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.