Sorry I have been despondent recently. Sometimes I find my condition too much to bear and have to stop thinking it about it. But then the pain comes back and I am forced to confront it.
I have been off lupron for about six weeks now and just finished my first cycle since March. It was painful and although the normal indications are gone, the pain has remained. Such as life. I do not think the lupron helped, although I think it does help some people, just not me.
What angers me more than my pain, is the pain of others who are not as fortunate as me to receive superb care due to lack of insurance or having their endo deemed "pre-existing." I think if every American went without health insurance with a medical condition, the healthcare debate would not be a colossal screaming match, If we could just care about our neighbors the way we do after a natural disaster or terrorist attack, paying a little extra so your neighbors that may not be as well off as you, would not be a problem.
Keith Oberman has urged Americans to support health care clinics in the states in which there is much opposition from statesmen. Therefore, proving that there is a need for healthcare that helps the poor and underserved. So many of our politicians turn a blind eye to those that they see as of little importance. BUT WE ARE ALL IMPORTANT. Who am I to say that I deserve healthcare and you don’t? It is our generations' fight for civil rights. And people are dying because they do not receive adequate care. They die every day, every hour. But that could be stopped with proper healthcare regulations. Please do not conform to the republican boogeyman and do your research before deciding that reform would end all healthcare.
If you wish to no more about Keith Oberman's campaign to bring healthcare to those underserved in states that are fighting regulation, click here.
Showing posts with label lupron. Show all posts
Showing posts with label lupron. Show all posts
Friday, October 9, 2009
Wednesday, May 20, 2009
My Story
I always had painful periods and was lead to believe that it was just one of those things that women have to deal with. But the pain continued to get worse and worse. Of course, I still thought it to be normal. At the age of 18, I had immense pain on the right side of my pelvis to the point that I would pass out, literally dropping to the floor.
I went in for my first laparoscopy and they found my intestine wrapped around my ovary, choking it. However, they didn't find any endo. I was unfortunate enough to get a horrible surgeon, Dr. Cynthia Phillips who is no longer in practice. (Thank God!) She perforated my intestine and sent me home bleeding internally. Twelve hours later my mom rushed my back to the hospital because my lips literally peeled off due to lack of oxygen. Another 12 hours passes and I was back in the OR having emergency surgery that left a zipper like scar up my belly.
Two years later, I go to the ER because of horrific pain. They noticed a tumor or cyst on my right ovary and refer me to a OBGYN. Initially, they thought it to be a dermoid tumor – a very odd tumor that is benign but has teeth and hair in it. GROSS! As you may have guessed, that was not the case. In fact, it was a huge lump of endo. I remember being very upset because I knew a little about endo and knew that there was no cure.
As time went on, my endo got worse. I was told if I wanted to have children I better do it fast. I thought WTF! I'm only 22, have no boyfriend, am still in college and broke as a joke. How the heck am I going to get pregnant and better yet how will I pay for this kid. And, should I really have a child just for the sake of having one?
This messed with my head beyond belief and every guy I dated I immediately judged as to whether he was daddy material. The answer was always no.
I opted for Lupron instead of pregnancy. I got a shot every three months for six months. I don't remember this period very well. I think I blocked it out because I was so depressed, angry and alone with my disease. My mother remembers it well and reminds me of how mean and moody I was. The Lupron helped for a while and I had about two years of being relatively pain free.
After a while, I became indifferent about my disease. I was sick of dealing with it and I had lost my insurance so I couldn't get treatment anyway. Fortunately, my best friend also had the condition and helped me out when I was in extreme pain.
I let a couple of years pass, finished college, got a good job and INSURANCE. By then, my best friend had found a world class group of doctors and I followed her lead. Last February Dr. Mangal spent five hours removing my endo and my appendix. I was referred to Dr. Mathias who has done his own primary research and clinical trials and found that woman with endo have mini seizures in their colons. These seizures excite the nerves and aggravate the disease. He also found that we are insulin resistant and the sugar in our blood furthers the condition.
He put me on a low glycemic diet, meds for the seizures, Omega-3, Super vitamins and olive oil. In addition, I went on Lupron. However, this time it would be daily injections and add back therapy to cut down on the side effects.
I have to say that shooting up every morning is not the best part of waking up. But the thought of having children is.
So here I am coping with the hot flashes, crying and overall feeling crappy. Hoping that whoever reading this post realizes that they are not alone.
I went in for my first laparoscopy and they found my intestine wrapped around my ovary, choking it. However, they didn't find any endo. I was unfortunate enough to get a horrible surgeon, Dr. Cynthia Phillips who is no longer in practice. (Thank God!) She perforated my intestine and sent me home bleeding internally. Twelve hours later my mom rushed my back to the hospital because my lips literally peeled off due to lack of oxygen. Another 12 hours passes and I was back in the OR having emergency surgery that left a zipper like scar up my belly.
Two years later, I go to the ER because of horrific pain. They noticed a tumor or cyst on my right ovary and refer me to a OBGYN. Initially, they thought it to be a dermoid tumor – a very odd tumor that is benign but has teeth and hair in it. GROSS! As you may have guessed, that was not the case. In fact, it was a huge lump of endo. I remember being very upset because I knew a little about endo and knew that there was no cure.
As time went on, my endo got worse. I was told if I wanted to have children I better do it fast. I thought WTF! I'm only 22, have no boyfriend, am still in college and broke as a joke. How the heck am I going to get pregnant and better yet how will I pay for this kid. And, should I really have a child just for the sake of having one?
This messed with my head beyond belief and every guy I dated I immediately judged as to whether he was daddy material. The answer was always no.
I opted for Lupron instead of pregnancy. I got a shot every three months for six months. I don't remember this period very well. I think I blocked it out because I was so depressed, angry and alone with my disease. My mother remembers it well and reminds me of how mean and moody I was. The Lupron helped for a while and I had about two years of being relatively pain free.
After a while, I became indifferent about my disease. I was sick of dealing with it and I had lost my insurance so I couldn't get treatment anyway. Fortunately, my best friend also had the condition and helped me out when I was in extreme pain.
I let a couple of years pass, finished college, got a good job and INSURANCE. By then, my best friend had found a world class group of doctors and I followed her lead. Last February Dr. Mangal spent five hours removing my endo and my appendix. I was referred to Dr. Mathias who has done his own primary research and clinical trials and found that woman with endo have mini seizures in their colons. These seizures excite the nerves and aggravate the disease. He also found that we are insulin resistant and the sugar in our blood furthers the condition.
He put me on a low glycemic diet, meds for the seizures, Omega-3, Super vitamins and olive oil. In addition, I went on Lupron. However, this time it would be daily injections and add back therapy to cut down on the side effects.
I have to say that shooting up every morning is not the best part of waking up. But the thought of having children is.
So here I am coping with the hot flashes, crying and overall feeling crappy. Hoping that whoever reading this post realizes that they are not alone.
Tuesday, May 19, 2009
Letter to Oprah
Oprah,
I enjoyed your show last month on innovative ways to live longer. It gave me hope, hope that someday the disease that afflicts me will be better understood.
Seven years ago, I had intense pain in my pelvic cavity. After going to the emergency room, and eventually an OBGYN, I was told that I had a tumor or cyst on my ovary. I promptly scheduled surgery for the following week. The first thing I remember coming out was my mom telling me that it wasn’t a tumor, it was endometriosis. My heart dropped because I knew the type of tumor suspected was benign and had little chance of returning, but endometriosis has no cure and could mean a lifetime of pain, both emotionally and physically.
Endometriosis affects me almost every day. I recently underwent my third laparoscopy and have just started my second round of an experimental hormone therapy, Lupron. And, I’m not alone. According to the Endometriosis Association, Endometriosis “affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide.”
I could tell you about the immense amount of pain that I have been in most of my life, or the psychological damage of thinking that you are infertile and defective as a woman. But I won’t, because I’m one of the lucky ones. I recently gained health care to assist in the massive amount of medical bills. I don’t have any of the autoimmune diseases that tend to accompany endo like chronic fatigue syndrome, fibromyalgia and lupus. And probably the biggest reason I feel thankful, I still have my reproductive organs and a positive outlook for their future.
There are so many out there that are not as fortunate as myself. They suffer in ways that most couldn’t imagine or understand. One of the hardest obstacles we have to overcome is explaining to our family, friends and most importantly, ourselves the parameters of the disease. There are many theories including: Metaplasia—a form of embryonic tissue that transforms into reproductive organs, retrograde menstruation, genetic predisposition, immune system dysfunction, and environmental offenders. I believe that the truth lies in a combination of these theories.
As with their patients, most doctors don’t seem to completely get it either. The first group of doctors I went to only seemed to be concerned with me having children. I understand they meant well, but I was still in college, single and not ready to bring a child into this world, who I frankly couldn’t care for in the way they deserve. I now have an innovative set of doctors that have made my life more livable. My surgeon, Dr. Rakesh Mangal, was able to remove all of my endo and my appendix, which was suffocating in scar tissue. The doctor who I was referred to, Dr. John Mathias, is amazing! He has conducted his own research and discovered a course of treatment that both prevents the disease from returning and reduces pain through diet versus pain killers.
He believes that the colon is the “brain” of the endo and contributes to the growth as well as pain levels. Through his primary research, he found that women with endo have mini-seizures in their colon that aggravates and furthers the condition. He hooked my stomach up to a machine that measures seismic activity and let me listen to my tummy as it crunched each time it seized. He also found that woman with endo are insulin resistant and that sugar aggravates the condition and raises pain levels. I was completely amazed by his theories and his research.
He started out by providing a diet that I would consider a mix between a Mediterranean diet and the South Beach Diet, which basically includes fruits, vegetables, poultry, seafood and olive oil. He also has his patients take minerals and Omega-3, In addition, to medication to control the seizures and daily Lupron shots.
Lupron is an experimental hormone that tricks the woman’s body into artificial menopause with the intent to stop the production of estrogen and ovulation. Typically, it is administered monthly or every three months for a 3-6 month course of treatment. Dr. Mathias prefers daily because it cuts down on the intense side effects like mood swings, headaches, night sweats and hot flashes. I underwent this treatment before but in the traditional manner, one shot every three months for six months. My side effects were so bad, moodiness being at the forefront, that my mom said she would disown me if I tried it again.
While speaking to health insurance agent to get the Lupron covered, I met a girl in South Dakota that has endo. She was helping me through the red tape and realized we have the same condition. She commented that her doctor said it was rare for both her and her sister to be afflicted. I almost screamed because I know that women are a great deal more likely to have endo if their mother or sister do as well.
Awareness needs to be increased by leaps and bounds, not only within the general public, but between the woman who suffer and doctors who treat them. With the 5.5 million endo-afflicted women in the U.S. and Canada, “Endometriosis (is) more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility,” according to the Ohio State University Medical Center.
With those statistics, one in ten of your female viewers have endometriosis. And many, many more care about someone suffering with this disease. I belong to an online support group and every new friend I have talked to has asked me to write you, so that you may tell our story and shed some light on a misunderstood condition that effects so many.
I enjoyed your show last month on innovative ways to live longer. It gave me hope, hope that someday the disease that afflicts me will be better understood.
Seven years ago, I had intense pain in my pelvic cavity. After going to the emergency room, and eventually an OBGYN, I was told that I had a tumor or cyst on my ovary. I promptly scheduled surgery for the following week. The first thing I remember coming out was my mom telling me that it wasn’t a tumor, it was endometriosis. My heart dropped because I knew the type of tumor suspected was benign and had little chance of returning, but endometriosis has no cure and could mean a lifetime of pain, both emotionally and physically.
Endometriosis affects me almost every day. I recently underwent my third laparoscopy and have just started my second round of an experimental hormone therapy, Lupron. And, I’m not alone. According to the Endometriosis Association, Endometriosis “affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide.”
I could tell you about the immense amount of pain that I have been in most of my life, or the psychological damage of thinking that you are infertile and defective as a woman. But I won’t, because I’m one of the lucky ones. I recently gained health care to assist in the massive amount of medical bills. I don’t have any of the autoimmune diseases that tend to accompany endo like chronic fatigue syndrome, fibromyalgia and lupus. And probably the biggest reason I feel thankful, I still have my reproductive organs and a positive outlook for their future.
There are so many out there that are not as fortunate as myself. They suffer in ways that most couldn’t imagine or understand. One of the hardest obstacles we have to overcome is explaining to our family, friends and most importantly, ourselves the parameters of the disease. There are many theories including: Metaplasia—a form of embryonic tissue that transforms into reproductive organs, retrograde menstruation, genetic predisposition, immune system dysfunction, and environmental offenders. I believe that the truth lies in a combination of these theories.
As with their patients, most doctors don’t seem to completely get it either. The first group of doctors I went to only seemed to be concerned with me having children. I understand they meant well, but I was still in college, single and not ready to bring a child into this world, who I frankly couldn’t care for in the way they deserve. I now have an innovative set of doctors that have made my life more livable. My surgeon, Dr. Rakesh Mangal, was able to remove all of my endo and my appendix, which was suffocating in scar tissue. The doctor who I was referred to, Dr. John Mathias, is amazing! He has conducted his own research and discovered a course of treatment that both prevents the disease from returning and reduces pain through diet versus pain killers.
He believes that the colon is the “brain” of the endo and contributes to the growth as well as pain levels. Through his primary research, he found that women with endo have mini-seizures in their colon that aggravates and furthers the condition. He hooked my stomach up to a machine that measures seismic activity and let me listen to my tummy as it crunched each time it seized. He also found that woman with endo are insulin resistant and that sugar aggravates the condition and raises pain levels. I was completely amazed by his theories and his research.
He started out by providing a diet that I would consider a mix between a Mediterranean diet and the South Beach Diet, which basically includes fruits, vegetables, poultry, seafood and olive oil. He also has his patients take minerals and Omega-3, In addition, to medication to control the seizures and daily Lupron shots.
Lupron is an experimental hormone that tricks the woman’s body into artificial menopause with the intent to stop the production of estrogen and ovulation. Typically, it is administered monthly or every three months for a 3-6 month course of treatment. Dr. Mathias prefers daily because it cuts down on the intense side effects like mood swings, headaches, night sweats and hot flashes. I underwent this treatment before but in the traditional manner, one shot every three months for six months. My side effects were so bad, moodiness being at the forefront, that my mom said she would disown me if I tried it again.
While speaking to health insurance agent to get the Lupron covered, I met a girl in South Dakota that has endo. She was helping me through the red tape and realized we have the same condition. She commented that her doctor said it was rare for both her and her sister to be afflicted. I almost screamed because I know that women are a great deal more likely to have endo if their mother or sister do as well.
Awareness needs to be increased by leaps and bounds, not only within the general public, but between the woman who suffer and doctors who treat them. With the 5.5 million endo-afflicted women in the U.S. and Canada, “Endometriosis (is) more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility,” according to the Ohio State University Medical Center.
With those statistics, one in ten of your female viewers have endometriosis. And many, many more care about someone suffering with this disease. I belong to an online support group and every new friend I have talked to has asked me to write you, so that you may tell our story and shed some light on a misunderstood condition that effects so many.
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