Oprah Please do a show on Endometriosis
Target:
Oprah Winfrey Show
Sponsored by:
Endometriosis is a disease that is more prevalent in women world wide than Breast Cancer! It's the disease that young teens and women are silently suffering with. There is NO Cure and awareness needs to be raised for this disease so that the medical community will become educated and start properly diagnosing the symptoms. We need funding for research for a CURE and better options than just hormone treatments. Join Advocate Stephanie St. James in her goal to get The Oprah Winfey show to dedicate an hour to the disease so that women who are suffering the symptoms can have a name to what is going on with their bodies.
Endometriosis is a disease that is more prevalent in women world wide than Breast Cancer! It's the disease that young teens and women are silently suffering with. There is NO Cure and awareness needs to be raised for this disease so that the medical community will become educated and start properly diagnosing the symptoms. We need funding for research for a CURE and better options than just hormone treatments. Join Advocate Stephanie St. James in her goal to get The Oprah Winfey show to dedicate an hour to the disease so that women who are suffering the symptoms can have a name to what is going on with their bodies.
We the undersigned would like for the Producers of the Oprah Winfrey Show to show your support for Endometriosis.
Millions of Women Worldwide are suffering silently from Endometriosis. A disease more prevalent in women worldwide than Breast Cancer. Stephanie St. James an Advocate for the disease and a sufferer of the disease who is an also an NAACP Theater Award Nominated Actress for her role in Oprah Winfrey Presents "The Color Purple" has been advocating publicly to raise awareness for Endometriosis. She would like to appear on the Oprah Winfrey show along with leading medical specialist in the disease so that Awareness can be raised. Stephanie and millions of women and doctors in the medical community would like to see Ms. Winfrey do a show on Endometriosis. We need the support of Oprah to raise Awareness so that the medical community can also %uFFFDgain knowledge of the disease and no longer give false diagnosis to their patients. With Oprah's support and interest in doing a show on Endometriosis it could save so many young girls and women from suffering for decades without being properly diagnosed. There is NO CURE for Endometriosis and we would like to begin progressing towards finding a Cure so that women no longer have to suffer.
Please Show us your support by doing a show dedicated to Endometriosis.
Thank you for your time and we look forward to hearing from you!
Millions of Women Worldwide are suffering silently from Endometriosis. A disease more prevalent in women worldwide than Breast Cancer. Stephanie St. James an Advocate for the disease and a sufferer of the disease who is an also an NAACP Theater Award Nominated Actress for her role in Oprah Winfrey Presents "The Color Purple" has been advocating publicly to raise awareness for Endometriosis. She would like to appear on the Oprah Winfrey show along with leading medical specialist in the disease so that Awareness can be raised. Stephanie and millions of women and doctors in the medical community would like to see Ms. Winfrey do a show on Endometriosis. We need the support of Oprah to raise Awareness so that the medical community can also %uFFFDgain knowledge of the disease and no longer give false diagnosis to their patients. With Oprah's support and interest in doing a show on Endometriosis it could save so many young girls and women from suffering for decades without being properly diagnosed. There is NO CURE for Endometriosis and we would like to begin progressing towards finding a Cure so that women no longer have to suffer.
Please Show us your support by doing a show dedicated to Endometriosis.
Thank you for your time and we look forward to hearing from you!
We signed the "Oprah Please do a show on Endometriosis" petition!
# 645:
2:21 pm PST, Nov 6,
Kathleen Cassidy, New York
I believe if this disease was taking seriously and that the public new how much money MUST be paid in order to get any sort of pain management, they would finally cover it with insurance. I have paid over 30,000 dollars and have since moved back in with my mother (along with my husband)...
I believe if this disease was taking seriously and that the public new how much money MUST be paid in order to get any sort of pain management, they would finally cover it with insurance. I have paid over 30,000 dollars and have since moved back in with my mother (along with my husband)...
# 644:
9:37 am PST, Nov 4,
Paula Freese, California
# 643:
9:01 am PST, Nov 4,
Darla Lane, Missouri
# 642:
8:32 am PST, Nov 4,
Hope Meyermann, Iowa
# 641:
8:18 am PST, Nov 4,
Ashley Wingerter, Iowa
I have been suffering from endometriosis for a long time and it is controlling my life. We need more research, so we can find a cure for this!
I have been suffering from endometriosis for a long time and it is controlling my life. We need more research, so we can find a cure for this!
# 640:
3:11 am PST, Nov 3,
Deborah Thurlow-Rowley, United Kingdom
Please raise awareness, I personally wanted my career so much...I'm so sick of being sick!! Please help to raise awareness and help to find a cure...please...x
Please raise awareness, I personally wanted my career so much...I'm so sick of being sick!! Please help to raise awareness and help to find a cure...please...x
# 639:
10:39 am PST, Nov 2,
Leigh Elderbroom, Canada
This is a disease that seriously effects all aspects of a girl's life. Thousands of girls go through this without any knowledge of Endometriosis and would greatly benefit hearing about it. I cannot count how many health professionals are ignorant to it and misdiagnose women for years. Also hundreds of thousands of women go through lack of compassion because of business colleagues, family, husbands, lovers, boyfriends, friends, ect, do not understand their pain. It's invisible and impossible to see. Please do a show and help educate about this horrible disease!
This is a disease that seriously effects all aspects of a girl's life. Thousands of girls go through this without any knowledge of Endometriosis and would greatly benefit hearing about it. I cannot count how many health professionals are ignorant to it and misdiagnose women for years. Also hundreds of thousands of women go through lack of compassion because of business colleagues, family, husbands, lovers, boyfriends, friends, ect, do not understand their pain. It's invisible and impossible to see. Please do a show and help educate about this horrible disease!
# 638:
8:20 am PST, Nov 2,
Crystal Davis, Pennsylvania
I am 20 years old and have endometriosis. I had a laparoscopy done and now my pain and symptoms are worse than before. I am sick of being told to either "get pregnant" or "have a hysterectomy" to "cure" this disease; both of these things we KNOW do NOT provide a cure. I don't want to feel so alone and I dont' want to live with the horrible pain and the feeling that I am "less of a woman" for the rest of my life. Please help us spread awareness and work towards effective treatment, then a cure.
I am 20 years old and have endometriosis. I had a laparoscopy done and now my pain and symptoms are worse than before. I am sick of being told to either "get pregnant" or "have a hysterectomy" to "cure" this disease; both of these things we KNOW do NOT provide a cure. I don't want to feel so alone and I dont' want to live with the horrible pain and the feeling that I am "less of a woman" for the rest of my life. Please help us spread awareness and work towards effective treatment, then a cure.
# 637:
6:18 am PST, Nov 1,
Nadia Benson, United Kingdom
Hi everyone. Im 22 and have just been diagnosed with endo sfter having a laproscopy. It has also given me other complications such as adhesions.Ive been in constant pain for the last 6 months of my life, in and out of hospital because the pain has been so bad. Ive been diagnosed with all sorts of things. I guess Whats most frustrating is that its taken so long just to prove to doctors that im not plain crazy, and im not making this pain up! every day is just a constant struggle. its so bad i cant even walk properly without being in aganoy. I cant say i have suffered as long as many of you other ladies, but something needs to be done about raising awareness of delibating disease, which is affecting our everyday lives.Please please help us!!
Hi everyone. Im 22 and have just been diagnosed with endo sfter having a laproscopy. It has also given me other complications such as adhesions.Ive been in constant pain for the last 6 months of my life, in and out of hospital because the pain has been so bad. Ive been diagnosed with all sorts of things. I guess Whats most frustrating is that its taken so long just to prove to doctors that im not plain crazy, and im not making this pain up! every day is just a constant struggle. its so bad i cant even walk properly without being in aganoy. I cant say i have suffered as long as many of you other ladies, but something needs to be done about raising awareness of delibating disease, which is affecting our everyday lives.Please please help us!!
# 636:
12:33 am PDT, Nov 1,
Amber Henderson, Australia
I am sick of being told the only answer is hormones that mess with your head or go under the knife. What else can be done. Enough is enough
I am sick of being told the only answer is hormones that mess with your head or go under the knife. What else can be done. Enough is enough
# 635:
5:50 pm PDT, Oct 28,
Farrar Celada, Florida
Dear Producers, Recently, the Cochrane Data Review reported that Chinese herbal medicine treatment of endometriosis was superior to medication. I have used Chinese herbs for several years with infertility patients suffering from this condition and have seen unbelievable results when subsequent laparoscopies were performed that showed little to no endometriosis left. Pregnancy was another good side effect of the use of Chinese herbs as well as acupuncture. Please consider doing a show on endometriosis and let women know that they have a natural choice free of side effects. For more information on the Cochrane Review of this, please go to http://www.cochrane.org/reviews/en/ab006568.html Thank you for helping to get the message out to millions of women afflicted with this. Respectfully, Farrar Celada, AP, FABORM
Dear Producers, Recently, the Cochrane Data Review reported that Chinese herbal medicine treatment of endometriosis was superior to medication. I have used Chinese herbs for several years with infertility patients suffering from this condition and have seen unbelievable results when subsequent laparoscopies were performed that showed little to no endometriosis left. Pregnancy was another good side effect of the use of Chinese herbs as well as acupuncture. Please consider doing a show on endometriosis and let women know that they have a natural choice free of side effects. For more information on the Cochrane Review of this, please go to http://www.cochrane.org/reviews/en/ab006568.html Thank you for helping to get the message out to millions of women afflicted with this. Respectfully, Farrar Celada, AP, FABORM
# 634:
2:01 pm PDT, Oct 25,
Amy Higgins-Margalli, Florida
My endometriosis has been a constant struggle in my life throughout my late teens, twenties and now early thirties. The pain is excruciating. The surgeries are extremely painful, the treatments last less than a year. It has taken a toll on my everyday life. I'm severely depressed, I was told it was in my head, I was told to see a psychiatrist because I could not be in that much pain, my older sister and I both had our appendix out, because back then the drs. did not know enough about endometriosis. I cannot have a hysterectomy because it is on my bowel and bladder. I am frustrated, and all I want to do is cry, because I'm angry that there is not enough attention on this. It's just another womans disease that we have to deal with. If men had something like this, there would have been a cure 20 years ago. I'm angry, frustrated, in pain, and tired of surgery that lasts almost a year. I just got married, and I do not want to have children yet, IF I can have children, some say it may help the disease. I'm not going to have a baby to possibly get rid of a disease. Oprah, please read our pleas. We really need national attention brought to this serious disease that most of us have to suffer in silence. How do you tell your male friends, professors, teachers why you need to leave the classroom, why you need to skip an exam. Please listen to us and please help us. Hopefully more women will come out and see their doctors and get some kind of treatment, and hopefully, more testing will happen to make this a disease of the past for my grandchildren....if I am lucky enough to have them. Thank you.
My endometriosis has been a constant struggle in my life throughout my late teens, twenties and now early thirties. The pain is excruciating. The surgeries are extremely painful, the treatments last less than a year. It has taken a toll on my everyday life. I'm severely depressed, I was told it was in my head, I was told to see a psychiatrist because I could not be in that much pain, my older sister and I both had our appendix out, because back then the drs. did not know enough about endometriosis. I cannot have a hysterectomy because it is on my bowel and bladder. I am frustrated, and all I want to do is cry, because I'm angry that there is not enough attention on this. It's just another womans disease that we have to deal with. If men had something like this, there would have been a cure 20 years ago. I'm angry, frustrated, in pain, and tired of surgery that lasts almost a year. I just got married, and I do not want to have children yet, IF I can have children, some say it may help the disease. I'm not going to have a baby to possibly get rid of a disease. Oprah, please read our pleas. We really need national attention brought to this serious disease that most of us have to suffer in silence. How do you tell your male friends, professors, teachers why you need to leave the classroom, why you need to skip an exam. Please listen to us and please help us. Hopefully more women will come out and see their doctors and get some kind of treatment, and hopefully, more testing will happen to make this a disease of the past for my grandchildren....if I am lucky enough to have them. Thank you.
# 633:
3:25 pm PDT, Oct 23,
Name not displayed, Michigan
# 632:
2:02 pm PDT, Oct 23,
Elizabeth Benson, Oregon
I suffered for many years from this and it finally resulted in a hystorectomy when I was 25.....I wish more women knew about it and the side effects of treatment for this disease.
I suffered for many years from this and it finally resulted in a hystorectomy when I was 25.....I wish more women knew about it and the side effects of treatment for this disease.
# 631:
8:05 pm PDT, Oct 22,
Kassandra Cohen, Indiana
# 629:
5:01 pm PDT, Oct 22,
Sara Bensman, Illinois
I have had a sister who has suffered the tragadies of Endo. She is my only sister and best friend and am luck enough to have one wonderful little nephew from her. Her struggles to conceive were and still are heartbreaking. I have been on the receiving end of some tearful phone calls about the pain and questions of infertility that Endo brings. We have a very stong family history of Endo and i am fearful that at my age of 25 that if i find the right person i may not be able to conceive on my own. Hopefully this will open the eyes of people and we may be able to nip this thing in the behind!!!!!
I have had a sister who has suffered the tragadies of Endo. She is my only sister and best friend and am luck enough to have one wonderful little nephew from her. Her struggles to conceive were and still are heartbreaking. I have been on the receiving end of some tearful phone calls about the pain and questions of infertility that Endo brings. We have a very stong family history of Endo and i am fearful that at my age of 25 that if i find the right person i may not be able to conceive on my own. Hopefully this will open the eyes of people and we may be able to nip this thing in the behind!!!!!
# 628:
3:25 pm PDT, Oct 22,
Georgia Henderson, Oregon
# 627:
2:51 pm PDT, Oct 22,
KATRINA COLEMAN, Oregon
My sister has it and it has put a huge damper on her life. It sounds SO PAINFUL. and our female parts are so precious. Luckily she has a beautiful son and maybe will be able to have more kids someday
My sister has it and it has put a huge damper on her life. It sounds SO PAINFUL. and our female parts are so precious. Luckily she has a beautiful son and maybe will be able to have more kids someday
# 626:
2:44 pm PDT, Oct 22,
Erica Coleman, Oregon
I've written a letter to you personally. please help!!!!
I've written a letter to you personally. please help!!!!
# 625:
6:11 pm PDT, Oct 18,
April Sekerak, Pennsylvania
# 624:
8:16 pm PDT, Oct 17,
Melonise Day, Texas
# 623:
6:30 pm PDT, Oct 16,
Chelsea Cross-Hair, New Zealand
I have suffered from Endo from as young as 14 and had no idea what it was until i was 17, its not even a straight forward process, then to go through surgery after surgery with no guarantee that it would even get better is such a horrible and debilitating thing to experience, as a woman you know eventually your calling is to have children so when you get told im sorry your insides are too damaged to ever have children,it is horrifying, heartbreaking and so damaging... at 20 i got told that i couldn't have kids and if i got pregnant i wouldn't carry a baby to full term... i prayed and prayed and cried so much. I am now 23 and have 2 children for me they are a true miracle.... this is not the case for most of us who have Endo. Still the endo sits an waits to come back i feel it an close my eyes hoping it stays away a bit longer...Please make people aware of this.
I have suffered from Endo from as young as 14 and had no idea what it was until i was 17, its not even a straight forward process, then to go through surgery after surgery with no guarantee that it would even get better is such a horrible and debilitating thing to experience, as a woman you know eventually your calling is to have children so when you get told im sorry your insides are too damaged to ever have children,it is horrifying, heartbreaking and so damaging... at 20 i got told that i couldn't have kids and if i got pregnant i wouldn't carry a baby to full term... i prayed and prayed and cried so much. I am now 23 and have 2 children for me they are a true miracle.... this is not the case for most of us who have Endo. Still the endo sits an waits to come back i feel it an close my eyes hoping it stays away a bit longer...Please make people aware of this.
# 622:
9:09 am PDT, Oct 16,
Sarah Bateman, Canada
# 621:
2:36 am PDT, Oct 16,
Name not displayed, United Kingdom
endometriosis is a frightening,debilitating beast which has taken away much of my life. I,like many, was misdiagnosed (& doubted for much of a decade), whilst the disease was running rampant inside me. We are met with prejudice & made to feel neurotic when the truth is we experience unbelievable pain, (on a daily basis for many of us)fatigue & loss. I was always a shy person..but now I have to bare my soul & sexual organs..talk of my bodily functions all the time. It is a disease full of indignity & has disabled me.
endometriosis is a frightening,debilitating beast which has taken away much of my life. I,like many, was misdiagnosed (& doubted for much of a decade), whilst the disease was running rampant inside me. We are met with prejudice & made to feel neurotic when the truth is we experience unbelievable pain, (on a daily basis for many of us)fatigue & loss. I was always a shy person..but now I have to bare my soul & sexual organs..talk of my bodily functions all the time. It is a disease full of indignity & has disabled me.
# 620:
1:51 pm PDT, Oct 14,
Leigh Ann Wilkinson, New York
I was diagnosed with endometriosis at age 35 - after having three beautiful children. I suffered, however, for 17 years before a diagnosis. Unfortunately, that was 10 years ago that I had a partial hysterectomy only to be in pain again 7 years later and had to have a right oopherectomy. At this point, I was told that I would be fine. Well, in May, 2009 I had to have another surgery due to the large cysts and the pain. Well, here it is Oct. 2009 and I am in pain again with another large cysts. The public and especially the medical community need to be made aware that the traditional treatments don't work. I can't get to a specialist because of insurance and I don't know what I am going to do, but please help OPRAH!
I was diagnosed with endometriosis at age 35 - after having three beautiful children. I suffered, however, for 17 years before a diagnosis. Unfortunately, that was 10 years ago that I had a partial hysterectomy only to be in pain again 7 years later and had to have a right oopherectomy. At this point, I was told that I would be fine. Well, in May, 2009 I had to have another surgery due to the large cysts and the pain. Well, here it is Oct. 2009 and I am in pain again with another large cysts. The public and especially the medical community need to be made aware that the traditional treatments don't work. I can't get to a specialist because of insurance and I don't know what I am going to do, but please help OPRAH!
# 619:
7:55 pm PDT, Oct 12,
Jennifer Dickenman, New Mexico
I was misdiagnosed for endometriosis even though I complained about the severe pain for years! The doctors always blew me off, and none of them even bothered to do an ultrasound! My endometriosis was finally discovered by a Urologist who did an ultrasound and discovered a huge mass on my left ovary crushing my left ureter. By this time I was already in Stage iV Endometriosis! In the past year and a half I have had a total hysterectomy, and a second mojor surgery three months ago to remove more endometriosis that was growing into my colon. They removed part f my colon, my kidney and my appendix! This could have all been prevented if one of those careless gynecologists would have taken the time to listen and give me an ultrasound!!! I'm angry! I'm 32 and I cannot have children, and my life has been forever changed by the colon and kidney removal.I am taking breast cancer medication to prevent my body from producing estrogen. This should NEVER have gotten this far. Please make Endometriosis a topic of your show. It is such a misunderstood disease that affects so may women. There is no cure for this disease and bringing awareness to it may prevent another young woman from ending up like me.
I was misdiagnosed for endometriosis even though I complained about the severe pain for years! The doctors always blew me off, and none of them even bothered to do an ultrasound! My endometriosis was finally discovered by a Urologist who did an ultrasound and discovered a huge mass on my left ovary crushing my left ureter. By this time I was already in Stage iV Endometriosis! In the past year and a half I have had a total hysterectomy, and a second mojor surgery three months ago to remove more endometriosis that was growing into my colon. They removed part f my colon, my kidney and my appendix! This could have all been prevented if one of those careless gynecologists would have taken the time to listen and give me an ultrasound!!! I'm angry! I'm 32 and I cannot have children, and my life has been forever changed by the colon and kidney removal.I am taking breast cancer medication to prevent my body from producing estrogen. This should NEVER have gotten this far. Please make Endometriosis a topic of your show. It is such a misunderstood disease that affects so may women. There is no cure for this disease and bringing awareness to it may prevent another young woman from ending up like me.
# 618:
6:40 am PDT, Oct 12,
Name not displayed, Minnesota
Dear Oprah, We're asking you to do a show on Endometriosis because so many women are fighting this disease and there is not enough information available. Women are misdiagnosed on a daily basis, by doctors that are supposed to help us out. We have resorted to diagnosing ourselves with the aid of medical websites. I am young (with a husband) and we are striving to have a baby of our own, I'm afraid that everyday that passes that dream becomes more out of reach. Women of all ages suffer from this. We need to join together to educate and spread the awareness, we need to find a cure. Our families should not have to sit on the sidelines watch us suffer for more than we already have. Oprah, many people watch your show and believe in the topics that you share--Endometriosis should be one of them. Please raise awareness so this disease is not overlooked any longer. I am hoping that you will join us and be a helping hand in raising awareness about this terrible disease.
Dear Oprah, We're asking you to do a show on Endometriosis because so many women are fighting this disease and there is not enough information available. Women are misdiagnosed on a daily basis, by doctors that are supposed to help us out. We have resorted to diagnosing ourselves with the aid of medical websites. I am young (with a husband) and we are striving to have a baby of our own, I'm afraid that everyday that passes that dream becomes more out of reach. Women of all ages suffer from this. We need to join together to educate and spread the awareness, we need to find a cure. Our families should not have to sit on the sidelines watch us suffer for more than we already have. Oprah, many people watch your show and believe in the topics that you share--Endometriosis should be one of them. Please raise awareness so this disease is not overlooked any longer. I am hoping that you will join us and be a helping hand in raising awareness about this terrible disease.
# 617:
11:29 pm PDT, Oct 11,
Angela Federici, Illinois
Dear Oprah, I was just diagnosed with Endometriosis and had to practically fight and research for myself to get the doctors to figure out what was wrong with me. I have probably had this disease for years and it went untraced. People do not understand the pain that we deal with daily. This disease will not kill us, it may make us stronger but how much of life do we have to waste because there is no cure for this painful life changing disease. I am 27 and scared to death I will never be able to have a child and that to me is no life at all. Please help by making people aware of this horrible disease! Thank you!!!
Dear Oprah, I was just diagnosed with Endometriosis and had to practically fight and research for myself to get the doctors to figure out what was wrong with me. I have probably had this disease for years and it went untraced. People do not understand the pain that we deal with daily. This disease will not kill us, it may make us stronger but how much of life do we have to waste because there is no cure for this painful life changing disease. I am 27 and scared to death I will never be able to have a child and that to me is no life at all. Please help by making people aware of this horrible disease! Thank you!!!
# 616:
8:59 pm PDT, Oct 11,
Beckie MacDonell, Nebraska
I was diagnosed with endometriosis via laparoscopy approximately two years ago. I had been seeking treatment for infertility issues in which my gynecologist recommended laparoscopic surgery to remove a fibroid from my uterus. During that procedure extensive endometriosis was discovered. At that point in time I had little to no understanding of this disease and the effects it can have on the female body. Over the course of the last two years I have acquired first-hand knowledge, unfortunately through experience, as to the pain and complications this disease can cause. Since I was rather uneducated with regard to endometriosis and very trusting of my physician, who is well respected in the treatment of fertility issues, I went forward with the recommended treatment plan. All visible signs of the endometriosis were treated with a laser and I was put on hormone suppression therapy. After the hormone suppression treatment was completed, I felt great for about six months. At that time, I began to experience the true wrath of this disease. I had always had pain with my menstration, but I began to experience pain with my monthly cycles that was increasingly worse with each passing month. In addition, the bleeding was so heavy that often times I wondered if I needed to go to the emergency room because I had lost so much blood. I would inevitable miss a day or two of work each month because I could not function in my job while on prescription pain medicine. When I did not take the strong pain relievers, I could not sleep and most days I couldn’t get out of bed. It was a cycle that I had to end. As a vibrant young woman, I felt trapped in a life I was not prepared to lead. After a second round of hormone suppression therapy and a recommendation for a hysterectomy by my trusted physician, I finally took control of this situation and sought different medical opinions as to the treatment of my disease. I did hours and hours of research on the internet to try and find a specialist covered by my insurance plan to help me overcome this disease. What I found, is that very few specialists exist for the treatment of endometriosis, especially severe cases like mine. I sought opinions from four different specialists, three of which chose the standard of care: hysterectomy. For me, this was not a viable option for a couple reasons. First of all, I could not understand why they would chose to remove a healthy organ from my body in order to treat a disease that was affecting areas outside of this organ. By this point in time, I was experiencing severe constipation and terrible back pain in addition to my previously mentioned symptoms. A hysterectomy would only put my body in a state of permanent hormone suppression. These doctors were just masking the problem. Secondly, I do not have any children and I really was not prepared to give up on this dream. I chose the fourth physician for my medical care. He is the only physician I consulted who was willing to treat the problem, not just cover it up. He has a strong success rate in the treatment of endometriosis. He also performed a laparoscopy on me and discovered that the endometriosis had progressed to the most severe state, stage IV, and had effect my bowel, intestine, bladder, and severely scarred my uterus to my abdominal cavity wall. In addition, he is the only physician I consulted who was not contracted with my insurance company. I had to make a choice between a treatment plan I believe in and one in which I did not have a lot of faith. I understand endometriosis is not a disease with a cure, but I at least wanted the best shot at a normal life. I have even resigned myself to not bearing a child. I just want to feel normal and to live without pain. This is a choice I feel I should have. In addition, I want other women who are suffering this plight, to have the opportunity to choose their method of care. I want to prevent them from suffering the additional pain of fighting for insurance coverage for this medical condition. Contrary to popular belief, these severe cases are not infertility issues, they are medical issues and should be treated as such. I know these women are in enough pain as it is. I want to change the standard of care from covering up this disease, to treating it. I feel as though this standard of care has been dictated by the insurance company and now has affected our medical teachings. Many physicians shy away from treating the disease through proven methods because they cannot get paid for their services. The most proven and effective way to treat endometriosis is through excision surgery in which the scar tissue and endometrial lesions are cut out along with all affected tissue and then the excised areas are reconstructed. This type of surgery can take hours to complete. In my case it took two surgeons over six hours to remove all of the adhesions. It is my belief that more physicians would opt for the excision removal treatment, in severe cases such as mine, if insurance coverage was available for their services. Until this coverage is available, treatment for severe endometriosis will continue to be sub-par. The treatment standard will continue to be a hysterectomy. The true depth of this disease will continue to be ignored and the treatments will continue to be sub-par. It is my desire to change this situation and I would like you to assist me with this. You are one of the most influential women in the world and a true champion of women's causes. As endometriosis affects millions of women world-wide it is unfathomable to me that treatment continues to suffer based on insurance coverage and lack of knowledge amoung the medical community. As we all know, money is a very strong driving force, one that all too often dictates our choices in life. I am hoping that you will join me and provide guidance as to finding a resolution to this issue.
I was diagnosed with endometriosis via laparoscopy approximately two years ago. I had been seeking treatment for infertility issues in which my gynecologist recommended laparoscopic surgery to remove a fibroid from my uterus. During that procedure extensive endometriosis was discovered. At that point in time I had little to no understanding of this disease and the effects it can have on the female body. Over the course of the last two years I have acquired first-hand knowledge, unfortunately through experience, as to the pain and complications this disease can cause. Since I was rather uneducated with regard to endometriosis and very trusting of my physician, who is well respected in the treatment of fertility issues, I went forward with the recommended treatment plan. All visible signs of the endometriosis were treated with a laser and I was put on hormone suppression therapy. After the hormone suppression treatment was completed, I felt great for about six months. At that time, I began to experience the true wrath of this disease. I had always had pain with my menstration, but I began to experience pain with my monthly cycles that was increasingly worse with each passing month. In addition, the bleeding was so heavy that often times I wondered if I needed to go to the emergency room because I had lost so much blood. I would inevitable miss a day or two of work each month because I could not function in my job while on prescription pain medicine. When I did not take the strong pain relievers, I could not sleep and most days I couldn’t get out of bed. It was a cycle that I had to end. As a vibrant young woman, I felt trapped in a life I was not prepared to lead. After a second round of hormone suppression therapy and a recommendation for a hysterectomy by my trusted physician, I finally took control of this situation and sought different medical opinions as to the treatment of my disease. I did hours and hours of research on the internet to try and find a specialist covered by my insurance plan to help me overcome this disease. What I found, is that very few specialists exist for the treatment of endometriosis, especially severe cases like mine. I sought opinions from four different specialists, three of which chose the standard of care: hysterectomy. For me, this was not a viable option for a couple reasons. First of all, I could not understand why they would chose to remove a healthy organ from my body in order to treat a disease that was affecting areas outside of this organ. By this point in time, I was experiencing severe constipation and terrible back pain in addition to my previously mentioned symptoms. A hysterectomy would only put my body in a state of permanent hormone suppression. These doctors were just masking the problem. Secondly, I do not have any children and I really was not prepared to give up on this dream. I chose the fourth physician for my medical care. He is the only physician I consulted who was willing to treat the problem, not just cover it up. He has a strong success rate in the treatment of endometriosis. He also performed a laparoscopy on me and discovered that the endometriosis had progressed to the most severe state, stage IV, and had effect my bowel, intestine, bladder, and severely scarred my uterus to my abdominal cavity wall. In addition, he is the only physician I consulted who was not contracted with my insurance company. I had to make a choice between a treatment plan I believe in and one in which I did not have a lot of faith. I understand endometriosis is not a disease with a cure, but I at least wanted the best shot at a normal life. I have even resigned myself to not bearing a child. I just want to feel normal and to live without pain. This is a choice I feel I should have. In addition, I want other women who are suffering this plight, to have the opportunity to choose their method of care. I want to prevent them from suffering the additional pain of fighting for insurance coverage for this medical condition. Contrary to popular belief, these severe cases are not infertility issues, they are medical issues and should be treated as such. I know these women are in enough pain as it is. I want to change the standard of care from covering up this disease, to treating it. I feel as though this standard of care has been dictated by the insurance company and now has affected our medical teachings. Many physicians shy away from treating the disease through proven methods because they cannot get paid for their services. The most proven and effective way to treat endometriosis is through excision surgery in which the scar tissue and endometrial lesions are cut out along with all affected tissue and then the excised areas are reconstructed. This type of surgery can take hours to complete. In my case it took two surgeons over six hours to remove all of the adhesions. It is my belief that more physicians would opt for the excision removal treatment, in severe cases such as mine, if insurance coverage was available for their services. Until this coverage is available, treatment for severe endometriosis will continue to be sub-par. The treatment standard will continue to be a hysterectomy. The true depth of this disease will continue to be ignored and the treatments will continue to be sub-par. It is my desire to change this situation and I would like you to assist me with this. You are one of the most influential women in the world and a true champion of women's causes. As endometriosis affects millions of women world-wide it is unfathomable to me that treatment continues to suffer based on insurance coverage and lack of knowledge amoung the medical community. As we all know, money is a very strong driving force, one that all too often dictates our choices in life. I am hoping that you will join me and provide guidance as to finding a resolution to this issue.
# 615:
3:20 am PDT, Oct 11,
Mechelle Perigo, Pennsylvania
# 614:
3:02 am PDT, Oct 11,
Name not displayed, Utah
Dear Oprah, Breast Cancer awareness started in 1985. We have done tests that greatly reduce the number of women who have breast cancer. There are those of us who support it, because our mothers have died due to the disease, our aunts, our grandmothers, sisters, cousins, you name it. The only reason Susan G. Komen is such a big organization, is because in order to get the hint across, someone had to do something about it and to increase awareness around the world for those other women who have SURVIVED because they caught it early enough. I believe that Stephanie St. James is increasing the awareness for endometriosis, in hopes that other women will recognise symptoms, that doctors won't give false information on tests, that doctors can diagnose early on if women/teenage women, have this disease so that they may lead normal healthy lives. I am only 26. I am facing the realization that I will never have a child. I had my first endometriosis surgery when I was 23, and have not been able to get another one due to the economy due to not having a job, and not being able to get medicaid to help me pay for my surgery. A surgery without insurance is almost $500 dollars. $500 dollars that I don't even have to feed myself with. I ache every day, hoping that it will just go away, and yet I endure the pain because that's the only way I can get through the day. I have been diagnosed with bladder infections and or irritable bowel syndrome when I have gone to the doctor and not ONE has done tests or anything to see if I have had endometriosis, to see how severe it is. All they care about is giving you hormones, sending you on your way and hope that you will have a nice life. Again, I am 26 years old. I have never had a child. I won't be able TO have a child, due to the fact that I may have to get a hysterectomy in order for the pain to stop. Please help us find a cure, or at least increase awareness so that we can better understand this disease. In all retrospect, this SHOULD be test number two, right after breast cancer. Endometriosis should be JUST as important to us who suffer every day, going to work, in pain and not being able to do anything about it, as to those who have breast cancer or who have HAD breast cancer and who have overcome the disease and who have been given the access and means of support given through charitys, foundations, etc. Please help other women recognise this disease, and be able to give them help before it's too late for them. Thank you, A
Dear Oprah, Breast Cancer awareness started in 1985. We have done tests that greatly reduce the number of women who have breast cancer. There are those of us who support it, because our mothers have died due to the disease, our aunts, our grandmothers, sisters, cousins, you name it. The only reason Susan G. Komen is such a big organization, is because in order to get the hint across, someone had to do something about it and to increase awareness around the world for those other women who have SURVIVED because they caught it early enough. I believe that Stephanie St. James is increasing the awareness for endometriosis, in hopes that other women will recognise symptoms, that doctors won't give false information on tests, that doctors can diagnose early on if women/teenage women, have this disease so that they may lead normal healthy lives. I am only 26. I am facing the realization that I will never have a child. I had my first endometriosis surgery when I was 23, and have not been able to get another one due to the economy due to not having a job, and not being able to get medicaid to help me pay for my surgery. A surgery without insurance is almost $500 dollars. $500 dollars that I don't even have to feed myself with. I ache every day, hoping that it will just go away, and yet I endure the pain because that's the only way I can get through the day. I have been diagnosed with bladder infections and or irritable bowel syndrome when I have gone to the doctor and not ONE has done tests or anything to see if I have had endometriosis, to see how severe it is. All they care about is giving you hormones, sending you on your way and hope that you will have a nice life. Again, I am 26 years old. I have never had a child. I won't be able TO have a child, due to the fact that I may have to get a hysterectomy in order for the pain to stop. Please help us find a cure, or at least increase awareness so that we can better understand this disease. In all retrospect, this SHOULD be test number two, right after breast cancer. Endometriosis should be JUST as important to us who suffer every day, going to work, in pain and not being able to do anything about it, as to those who have breast cancer or who have HAD breast cancer and who have overcome the disease and who have been given the access and means of support given through charitys, foundations, etc. Please help other women recognise this disease, and be able to give them help before it's too late for them. Thank you, A
# 613:
12:30 am PDT, Oct 6,
Katie Roberts, Texas
# 612:
9:16 pm PDT, Oct 5,
Steve Tucker, Arizona
# 611:
8:26 am PDT, Oct 3,
Julee Neal, Arizona
# 610:
9:40 pm PDT, Oct 2,
Sarah Newby, Arizona
# 608:
|
12:04 pm PDT, Oct 1,
Michelle Gulizio, Florida
I have endometriosis, I was diagnosised in 96, and had my first lap, was on yazmine for about 7 years that help with my pain and bad periods then all of suddenly, the past year I was experiencing worsening periods and pain that occured two weeks prior to menses. I went to three different obgyn one NP said I had vaginitis gave me levaquine and put me on effexor even after I told her that I had endometriosis, I didnt have vaginitis, and the effexor put gave me sever side effects after first dose hr 170. Than I found a new OBGYN in my area, told her my problems, she said to have a lap and I was due for one. Well she examined me and told me she could feel the cyst on my rt ovary and scheduled me for surgery the following week. Well I had gotton my period went to work and that large cyst ruptured. I left work in sever pain went to her office and she said I shouldnt have come there but go straight to the er, anyways she put me into the hospital performed a lap the next day and she told my family it was the worst case she has ever seen and I had soo much blood in my abd cavity and the endo was everywhere all over my organs and abdominal wall but she only consentrated from the belly botton down. She removed six cyst on my rt and 3 on my lf ovary, then cut muscle and nerves for I had adhessions all over my bowel bladder and uriters. I did well after surgery went home and did all the walking I could do because I knew the gas build up could cause lots of pain. Well it took me 16 hours to pee. The second night I passed out while urinating from the pain, I had sever thrush and couldnt have a bowel movement with out screaming my head off. For a whole week straight I call the doctor r/t pain and no call back finally my mother called and demanded I get attention, The doctor called back and said there is nothing she could do and for me to go to the ER. I then decided not to and go to my primary doc becuz I am a nurse and know how the er works and i didnt want iv drugs but to find out what is wrong. Well my primary put me on cipro for bladder infection and it helped, I then had my 2 week follow up with her and she told me I didnt have a bladder infection, I have endometriosis and will have pain for the rest of my life, I told her I didn't have pain like this only for like a day or two during menses and she said well get used to it and dont call her for pain becuz she did the surgery cut my sacral nerve and I should be in the pain I was describing. Well she sent me a certified letter one week later telling me that she can no longer be my md. I cried I was like what did I do, I didnt ask for anything and looked to her for support. I then went to a specialist thats an hour away, they put me on Argestin a progesterone , which stops menses all together but not as strong as being on lupron,(which I didnt want anyways) I have been calling them and telling them weeklly about my pain and they said I would be in pain for 2-3 mths experience hot flashes due to surgery and meds but to do acuipuncture for pain take cataflan and learn to deal with it, I have endometriosis and many people with endometrisosis are drug seeking. I told her I am not I am looking for drugs but answers because I didnt hurt like this prior to surgery and my life has crumbled where its hard to work and I cant do any of the activities I onced enjoyed even normal daily activities. I am a RN that works in open heart recovery and a flight nurse. I have not been able to work as a flight nurse because I cant tolerate sitting for long periods of time and when I get an attack I wouildnt Know what to do. She told me to see my primary or go to the er for pain meds then. Like omg I cant find anyone in the tampa bay area to help me. This disorder is serious and I have delt with this for 13 yrs and now when I need help I get the door slammed in my face. The only one who seems to care is my primary in which he told me he is certified in acuipuncture and its only a placebo and dosn't recommend it for my condition. He believes me and told me to go 200 miles or more if I have to find someone that can give me the answers or at least help me find the answers and take another invasive look at me. I have done so much research on this over the years, and the research has improved however medical professionals are not always up on new research as I know or even if they say they specialize in treating a disorder or disease does not make them a specialist. I have made arrangement to go to the Cleveland Clinic in Weston Florida were my primary md refered me to. I am not looking to be a ginny pig but I honestly feel that there was a mistake during this past surgery or she did not remove all the endometriosis. Why else would she had fired me 1 week after my follow up. This is a debilitating disease and needs to be addressed to women all over the world who suffer from this. There is no quick fix it must be aggressivly approached, it spreads like a cancer and can even grow in other organs after hysterectomy because when an implant grows on other organs it creates its own estrogen and causes further complications. I cant stress how important this topic is to be discussed examined and reviewed by all memebers of our global society. If Oprah or Dr. OZ talks people listen, even health care professionals. ANother factor is that this disease debilitates financially related to limit of access to health care and limit to cost of benifit allowed to the individual. I am a dedicated hard working nurse that has been healthy all my life and now when I need my insurance there is a limit to what I can use and for how long. I have to continue to work while being in pain even on pain meds in order to keep coverage and enough sick time inbetween surgeries which is not good for my body in the healing process. Thank you and I hope the message get there. :) God Bless |
# 607:
9:44 am PDT, Sep 28,
Name not displayed, Illinois
# 606:
9:58 am PDT, Sep 27,
Susan D, New York
Endo is an awful disease that many women face with very little recognition or support. The actual pain is horrible and debilitating but the emotional pain of people not understanding (or worse, not believing) it what truly crushes your spirit. I am 30 year old former prosecutor with an amazing family and a wonderful husband. Despite that , I spent much of the past 10 years feeling completely alone and scared. Endo has taken so much from me, especially in the past year, that my only wish is to increase awareness. No one should have to feel alone or that they are crazy. Please help bring this condition to light, we need to increase awareness and understanding.
Endo is an awful disease that many women face with very little recognition or support. The actual pain is horrible and debilitating but the emotional pain of people not understanding (or worse, not believing) it what truly crushes your spirit. I am 30 year old former prosecutor with an amazing family and a wonderful husband. Despite that , I spent much of the past 10 years feeling completely alone and scared. Endo has taken so much from me, especially in the past year, that my only wish is to increase awareness. No one should have to feel alone or that they are crazy. Please help bring this condition to light, we need to increase awareness and understanding.
# 604:
6:16 pm PDT, Sep 25,
Patricia Jule, New Jersey
# 603:
11:17 pm PDT, Sep 24,
S G, Australia
Hi Opera Your shows make a great impact, and endometriosis needs that kind of attention to be rooted out or atleast genarate awareness about how the patients suffer. I have noticed most people can't understand why a patient keeps complaining about pain and sometimes think it is just being hyped up. Some people even make fun. I would appreciate a show on this matter.
Hi Opera Your shows make a great impact, and endometriosis needs that kind of attention to be rooted out or atleast genarate awareness about how the patients suffer. I have noticed most people can't understand why a patient keeps complaining about pain and sometimes think it is just being hyped up. Some people even make fun. I would appreciate a show on this matter.
# 602:
10:27 am PDT, Sep 23,
Ashley Oliver, South Carolina
Endometriosis is something that needs more recognition! This is a painful and difficult disease to manage. I am still young with one child and am faced with having more children or a hysterectomy. Which at the time, I want neither! This disease affects my life in so many ways that others could not begin to understand! And the diagnosis took over 10 years to get! After being told I was a person looking to get hooked on pain meds and such - when they couldn't possibly understand the severity of the pain I was suffering. When it flares up - If I am lucky and can make it to the bathroom, I will be in a tub of hot water ALL day. And even that doesn't help to the fullest. I am tired of people thinking that I am lazy, that I have no pain, and that I find excuses for things. MY PAIN IS REAL. IT AFFECTS MY LIFE!! If I could take it all away, I would.
Endometriosis is something that needs more recognition! This is a painful and difficult disease to manage. I am still young with one child and am faced with having more children or a hysterectomy. Which at the time, I want neither! This disease affects my life in so many ways that others could not begin to understand! And the diagnosis took over 10 years to get! After being told I was a person looking to get hooked on pain meds and such - when they couldn't possibly understand the severity of the pain I was suffering. When it flares up - If I am lucky and can make it to the bathroom, I will be in a tub of hot water ALL day. And even that doesn't help to the fullest. I am tired of people thinking that I am lazy, that I have no pain, and that I find excuses for things. MY PAIN IS REAL. IT AFFECTS MY LIFE!! If I could take it all away, I would.
# 601:
12:40 pm PDT, Sep 22,
Name not displayed, United Kingdom
