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 

             

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.  💛

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. 💛

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.

Some Complications of My Endometriosis

Recently I posted to my crochet blog about my story and it was suggested that I start blogging about my endo experience. I was posting to my crochet blog because I am participating in the Million Women March for Endometriosis 2014 by making support ribbon scarves for everyone to wear during the march in Washington DC. Unfortunately I will be unable to attend because my illness keeps me from venturing far from home. I will be there in spirit and will be hanging around the necks of those that are able to attend. I think that is a big enough presence for me.

So, now for the reason for this post. Endometriosis doesn't just affect women during that time of the month. It messes with so many other bodily functions throughout the entire month. It can affect sleep patterns, mood, and cause bowel issues, just to name a few. I live with all three of the above. 

My sleep patterns are so wonky that I never know if I am going to be able to sleep or if I can stay awake. Am I going to be able to sleep for more than an hour at a time? Am I going to sleep for 10 hours and still feel like I haven't slept enough? Most of the time I am awake until 3 or 4 am. My stomach tends to think that night time is the best time to be a bother. 

My bowel issue is constipation. I have adhesions that adhere my uterus to my rectum and my ovaries to my sigmoid and cecum. When I have bowel moving through my intestines, it is hard and feels jagged, and feels like it is scraping against my uterus, ovaries, and the back of my vaginal wall. (If you can imagine something scraping its way through your intestines and hitting your organs on its way through, you can just imagine how much it can hurt.)  I have spoken with my endo specialist, Dr Dulemba, and he is almost positive that some of my adhesions have returned. It is extremely hard for me to get the bowel out. Since my intestines are being pulled in directions they aren't meant to go, you can understand why it would be hard to squeeze it out. The pain and pressure tends to keep me in a bind (punt intended) most of the time. The cramping can be unbearable. I feel diarrhea cramps and feel like I really need to rush to the bathroom, only to sit on the toilet and cry because I am unable to go and it hurts to try. 

Dealing with the mood swings. I have been diagnosed with severe anxiety. I couldn't possibly figure out why I would have severe anxiety (sarcasm, of course). It isn't like I have lived with severe pain, been dismissed by tons of doctors, or had to live with the fact that I can't live my life. 

I have survived a lot in my life. That is the thing that probably pisses me off the most. I was an abused child, physically, mentally, emotionally and sexually. Childhood was something I watched everyone else have. Now I watch as everyone else has a life as an adult. Pain has always been a factor in my life and I thought that once I grew up I could escape the pain that I had to endure as a child. Endometriosis took that dream from me. It tends to make you angry, sad, hopeless, and makes you feel guilty. 

I am lucky to have an understanding husband. He is beyond supportive. For over 7 years he has watched as this illness has taken more and more of our life from us. He goes to work everyday of the week and then comes home and does all the work around the house. That makes me feel so guilty. I should take care of him because that is my job. He does his job by providing for us and it is my job to take care of him and our home. I do good to get dinner ready by the time he gets off work, and there are more and more days that I am not able to even do that. I want to be able to clean the house, do the laundry, and give him a break when he gets home. I want to be able to relax with him and show him ;) how much I appreciate all that he does for me. Endometriosis takes that ability away from me each and every day. It takes its toll on how I value myself. He tells me constantly that it is beyond my control, and logically I know he is right. Emotionally I feel as though I am a burden. I cost so much money, and occupy so much of his time (not in a good way). He holds my hand and tells me that he knew what he was getting into when he got together with me and he wouldn't change his decision. I must say, he did know, because I told him exactly what he was getting. I didn't want either of us to get too invested if it was something that he didn't see coming and couldn't handle. 

It is just hard to sit and watch life as it passes you by. You watch everyone go to concerts, amusement parks, camping, or to the lake, and all you can do is wish you could join them. Your friends have children and go to school plays or ball games and post, on social networks, how excited they are to watch their accomplishments. You just watch and wish that you could feel the way they feel. 

I know I am long winded and can tend to be all over the place, but I believe that it is important to share all of this. There are others that experience these feelings of discontent with the hand that endo has dealt them. I know I am not alone. I hear the stories and sympathize completely. I write all of these thoughts and experiences in the hopes that I can let that one person, that feels like no one understands, know that she is not alone. She isn't crazy or lazy. She is important and matters. I found a blog that helped me and I think that it is only right for me to pay it forward. 

It is my hope that you walk away with a little more understanding and sympathy for the people that cross your path that suffer from an invisible and/or incurable illness. It is also my hope that if you suffer from endometriosis, you found a place to find the understanding and sympathy that you can't always get elsewhere in your life. 

Just a few things I didn't know

I thank you for visiting my blog. My name is Kristen and I live with Endometriosis. There are so many issues and complications that come with having endometriosis. With all the information that I have been given, over the 20 years of living with this illness, there are so many things I didn't know. I hope that this blog may help someone else that is living with and bearing through this illness.

I didn't know that endometriosis can cause a new and extremely painful illness called adenomyosis. What is adenomyosis? The way it has been described to me: it is when the endometriosis penetrates the uterine muscle and begins to grow within the muscle. There is no way to remove the illness from the uterine muscle. There are several treatments for the symptoms and only one way to get rid of it, a hysterectomy. I didn't know that it can cause complications with pregnancy. It can weaken your uterus to the point where your uterus can not support a pregnancy. Adenomyosis, adeno for short, causes severe pain before, during, and after your monthly period. I hurt for approximately 1 week before I start, for the 7 days of my period, and for a few days after. There is no relief from the pain other than taking pain medicine. The pain meds don't take care of it all, either. The pain meds are essentially a cheap bandaid that you can become reliant upon.

I didn't know that taking pain meds was going to be a way to have somewhat of a quality of life.

I didn't know that endo, adeno, and the complications of them both were going to prevent me from having children, doing laundry, washing dishes, going to the bathroom, and doing so many other things in life.

I didn't know that listening to my gynecologists was going to prolong my treatment, make things worse, and cause so much more pain. Who knew that my regular ob/gyn didn't know about an illness that is a female only medical condition? Who knew that my ob/gyn didn't know that giving me birth control was just masking the problem and not helping it in any way? Who knew that I needed to find a endo specialist to get the correct treatment to enable a better quality of life and have a fighting chance at having children?

I didn't know that I would be having a hysterectomy at age 32/33, and dealing with the fact that I will not ever be able to bare children. Menopause in my early 30's? Really? Yes, really.
I wish I would've known more.

I will write more about the symptoms, complications, and struggles that I, and others, go through while living with this incurable disease. I will do my best to find and accrue all the information that I can find about the facts and myths of this illness. I want so badly to prevent at least one other person from trusting the wrong information and missing out on life and losing the choice to have children or be an active participant in their life.