Mesh A Young Woman’s Story
I and the other women who try daily to help women through mesh complications are always shocked and horrified when young women’s lives are cut short by this issue. However, even with their daily pain they have such great resolve and strength. This story came to me from Canada. The women in that country are fighting hard to get their government to send them to Dr. Raz at UCLA because they do not have surgeons who can remove all the mesh safely and allow them a chance at a better life. I applaud these women because they use any good time of the day, or just after pain pills kick in, to do anything it takes to make something good happen from something bad.
I have been saying all along that this is a world problem. By joining hands around the globe we can bring about the awareness that this is so. That more than a hundred thousand women worldwide and perhaps many more, are injured by medical mesh and no one seems to care. Now as the women of the world share their stories with me, someone MUST pay attention. MUST understand we are not faking it. By sharing with me and with you her story, this young woman allows you into her world. A world of struggle and pain, raising young children. In doing so she is showing that this is not just an older woman’s issue as many believe. It is an issue of women of ALL ages. What makes her story so poignant is the fact that she found someone to marry and has overlooked her ‘medical flaws’ and they are raising children together. Even as she suffers with many complications and pain. I applaud the young man who married her and sticks by her during these years of her personal struggle.
This is her story in her own words:
I would like to tell you a little about myself I am 30 years old I live in Saskatchewan Canada and I have been suffering from problems with my TV Mesh Tape since 2006.
When I was only 22 after the birth of my first child I started having problems holding my urine. I was referred to a Urologist who said I was a candidate for a monarch sling procedure but the waiting list in Saskatchewan was 2 years. I waited my two years and in May 2006 I had the procedure. Everything seemed successful until about a year later when I started having problems peeing if my bladder would fill too much or I would need to use a catheter to empty. I was told this could be normal and eventually my bladder would loosen. I continued to live that way carrying catheters with me everywhere and some times when I had none I would go to emergency room to have help. This problem gradually got worse and I seemed to have a bladder infection every other month. In 2009 it had progressed so much that if I didn’t empty soon enough, my bladder would fill so much that doctors would have trouble to even get an infant catheter in my urethra. August 2009 after many trips to emergency my urologist finally did a cystoscopy to find that the mesh had eroded nearly through my urethra and was put on an “emergency” 6 month wait list to have it removed. By this time I was no longer able to work and had to stay with my parents as I was on so many pain medications I could not take care of myself, let alone my daughter.
I had just met my current husband that summer and I can’t believe he continued to date me through all this. Do you know how emotionally damaging it is to wake your new partner up in the middle of the night to drive you to emergency because you can’t pee?!? Or worse wake him up to change because you peed on him?!?!
Finally in November 2009 after a month of daily trips to emergency room they bumped up my surgery date and removed the tape. They found that during that procedure I had in the previous 3 months the tape had in fact worn a hole right through my urethra. I was then told to wait a full year to allow that hole to heal before discussing any other fixes. After all this trauma to my bladder I had lost most (I would say 90%) of the control of my bladder and began wearing full extra-large super absorbency urinary pads. I had to wear depends to my wedding… depends diapers at the age of 28. Oh and I didn’t even mention how many I went through that evening because dancing makes the leakage worse so I had to choose to dance and be wet or sit and be sad…
After I had waited the full year I returned to my urologist who said again there is a 2 year wait for bladder lift surgery in Saskatchewan so I wait longer… I asked to be sent to Edmonton for a second opinion. The urologist in Edmonton agreed I was in need of a bladder lift however the type of lift that now needs to be done because my bladder was so damaged is much more complex. He also said that although I am at risk of re-tearing the hole in my urethra during pregnancy, child bearing after the bigger surgery was not an option. I decided at that point to wait for the “big” surgery and have a baby that my new husband and I really wanted. I then became pregnant and was monitored regularly and closely by two specialists during my pregnancy. I had a bladder infection the whole pregnancy and was on antibiotics every month each a different one. I had a baby girl by C-section (she was breech) on Oct 26, 2011. We were delighted and so happy she was healthy.
On April 30 2012 I was scheduled to have my final bladder lift any maybe be rid of all this grief and expense. I spend on average $500-$600 per year on pads alone.
I was woken after what I thought would be a successful procedure only to be crushed and told that the hole in my urethra had ruptured at some point and they were not able to do the surgery because he had to fix the hole first. I had an indwelling catheter for 3 weeks and still had an infection. I had a cystoscopy on May 30 which confirmed the hole was sealed and now I am waiting to see another urologist in Calgary because my urologist feels this procedure has become so complex it is over his head.
I want to dance without peeing, sleep in a bed without a liner, skip around with my daughter, go fishing on a boat, go quading with my husband and live a normal life. These every day activities have been robbed from me and my family sufferers for it every day. This weekend my daughter is going to camp. She wanted me to be a chaperone but I had to say no because I need to be close to a washroom at all times and waking up to pee at least twice a night would not work in a tent with 4 little girls. What if I leaked and peed on them?!? Emotionally I can’t even begin to explain how I feel. I have cried every day for 2 years. I have lost a job and numerous other opportunities because of it.
So now I wait… same thing I have been doing for the last eight years of my life.
Thank you for taking the time to read my story I hope I can help prevent someone else from suffering the same pains I do.
How this angers me. How sad it makes me that this young woman could have a much better life IF she had the money to fly from her country to UCLA for removal and reconstruction. However I know this is impossible monetarily. I keep hoping every day that someone will start a fund to send women like this for the help she badly needs. You should also understand that she emailed Dr. Raz and he told her that after surgery at UCLA she would indeed be able to have more children.
Now I ask myself every morning as I read my emails “When will this stop?” and “Who will listen to these cries and do something to help women like this one?” I am very sad………………