Ignorance and endo

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

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

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

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

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

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

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

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

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

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

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

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

Relationships and Endometriosis

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

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

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

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

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

My cycle Day 22

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

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

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

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

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

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

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

It is amusing the looks of disbelief

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

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

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

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

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

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

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