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9:38 am PST, Nov 18,
Jose Santiago, Pennsylvania
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11:19 pm PST, Nov 16,
Nicole Rodriguez, New York
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12:14 pm PST, Nov 12,
Elsie Gonzalez, New York
Dear Parents, Partners, Friends, Families, Employers & Doctors: We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking - again - for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities. We are not "lazy," we are not "whiners," we do not make the pain up "in our heads." We have Endometriosis. We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our every day appearance. 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 emotional well-being. When we call in sick, it's not because we need a mental health day or to "go shopping." It's because we can't get out of bed from the pain.Do you think we like letting our careers suffer? Would it be easier for you to understand if we said we had cancer and looked the part? When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are "flaky women." It is because we are taking drug therapies to stall this incurable disease, or perhaps it's 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 want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now. When you as our parents can't understand that since you are healthy, we should be too, but aren't - try harder. We don't understand it either. We need your support more than anyone's. When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place.Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our genetics onto our daughters? When you married us, you didn't know that we meant the "in sickness and in health" part literally, did you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of Endometriosis than even we are. You are appreciated more than words can ever say. Don't give up on us now. As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is "normal for a woman to hurt." Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We 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? We're not drug seeking; we are answer seeking. 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 get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means. Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with some days. We face a society daily that 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 "it's all in your head", and "have a hysterectomy, it will cure you", or "get pregnant, it will cure you", when we know that it won't and have been dealing with infertility for the last however many years. Can't you see that? We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves and travel thousands of miles to the rare specialists that are few and far between. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis is a disease that affects all of us. Take the time to learn about it and understand. 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, painfree life. We can have healthy relationships with our loved ones. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again. Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it. Whatever doesn't kill us makes us stronger, someone once said. While Endometriosis may not kill our physical body, it tries like hell to kill our spirit. It tries to kill 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...and we are holding our heads high in spite of Endometriosis and fighting it every single day. We are asking you to take part in that battle and work with us on beating it. Wouldn't it be nice to have back the daughter, wife, friend or loved one you once knew? Think about it. ~The Sentiments of Millions of Endometriosis Survivors Around the World~ |
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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 |
