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. 💛

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.