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.

More Questions Than Answers

I am sure that many of you talk to family and friends about your illness. If you are like me, you come across those friends and family members that ask questions that you don't have an answer for. I have also run into the occasional person that has a "suggestion" that sounds good, though not at all plausible, or the suggestion is completely insane. I have very close friends and a few family members that want to truly know how I am and what is going on with my treatment. As I explain things to them, I am confused myself about this horrid illness and the treatments, or should I say temporary solutions to a few of the complications. 

I was sitting at the table today explaining what the doctor found at my last appointment and the treatment options that were offered. I then had to explain that even though we chose an option that will treat an issue, it won't solve the other complications. The look on my family members face was perplexed. She asked why this wasn't treated like they treat cancer. I didn't have a good answer other than to say it wasn't cancer. She then asked why I couldn't get disability, especially since she has watched my health fade for a few years now. Again, I had no good answer. (My husband and I proceeded to tell her about the March for Endo and what they are trying to get accomplished). She asked some very good questions but she also asked questions that weren't possible. One the questions was why can't they get all the hormones out of your body to starve the Endo? That didn't make sense to me. I understand why she would think that, seeing that I explained that the Endo is progesterone and estrogen, but how can you strip every cell in the human body of those hormones? (That question reminded me of my days working in the ICU. We would have a person that was badly injured and would be brain dead or severely brain damaged and a family member would ask if they could have a brain transplant. Yes you read that right, a brain transplant. I understand where they were coming from. They were losing someone they loved and wanted to find any answers they could to hold onto them. It is still one of those questions that is absolutely impossible.) She has watched me suffer and decline and she is grasping at straws to try and figure out a way to help me and I love her for it. 

After explaining everything and going round and round, we decided that it was time to get off such a dreary subject and join everyone else in more delightful topics.

I came home and on my Facebook wall there was a friend asking how to explain Endo and the fact that she is having a complete hysterectomy to her father. She was unsure how to explain it all to him. I put in my two cents and told her that all she could really do was explain it to him the way the doctor explained it to her. Tell him what you understand endometriosis to be. Then explain to him the treatment options you were given and the pros and cons of each option. The next step would be to tell him which option you chose and why you think that option is the best one for you. The last step is to ask if he has any questions or concerns. All you can do is answer them to the best of your ability and seek answers that you don't know, by calling your Endo specialist and asking. I told her that I was unsure if that was helpful, but that is the best that I could come up with.

I understand where she is coming from. It is hard to talk to loved ones about this illness. It is hard to tell them that you made a decision to do something that may make you life better, but there is no guarantee. For me it is hard to tell someone that I have chosen to have a hysterectomy but I am struggling with the decision because I have no children, and I am afraid that I won't get the relief that I need. It is hard to explain that you trust your doctor, and then tell them that he tells you that he can't guarantee that it will fix anything. He can't guarantee that it will make my pain better. He can't guarantee that it will prevent future surgeries. Most of all he can't tell me that he will fix it or cure it. It is hard to explain that even though I am going through the surgeries and trying to live with the decisions, that I am scared that the outcome will be no better than what I am currently living with. It is hard to explain all that and then not be apprehensive of the response I'll receive from them. 

So I regress. I am left with more questions and no closer to finding the answers. I am left leaving a loved one just as confused as I am. I am left just as frustrated, angry, and sad as them. We all struggle with this illness and with the frustration of having no answers. We all feel, at times, like there will be no end to our pain. Then to top it off, we then have to live with the fact that we have burdened our family with our illness. We have spouses, (some of us) children, siblings, parents, and friends that have to pick up the slack where we fall short. They have to deal with the fact that we won't always be able to participate in the big moments in their life. I believe that the people that live with us are the ones that are affected the most and get as frustrated as we do. Day in and day out they have to watch us suffer and do everything in our power to act like it is ok. They have to listen as we are told that there is no cure and that this may be an issue for the rest of our lives. They have to try and figure out the answers and get no where right along beside us. 

I feel like I am rambling on and on and being so negative on a day that is supposed to be filled with joy. I wrote this post because I found it intriguing that I was having difficulty explaining it to my family, and to myself, and I come home to find out that I am not the only one. As many people as I talk to, that suffer from this illness, it still surprises me when I find out am going through the same experience as someone else that is living with endo. It reminds me that writing this blog can be helpful. If I am having the same experience as someone I know, there has to be other women that are experiencing it too. We all seem to share a bond that no one else can comprehend. I feel it is my purpose in life to help other people live to see the day that a cure is found. I want to help young ladies and women everywhere to hold onto hope, and not give in to endometriosis. We don't have all the answers now, but there are wonderful Endo specialists that are working hard to help us find them. 

Sometimes the answers you seek are just a click away. Sometimes it is comforting to know you aren't the only one thinking about this, feeling like that, or trying to find an answer that seems to be buried. Sometimes you relate to someone else and find answers without really looking. I hope I can help someone else the way others have helped me. We are over 176million strong, and together we will find the answers we need.  💛

What is to come

Have some news. I went to the doc last Tuesday and found out why I am having so many issues and pain. It is suspected that I have Endometriomas on both ovaries, my adeno has gotten significantly worse (they can tell by how much bigger one side of my uterus is since the last sono), and my ovaries are both adhered. It is also suspected that the majority, if not all, of my previous adhesion's have returned. When my sonogram was done, it was proven that my left ovary moves with my uterus and therefore suspected to be adhered to it. My right ovary was more painful than my left and is suspected to be adhered back to my bowel. My ovaries hurt worse than my uterus did. Although every aspect of the sonogram was quite painful. It hurt worse this go around than it did 8 months ago.
The sonogram tech is a wonderful lady. She is as gentle as she can be, and explains everything she is doing/seeing as she does it. She put my sonogram from 8 months ago up and compared it to the current sono as she looked at everything. My mind was not into looking at both sonos. I was having trouble dealing with the pain and being able to concentrate and follow along with what she was finding and explaining. Thank the good Lord above for my husband. He was comparing the old sono pic with what he was seeing and said that the adeno had made the posterior/back side of my uterus about 65% larger than it was 8 months ago.
After discussing the findings with my specialist, we have come to the conclusion that the best course of treatment for me, at this stage in the game, is to take out my uterus and ovaries. The adeno is progressively getting worse, and the only way to cure that is to have the uterus taken out. My ovaries are continuing to get adhered to other organs and are developing endometriomas and cysts, so they are not able to function correctly and causing a significant amount of pain.
I am not going to get into the feelings that I have on this today. I just wanted to update what the doctor had found. Since the sonogram, I have had significant pain. I called the Dr and was told that the sono may have aggravated some things and that I need to take it easy and let the area heal/calm down. I have felt like I am on my monthly and I haven't been since last Tuesday. I am having some spotting from time to time, but barely noticeable except for when I use the restroom.
This illness has taken so much from me. My hope is that the hysterectomy will bring me SOME relief from SOME of the pain, so that I may be able to actually live a portion of my life. I will be 33 in March, in fact four days after the EndoMarch2014. I suspect that I will be recovering from surgery while everyone is marching. Maybe I can get just enough relief to be able to make it to next years march! I know that it will not cure my endometriosis, and I know that it won't fix the adhesion problem, but I also know that I won't have adenomyosis anymore and no more periods. Hoping that it will be enough to allow me to clean my house and help my husband more with some of the things we need to get done. I need at least a little relief. Something would be better than nothing, as I am hitting my breaking point.

I hope everyone is having a better week than I. If you haven't signed up or heard about the EndoMarch2014, please look into it. The more people that know, the more awareness we spread.
www.millionwomanmarch2014.org
You can also get your Endometriosis Support Ribbon Scarves on my website: www.dkbcrochetworks.com A portion of each sale is donated to your states GoFund account to help get to the EndoMarch. When the date has passed for the EndoMarch, I will start to donate to a charity to help fund the search for a cure.
I want to make sure that no one thinks I am trying to get rich by selling these. Each scarf takes me about 4 hours to make, I make about $12/scarf, so it averages out to around $3/hour.

Sleeping on the couch

So anyone with this wonderful disorder, knows that there are days that the pain is severe and the flow is extremely heavy. When those days hit me, I am forced to sleep on our reclining couch. 

I am currently experiencing AF and for the last 2 days I have been confined to my couch and the bathroom. I attempted to go to bed my first night and I couldn't get comfortable. Laying on my back made my lower back hurt worse, laying on my stomach was not even an option, and lying on my side made my cramps worse. Couch here I come. Grabbed my heating pad, neck pillow, meds, glass of tea, and a towel. Slowly I made my way to the living room and placed the towel on the seat. As I am sure you all have experienced, the movement made the cramps unbearable. I reached over the arm of the couch and grabbed my short brown extension cord so that I could plug in my heating pad. My husband and I have learned that I am unable to bend over to plug in anything into a socket, so we set up a short extension cord that can be easily reached when I need it. After heating pad was turned on, it was time to get it situated to cover as much as my stomach as possible. The heating pad can't have to much pressure against my stomach, but has to have a little pressure to keep it against my skin for maximum effect. (We almost have to become experts to get some sort of relief.) I then sat there and cried until my meds kicked in and the heating pad started to work. So pain level went from a 10 to about an 8 1/2. Needless to say I didn't get much sleep. I took more meds around 4am and hubby woke me up making coffee at 5am. He apologized for waking me up (he knew I wasn't going to be able to sleep, but hadn't expected me to be on the couch). Of course I told him no biggie. I then started writhing in pain again. He asked when I took meds last and I told him an hour ago. I ended up taking some OTC CVS PMS meds (lots of caps there, lol). Hubby sat down and drank some coffee. I guess I was so worn out that I fell asleep crying. I woke up about 3 hrs later to a lot of pain, a clean kitchen, a working washer and dryer, and a husband asking me if I was ready for coffee. The only up side to this illness, for me, is I get to see just how much my husband understands this illness, and how much he loves me. 

Fast forward. I ended up bleeding extremely heavy, going through a pad every hour. The pain was excruciating and I knew it was another couch night. With such a heavy flow, I am unable to lay down. Pads are the only thing I can use, as tampons make the pain worse. The pads are not the most reliable form of protection when laying down and sleeping, especially when you are flowing like you're Niagara Falls and passing blood clots the size of golf balls and bigger.  Luckily I still had everything I needed around the couch, so I didn't have to prepare again. Another sleepless night of pain, discomfort, and walking very slowly to the bathroom. (I am contemplating putting a small room with a toilet in the corner of my living room, lol). 

It is aggravating to me that not only do we deal with pain, we have to deal with everything else too. If a man came in bleeding like they were Niagara Falls, they would figure out a way to FIX it. It just isn't natural! We should be able to crawl into our bed every night and sleep. We should have the ability to lay in our bed. I am tired of taking pain meds. I am scared that the pain is never going to end. I want to help my husband clean the kitchen, buy groceries, and do the laundry. I want to live life, not watch it happen around me. I am so afraid that a cure is not going to be found and more women are going to hurt needlessly and lose all the life that we have lost. The only thing I can do is pray that a cure will be found and pray that I stay strong enough to make it through every visit from AF. I can also spread as much knowledge as possible and spread awareness. 

We all get scared and have a hard time believing that there will come a day when we will get relief. That belief and hope is all we have. We have to hold onto the hope with all of our hearts and souls, in order to have the strength to continue fighting. I believe that the illness that we live with makes us stronger than almost anyone else. We experience some of the worst pain and lose so much of our lives because of this disorder and all of its complications. Yet we continue to smile, fight, and conquer our fears to make it through it all. We are strong, we will fight, and we will find a cure. We will continue to share our stories and show our support until we get more answers and a cure is found. 

  Endometriosis Support Ribbon Scarves. Wear your support around your neck. dkbcrochetworks.com  A portion of each sale is donated. 

Ignorance and endo

I hope that everyone enjoyed their holiday, had lots of good food, and enjoyed family/friends. If you were like me then you had all of the above, but had at least one person that showed ignorance when it came to you and your illness. 

I said one time, "Your ignorance may be bliss, but it isn't to the people that have to put up with it", and I think it fits this post. 

There is always at least one person that does not understand, or empathize, with what you go through while living with endo. 

I spoke with some of my family about what may be coming up, to treat my adenomyosis and endometriosis. My husband and I are considering a hysterectomy because my quality of life is so poor. I wanted to let my family know so that when the time comes, IF we need help, they are expecting it. One of the family members asked why we would need help and said that my Dr must not know what he is doing because I am still so ill. She was at the hospital when I had my surgery (in April) and said that when the doctor came out, he said that he had gotten all of the endo. I tried to explain to her what he said. When we spoke with him, he told me that he thought he had gotten it all, but due to me being among the worst he had seen, he couldn't be certain. I had a large amount of adhesions (postop report said anatomy was unrecognizable), had an advance stage IV endo, and adeno. He told us that he took out all the endo he could see, but couldn't guarantee he got it all because of everything that he found when he got in there. He said that he could have missed some on the back side of my uterus. I explained and she dismissed me. Then she proceeded to tell me that when my mother in law had her hysterectomy (mind you she didn't have endo or adhesions), that she was up and doing stuff the very next day. My mother in law corrected her and told her that she wasn't up and around for 2 weeks. She also told her that she was supposed to take it easy for 3 mo, but because she had 5 children to take care of, one that had CF, she did a lot that she wasn't supposed to do. I was appreciative that my mother in law spoke up, but it didn't deter my other family member from dismissing me. 

The reason I am sharing is because I woke up this morning thinking about it. The thoughts of hurt, disbelief, and disappointment would not leave my head. I understand that everyone has their own lives and it is not always understood what another person is going through. The thing I don't understand is why another woman could not be more sensitive to the fact that I am having a major surgery that may make me dependent on others for a little while. It is also going to take away my dreams of having a child. When she said, "They only make 3 incisions, it's not like they cut you open anymore" it cut like a knife in more ways than one. She was rather sarcastic in her remarks with no regard for my feelings or the fact that I am scared. 

Those people that are ignorant or just don't care about you enough to lend an ear or helping hand, are in each of our lives. As long as we have atleast one person that is supportive and understanding, then we can let the others live in their ignorant bliss. After talking to my husband about it, we came to the conclusion that she may not know how to handle it all. Not everyone can handle having an ill person in their life or being the shoulder to cry on. Not everyone can be selfless when someone else needs them to be. No one is perfect, we all have our flaws. My husband and I will figure it all out, and will be stronger because of it. 

We trust my doctor and know that he does the very best that he can to help. We know that there is no cure and that there are no guarantees that I will ever be pain/complication free. 

I am reminded of the golden rule, "Do unto others as you would have them do unto you." I sometimes wish that I could treat people the way they treat me. No, I really don't. I see myself as better than that. Though I know that I can't make myself hurt worse in order to do for those that can't make any sacrifice to help my husband and I when we need it. Putting myself through excruciating pain is a huge sacrifice that I have made in order to help everyone that I care about. If the sacrifice is made in vain, then it is not worth it. If it is not appreciated then it will not be sacrificed again. 

I no longer feel the need to plead for understanding or help because I am a strong woman. I have made it through a lot of things all by myself. Now I am blessed with a loving and supportive husband that will hold my hand through it all. He will pick me up when I fall, and protect me from everything that I can't fight. 

It hurts when you lose respect for a loved one because you figure out your love for them is stronger than their love for you. It hurts that I doubted myself, because I put so much stock in how she feels and what she thinks of me. It hurts that she looks at me as someone who should just get over it. It really hurts that she can't understand that I wanted to have a child and that I may need help coping with the loss after the surgery. 

It will hurt for a while but we can only do so much to get understanding and support. We can't force someone to learn/do something they don't care to know/do. We can just hope that they come around someday. If they don't, then they are the ones missing out. Knowledge is power and love is long lasting. My loyalty is unwavering and I will always be there when needed. We can't let everyone else make us bitter, because then they get the best part of who we are. Hard to walk away, but sometimes can be healthier in the long run. 

I hope this is helpful to someone out there who is going through a similar situation. We are Endo Sisters and we share a bond, over a 176 million strong. You are all a part of my support and I am a part of yours. Family and friends may not always comprehend, but our Endo Sisters always do. 💛

Relationships and Endometriosis

I have seen a lot here lately about women who are living with endometriosis and the relationships that they have. Many of us can sympathize with everyone that has that person or persons in their life that do not comprehend or understand the complications that arise when living with or being related to someone that has this disorder. Many of our relationships suffer because of what we live with, try to hide, and sometimes fall apart from. Relationships can include personal and professional, family, friends, and spouses.
I have had several relationships fall apart. Several of my family members are no longer a part of my life due to their lack of empathy, understanding, and/or support. Prime example, my mother. She is a NURSE and has told me so many hurtful things, that I finally got to a point where it was easier to avoid and ignore her, then it was to hear or live with the negativity that she was adding.

I have lost many romantic relationships due to the lack of the ABILITY to have sexual intercourse. The way I see it is that if your significant other truly loves you, they will be able to cope with the fact that sex is not going to be plentiful or regular. It hurts some of us to have sex. It isn't because we don't WANT to, it is because we aren't ABLE. The act of sex is supposed to be fun and feel good. If it hurts, and someone that claims that they love you is insisting that you go through it, they only care about themselves. Love is supposed to feel good, not hurt. There are times in every relationship that it can hurt, but sex shouldn't be one of them.
Sex isn't the only aspect that can ruin a romantic relationship. I can only speak from my experiences, but I believe that I am not the only one that experiences the feelings that I have. I am very hard on myself and that tends to present itself as an attitude. The lack of the ability to do "normal", everyday things, is very stressful. In past relationships I have been accused of being dramatic, making it out to be worse than it is, or being lazy. The guilt that I feel for being in so much pain that I can't stand to clean, vacuum, or get laundry done, is so heavy. For someone, that is supposed to love and care about me, to come home and make me feel even worse is not accomplishing anything. There is no making it worse than it is, it is actually doing my best to cover up how bad it is. I will make myself hurt worse by trying to get things around the house done. I will cry and apologize for the things that I don't get accomplished. If I don't see that there is understanding and compassion for what I am putting myself through, then I know that my love is stronger than what I am receiving. It is important to know that you aren't getting into a relationship with blinders on. I would much rather scare someone off before my heart gets too involved, then invest my heart and soul, only to figure out that I am stronger than the other person is.

When I met my husband, I laid it all out there. We were friends first, which I find extremely important and helpful. With all the failed relationships I had had in my life, I wanted to try something different. I had gotten into a car accident a few months before I met my husband, Danny. I was dealing with insurance and lawyers and going to countless doctors. I was also in the process of dealing with issues from my endo and so it had all piled up. When I met Danny, I told him that I was at a point in my life that I was unable to have a "relationship" but wanted to surround myself with people that wanted to get to know me for me. I wanted someone to learn who I was and what I was about, and if that happened, then I would consider taking steps toward getting into a relationship. We spent several months together, as friends. We went to family functions, went to dinner and a movie a few times, and had long, meaningful conversations. When I say meaningful conversations, I mean we talked about the things that actually matter. I told him that I had suffered from endometriosis since I started my period at 13. (This is how I figured I would run him off if he wasn't up for the task of being something more than a friend.) I told him about my history with my family (not a good one) and about all the things that I find important about myself. That includes the things that are not so great about me. I have been diagnosed with severe anxiety and my anxiety tends to rear its ugly head and causes my mouth to overload my rear end at times. I explained that my biggest issue was finding someone that could learn the difference between my anxiety and hormonal attitude, and me just being a witch. As I said, I laid it all out there. I can't tell you that our life was easy. I can't tell you that we didn't have our share of fights and blowups. I can tell you that laying everything out there before I agreed to become his girl made a big difference. Our first year was hard. We had to learn each others behavior and attitude. Now that we have been together for seven and a half years, I apologize for all the things that I don't get accomplished and he says, "I knew what I was getting into before we started, and I am here to help you through it."
Danny is a strong man. He isn't a push over or submissive in any way, shape, form or fashion. He has a temper and can be stubborn as all get out. He has a huge heart and is compassionate. He is perfect for me and my illness because he is enough grizzly bear mixed with teddy bear. He fights with me when I am able to fight and fights for me when I am not that strong. The aggravation that he feels and shows when I see a doctor that is dismissive of my pain/illness, shows me just how lucky I am to have him.  I make sure to tell him as much as I can, how thankful I am that he loves me enough to deal with such a broken wife.

Friendship is tested when you suffer from a disorder that is not well known, understood, or able to be cured. Trying to explain to someone the complications of this illness is a long conversation. It is even harder for a friend to understand when they visit and they see that you are walking around like there is nothing wrong. I have had days that I walk around very slowly and hunched over, but continue to try to participate with my friends. I can see how it would look to other people that I am being overly dramatic. If they were to hurt the way that I am, or saying that I am, they would stay in one spot and not move. The reality is that I lose out on a lot of things in life and when I have someone that has taken the time to come and see me, I want to make sure that they don't regret their decision to come. I will make myself hurt even more in order to feel like I am being a good hostess. I don't want my friends to come to my house and have to do things themselves. I want to be able to show them what I am working on (my crochet stuff) and all the things that I have actually been able to accomplish. I hate looking like "that" friend that does nothing all day but eat bon bons and their spouse waits on them hand and foot. Most friends aren't able to cope with having a friend that needs so much support and understanding. I am in my early thirties and most of my friends have kids, go on vacations, or go to the lake. Due to the extent of my illness, all of those things are impossible. The furthest I go from home is to see my endo specialist 3 hours away. I have had a miscarriage and it doesn't look like having a child is going to be possible for me. My friends who have children don't know what to say or how to act, and therefore our friendship usually fades.
Professional Relationships: When you suffer from Endometriosis, it can cause lots of missed days or poor productivity due to severe pain. It is difficult for employers or coworkers to understand why they should rely on someone that has so many issues getting their job done. Especially when there are so many other people in the workforce that don't have those problems and can be at work more regularly.

I know that there are many women out there that struggle with their relationships. I have been there and done that. Lessons that I have learned have been hard ones. It isn't always easy to walk away from the relationships that you have, but most of the time it is necessary. I fight my illness every single day. I don't want to fight with the people in my life about my illness too. I am sure that I am not the only one that feels that way. Living with pain and guilt is a burden all in itself, so it is important that you stay true to yourself and find someone that can support and protect you when you don't have the strength to do it yourself. You teach people how to treat you and if you let anyone in your life talk down to you, they will continue to do so because they can and you let them. Let them go, whether it be your family, friends, spouses, boyfriends, or coworkers. If your job doesn't get it, find a job where they will be more flexible (I know easier said than done). If your mother, father, sister, brother, aunt, or uncle make comments that hurt or offend, TELL THEM. If they dismiss it or continue doing what they are doing, then walk away and don't engage. If you have a spouse or significant other that says hurtful things and/or treats you like crap for things that you have no control over, walk away. You deserve better from someone who claims to love you. If you have friends that fade away, let them go. You are stronger than they are, and that makes you a better person. I have been hurt, in so many ways, by the people in my life that were supposed to love, support, and protect me. I have learned that there are very few people in life that you can count on. Being related by blood to someone does not guarantee that you will get the support or love that you need. You learn who you can count on by learning how someone copes with the hardships in life. When you are down, do they kick you, or do they hold your hand and do their best to help you up? Do they point out ways to make yourself better (in their opinion), or do they ask how they can help you feel better? Are they there to get something from you or are they there to offer you their support?
Trust me, I know how hard it is to walk away. I have not had a family. My mother hasn't been there for me in any way that truly counts. My father died when I was little. I have looked for love in so many wrong places and have gotten my fair share of hurt. There just has to come a point in your life when you figure out that you like who you are. I don't like endometriosis/adenomyosis, or any of the complications that I have to endure. I do like me. My illness doesn't define me, and it isn't who I am. Don't let anyone else define you or make you feel like you are not worth the time and effort. Love who you are and respect the fact that you are stronger than most people walking this earth. You live with pain that can keep most people confined to their beds. You live with the guilt and disappointment of the things that you have lost or won't be able to accomplish, and you do it with a smile on your face. You hide the feelings that you feel and pain that cripples you. That means you FIGHT LIKE A GIRL and you should be proud of that. Please don't let anyone take that away from you. If you have people in your life that just don't get it, then find someone who does.  A good support system really does mean the world to your quality of life. 

My cycle Day 22

And the cycle begins again. I am going to document my days, when I can, and what I go through each day. There are a few changes that have been made to my regimen that I will share. My hope is to help women realize that they are not alone. Every experience is different when it comes to this wonderful disorder we call endometriosis, but we all suffer in silence (well when we aren't curled up in a ball crying).

My periods have been wonky (a neat little Texas term I like) since my surgery in April. I have been on 21-30 day cycles. Last month was a 25 day cycle, started on day 26. This month I am figuring a 24-27 day cycle. We shall see. I started cramping on Saturday, Nov 2nd. Depending on the length of my cycle I will start between Thursday and Sunday. Due to my adenomyosis (when the endo penetrates the uterine muscle) I cramp for nearly a week before I start. Oh the joys of the wonderful disorder.

I am experiencing chronic constipation and so I am trying this herbal remedy to help cleanse my colon. I wanted to find something that would not cause more cramping because I already have enough of that. The remedy seems to be working. I am having one bowel movement a day and I have taken this for a total of 2 days. Both days I have had a small movement of very hard stool. (I know this is TMI) I am going to progress the amount of capsules that I take in the next day or so. Only one capsule at bed time for two days now.

The cramping is somewhat tolerable, with periods of severe stabbing, in what feels like the uterus, and pressure in the vaginal area. Pain meds are needed after physical activity. I put some scarves in the washer to get them ready to ship and had a BM (bowel movement) and the pain escalated to about a 6. I need to go do dishes, but will have to wait until my meds kick in or I will be useless for the rest of the day.

Day 22 is underway and I am already dreading where it is headed. I am thankful for a wonderful husband and partner that understands that days like these are hard. He calls to check on me on his breaks and reiterates that he does not want me to over do it. He says that if it starts to hurt, just sit down and we will get it taken care of when he gets home.

My wish is that this illness is more well known so that women everywhere can get the support that I get from my husband. I think it would be wonderful if we could find doctors that could treat us the same way. I am also lucky enough to have found a great doctor, Dr Dulemba. His staff is great and his attitude and humor is beyond reproach. Every woman around the world would be blessed to have more doctors that are as caring and understanding as him. Don't get me wrong, I had to search long and hard for both my husband and my doctor. Had plenty of frogs along the way in both categories. I have lost out on relationships my entire life, due to this disorder. Have been to plenty of doctors that told me I was "normal" and should suck it up. I am not a shrinking violet by any stretch of the imagination. I am pushy, determined, and will fight for what I know is right and what I know I deserve. The understanding that everyone is not able to be as pushy or have the support to stand up for themselves, is why I fight so hard to be heard.

I will continue to update my progress as the cycle days dredge on. I will continue to fight like a girl because I can and I'm proud.

It is amusing the looks of disbelief

Hubby and I went to town today to get gas and groceries. I remembered that I really needed to stop by the health food store, so we made a quick detour. For a couple of weeks now, we have been meaning to stop and something else has been more urgent. After not being able to go to the bathroom (poop) for a week, the urgency has shifted (which is ironic because the lack of shifting is what makes it so urgent. Sorry for the dry humor, have to laugh at it or otherwise I would fall apart). 

We walk in and I wanted to find something that is natural and gluten free, that will help with the chronic constipation. The young lady in the store was helping someone else, so we waited. I asked her if she could tell me where their supplements were that would assist with constipation. My wonderful hubby pointed out that I needed something that wouldn't cause cramping because I have enough pain. Gotta love it when you have someone in your life that will speak up and look out for you. Happy wife, happy life, is a saying my hubby takes to heart, lol. Getting back on track. She handed me a few items and she went to check out another customer. When she came back she asked if we knew the reason for the constipation and my husband spoke up again. He told her that I suffer from endometriosis and have adhesions. She looked at us kind of weird but said that she knew what endo was, so I didn't go into explanation. I did, however, tell her that I also have to take pain meds for the pain. She took that as I am always taking pain meds and she even said as much. She said, "So you take a lot of pain meds, which would be the cause of your constipation." I proceeded to tell her that I don't take a lot of pain meds because I know the dangers of addiction and the constipation issues. I also told her that my main cause of constipation is that the back of my uterus is attached to my rectum. The look on her face was priceless. It went from being somewhat sarcastic and skeptical, to being shocked and sympathetic. She rang me up and handed me my medicine and said nothing. I shocked her speechless. 

The shock and surprise of the lack of information, sympathy, and understanding is why it is so important to me that the Million Women March for Endometriosis 2014 is happening. It needs to be as well known as cancer. The knowledge and understanding NEEDS to be there. It is time, that every woman that is suffering from this disorder, be respected for what they accomplish and the class that they do it with. It is time that the women suffering from infertility, because of this illness, be treated with kindness and not condemned. It is time that we receive treatment from qualified physicians. It is high time that we are treated as people in agonizing pain and not as drug addicts. 

Now that I have gone off script. I just wanted to discuss that moment in my day that made my husband and I both smile and laugh. We walked in a store to find help for something that can cause death if not treated. We walked out smiling because it was amusing, the 360 degree turn around that we saw on her face with just one sentence. You could see her think about what she imagined having her uterus attached to her rectum would feel like, and it was priceless. 

I took a little joy in the fact that I took a fact and knocked that smug, condescending tone and look off of her face. She definitely had that tone and look that most of us get when we talk about pain meds with people in our lives and most doctors. I know it is wrong to take joy in this, but we needed that. We needed to smile and not feel like I was doing something wrong for taking pain meds for my pain.  We needed to give a little honest info about endo and what painful side effects can happen. Maybe next time someone mentions that they have endo, she will think about that shocking moment and be kinder and have a little of sympathy, rather than judgement. If I can help someone else be treated more kindly, then I have accomplished one of my goals. If I am going to have to live with all of this, I may as well use it to teach someone else a little humility. 

I know, I know. It is not my place to change the world, but the way I see it, we have all suffered long enough in silence and it is high time we speak out. 

I hope you found this funny and informative. I understand that some may take offense to this, but the way I see it, I wasn't rude, crude, or disrespectful. I used a fact about my illness to defend myself. I don't think that is the worst thing I could have done. Trust me, I have a mouth and have never been afraid to use it. 

Going to the Gynecologist w/Endometriosis

Every female has to go to the gyno at some point in their life. It is recommended that you go once a year. When you have endo it is torture to have a normal yearly exam, or at least it is for me. I dread going for several reasons. 

Pap smear: it feels like the Dr is cutting a portion of my uterus out, without medication for pain. If you could imagine going in for surgery and not being put to sleep as they cut you open, that is the way I would describe how it feels. I also have severe cramping while it is being done. I told a female PA, one time, that it hurt extremely bad and she told me to take 2 Ibuprofen before hand. Needless to say that doesn't work. I also feel the spot where they take the "sample" from for days after the fact. When you prick your finger with a needle or a safety pin, you can feel it, especially when you hit it, until it heals. It works the same for me, just on the inside, where it is constantly being "touched" by its surroundings. 

Usually, when I go to the doc, they suspect that I have cysts on my ovaries. I do, because endo is on my ovaries and causes cysts to form, though reg gynos don't know or care to treat that. Anyway, to get back on track. They always make me go for a vaginal sonogram to diagnose the ovarian cysts. Those are unpleasantly painful. They have come a long way, though not far enough. One of my first sonograms (which was not vaginal) I was made to drink 64 oz of water and could not go to the bathroom. I had to hold it because filling the bladder made the uterus and ovaries more visible. That was FUN! Not only did I have to deal with the pain of having someone push on the part of my abdomen that was filled with cysts, I had to deal with the pain of having a full bladder pushing on the same area. It took everything I had not to pee all over the place. Who knew that pushing on a full bladder would be painful and would make the urge to pee so much stronger? 

A vaginal sonogram entails a technician taking a cylindrical shaped object and pushing it inside you and moving it around to push on different spots to get the best picture of your uterus and ovaries. Sex can be painful, so who would think that sticking this object inside a woman, with endo, and pressing against different areas inside the vaginal cavity would be unpleasant? It is hard to lay there and control your movement when every movement the technician makes is excruciating. I cry through every one that I have had, with the exception of the last one. The last one was done by a technician that deals only with women that have endo. It still hurt but was by far a piece of cake compared to all the other ones I have had. That is just One of the many reasons I sing the praises of Dr Dulemba and his staff. 

Each Gynecologist asks if there are any issues that you would like for them to address. Oh here we go. I bring up that I am in pain, and not the kind of pain that Ibuprofen, Aleve, Aspirin, or Midol can touch. I get that look that you get from your mom when you have done something to disappoint her. Then I hear these wonderful words, "I know that some women have a little more pain associated with their periods, but you are no different than any other woman that is having menstrual cramps with her period." Dismissal, check. Next I tell them that I would like to get pregnant and have had a miscarriage at 7wks and have had no success with getting pregnant again. I tell them about my diagnosis of endo in 2004 and show them the post op report that proves I am telling the truth. I then say that I would like to find out if it is even possible for me to get pregnant. If I am not going to be able to get pregnant or carry to full term, then I need to know so that I can make a choice from there. Here it comes.... 

"Well, you have several options. We can put you on something like the Depo shot and give your productive system a rest before you try for a baby." (So get on birth control, which helps feed the endometriosis, in order to get pregnant later. Yeah, that makes sense). Offering of band aid, check. 

"We can give you Lupron shots which will put you in a menopausal state and will treat and shrink the endometriosis." (First of all, the last part of that statement is completely FALSE). Completely wrong info given, check. They fail to mention that Lupron was initially created to treat men with prostate cancer. Apparently my uterus and ovaries are comparable to a man's prostate. They also fail to mention the side effects that are likely and/or possible, that they are trying to get it taken off the market, and their success to failure rate with this 'treatment'. (Disclaimer: I choose not to take Lupron, but it has been effective for some women. It is just my personal choice not to take this med because of other issues that I have that can be made worse by taking it). 

"The last option is to have a hysterectomy." Can I just say that a hysterectomy does nothing to solve or cure the endometriosis and the pain associated with it. If you don't get the endometriosis excised (completely removed) you will end up no better off than you were with all of your organs. The other part of that last 'treatment' is, how does that address my concerns in any way? How does that answer any of the questions that I have? I see it as a quick way to get me out of the way and attempt to shut me up. It pisses me off every time I go to a gynecologist. Attempt to get rid of me, check. 

If you want truly good treatment, find a true SPECIALIST of Endometriosis. Do not get on google and find a doctor that their profile 'says' they treat endo. Call your insurance, or get online and do a physician locator search, with these specific words: Endometriosis Specialist. When you have names that appear, go to their website and see if it is centered around endometriosis. Meaning, does it tell you what it is? Does it explain treatments? Does it tell you how to diagnose? Is everything on their site endo related? Does it tell you that excision is your best hope of relief? Does it tell you that there is no cure for endo? If the answer is no, keep looking. Go to the CEC (Center for Endometriosis Care) website and find a specialist. Get on Facebook and find a support group (that is where I was pointed toward Dr Dulemba). Do whatever you have to do to get actual treatment and not feel like you are insane. Regular Gynecologist just don't know enough about this disorder. In the long run they end up putting you through more pain, stress, and mental anguish. Whether it be due to their lack of education, their lack of desire to learn, or they just don't give a darn about you and your complaints, they just aren't equipped to help you. 

Find someone to help. Don't wait, like I did, for the hopes that you will be able to convince some doctor someday that you aren't lying and you are worth the extra effort. Don't go through needless painful tests over and over. Don't go 20 years, like me, and end up in severe pain, with recurring adhesions, and possible infertility. 

If you are hurting during your period, having to stop your life when you have your period, and/or having painful intercourse, go see a specialist. If you are experiencing any of the things that I have posted, go see a specialist. Trust me, it is better to hear that you don't have endo, or any other period related disorder, from someone that actually knows, than to go 20 years crying and asking why you can't get help. 

My Story

 I transferred this post from my crochet blog. I wanted to make sure that all of my endometriosis posts were together.

The Million March for Endometriois is a cause that is very near and dear to me. I am a longtime sufferer of endometriosis and recently diagnosed with adenomyosis. The march has been set up to bring more awareness to this illness and the debilitating pain and infertility that it can cause. There are not enough physicians that truly understand this problem. There are many women that have a similar story to mine and it is not the way that women should be made to live.(Story will be below. Please note that the story is graphic, with not so pleasant information in it.)

I am making Endometriosis Awareness Ribbon Scarves to show my support for the cause. The scarves are the official attire for the march! I have spoken with a coordinator of the event and we are going to paint Washington DC YELLOW ! There are many objectives for this march, all of which NEED to be accomplished.

 Picture 1 is acrylic. Picture 2 is the light weight 100% Cotton. Picture 3 is a thicker warmer 100% Cotton.

Endometriosis is an illness that causes endometrial cells to grow outside of the uterus, which it is still unknown why. When those cells grow, they attach to other organs in the body. When it is that time of the month, all the cells react as though they are inside of the uterus, and can cause significant pain and complications with normal bodily functions.

My Story:
I became a "woman" when I was 13 years of age. From the very start, I had severe pain associated with my monthly. I missed 2-3 days of school every month. I was lucky to have a doctor that understood that I was not making up the pain and he wrote me a note for school, so that I did not get into trouble for missing so much school. My school was very understanding and did not reprimand me for missing school. It wasn't like I was enjoying myself, or running around having a good time. I was in the bathroom, laying on the floor, writhing and crying out in pain. I chose to stay in the bathroom because I would go through bouts of diarrhea and vomiting, along with extremely heavy bleeding. It was a wonderful thing to go through when I was supposed to be a child/teenager.
I ended up going to the hospital about 7 times in one year when I was 15-16. At that time I lived somewhere else and had doctor after doctor tell me that they did not know what was wrong with me. I was essentially hemorrhaging for 2 weeks at a time and would get a break for 2 whole days and then it would start again. I came back to the doctor that I had that was understanding and he told me that he suspected Endometriosis and put me on the DepoProvera shot, after trying many other Birth Control Pills to help with the symptoms that I suffered from. He said that it would help to maintain the illness and keep it from growing. (WRONG)
Fast forward to 2004, The pain had gotten so bad and the Depo Shots were no longer effective. The shots were supposed to be given every ninety days, and I was having to get them every sixty and I was still having a monthly, which hadn't happened for the many years I had taken it. I found a really good female Doctor at Baylor in Dallas. She was kind and explained things in a familiar and funny way. For instance, I had multiple cysts on my ovaries and she explained to me what my ovary SHOULD look like on the sonogram and what it DID look like. "You ovary is supposed to look like a chocolate chip cookie, with more cookie than chip. You have WAAAAAY more chip that you do cookie." LOL That made sense to me and it made me laugh, which is a hard thing to do when you are in so much pain. She ended up doing a lap surgery and found that I was a Stage 4 Endo sufferer. She said that they found it on every organ in my abdomen. As good as the doctor was, she did not have the knowledge to remove the endometriosis completely, and therefore made it worse for me in the long run.
After that surgery, I had no funds to keep going to the doctor, as now I had a pre existing condition. I was unable to acquire ins that would cover my treatment, so I lived in agony until 2013. By this time, I had had a miscarriage (April 2007), and had not been to the doctor since 2004, so no pre existing. My husband and I had been trying to get pregnant since our miscarriage, with no success. The pain and complications had gotten so severe that I was ready to shoot myself. Dying would be so much easier than going through the pain up to 2 times a month. Mind you, the pain is not only when I have my monthly visitor. It lasted for weeks. It messed up my bowels and caused pain with marital "fun", which wasn't so fun. I would sit in the living room and cry, and run to the bathroom and cry, puke, and be on the toilet. Imagine you are on the toilet with diarrhea and you have a waste basket in front of you because you are vomiting too. Sounds fun right? Well, add being in the worst pain that you can imagine. After I would get off of my monthly, I would get extremely constipated and then out of nowhere would have to run to bathroom with diarrhea (another wonderful side affect of Endo)
I was able to get on my husband's medical ins through his job at the beginning of this year. We had finally paid off some of our large bills and were able to afford the premiums. I did a Google search for a gyno that specialized in treating endometriosis. It brought up several names, but only one woman. (I prefer women because I was unfortunately raped as a child, and feel uncomfortable with men doctors) I made an appointment and went to see her. I described my situation and all of the complications that I was having. I even told her that I was to the point of wanting to die because the pain was so unbearable. She looked at me and told me that I was "normal", having cramps like most women, and sent me home with a years worth of Aleve. Yeah, ALEVE. I walked out of her office furious. My husband was even more upset than me. He knew that what I was going through was not "normal". He has a mother and 2 sisters, and he had never seen anyone in agony the way that I was. I joined a support group on Facebook, because I knew that I was NOT NORMAL, and was referred to Dr Dulemba. He is a real Specialist that treats only women who have Endo and the complications that results from having endo. I made an appointment with him and saw him at the end of March. His sonographer did a sonogram and found a endometrial mass on one of my ovarian tubes and saw that my ovaries were not moving, meaning they were adhered to something else in my abdomen. We set  up surgery for April 3rd and he found that I was far from normal. On the post op report it is said that my anatomy was unidentifiable due to every organ in my abdomen was adhered together and they couldn't tell one organ from another. Dr Dulemba was given permission to take pictures to use as a teaching tool. He said that when he got in there, it was so much worse than he had originally thought, that he did not have time to take pictures. He was more focused on getting me ":fixed" than anything. He also told me that there is a point system that they use to determine what stage of endometriosis you have. You reach a Stage 4 at 40 points and he quit counting at 72. He found that I have Adenomyosis, which happens when the endometriosis penetrates the uterine muscle. The only way to treat the adeno is to have a hysterectomy. There is no cure for the endometriosis. Dr Dulemba excised the endo, which is the best treatment available for this illness right now. He disconnected all of my organs and patched me back up. He attempted to keep the adhesions from coming back, but he suspects that some of them have returned.
Needless to say, I am now at a point where I am going to have to fight with the insurance company, United Health Care, because the hospital that my In Network doctor uses, is Out Of Network. The hospital bill is over $177,000 and UHC is only willing to pay a little over $34,000. So now, I not only fight my body and the pain, I have to fight the insurance company. I HAD to have this surgery. It wasn't something that was an elective surgery. I need another surgery because I am having major issues with pain and trouble with severe constipation. I am not able to have the surgery because I owe the hospital over $140,000 and the ins has informed me that I am close to my yearly max, though they aren't paying that out.
I am considering a hysterectomy because I have no quality of life. I am not able to do normal, everyday things. I can't do dishes, wash laundry, vacuum, or play with my dogs. I can't have a marital relationship with my husband, so can't get pregnant, even if it were possible.

No one should have to deal with this.This is torture. I am being punished for being ill, for getting the necessary treatment, and for wanting to be a productive member of society. I would love to be able to go to the lake with friends and family, to Six Flags or Hurricane Harbor, or even go outside and help with yard work. I spend my days inside my house, hiding from the world. How is it fair? I know that life isn't fair, but this is beyond unfair. There is no reason that women should have to live in fear and agony. My hope is that this march will bring more awareness and many more changes to the medical community and how they treat us. We are passed over and pushed aside as though we don't matter. Some of us are no better than some cancer patients. No we won't die from Endometriosis, but we can die from some of the complications. Some of us, like me, suffer from severe pain. More women suffer from endo than are suffering from Breast Cancer (my grandmother is a survivor, so I am not trying to take anything away from it's importance), yet little attention and/or knowledge is focused on this illness. I think it is time there is and there are atleast a million other women that agree with me.

If you are interested in going to this event, please visit http://www.millionwomanmarch2014.org/ to see how you can participate. If you are planning on going, please visit my website and buy a scarf to wear to the event. A portion of the proceeds will be donated to help. Barbara Page is getting all of the information available to make this scarf the Official Attire for the March for Endo 2014!

Thank you for reading and I hope that you walk away with a little more knowledge about Endometriosis. If you know a young lady/woman that is suffering from painful periods, please don't think it is "normal". Pain is your body's way of telling you that there is a problem. Don't ignore it.