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.
Wednesday, May 20, 2009
Letter to Family and Friends
Please note this letter was written a fellow endo sufferer, but hits home with many. If someone you know or care for is curious about endometriosis, make sure to direct them to this letter.
Dear Parents, Partners, Friends, Families, Employers & Doctors: We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking one last time for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities. We are not lazy, we are not a whiners, we do not make the pain up in our heads.
We have Endometriosis.
We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our everyday appearances. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our mental state.
When we call in sick, it's not because we need a mental health day or to go shopping. It's because we can't get out of bed from the pain. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?
When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are flaky females. It is because we are taking experimental drug therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no known cause or cure.
When we can't have relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.
When you as our parents can't understand that since you are healthy, we should be but aren't - try harder. We don't understand it either. We need your support more than anyone's.
When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our blood onto our daughters?
When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say. Don't give up on us now.
As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is normal for a woman to hurt. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? Are you not up to the challenge to find the answers?
To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't "hang out" and get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means. Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with. We have to face a society which doesn't even know the word endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, "it's all in your head", and "have a hysterectomy, it will cure you", and "get pregnant, it will also cure you", when we know that it won't and have been dealing with infertility for the last however many years. We in our 20's and 30's do not wish to give up our organs just yet. That would be like giving in to the endo. Can't you see that? We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis is a disease that affects all of us. Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones, we can contribute meaningfully to our work environments. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again. Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.
Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...we are asking you to take part in that battle and work with us on doing so. Wouldn't it be nice to have back the daughter, wife, friend or family member you once knew? Think about it.
Dear Parents, Partners, Friends, Families, Employers & Doctors: We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking one last time for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities. We are not lazy, we are not a whiners, we do not make the pain up in our heads.
We have Endometriosis.
We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our everyday appearances. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our mental state.
When we call in sick, it's not because we need a mental health day or to go shopping. It's because we can't get out of bed from the pain. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?
When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are flaky females. It is because we are taking experimental drug therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no known cause or cure.
When we can't have relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.
When you as our parents can't understand that since you are healthy, we should be but aren't - try harder. We don't understand it either. We need your support more than anyone's.
When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our blood onto our daughters?
When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say. Don't give up on us now.
As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is normal for a woman to hurt. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? Are you not up to the challenge to find the answers?
To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't "hang out" and get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means. Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with. We have to face a society which doesn't even know the word endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, "it's all in your head", and "have a hysterectomy, it will cure you", and "get pregnant, it will also cure you", when we know that it won't and have been dealing with infertility for the last however many years. We in our 20's and 30's do not wish to give up our organs just yet. That would be like giving in to the endo. Can't you see that? We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis is a disease that affects all of us. Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones, we can contribute meaningfully to our work environments. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again. Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.
Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...we are asking you to take part in that battle and work with us on doing so. Wouldn't it be nice to have back the daughter, wife, friend or family member you once knew? Think about it.
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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