Upcoming Surgery and the Feelings It Brings

Surgery is scheduled for Friday the 21st. I am unsure of the time yet, but I am nervous just the same. I am nervous for several reasons. First of all, I have not been billed for the surgery that I had last year. I don't want to get up there and them tell me that I owe all of this money and that I can't have the surgery unless I pay X amount of dollars up front. They are currently appealing my insurance's decision on how much they paid out. The bill was over $100 thousand dollars and insurance only paid like $16,000. That makes me very nervous. 

Another reason I am nervous is because this is going to be an extensive surgery. They are going to unadhere my uterus from my rectum before they can remove it. Now mind you, this uterus is being over run by adenomyosis (endometriosis that has penetrated the uterine muscle), and has proven to be not only useless, but extremely painful. Then they have to disconnect one of my ovaries from my bowel and take it out. The other ovary is (suspected to be) attached to my uterus, so don't know how that is going to work. Then there are all the other adhesions and endometriosis that he wasn't able to get during my last surgery due to the size and position of my uterus. There is so much that they expect to find this time, that it scares me a little. The first surgery that I had with Dr Dulemba they didn't expect to find very much. When he got in there he said that it was much worse than he had suspected. 

I am also nervous because I know that this needs to be done in order to have even a chance at some kind of a normal life. I also know that I feel like I am giving up. I will be 33 next month and I wanted to be a mother so badly. I wanted to make my husband a father. We are not rich people. My husband works very hard and we don't spend beyond our means, but still live paycheck to paycheck. I don't know if we will be able to adopt. I sometimes wonder why I can't be stronger and learn to deal with the pain a little better, so that maybe I won't feel like I have failed or given up on a very important dream. 

I know that I am not alone in the way that I feel. I know that I am not the only one that is about to have all of this done to me. If only none of us had to experience this. If only a cure could be found, then we wouldn't have to suffer needlessly or have to give up on the dream of having children. 

My surgery date is in 5 days. It is Sunday afternoon and I am sure that by this time Friday, I will be free of my uterus and ovaries. The hope is that it gives me enough relief so that I can start enjoying my life again. I can begin cleaning my house, and going grocery shopping, and most of all, having a relationship with my husband. The only reason that I have chosen this path is so that I can actually start living my life and enjoying the life that I was given with my husband. He has sacrificed so much of his life in order to take care of me. I would like to return the favor. He deserves that and so much more. The decision was not an easy one, but a necessary one none the less. I hope that these feelings of failure subside, but in the meantime, I will remember why I am doing this. I will remember that I am lucky to be blessed with an understanding spouse, a roof over my head, and a life worth living. 

Learning to smile

Today something happened that made me really think and appreciate what has been given to me. When living with endometriosis it is so easy to lose sight of what I am thankful for. It is easy to see all the things that I can't do and what endo has taken from me. I sit and feel guilty for not being able to clean my house the way I should, be affectionate with my husband, or even go to the store and walk around. I forget that there are many things in life that I can be happy about, even when I am hurting. 

So my husband and I were heading to Walmart, to get some groceries, and he said he was so happy to finally see a smile on my face again. It kind of hit me hard, like when you are punched in the gut and can't catch your breath. I realized in that moment, and I think even more as I am writing this, that I had let the Endo take away my joy. I used to make jokes, the kind of jokes that made normal conversation into something a little raunchy. I used to smile so big my cheeks would hurt. I grew up in not the best of circumstances and so I appreciate all of the little things. I am easily amused and it doesn't take much to thrill the life out of me. Somewhere I have forgotten to continue to be me. 

My husband has been the best thing that has ever happened to me. He does everything in his power to make me feel special, important, and loved. No one in my life has ever been so selfless when it comes to me. He puts me first and he is so understanding and kind when it comes to living with a wife that is so ill. 

I am soon going to be having a hysterectomy and having both ovaries removed, and he knows how much I am struggling with it. He knows I make jokes and when I am hurting I tell him that it can't get done fast enough, but I am having a hard time with the fact that I can't make him a daddy. We have a truck that is getting up there in miles and fter my surgery in April we had to travel 3 hours home in the truck and it hurt so bad. He kept apologizing for every bump he hit, and looked at me with such concern, it made me feel so bad for putting him through that. So, he came up with a solution, and he bought me a car. It is a 2011 Hyundai Sonata GLS and has so many bells and whistles, that I am giddy every time I figure something else out. On the way to get groceries he was happy because he had figured out a way to make me smile over and over again. He had figured out a way to make trips to the grocery store, to visit family, and trips to the doctor more comfortable. He got to see me smiling instead of crying and that brought him such joy. 

When we arrived home, we put away the groceries, and started cooking dinner. I told him thank you for everything that he does for me. I also apologized for not being a better wife and costing him so much money in the process. I told him that I feel so bad that I can't repay him for all he does for me. His response was exceptionally sweet. He told me that I do a lot and that I make him happy and that is enough for him. He asked me if he is understanding enough. I almost fell apart, but I held it together and told him that he was beyond understanding. My husband grabbed me and kissed me with such passion. He told me, without saying a word, how much he loves and appreciates me. He made me feel so special and loved.

I grew up thinking that I wasn't worth loving or sticking around for. I thought that there was something wrong with me, and I was told that regularly. I didn't know that someone could love me the way that I love them. I didn't know that sense of security or feeling like there was no better place than home. I truly didn't know that someone could love me just the way I am or that unconditional love truly existed. Today it was driven home how much I know, understand and feel all of those things. With a few simple words spoken by the person that has taught me so much, I realized that the endometriosis was taking more than it deserves. My husband deserves a wife that smiles, laughs, and makes him giggle when I twist what he says. 😊 He deserves a wife that finds reasons to smile, even on the days that I feel like doing anything but. I may not be able to do all the things I want for him, but I can learn to not let the endometriosis take away the things that make him so happy. 

Living with this illness is more than just trying at times. It can make me feel like there is no end to the pain and that there is not much more than I can take. It has taken my ability to have my husbands child, but I can't let it take away the relationship that I have waited my whole life for. I can't continue to let it take away the person that he fell for. In the year to come I am going to do my very best to show my husband that he gives me plenty of reasons to smile. I don't smile because he buys me things, I smile because he does everything in his power to help me live with endo. He tries his best to help me deal with the pain and figure out ways to ease it. I smile because he makes me feel like I am loved and wanted and there is no other feeling like that in the world. I smile because he has given me a place that truly is a home. I smile because he fights endometriosis right along beside me, hand in hand. I smile because he loves me enough to want to make me smile. 

I have a goal to not let the endo take away anymore than it already has. I won't let it continue to take away who I am. I will fight to raise awareness, to show my support, and to smile more often. I wish that everyone could be as blessed as I have been. As much as the endometriosis has taken, it has given me a lot too. I have been given a man that truly loves me and many sisters that support and understand me. I will look for the things that this illness has given me instead of focusing on what it has taken away. I hope that my endosisters and their friends and family can join me in matching this goal.💛   

 millionwomenmarch2014.org  dkbcrochetworks.com

Blogging For Endo: The Mental Impact #myendomarch

Living with endometriosis takes a toll in more ways than one. The physical aspects not only affect your physical well being, but it takes a toll on your mental well being as well. I know that I apologize nearly everyday for being a poor wife. I get really depressed because my husband has to pick up so much of the slack. Now mind you, it is slack that he wouldn't have to pick up,if it weren't for me having endometriosis. I feel so guilty that I am so "lazy", though I know that laziness is not the issue. If I could get up and do the laundry, dishes, or vaccuum, I would do it in a heartbeat. Knowing the truth, or the reality, doesn't make it any easier to comprehend or cope with. 

I have been diagnosed with severe anxiety. I know that my endo has something to do with that diagnosis because when you live in such severe pain, it is hard to stay mentally stable. I worry about everything. It is hard to control random thoughts and cope with the consequences of those thoughts. It is extremely hard to make a plan, and stick to it, because every time you make a plan, endo has a different plan set for the day. 

The lack of sleep can also take a toll on your mental well being. I know that I have a really hard time going to sleep. If it isn't the pain keeping me up, it is the thoughts of all the things that I need to get accomplished. Without sleep, your body and mind can't reboot. It slows your thought processes and makes it hard to concentrate. I may not be able to keep my mind on one crochet project at a time, so I do several to keep myself from getting so frustrated. 

The feelings of guilt, loneliness, laziness, pain, and frustration at the situation, takes a toll on all of us. We all have those times that we feel alone and like we can't handle what is being fed to us. We all suffer times of weakness and mental breakdown. We have to remember that we are not alone, no matter how much we feel like we are. We are doing the best that we can, though we feel like we don't get much accomplished. We shouldn't feel guilty for having an illness that takes so much away from us, though I know that is easier said than done. We need to give ourselves a little bit of a break when we are frustrated. Living with endometriosis is not easy, fun, or even bearable most days. We are going to react to our situation and take it out on the people around us. As long as you can catch yourself when reacting to life and apologize for being a "witch", than the people that love you will understand. We all have moments of weakness and that is fine, because we fight like girls! The fight is an everyday battle and no onoe can battle everyday with out a slip or two. 

The mental toll that endometriosis can take on us and our families is almost as significant as the illness itself. We are all strong and we have each other to lean on. We CAN fight this and we WILL prevail one day. When you feel like falling apart, remember you are not alone. Remember that there is someone else out there that is going through the same thing you are and will understand. I remeber that the search for a cure is on going and that is what helps me on the days that I feel like endo is getting the best of me. We will get there one day. 

The #EndoMarch2014 will help us get there! Please remember to go to their website and help us spread awareness about endometriosis. www.millionwomenmarch2014.org 

             

EndoMarch2014

There is a movement to raise awareness about endometriosis and other chronic pelvic issues, on March 13, 2013 all around the world. I am so excited to help spread the word about the EndoMarch2014! The goals of the march are all areas that need attention when it comes to this illness. I will lay out my understanding of the goals and what I think of each one.

The Endo March wants to unite women that suffer from endometriosis and their families and friends. We all know that living with this illness can be trying, to put it politely, at times. As hard as it is for us to live with and through, it can be just as hard for those that love us to watch. The march wants to make sure that we can all meet and find the support that we need. I must say that the march is already accomplishing that goal. Since I found out about the EndoMarch, I have found so many #endosisters and I couldn't be happier about that. It is comforting to know that I am not the only one that has the feelings and fears, and that I will find the support that I need when I feel like I am losing the fight. I am thankful to the EndoMarch for providing me with an avenue to meet and befriend other women that are just like me. This is a goal that will definitely help many of us stay the course and keep fighting

Another goal is to give endo sufferers and their friends and family the ability to speak up and out about endometriosis. If it weren't for this march, I would not have met some special women that encouraged me to write a blog. I keep to myself, due to my illness, and haven't had the courage to speak out about the issues that I have, while trying to live life with endometriosis. I have always been made to feel like it was my issue and I shouldn't speak about it. I know many women that have dealt with the same feelings and the EndoMarch has given many of us the confidence and knowledge to know that it is not just in our heads and it is a real disease, that deserves real attention. 

Another goal is to educate more people about endometriosis and the effects that it has on girls of all ages and their friends and families. If we could educate schools, the courts, and people in general, then maybe women wouldn't continue to get disciplined for things that they have no control over. One way to educate more people is to have public service announcements . You see public service announcements about bullying, diabetes, breast cancer, and so much more. Endometriosis affects more women than breast cancer does and yet it doesn't get the same attention. It is said that you can't die from endometriosis, but that is not true, and I think that is worth bringing attention to. The endometriosis alone may not be lethal, but the side effects and complications from having it can be detrimental to a sufferers health. The mental toll that endo can take is known to cause suicidal thoughts and actions. Dealing with endo can also cause severe anxiety in a large amount of sufferers. I suffer from severe anxiety and it plays a definite part in my mental health while trying to live with and understand how to deal with my illness. I think that public service announcements would shed some light on the real difficulties that women have to endure while living with endometriosis. 

The medical community has an amazing lack of education and understanding of endometriosis. I personally have experienced the lack of education and understanding. I went to a female gynecologist, in February of last year, that told me that I was "normal" and that I was having "regular" cramping, just like many other women experience. I had brought my post op report to show her that I had Stage 4 endometriosis, and she still had no sympathy or understanding of what I was going through. She wrote me a year's prescription of Aleve and sent me home. My husband and I discussed the doctor's visit and we were both disgusted at the lack of understanding of what I was going through. I cried because I didn't think that I was going to get the help that I desperately needed. I luckily found a support group that referred me to Dr. John Dulemba, an endometriosis specialist. Come to find out, I was far from normal. I had one big mass of organs in my abdomen, had advanced stage 4 endometriosis, and adenomyosis. If there was more education about endometriosis and its symptoms, then maybe there would be fewer stories like mine and more stories of women getting the help that could save their lives. Along with education of the medical community, the hope is that there will be more dedication to finding a cure. If it is known that so many women suffer from this illness, and the toll that it takes on so many people, then maybe someone with medical knowledge will be motivated to hunt down a cure. There are many medical professionals dedicating their lives to finding a cure for cancer, diabetes, ALS, and so much more. We need more searching for a cure to the illnesses that have been affecting millions of women for far too long. 

The only way to diagnose and treat endometriosis is to have surgery. Surgery is invasive and can cause other complications, including death. There should be other ways to diagnose this illness if nothing else. Another goal of the EndoMarch is to find non-invasive diagnostic tests and improve health screenings for girls and young women in school. There are many chronic pelvic conditions, endometriosis included, that young women hitting puberty suffer from. If these conditions were caught earlier, then these young ladies would have a better chance at leading a more productive and happier life. Treatments could be administered earlier and the solutions could be found that would not impact their lives so drastically. Some of the treatments currently out there for some of the chronic pelvic conditions are just as harmful, if not more harmful, than some of the illnesses themselves. Going with out a proper diagnosis can cause these illnesses to become exacerbated and inflict unnecessary pain and suffering. We all deserve to find help for the illnesses that complicate and interrupt our lives. We deserve the ability to make choices in life and not have our illnesses make them for us. 

There are private and government organizations that can help with funding the search for a cure, non-invasive testing, and public awareness. The National Institutes of Health (NIH), the Department of Health and Human Services (DHHS), The Center for Disease Control (CDC), and the Surgeon General are particular governmental institutes that are crucial to work with. They have the ability to change the way medical professionals, government entities, and the public in general, look at endometriosis and other chronic pelvic issues. If these institutions would start talking about the illnesses, it would open people's eyes and cause more of a change in the way these illnesses are judged and treated. I know when I was in school, I would miss 2-3 days of school every month. Between throwing up, bleeding heavy, hot and cold flashes, and the excruciating pain, there was no way that I could learn, let alone function, at school. Now a days when you miss too much school, you are sent to court and punished for truancy. If people understood more about these chronic illnesses, then we may be able to save young ladies from being punished for being ill. We could find doctors that could help young ladies live a more "normal" and productive life, and not have to miss out on school classes and activities.

It was not my goal in life to be stuck in my home writhing in pain. I didn't sit at home, as a little girl, and wish that I could stay home and be stuck in bed, on the couch, or in the bathroom. It wasn't my goal to feel like less of a person for not being able to clean my house, wash my clothes, or be a good wife to my husband. If there was a real solution out there that would allow me to actually live my life, I would jump on it in a second. It is my belief that the EndoMarch is doing everything that they can to find that solution for me and every other sufferer out there. If I can help in those efforts in any way, I am going to do it. I am not rich, famous, or even known to very many people, but I do have a brain, heart, soul, and voice. One person can help make a difference, but I consider myself one person among millions that are standing up and fighting for something that is long overdue. I am going to do my best to use what little I have to help make the EndoMarch as successful as possible. I need the goals to be met just as bad as every other woman out there that suffers from a debilitating chronic pelvic disease. I have suffered for 20 years with endometriosis and do not know how long I have had adenomyosis. I think that I have suffered long enough and deserve some answers and recognition. Anyone that has suffered for years and been made to believe that they are not deserving of help, should be recognized as being strong, stubborn, and more full of life than most. The EndoMarch has given me a renewed sense of hope and I could not be more grateful. 

Please help us all by checking out the EndoMarch website and read the stories, goals, and information about endometriosis. Help us educate the world and spread the strength and hope of every woman that is fighting like a girl. www.millionwomenmarch2014.org

Misinformation and The Care We Need

Interesting story, at least it is for me. I woke up this morning cramping and so of course I had to post something about it on Facebook. My post, "Yesterday was a good day, today is starting to be a painful one. Guess it was too much to hope that 2014 would be pain free. Oh well. I am happy with the life I have and looking forward to what this year is going to bring."

My Aunt asked about my upcoming hysterectomy and if that would make me pain free. I told her that I wished it would, but that it would really only fix one issue, my adenomyosis. Of course I could have said that it will also prevent the endometriomas from forming on my ovaries, and will keep my uterus from becoming attached to my rectum again, but I thought that was a bit much to be posting at 10:30 in the morning. I told her that there was no cure for endometriosis and having a hysterectomy and having my ovaries taken was not going to "fix" me. She then told me something that kind of shocked me. I thought I had heard it all. Nope, I hadn't. 

She said, "Well I thought endometriosis feed on the blood supply, so in other words, when you don't menstruate anymore it doesn't have any blood supply to feed off of." Color me shocked. I had not heard that before. I was kind of dumbfounded for a second or two. It was amazing to me that, number one I hadn't heard this before, and number two, that with all the information that is circulating about endometriosis, this is still so misunderstood. I told her that I would find some information, and pass it along, that could explain it better than I could.

After doing lots of research and asking several people for help, I have found quite a few resources with wonderful information. I think it is very important that we start spreading the right information, or at least the information that is more current. It is my goal to get as much information out there as I can, so that maybe we can find a cure someday. 

www.endometriosisaustralia.org/ A website that has good explanations and a good Q&A section.

www.endometriosis.org Is another really good website, with tons of explanations. Get explanations of diagnosing, treatments, and the complications that are caused from having this illness. It is a great place to get information and find a physician that specializes in endometriosis.

I think the thing that struck the largest chord with me was a message that was posted by an owner of one of the Endo support groups that I belong to on Facebook. She had posted about ob/gyn's and their lack of education, understanding, or willingness to treat endometriosis. It is very poignant and very true. Most of the misinformation that is "known" about endometriosis, is being passed around by these ob/gyn's. Please read and judge for yourself.

Below is a post made by Nancy Petersen, a nurse that has worked with women that suffer from endometriosis. She has dedicated her life to help us make sure that we have the support and resources to make informed decisions and find true specialists that can help us with our symptoms and fight our disease.

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Recently when I posted on this board that less than 100 out of the 52,000 gyns in the US had been identified as doing effective endometriosis surgery, I heard from a group of gyns who were offended by the comment. Yet as we discussed my comment, what came out were a variety of comments that support my position. They knew of "subtle appearances" and indicated that guided their practice. But some do not operate on colons, bladders, ureters or diaphragms nor did they have consultants to assist with disease in this area. some did not feel removal of mild disease was even warranted. Still some do not operate in the lower pelvis, do not refer for pelvic pt, do not refer for pelvic pain management and despite the signs and symptoms of peritoneal inflammation do not believe in pain medicine to assist with coping of peritoneal quality pain. (bloating, paleness, severe pain, slowed bowel, nausea, restlessness, rebound tenderness or painful pelvic exams). Endo causes peritoneal inflammation and there is not a med student or nursing student on the face of the earth who have not been taught to recognize peritoneal signs and symptoms. Most would treat it aggressively. Some dismiss it as just her period. Try living with appendicitis constantly, or a dozen grains of sand in your eye for a lifetime. 

To relieve pain, all disease must be removed. One has to know not only what it looks like, but where it is found. I was surprised to hear so many physicians will see it as a disease of the ovary, but statistically, the ovaries are 7th and 9th in order of frequency of involvement, not first. So knowing where disease is found is a big step toward being effective surgically. Additionally, having either surgical certifications to operate on all areas endo is found, or a stable of consultants able and willing to do so is another huge factor in outcomes. Recognizing endo lies beyond the pelvic cavity is also major. 

Today in the support groups nearly every day, I hear from women who have been castrated (total hyst) and yet have endo type symptoms. Yet they are told over and over there is no way endo can be present after a hyst. Yet there are a number of studies that show us endo can and does persist after hyst if it too has not been removed. Too often the hyst was done to treat the endo. (without excision of endo implants elsewhere). There is ample evidence that removing normal tubes, ovaries and uterus does not ease endometriosis pain nor does endo dry up and go away after castration. There are good reasons to do a hyst, but endo is not one of them, and the long term impact of hysterectomy is not offset by estrogen replacement when it comes to bones and heart. (as I understand it). 

What women seem to want is compassionate understanding of how severe the pain is, to not be told medical therapy treats endo (we know it doesn't), to not be hysterectomized for endo treatment when removing lesions skillfully works much better. If their doctor cannot do skilled excision surgery, they express a desire for referral for pelvic pt to a certified womens health therapist, and or to a surgeon doing skilled removal of disease. 

Pain management may lead to dependence, but rarely abuse, and it often allows women to get up off the couch, put their heating pad away, and get back into life. 

When we say we want effective endo surgery, we are looking at a desire for prompt diagnosis, compassionate understanding of the severity of pain, and skilled removal of disease. This comes out in the discussions every day, multiple times a day, and is critical for the industry to begin to understand. Drugs do not treat endo, most of the side effects are unpleasant to say the least, and the altered hormonal states unacceptable to most.

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The link below is where I found this statement at. You will not be able to see the post unless you are subscribed to the group, as it is a private group. I did get permission to share it on this blog.

Nancy Peterson: https://www.facebook.com/groups/418136991574617/permalink/593046580750323/

I have been to many ob/gyn's in the last 20 years (I am getting old), and it still amazes me their lack of empathy or understanding for those of us that are dying a little more with each passing cycle. It still amazes me that the misinformed are the ones that are making it so hard for those of us that are suffering, find the care that we need. 

I went on this search for information to better explain this illness to a family member. I wanted to make sure that I did not give out the wrong information. Why can't someone who has a medical degree, has more money than I, and that is supposed to treat people that suffer from this, not have the same fortitude to give out the correct information? Why is it that they are paid well for doing a half ass job? I crochet and get paid next to nothing, yet I still will undo a project 20 times if that ensures that I am getting the job done right. If I see there is one mistake, I undo it and start again. I am dealing with yarn, the ob/gyn's are dealing with people. We have feelings and are living and breathing. We are scared and living, just barely, and looking for answers. Why is it they are paid a lot to do little, while we are paid little to do a lot? 

I started this journey looking for answers to share with my family. I am so glad I did. I am glad that this was put in my path today and that I found information that is going to help me, my aunt, and other women that suffer from this illness. Maybe if we all start spreading the right information, then the Dr's will have no choice but do their jobs correctly. If you don't want to take the time to treat your patients, then it is high time you find another job. A Dr's job is all about helping people get better. The oath after all is, "First do no harm." You are harming women if you are not listening to them and helping them get the treatment that they need, for an illness that definitely hurts and harms.💛

Our Pleas Are Being Heard

There is something to be said for all the information that is starting to come out about endometriosis. It almost seems like our pleas for help are actually being heard. I am seeing new information being posted everyday. I think that we may just start getting better care. I am looking forward to the EndoMarch2014. It is going to show the world that we are not giving up. We will shout from the rooftops and bang on doors in order to get the treatment we deserve. We suffer like many cancer patients do, yet we don't get the same sympathy or understanding. Our families look at us like we are crazy, or lazy. We are treated like we should get over it, suck it up, take Midol and get to work. If endometriosis were classified as the cancer type illness that it is, then maybe our the insurance company would pay more of our medical costs. We may be able to get on disability, as some of us are in the bathroom or in bed all day. Maybe we would have more effective treatments available to us so that we would have a chance to live a more "normal" life. Just maybe we would have national coverage of Endometriosis Awareness month, the way that everyone covers Breast Cancer Awareness. 

We can only hope that this trend continues. I am seeing more and more studies and news stories on our hidden passenger. As soon as I see them, I share them. I do my best to spread awareness and gain friends everyday for doing so. I love that there are so many of us that are standing up and speaking out. It would be wonderful to be able to attend the Endometriosis March on March 13, 2014. The scarves that I make will be around the necks of many women that are attending and that will have to be good enough for me. The march is just another way to spread awareness and I think that it is another stepping stone in the long path to finding a cure. 

If you would like to learn of all the new information that is beginning to circulate, join Facebook or Twitter and find me. Anytime something is shared, I pass it on. You can learn new things and have better conversations with your endo specialist.

Struggling but Fighting

Days seem to get longer and longer with each passing day. I notice that I am having a harder and harder time dealing with this illness. I have suffered for 20 years and each year it gets worse. If I really think about the progression of the illness, and the pain associated with it, I think I may just give up. The pain is so unbearable now, and next year at this time, I can't even comprehend how I would deal with it. 

I have been in some pretty bad pain for the last few days. I will be starting any day, and my uterus and ovaries are punishing me. My husband says I am stubborn and always try to do too much and end up paying for it later, so he came up with a solution. He went and picked up a slew of movies and sat down and watched them with me. He knew if he was up and doing stuff I would figure out a way to help, or do something else that needed to be done. I know it killed him to sit all day for the last 2 days, but he was content because he knew I wasn't over doing it. So let me actually get back to the point. The movies we rented were apparently scratched and we were missing big chunks of the movie. We only paid half price for the rentals so I told my husband, "I guess we only get to watch the half of the movie we paid for." Of course we both started laughing and I immediately started crying. Laughing hurt so bad that I couldn't hold back the tears. I felt so bad. My husband hates it when I cry because he feels helpless to do anything about it. I usually do everything in my power to be strong. I cry when he isn't there, but every now and then I can't help it. Today it made me so mad. We were having a good time and the pain had to remind me that I couldn't do that today. For just a split second the old me was there. I was light hearted and quick witted. It disappeared as quickly as it had appeared. 

I am struggling with the unknowns. I have been reading a lot of articles about Endo lately and it is a bit discouraging at times. The unknown is what is so scary for me. I had a surgery in April thinking that the outcome would be less pain. Needless to say that wasn't the outcome. My Endo was so much worse than the specialist had thought and therefore the outcome wasn't as predicted. I have severe endometriosis and adenomyosis so the next course of treatment is to have a hysterectomy. The fear I have is that I won't get enough relief from it. The majority of my pain is around my periods and so we think that taking my uterus will take care of the adenomyosis. Taking my ovaries will prevent the endometriomas from growing back on them, and therefore reducing my pain. What if it doesn't work? What am I going to do? I am scared that it is just going to exacerbate another complication from having endometriosis. I am scared that it won't take care of the amount of pain that I need it to. I know that it won't cure the Endo. I know what it won't do, but it is what I don't know that it will do that is scary. 

There are no guarantees when it comes to having surgery to treat this illness. I have an excellent specialist, but he doesn't seem to know much about how to treat the other organs that can be invaded by the endo. He knows how to excise it, but he doesn't do resectioning of the colon, nor does he know how to find it in the colon muscle. I talked to him about the issues that I was having with going to the bathroom and he told me that the only gastro doctor that he knew, in the area, that could identify it in the muscle of the colon, had passed away. He hasn't been able to find another doctor that could. So that essentially told me that if that was an issue, I would have to be able to travel to the CEC, or find another doctor that was closer. 

I am not able to work, other than selling my crochet items, and that doesn't earn us much money. My husband works hard in the oil field as a welder, but he doesn't make the kind of money he should. We aren't at poverty level, but we live paycheck to paycheck most of the time. We have paid off our house and our vehicle, but with medical bills, we can't afford to buy another vehicle. I hate being such a burden to my husband. We can't afford the travel to go to different doctors, or for the hotel stays. Heck, I owe over $100,000 in medical bills just for this year alone. That means that if we didn't pay for gas, groceries, electricity, water, or cell phones, we could pay off the debt over the next three years.

I broke down tonight and told my husband that I was scared. I have been trying to so hard not to burden him more than I already do. I just broke down tonight and couldn't keep it bottled up. I felt helpless and didn't know how to hold it all in. Why does the endo have to take away laughter from me? It seems that it just keeps taking more and more. I am losing pieces of me, bit by bit. There used to be a time where I would crack jokes constantly. I used to twist what people said and make it funny. I don't do that so much any more. I think you have to be happy in order to be funny, and I am just not that happy. My husband does everything in his power to make me smile and keep my spirits up, but sometimes it just isn't enough. I am fighting the depressive feelings that keep creeping in. The best way to fight them is with laughter, and I can't laugh. 

I know I am not alone and that I have plenty of support from my endosisters. I know that things will look better in the next week or so. Until that time comes, I have to fight to stay positive, strong, and light hearted. It is definitely a fight for me. I have been in pain almost all my life. I was physically abused by a step father, raped by a grandfather, and now have severe endo. I really need a break from the pain. I fought people growing up and now I have to fight my own body. I have survived so much brutality and I will survive this too. I have always fought like a girl and I won't give up now.