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.

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.