It started with the occasional sneeze – urine just came out of me. I had no control. It also happened when I laughed or coughed. At first I wasn’t too concerned about it and thought it would gradually get better. But after time it got worse instead of better. My doctor said that when my estrogen level got higher, it might get better and go away. But even tweaking my estrogen replacement therapy has had no effect. The other theory was that this issue could be a result of my hysterectomy. There’s a muscle under the bladder, kind of like a sling, that can drop when the uterus is no longer there to hold it up. This meant that I could have a prolapsed bladder.
So I was at a party recently and out on the dance floor – the dj was playing my favorite music. I was wearing linen pants and all of a sudden my entire bladder emptied. Woosh. It was completely beyond my control. Suddenly I was drenched. And mortified. Thank goodness it was dark. Somehow I managed to get off the dance floor and went to the bathroom where I peeled off my soaked pants, rinsed them out and blew them dry. I went back to the party but stayed far away from the dance floor. I was so humiliated.
My doctor then suggested using a femring but it hasn’t helped me at all. As much as I love to dance and exercise, I haven't been able to do either. I'm too afraid that it will happen again.
What I’ve learned since is that at the time of the surgery, my surgeon could have fixed this problem – he could have done something to support the muscle. Only no one told me. I could get the surgery now to get it fixed but it’s another major surgery. I'd have several weeks of recovery. I swear that surgeons don’t tell you about this potential incontinence problem so that you’ll go back for another surgery and pay more money. My public relations consultant knew this. He's the first person I called after the horrible incident on the dance floor. He told me immediately that I had a prolapsed bladder. Why is it that my p.r. consultant can identify my prolapsed bladder and know how to treat it and my surgeon didn’t even forewarn me?
One of my good friends lived with incontinence for 25 years – she would have rather had a face lift than a bladder lift. The prospect overwhelmed her. Most women don’t believe that the problem can be fixed. Another problem is that women aren’t even willing to admit this problem. How many women are living with this and silently suffering? It’s humiliating -- so completely embarrassing! And here I am in the midst of it and yet I’m afraid to go under the knife again. When I go under for a prolapsed bladder, then what will my next problem be? Will there be yet another complication that a surgeon won't forewarn me about?
I was asked to participate in Dancing with the Stars in Arizona, which would be an absolute dream for me, but I can’t even think about dancing because of what I'm sure will happen.
A California researcher has shown that women who have had hysterectomies are 40% more likely to suffer from urinary incontinence that those that have not had a hysterectomy. However women who are under 60 years of age did not appear to have an increase in the likelihood of becoming incontinent and it seems that the symptoms appear 5 - 10 years after surgery. Researchers concluded that women are not counselled about the long-term health implications of hysterectomy.(The Lancet; 2000; 356: pp535-539)
where did my cervix go?
When I had my first appointment with Dr. Elizabeth Vliet, the nationally-renowned hormone expert who gave me back my life after a year of hell following my hysterectomy, she asked me a question about my body that I couldn't answer. She asked me if I still had my cervix.
I had no idea. I assumed that since I'd had a complete hysterectomy that my cervix had been taken out as well. Or had it? And would I even know? I wasn't even sure where a cervix is, much less what it did. Why do we even need a cervix?
I ended up calling my doctor who had performed my hysterectomy and found out that my cervix had indeed been removed. But why wasn't I told? Isn't this something I should have given permission for? (And was he paid a little more for removing my cervix?) Funny enough, I'd had my cervix for over four decades, during which time I gave birth to my beautiful daughter, and yet I'm not even sure what the purpose of a cervix is or what it looks like.
Researchers have suggested that it was the desire to prevent future cervical cancer that underlay the advocacy of total hysterectomy, removing the cervix as well as the uterus. However, they are now suggesting that it can have an adverse effect on bladder, bowel and sexual function, and the reduced operating time and shorter recovery period associated with not removing the cervix outweigh the potential benefits. As a result appropriate patients should all be offered the option of retaining the cervix.(AM J Obstet Gynecol; Mar 1999; 180:3; Pt 1; 513-5)
I had no idea. I assumed that since I'd had a complete hysterectomy that my cervix had been taken out as well. Or had it? And would I even know? I wasn't even sure where a cervix is, much less what it did. Why do we even need a cervix?
I ended up calling my doctor who had performed my hysterectomy and found out that my cervix had indeed been removed. But why wasn't I told? Isn't this something I should have given permission for? (And was he paid a little more for removing my cervix?) Funny enough, I'd had my cervix for over four decades, during which time I gave birth to my beautiful daughter, and yet I'm not even sure what the purpose of a cervix is or what it looks like.
Researchers have suggested that it was the desire to prevent future cervical cancer that underlay the advocacy of total hysterectomy, removing the cervix as well as the uterus. However, they are now suggesting that it can have an adverse effect on bladder, bowel and sexual function, and the reduced operating time and shorter recovery period associated with not removing the cervix outweigh the potential benefits. As a result appropriate patients should all be offered the option of retaining the cervix.(AM J Obstet Gynecol; Mar 1999; 180:3; Pt 1; 513-5)
sharing the truth: why you should think first before you give up your ovaries
Before I had my hysterectomy, my doctor advised me to have my uterus removed because of endometriosis. So I took that as a given. But my ovaries were another story. I wasn't sure if it was necessary to have them removed also, which is what happens when you have a complete hysterectomy.
But my doctor was very persistent in recommending that I have my ovaries removed also.
He said that 20% of his patients who haven’t had their ovaries removed come back to him later with ovarian cancer. He strongly advised me to remove my ovaries for this reason. Based on that statistic, I figured he was right, so I decided to have my ovaries removed. Plus, there was the fact that a very close friend of mine had died of ovarian cancer.
In retrospect, though, no one sat down with me and went over the pros and cons of having my ovaries removed. All I knew about was the ovarian cancer statistic that my doctor laid out. I didn't understand the implications of no longer having ovaries that produced the hormones I need to function.
What I didn't know back then that I know now is this: you can still get ovarian cancer when you have no ovaries. Can you believe that? Even when your ovaries are removed, there still may be cells left behind that can develop into cancer.
We're being misled -- this is a prime example of the misinformation that exists out there.
So I had my ovaries removed, and subsequently have gone through hell getting and keeping my hormones balanced over the years by taking hormone replacement therapy. Looking back and knowing the quality of my life since my hysterectomy, I never would have had my ovaries removed. Then I wouldn't have had this complete dependence on hormone replacement therapy.
But my doctor was very persistent in recommending that I have my ovaries removed also.
He said that 20% of his patients who haven’t had their ovaries removed come back to him later with ovarian cancer. He strongly advised me to remove my ovaries for this reason. Based on that statistic, I figured he was right, so I decided to have my ovaries removed. Plus, there was the fact that a very close friend of mine had died of ovarian cancer.
In retrospect, though, no one sat down with me and went over the pros and cons of having my ovaries removed. All I knew about was the ovarian cancer statistic that my doctor laid out. I didn't understand the implications of no longer having ovaries that produced the hormones I need to function.
What I didn't know back then that I know now is this: you can still get ovarian cancer when you have no ovaries. Can you believe that? Even when your ovaries are removed, there still may be cells left behind that can develop into cancer.
We're being misled -- this is a prime example of the misinformation that exists out there.
So I had my ovaries removed, and subsequently have gone through hell getting and keeping my hormones balanced over the years by taking hormone replacement therapy. Looking back and knowing the quality of my life since my hysterectomy, I never would have had my ovaries removed. Then I wouldn't have had this complete dependence on hormone replacement therapy.
Being in helpless patient mode
I really believe that women tend to go to a certain state of mind when they're patients and relying on a doctor's care. It's called "helpless patient mode." Ironically, when we have a sick child, spouse or other loved one, we can be a doctor's biggest nightmare. We're brilliant and strong when advocating for a loved one. A mother will do an inordinate amount of research and will carefully question the pediatrician when her child is ill. But when she is ill, it’s another story altogether. Women tend to do what their doctors tell them to do. We don't listen to ourselves, to our guts. We simply want that doctor to fix us, give us that magic pill, and quick, so we can go about doing all the millions of things we do to take care of other people.
I admit that I'm totally guilty of this. Big-time. In fact, my hysterectomy may not have even happened if I hadn't succombed to the all-too-easy "helpless patient mode." I may have chosen another option. If I'd known of the other options. If I hadn't relied so completely on what I was told was my only option.
Before my hysterectomy, I developed horrible reflux. I always had a sick feeling in my stomach and was diagnosed with Irritable Bowel Syndrome. I followed my doctor's advice and took medicine for the reflux and other medication for the IBS. By taking the pills as prescribed, I took it for granted that it was just a matter of time and I would get better.
Time passed and I went on with my life, ignoring the fact that I was not getting any better. I learned to compensate for my bowel issues and kept up the façade required in my day to day routine; philanthropy work, traveling and attending functions. But no amount of compensation would make the reflux and IBS go away. In fact I got worse – much worse -- and landed in the hospital with Diverticulosis. There were tears in the lining of my bowel that failed to heal and, as a result, they formed pockets. The pain was excruciating. I thought I was going to die. Soon the Diverticulosis developed into an infection, called Diverticulitis. I was hospitalized for five days, with two strong antibiotics, Flagil and Cypro, pumping into my system. On the second day, I was completely numb from the waist down. I was terrified, with no idea what was wrong with me. No one had warned me that numbness in the legs is a side effect of Flagil.
Back then, I was obviously in the "helpless patient mode." But then again, I was so sick that I couldn't exactly advocate for myself. Instead I went along with my doctor's advice to have a complete hysterectomy, which apparently would solve my endometriosis issue and all the other issues I was having. It was supposed to be the answer -- that quick cure, "magic pill" that I so desperately wanted in order to get my life back.
I admit that I'm totally guilty of this. Big-time. In fact, my hysterectomy may not have even happened if I hadn't succombed to the all-too-easy "helpless patient mode." I may have chosen another option. If I'd known of the other options. If I hadn't relied so completely on what I was told was my only option.
Before my hysterectomy, I developed horrible reflux. I always had a sick feeling in my stomach and was diagnosed with Irritable Bowel Syndrome. I followed my doctor's advice and took medicine for the reflux and other medication for the IBS. By taking the pills as prescribed, I took it for granted that it was just a matter of time and I would get better.
Time passed and I went on with my life, ignoring the fact that I was not getting any better. I learned to compensate for my bowel issues and kept up the façade required in my day to day routine; philanthropy work, traveling and attending functions. But no amount of compensation would make the reflux and IBS go away. In fact I got worse – much worse -- and landed in the hospital with Diverticulosis. There were tears in the lining of my bowel that failed to heal and, as a result, they formed pockets. The pain was excruciating. I thought I was going to die. Soon the Diverticulosis developed into an infection, called Diverticulitis. I was hospitalized for five days, with two strong antibiotics, Flagil and Cypro, pumping into my system. On the second day, I was completely numb from the waist down. I was terrified, with no idea what was wrong with me. No one had warned me that numbness in the legs is a side effect of Flagil.
Back then, I was obviously in the "helpless patient mode." But then again, I was so sick that I couldn't exactly advocate for myself. Instead I went along with my doctor's advice to have a complete hysterectomy, which apparently would solve my endometriosis issue and all the other issues I was having. It was supposed to be the answer -- that quick cure, "magic pill" that I so desperately wanted in order to get my life back.
Hormones, hormones, hormones .... why aren't we getting them in balance?
Medical professionals receive little or no training regarding women’s hormones. Herein lies the problem.
There are at least 96 research reports that come out every single day. Of those 96, a doctor is lucky to find time in the day to read one or two. In recent years, the powerful connection of hormones and the overall health and function of a woman’s body has been given slightly more attention than in the past. We still have far to go.
For the most part, women are barraged by misinformation in the media and inconsistency in the medical community. When I was suffering horribly from debilitating symptoms caused by my body’s hormonal imbalance, I was passed around from specialist to specialist, hoping for some miracle cure, but not receiving any solid answers. Doctors offered to treat my symptoms, but the root cause of those symptoms was left unaddressed. What I know now is that my symptoms are par for the course when it comes to perimenopause and menopause. But why didn't all those doctors know that??
Several years have passed since I had my hysterectomy and yet women are still faced with doctors who treat them for each individual symptom rather than the root cause: hormonal imbalance. I'm amazed when I visit online health forums and women are taking a slew of medications and alternative therapies for a long list of symptoms like hot flashes, joint pain, depression, dry eyes, etc. They're being loaded up with all kinds of "band-aids" when what they really need to do is have their hormone levels tested.
There are at least 96 research reports that come out every single day. Of those 96, a doctor is lucky to find time in the day to read one or two. In recent years, the powerful connection of hormones and the overall health and function of a woman’s body has been given slightly more attention than in the past. We still have far to go.
For the most part, women are barraged by misinformation in the media and inconsistency in the medical community. When I was suffering horribly from debilitating symptoms caused by my body’s hormonal imbalance, I was passed around from specialist to specialist, hoping for some miracle cure, but not receiving any solid answers. Doctors offered to treat my symptoms, but the root cause of those symptoms was left unaddressed. What I know now is that my symptoms are par for the course when it comes to perimenopause and menopause. But why didn't all those doctors know that??
Several years have passed since I had my hysterectomy and yet women are still faced with doctors who treat them for each individual symptom rather than the root cause: hormonal imbalance. I'm amazed when I visit online health forums and women are taking a slew of medications and alternative therapies for a long list of symptoms like hot flashes, joint pain, depression, dry eyes, etc. They're being loaded up with all kinds of "band-aids" when what they really need to do is have their hormone levels tested.
Where is my life??
(This is me, right after I had a complete hysterectomy. It's been several years, but this time in my life is indelibly imprinted in my mind....)
On the outside it appears as if I have everything a woman could possibly want. I'm living a fairy tale life with a wonderful husband, extraordinary daughter, and a beautiful home. But on the inside I am crumbling. Disintegrating. And slowly. I'm trapped in a body that I no longer know, as if my mind and heart have been plucked from my old, familiar body and thrust into a new one that is not only foreign, it is falling apart.
When you’re ill, it’s hard to remember what it was ever like to feel good. It’s easy to lose hope. That’s where I am now, lying in bed, gazing at the ceiling above the window that faces the backyard. I watch the swirl of reflected light from the swimming pool dancing on the ceiling until my eyes blur over and my eyelids fall shut. I don’t have the energy to open them again. I hear my housekeeper stirring in my closet and wish that she would leave. She's no help to me. She can organize my closet. She can make polite excuses to my friends whose phone calls I don't have the strength to return. She can supply me an endless supply of clean sheets that I need more and more frequently because of my horrible night sweats. But she can’t do what I really need. What I desperately need. She can’t lift me from this body that can barely crawl from the bed where I lay; trapped, inert, and waiting for my fairy tale turned nightmare to be over.
On the outside it appears as if I have everything a woman could possibly want. I'm living a fairy tale life with a wonderful husband, extraordinary daughter, and a beautiful home. But on the inside I am crumbling. Disintegrating. And slowly. I'm trapped in a body that I no longer know, as if my mind and heart have been plucked from my old, familiar body and thrust into a new one that is not only foreign, it is falling apart.
When you’re ill, it’s hard to remember what it was ever like to feel good. It’s easy to lose hope. That’s where I am now, lying in bed, gazing at the ceiling above the window that faces the backyard. I watch the swirl of reflected light from the swimming pool dancing on the ceiling until my eyes blur over and my eyelids fall shut. I don’t have the energy to open them again. I hear my housekeeper stirring in my closet and wish that she would leave. She's no help to me. She can organize my closet. She can make polite excuses to my friends whose phone calls I don't have the strength to return. She can supply me an endless supply of clean sheets that I need more and more frequently because of my horrible night sweats. But she can’t do what I really need. What I desperately need. She can’t lift me from this body that can barely crawl from the bed where I lay; trapped, inert, and waiting for my fairy tale turned nightmare to be over.
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