascia. More money. More time to heal. More pain. CRAP! I felt the anger rise again. Not only that but my daughter would have to take time off from building our house to go with me. No only that but she is still suffering sinus and ear problems from the flight AND trying to fix all the things that seem to break down when you least need it to happen. This doesn’t just affect us, it affects our families. It stresses our family members while they try to work in their own lives around our hellish problems.
I tried to watch TV. I couldn’t get back to my usual cheery, optimistic self. I reached out to a lady who had just gone through this a few weeks ago. She told me she would called me later after she had picked up her daughter from school. I felt better. Someone who knows my feelings. An email came in from another woman close to my age who went through this just a few months ago. I replied and told her what was happening. She had reached out to me during her times of anger after she too had removal surgery. That is what this is all about. Women helping women.
The phone call came in from Lisa. Her voice strong and cheerful helped ebb my anger. No she did not experience incontinence after the cath was out, but she too had had her urethra rebuilt and knew it was a higher risk of incontinence. We spent time talking about other women as well as ourselves. She helps me by talking to women who have had non stop infections. Without the help she received, those infections would have eventually killed her because they were not responding to antibiotics. She had full removal at UCLA a few weeks ago. She is doing well, trying to regain her strength to go on and raise her family. It is a slow road back. She made me laugh. She brought my spirits up. I needed that. I settled down to watch TV before bed. I felt gratified for my lovely mesh sisters who reach out to help someone else including me. I wasn’t sure how I was going to deal with another surgery but I decided to put it out of my head. I have to get through one day at a time. I have to gain back my physical and emotional health again, one day at a time.
This morning I awoke early. In came and email back from Carol who had also gone through this a few short months ago and is closer to my age. She gave me her cheer leading hope. “I too had incontinence like you and it was hard. It went on for eight weeks and then suddenly stopped and I am doing okay right now. I just went back to Dr. Raz for my four month check up and he said I may eventually need a sling made from my own fascia but I’ll wait and see.” She told me to hang in. Life does get better. For me to get back to designing and it will ease my mind. Oh how I want to. Two new hat designs are in my head and I so want to make them. But it is too soon because I cannot sit long enough to work in my studio. I have to be patient awhile longer and try to rest for a good recover.
All it takes is a little ray of sunshine to brighten anyone’s day. I now have mine. Will this improve with time and healing? I have no clue. I have to take This one day at a time. But I have hope. And like Dr. Raz told me, if I remain incontinent, he can fix it MESH FREE. I love this man’s great skills. Now I will take the attitude of wait and see. I have no doubt there will be more down days, more days of anger but I am grateful to the women who like me take the time to give someone else hope. They make invaluable friends.
Now I want to share another woman’s story with you. The following link will take you to a site where you can also read my story and other women’s. You are not alone. This lady is the one who revamped my growing blog so that the information was easier for women to find. What makes this wonderful is that she did it while suffering herself, raising her family and works full time because even in pain, she can’t afford to lose her insurance. She is a very special lady who answered all comments that came in while I was away for this surgery. Who directed women to the links that could give them hope and help. Thank you Deb. You are amazing. I could not do this without you nor all the wonderful women who share their time to help other women. You all give me hope when I feel down. You make me get up and running again so that I can help more women. Now read her story.
Remember. None of us are alone. There are not a few of us suffering like this, there are thousands.