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I have had 12 abdominal and pelvic surgeries, starting when I was 15 and had a lemon size cyst on my right ovary, so the doctor removed the cyst, ovary and also the appendix leaving me with a 12" long ugly incision and problems with scar tissue.
Of those surgeries, two involved placing 8 Titanium plates and screws in my pelvis to fuse my pubic bone which was fractured when a F150 truck backed into the right side of my vehicle. Because I have severe osteoporosis from a young age due to an early hysterectomy and family history, the pubic bone was very soft and osteoporotic, so the O.S. had to use twice as much of the pieces as planned. After a year I was experiencing severe pain from the titanium because I am a petite lady and there just wasn't enough room for all this in my pelvis. So I asked the O.S. to remove them. He was concerned (in fact he was very stressed because I was already experiencing a lot of pain) what the surgery would do to my bladder. Well, what it did was to royally flare it up!
I went 22 years feeling as if I had a UTI and bladder pain but lab tests always showed sterile. So as we found out eventually I had IC all these years but was receiving no treatment. So in 1999 my GP finally came up with the diagnosis of Interstitial Cystitis as the cause of all my symptoms and in particular the severe pain.
So for the last 12 years I have tried almost every IC treatment in the books but the pain was getting much worse and my husband and I don't have much of a life.
My uro suggested trying a C & H to see if it would give me some relief and I was at the point where I needed some HOPE in my life to continue. So four months ago I had the one-day procedure which turned into a week stay at the hospital because once the uro got me under and started the procedure, my bladder was perforated and I had infections. I was rushed back to the ER at 4 a.m. the next day with excruciating pain.
After I got back from recovery, my uro spoke to my husband and told him what happened and that he had never seen a bladder in such a terrible condition as mine in all his years in Urology. It is paper tissue thin, scarred and shrivelled, very small with low capacity and prone to further perforations. So I now have as stated above an end-stage bladder and his only option is to remove my bladder. As I stated at the beginning, I have already had 12 surgeries and the last thing I want is another one, and especially not one as major as removing my bladder. I am so worn out from years of pain, surgeries, treatments,
family problems that right now at least I definitely am not ready for this major surgery and my uro says he needs four to six weeks notice if and when I decide I want the cystectomy.
We are having a very quiet Christmas this year as I need
to R & R, both emotionally and physically. I fear I will never feel strong enough to get through this devastating surgery at this point in my life.
Thank you for reading a short version of my life story and MERRY CHRISTMAS to all of you and I wish you a pain-free holiday!!
Louise
Of those surgeries, two involved placing 8 Titanium plates and screws in my pelvis to fuse my pubic bone which was fractured when a F150 truck backed into the right side of my vehicle. Because I have severe osteoporosis from a young age due to an early hysterectomy and family history, the pubic bone was very soft and osteoporotic, so the O.S. had to use twice as much of the pieces as planned. After a year I was experiencing severe pain from the titanium because I am a petite lady and there just wasn't enough room for all this in my pelvis. So I asked the O.S. to remove them. He was concerned (in fact he was very stressed because I was already experiencing a lot of pain) what the surgery would do to my bladder. Well, what it did was to royally flare it up!
I went 22 years feeling as if I had a UTI and bladder pain but lab tests always showed sterile. So as we found out eventually I had IC all these years but was receiving no treatment. So in 1999 my GP finally came up with the diagnosis of Interstitial Cystitis as the cause of all my symptoms and in particular the severe pain.
So for the last 12 years I have tried almost every IC treatment in the books but the pain was getting much worse and my husband and I don't have much of a life.
My uro suggested trying a C & H to see if it would give me some relief and I was at the point where I needed some HOPE in my life to continue. So four months ago I had the one-day procedure which turned into a week stay at the hospital because once the uro got me under and started the procedure, my bladder was perforated and I had infections. I was rushed back to the ER at 4 a.m. the next day with excruciating pain.
After I got back from recovery, my uro spoke to my husband and told him what happened and that he had never seen a bladder in such a terrible condition as mine in all his years in Urology. It is paper tissue thin, scarred and shrivelled, very small with low capacity and prone to further perforations. So I now have as stated above an end-stage bladder and his only option is to remove my bladder. As I stated at the beginning, I have already had 12 surgeries and the last thing I want is another one, and especially not one as major as removing my bladder. I am so worn out from years of pain, surgeries, treatments,
family problems that right now at least I definitely am not ready for this major surgery and my uro says he needs four to six weeks notice if and when I decide I want the cystectomy.
We are having a very quiet Christmas this year as I need
to R & R, both emotionally and physically. I fear I will never feel strong enough to get through this devastating surgery at this point in my life.
Thank you for reading a short version of my life story and MERRY CHRISTMAS to all of you and I wish you a pain-free holiday!!
Louise
I'm so sorry. I hope you enjoy your quiet Christmas.
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