So no one else will suffer
Posted: Thursday, December 10, 2009 1:00 am
By Lisa Fipps managing editor
editor@kokomoperspective.com
Kristi An Rose suffered with endometriosis for 12 years, from 1997 until May 7, 2009 – the day she put a gun to her head and pulled the trigger.
It was a tragic ending of a life that held great promise, a life that is dearly missed, a life that could have been different if more in the medical community knew how debilitating the condition is, knew how much those with it suffer, and knew to take it more seriously, according to her mother, Sherill Rose Hill.
Nightmare begins
In school, Kristi was very outgoing. After graduating from Northwestern High School, she was a workaholic, said Sherill. Kristi worked several jobs and loved it. She always loved art, especially photography. But at the age of 17, she was already having medical problems.
“Kristi had really bad pains in her abdomen during her periods,” Sherill said. “It wasn’t your typical cramps. It was abnormal. I took her to a couple of doctors. They all said, ‘She’s a teenager trying to get attention.’ That wasn’t Kristi at all. I ended up taking her to Indianapolis to Dr. David McLaughlin of Women’s Specialty Health Centers. He said, ‘I think I know what’s wrong.’ He did a laparoscopy on Feb. 12, 1997. He said she had endometriosis. She was so thrilled to know what was going on because everybody had said she was making it up. She knew she wasn’t.”
Endometriosis “occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus – usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity,” according to the Endometriosis Association.
According to the Cleveland Clinic, symptoms of endometriosis can include but are not limited to the following:
•extremely painful (or disabling) menstrual cramps; pain may get worse over time
•chronic pelvic pain (includes lower back pain and pelvic pain)
•pain during or after sex
•intestinal pain
•painful bowel movements or painful urination during menstrual periods
•heavy menstrual periods
•premenstrual spotting or bleeding between periods
•infertility
A few months later, Kristi had a microlaser laparotomy to vaporize the endometriosis.
For the first time in years, she felt better. The pain was gone. She was happy. So was Sherill. It’s excruciating to watch your child in such pain, Kristi’s mom said.
But then the endometriosis came back.
“The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following surgery,” according to the Cleveland Clinic.
Kristi’s came back in less than a year. She had another surgery to vaporize more of the tissue. It returned again.
In October 2000, Kristi and Sherill flew to Oregon to see a specialist. That doctor performed an oophorectomy, removing her left ovary. They found out that her fallopian tubes were packed with eggs. The endometriosis had prevented them from dropping down to the uterus monthly. Some would ask why Kristi didn’t have a hysterectomy. Doctors were hesitant to do that considering how young she was, Sherill said.
Besides, a hysterectomy is not a cure. Currently, there is no cure for endometriosis. Even having a hysterectomy or removing the ovaries does not guarantee that the endometriosis areas and/or the symptoms of endometriosis will not come back.
After the surgery in Oregon, Kristi was still in pain. “That was a big let down,” Sherill said. “We thought it would be great. We thought it’d be all over.”
Kristi was in constant pain. Her mom searched the Internet trying to find someone who could help. In 2003, Kristi and Sherill headed to Birmingham, Ala., to see a specialist at the Chronic Pelvic Pain Treatment Center.
“When we drove there, we had big hopes,” Sherill said. “By the time we walked out of there, they’d diagnosed her with five different problems – all related to endometriosis.”
Severe pelvic congestive syndrome, vulvar vestibulitis, pelvic floor myalgia, irritable bowel syndrome, and abdominal wall trigger points.
Kristi also suffered from severe interstitial fibrosis of the bladder with chronic interstitial cystitis, a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.
The autopsy report gives a glimpse of just have pervasive the endometriosis was in Kristi’s body. It was on her liver. It was on her bowels. It was on her right kidney. Her right ovary had multiple cysts with large “chocolate cysts” (cysts that form when endometrial tissue invades an ovary), including one that had ruptured right before her death. Her fallopian tubes and right ovary had adhered to her uterus and pelvic wall. There were multiple fibrous pelvic adhesions.
“The doctor who did the autopsy said she had more endometriosis than anyone he’d ever seen,” Sherill said.
To say she was in pain is an understatement.
Kristi gave up. She was tired of doctors. She was tired of hospitals. She was tired of the pain.
In 2006, Sherill’s husband, Kristi’s stepfather, Mike Hill, developed cancer. Sherill was torn between helping her daughter who was suffering and her husband who was suffering.
“I told her, ‘We’re going to find something for you,’ ” Sherill said. She pleaded with her daughter to hang in there until they found someone who could help. By then Kristi had no insurance. Her mom and stepdad helped pay for her medical expenses. Kristi hated that. She was independent. She wanted to take care of herself.
On April 16, 2009, Mike Hill died.
“Kristi said, ‘Look at him. He’s at peace. I would love to be at peace,” Sherill said.
She began to worry about her daughter. She was sinking deeper and deeper into depression. A letter Kristi wrote on April 4 details her thoughts: “I am so tired of the pain. It is enough to drive someone crazy. Having constant pain all the time is enough to want to give up. Enough to want to put my fragile body to rest. My body can’t take any more. My brain is past the breaking point. My heart is broken. God, my heart is broken.”
“She was having grand mal seizures and pretty much bed-ridden then,” Sherill said of her daughter. “I got an uneasy feeling,” Sherill said. “So I hid the gun we kept in the house. Three days prior to her dying, she said, ‘I don’t want this anymore. They can’t fix me.’ I begged her. I said, ‘Please, let me see what I can find out. We’ll find something. She said no. ‘You’re not going to take me to another doctor, who will just take your money and say, ‘Well, we don’t know what else to do for her.’ ”
On May 7, 2009, Sherill was on her way home from a short trip to Kentucky and called her daughter.
“I told her I was almost home,” Sherill said, tears flowing down her cheeks. “She said, ‘I want you to remember one thing.’ I said, ‘What?’ She said, ‘I love you very, very, very, very, very, very, very, very, very, very much, Mom, and she just kept saying it. And I said I love you very, very, very much, too.’ ”
As Sherill drove home, Kristi searched the house and found the gun. She went outside to the back yard. She put the gun to her head. She pulled the trigger.
“When I got home, the police were in the yard,” Sherill said, sobbing. “I couldn’t pull into the driveway. My son, Tom, was there. I have another son, Michael. Tom had been in the house, and the neighbors came and got him. They said, ‘Your sister’s lying in the backyard.’ My son went out and got her. That’s just been very hard for him. He said, ‘I held her and she wasn’t talking.’ He said he kept thinking, ‘I gotta get this fixed before mom gets home.’ When I pulled up in the yard, as soon as I got out of the car, Tom grabbed a hold of me so tightly I could hardly breathe. He said, ‘Kristi shot herself.’ He held me so tight and he wouldn’t let go. I said, ‘Is she alive?’ He said, ‘Yes. They’re trying to get her stable.’ They wouldn’t let me go to the back yard. It seemed like forever and then they brought her to the front and put her in the ambulance. I yelled at her to fight like hell, and then we were on our way to the hospital. It wasn’t very long before they came out and said she didn’t make it. I said, ‘Can I see her?’ They let me see her, and when I looked at her I knew it was over for her. She suffered so much pain. Pain was a daily thing. The doctors didn’t take it as seriously as they could or should have.”
There was no funeral. Kristi had always said she wanted to be cremated. “I was with her every step of the way, I wasn’t going to let her go through that by herself,” Sherill said. “I’m not going to let her down now. I went down to Greenwood where they do it. I kissed her. I talked to her and then I watched as they took care of her.”
Sherill broke down in tears.
Her daughter killed herself 20 days after her husband died. Twenty days after her daughter’s suicide, Sherill had a dream. In it, Kristi was smiling, running, happy, free.
“That’s the one thing that’s kept me going because I know she’s not in pain anymore,” Sherill said, crying. “I’m just crying for myself now. I’m just so lonely I don’t know what to do with myself. I just don’t know what to do.”
What she has done, with her from her two sons, is have a fundraiser in Kristi’s memory, with the proceeds going to the Endometriosis Research Center.
“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”
To contact Sherill about the fundraiser, send an e-mail to endokristi [at] yahoo [dot] com
♥ www.geordannatheartist.com ♥
Costarican-American Visual Artist born in Houston, living in Dallas.
Friday, June 11, 2010
About Endometriosis
About Endometriosis
By Lone Hummelshoj | June 02, 2010
--------------------------------------------------------------------------------
We've just finished a month dedicated to women and mothers. In the U.S., we celebrated "National Women's Health Week" and before it Mother's Day. One study suggested Americans would spend a total of $14.6 billion in May alone to honor our mothers. And we should honor our mothers!
However, for millions of women with endometriosis, motherhood is elusive. In fact, an estimated 7.5 million women in the U.S. -- one in 10 -- are affected by endometriosis during their reproductive years.
Since endometriosis is one of the biggest causes of infertility, too many women will never experience the joy of motherhood -- and for them "Mother's Day" becomes a day of grieving for the children they never had.
It doesn't stop there. The chronic pelvic pain that so many women also experience -- every single day -- is limiting. Unfortunately, all of today's treatments have some degree of side effects and there is no known cure.
An average diagnostic delay of eight years, coupled with "hit and miss" treatments, has put the estimated cost of endometriosis to society at $22 billion a year. That is higher than the cost of migraine and Crohn's disease.
Furthermore, that amount does not account for a woman's personal costs, nor indirect costs such as not being able to go to work or school, or being less productive while there.
Yet there is a lack of funding for research into the underlying mechanisms of the disease -- research that could help us find a cure or even well-tolerated long-term treatments.
I worry that mismanagement in endometriosis is costing national healthcare systems billions of dollars unnecessarily. Dollars that could be spent more wisely in developing early and effective treatments -- with significant savings down the line. But my concern is not about healthcare systems alone.
I am concerned about the large proportion of women with endometriosis who have to take time off work every month either because of severe symptoms or because of doctors' appointments and treatment regimes.
I am concerned about the women with endometriosis who report reduced productivity at school and at work because of their painful symptoms.
These circumstances have a profound effect on society, but most certainly also on the women themselves, whose personal cost -- both financially and emotionally -- is substantial. The effect on relationships, especially when fertility becomes an issue, must not be underestimated either.
For decades I have advocated around the world to get endometriosis and its impact recognized, speaking to legislative leaders and at conferences. Just two weeks ago, I addressed these issues in New York City at the Endometriosis Foundation of America's first medical and scientific conference.
The attention at the meeting was great.
But we need a great deal more than medical conferences.
We need to collectively urge our governments to fund research that will significantly enhance awareness, reduce time to diagnosis, improve treatments, and ultimately find a cure for endometriosis.
Otherwise, this devastating illness will continue to rob millions of women of their quality of life during what should be the most active and productive time of their lives -- those precious years when they should be finishing their education, commencing a career, building relationships, and having children -- something too many will never experience!
I believe we have finally begun the kind of research that is needed to move forward.
As Chief Executive of the World Endometriosis Research Foundation (WERF), I have been working for the past year with 12 centers in 10 countries (including the U.S.) on the first-ever prospective study to assess the hidden costs of endometriosis (direct and indirect) to society and to women with the disease.
The EndoCost study has a goal to identify areas that can be addressed for improvement and subsequent reduction in cost from endometriosis, and we expect to publish our findings during the second half of 2010.
We hope the results will spur national governments to take endometriosis seriously and invest in research to prevent the next generation of women from having to suffer during the prime of their lives the way this generation has!
By Lone Hummelshoj | June 02, 2010
--------------------------------------------------------------------------------
We've just finished a month dedicated to women and mothers. In the U.S., we celebrated "National Women's Health Week" and before it Mother's Day. One study suggested Americans would spend a total of $14.6 billion in May alone to honor our mothers. And we should honor our mothers!
However, for millions of women with endometriosis, motherhood is elusive. In fact, an estimated 7.5 million women in the U.S. -- one in 10 -- are affected by endometriosis during their reproductive years.
Since endometriosis is one of the biggest causes of infertility, too many women will never experience the joy of motherhood -- and for them "Mother's Day" becomes a day of grieving for the children they never had.
It doesn't stop there. The chronic pelvic pain that so many women also experience -- every single day -- is limiting. Unfortunately, all of today's treatments have some degree of side effects and there is no known cure.
An average diagnostic delay of eight years, coupled with "hit and miss" treatments, has put the estimated cost of endometriosis to society at $22 billion a year. That is higher than the cost of migraine and Crohn's disease.
Furthermore, that amount does not account for a woman's personal costs, nor indirect costs such as not being able to go to work or school, or being less productive while there.
Yet there is a lack of funding for research into the underlying mechanisms of the disease -- research that could help us find a cure or even well-tolerated long-term treatments.
I worry that mismanagement in endometriosis is costing national healthcare systems billions of dollars unnecessarily. Dollars that could be spent more wisely in developing early and effective treatments -- with significant savings down the line. But my concern is not about healthcare systems alone.
I am concerned about the large proportion of women with endometriosis who have to take time off work every month either because of severe symptoms or because of doctors' appointments and treatment regimes.
I am concerned about the women with endometriosis who report reduced productivity at school and at work because of their painful symptoms.
These circumstances have a profound effect on society, but most certainly also on the women themselves, whose personal cost -- both financially and emotionally -- is substantial. The effect on relationships, especially when fertility becomes an issue, must not be underestimated either.
For decades I have advocated around the world to get endometriosis and its impact recognized, speaking to legislative leaders and at conferences. Just two weeks ago, I addressed these issues in New York City at the Endometriosis Foundation of America's first medical and scientific conference.
The attention at the meeting was great.
But we need a great deal more than medical conferences.
We need to collectively urge our governments to fund research that will significantly enhance awareness, reduce time to diagnosis, improve treatments, and ultimately find a cure for endometriosis.
Otherwise, this devastating illness will continue to rob millions of women of their quality of life during what should be the most active and productive time of their lives -- those precious years when they should be finishing their education, commencing a career, building relationships, and having children -- something too many will never experience!
I believe we have finally begun the kind of research that is needed to move forward.
As Chief Executive of the World Endometriosis Research Foundation (WERF), I have been working for the past year with 12 centers in 10 countries (including the U.S.) on the first-ever prospective study to assess the hidden costs of endometriosis (direct and indirect) to society and to women with the disease.
The EndoCost study has a goal to identify areas that can be addressed for improvement and subsequent reduction in cost from endometriosis, and we expect to publish our findings during the second half of 2010.
We hope the results will spur national governments to take endometriosis seriously and invest in research to prevent the next generation of women from having to suffer during the prime of their lives the way this generation has!
Wednesday, June 2, 2010
“THE LETTER FROM SURVIVORS” LIVING WITH ENDOMETRIOSIS
*original letter by Heather Guidone*
THIS LETTER IS FOR ALL OF US
Dear Parents, Partners, Friends, Families, Co-Workers, 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 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 capabilities.
We are not anti-social, dramatic, pessimistic, lazy, too tired, too crazy and 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 exhibit the disease in our every day 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 excrutiating pelvic pain, extreme fatigue, nausea, low grade fever, sharp intestinal pains and splitting headaches. 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?
Most, if not all women with Endometriosis (accompanied with the debilitating pain) also suffer from Chronic Fatigue Syndrome, severe digestive problems, infertility, allergies, a hormone imbalance, anxiety and depression. Did you know Endo is also believed to be an Autoimmune Deficiency Disease? Makes since now since we are easily susceptible to colds, flu’s, viruses. Some of these symptoms can be cyclical, meaning we can feel great for a few weeks out of the month but then are in agony the rest of the month. Some of these symptoms can be continuous
And to top all that off we have a special dairy-free, sugar-free, gluten-free, soy-free, caffeine-free, alcohol-free, red meat-free, pork-free diet we must adhere to. This surely makes us the life of the party! Imagine such a strict diet...we can never just grab something quick to eat, eat at the latest restaurants, or even take road trips and eat along the way…
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 Endo is a hormone imbalance. It’s because we are taking drug/hormone 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 defined cause or absolute cure.
When we can’t have intimate relations with our partners, it is not because we don’t love you or not want to. It’s because we can’t. It hurts too much. And we aren’t feeling very 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 did that, or at least the last time pain-free. We can’t have a nice time with our children because most of us can’t have them. Maybe 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 of passed this disease down through our blood into 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 we ever are. You are appreciated more than words can ever say.
DON’T GIVE UP ON US NOW.
To medical professionals, 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’s “normal for women 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 to 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 appointment, what surgery we are going to have next, and why we feel so sick all the time. This is not about us. Please try to remember what the term “friend” means. Please remember that friendship is a two-way street. If we don’t keep calling or reaching out to you ,we probably wouldn’t be friends anymore. Why don’t you reach out to us?
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 pain 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 we have been dealing with infertility for the last however many years). We in our 20s and 30s 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 the insurance companies don’t deem necessary, or worse, we deplete our savings because we 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 reason why.
ENDOMETRIOSIS IS A SERIOUS CHRONIC 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 pain killers that numb our suffering to a degree and become part of the living again.
Help us get rid of the xenoestrogens in our make up, lotion and beauty products!! Xenoestrogen feeds our disease.
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. We will not hide this any longer! This is nothing to be embarrassed about. We will shout this to all that will listen! This affects us all!
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, sister, friend, or family member you once knew?
THINK ABOUT IT.
______________
I added more of my own personal words so my family and friends could better relate but the original Letter was authored in 1997 by Heather Guidone<--- MY MENTOR This letter has been distributed around the world countless times and has reached nearly a million unique readers. It has been translated into other languages; shared extensively in patient communities; read to the crowd on the steps of the Lincoln Memorial in Washington, DC at the first annual EndoWalk for Awareness; been given to families, physicians, caregivers, spouses, friends and government officials; and it is currently used by advocacy organizations in the US, Europe and Australia to facilitate their efforts at raising awareness and validating those who live with the disease. The Letter is intended to give insight and understanding as to what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large. More importantly, this Letter is for all the Endosisters around the world who hold their heads high every day, *in spite of* Endometriosis.
THIS LETTER IS FOR ALL OF US
Dear Parents, Partners, Friends, Families, Co-Workers, 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 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 capabilities.
We are not anti-social, dramatic, pessimistic, lazy, too tired, too crazy and 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 exhibit the disease in our every day 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 excrutiating pelvic pain, extreme fatigue, nausea, low grade fever, sharp intestinal pains and splitting headaches. 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?
Most, if not all women with Endometriosis (accompanied with the debilitating pain) also suffer from Chronic Fatigue Syndrome, severe digestive problems, infertility, allergies, a hormone imbalance, anxiety and depression. Did you know Endo is also believed to be an Autoimmune Deficiency Disease? Makes since now since we are easily susceptible to colds, flu’s, viruses. Some of these symptoms can be cyclical, meaning we can feel great for a few weeks out of the month but then are in agony the rest of the month. Some of these symptoms can be continuous
And to top all that off we have a special dairy-free, sugar-free, gluten-free, soy-free, caffeine-free, alcohol-free, red meat-free, pork-free diet we must adhere to. This surely makes us the life of the party! Imagine such a strict diet...we can never just grab something quick to eat, eat at the latest restaurants, or even take road trips and eat along the way…
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 Endo is a hormone imbalance. It’s because we are taking drug/hormone 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 defined cause or absolute cure.
When we can’t have intimate relations with our partners, it is not because we don’t love you or not want to. It’s because we can’t. It hurts too much. And we aren’t feeling very 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 did that, or at least the last time pain-free. We can’t have a nice time with our children because most of us can’t have them. Maybe 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 of passed this disease down through our blood into 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 we ever are. You are appreciated more than words can ever say.
DON’T GIVE UP ON US NOW.
To medical professionals, 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’s “normal for women 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 to 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 appointment, what surgery we are going to have next, and why we feel so sick all the time. This is not about us. Please try to remember what the term “friend” means. Please remember that friendship is a two-way street. If we don’t keep calling or reaching out to you ,we probably wouldn’t be friends anymore. Why don’t you reach out to us?
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 pain 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 we have been dealing with infertility for the last however many years). We in our 20s and 30s 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 the insurance companies don’t deem necessary, or worse, we deplete our savings because we 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 reason why.
ENDOMETRIOSIS IS A SERIOUS CHRONIC 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 pain killers that numb our suffering to a degree and become part of the living again.
Help us get rid of the xenoestrogens in our make up, lotion and beauty products!! Xenoestrogen feeds our disease.
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. We will not hide this any longer! This is nothing to be embarrassed about. We will shout this to all that will listen! This affects us all!
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, sister, friend, or family member you once knew?
THINK ABOUT IT.
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I added more of my own personal words so my family and friends could better relate but the original Letter was authored in 1997 by Heather Guidone<--- MY MENTOR This letter has been distributed around the world countless times and has reached nearly a million unique readers. It has been translated into other languages; shared extensively in patient communities; read to the crowd on the steps of the Lincoln Memorial in Washington, DC at the first annual EndoWalk for Awareness; been given to families, physicians, caregivers, spouses, friends and government officials; and it is currently used by advocacy organizations in the US, Europe and Australia to facilitate their efforts at raising awareness and validating those who live with the disease. The Letter is intended to give insight and understanding as to what it is like to live with a chronic, painful illness that is under-treated, under-diagnosed and widely misunderstood – and perhaps, even, ignored - by society at large. More importantly, this Letter is for all the Endosisters around the world who hold their heads high every day, *in spite of* Endometriosis.
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