Dealing with Endometriosis, PCOS, Adenomyosis, low ovarian reserve, and a hostile uterus. Struggling to maintain a normal life while taking this journey. Putting my trust in God and hoping my writing can help others in similar positions.
Sleep, how much is really needed? I always say it is overrated, but I never mean it. I only say that because I get so little sleep. I have had a problem sleep for as long as I can remember, but the last few weeks it seems to have gotten horrible. I tend to only get maybe 2 hours of sleep each night. It has left me fighting with migraines and just an overall feeling of pain and tiredness. Due to my husband's change in jobs and change in insurance I have postponed going back to my OB/GYN and getting a follow up on my last few test. I didn't want to start any new treatments and then have to change insurance in the middle.
Anybody with endometriosis have the same problems with sleep? Today for the first time in at least 3 weeks I was able to get a solid 6 hours of sleep. It was amazing. I woke up and felt wonderful. Sadly, a small part of me is also sad knowing that I still do not feel as well as I could. I still have not gotten "enough" sleep. I wonder if I ever will. I know people with children do not get enough sleep either, but at least you have a child, and in your sleep deprived status you still feel better then on my best days.
Today is my birthday so even though I am frustrated that I can't have enough sleep I am happy that I got as much sleep as I did. It was one of the best birthday gifts that I could have ever gotten. That gift was slightly ruined though due to the fact that I had to drop my husband off today so that he could be out of town for a week. It has been a bittersweet birthday so far, but I am thankful for my sleep.
If you know of anybody or if you are somebody with endometriosis I would love to hear about your story. Please comment about how your sleep patterns have changed, or have not changed.
It is so funny how life can be at times. In just a moment your life can change. Most of the time it seems that it can be a challenge to maintain a happy and joyful view of life. It amazes me how much this one small disease has changed my life. When I first learned of my endometriosis I had a lot of hope. My doctors gave me a lot of reason to hope for a future of children, but as time went on my doctors have seemed to have lost hope. My current doctor has not ever said that, and I am not sure he will until the day we have to make the choice for me to have a hysterectomy. I have undergone numerous treatments and test, many that you have read about, but many I have still not had the chance to write about.
The last few times I have gone into the doctor he has been very brief and unable to give me more information. It has been discouraging. He is hoping to lead me to a treatment that allows for children, but he cannot promise that. Watching his change in how he talks to me, and how is hopefulness has seemed to have disappeared has taken away a lot of my hope. How am I suppose to maintain hope when my doctor does not even have the hope?
I try to stay an upbeat and positiver person through all of this, but I struggle with it daily. I am struggling to accept that I may never get to have my own children, while I have to see all around women becoming pregnant when they have no ability to mother. I struggle with this daily. I have to doubt myself during those times, since I know I have something greater than a doctor on my side. I have a God, who can make anything happen. I wonder why I am unable to have children. Is it because I actually will not be a great mother? Is there something wrong with me? I have to work at not allowing myself to dwell on these thoughts and to continue to have hope.
Pain has become a way of life. I have tried diets, medicine, heat, and cold. I have tried so many different things that I cannot even remember them all, and have repeated many things, hoping that maybe this time it will help. There are times that I think, if only my pain was gone I would have the belief that God will provide me with children. My pain causes me so many problems. For one thing it is a pain. I have so much pain that I can barely walk each day, yet I have to keep living my life, which does include walking. Some of you may not care to know all the details that the pain brings, but as you know I am married. It does create a lot of problems. I have no idea how I was so blessed with such an understanding husband, but how is it right that he to has to suffer? He reassures me daily that he does not suffer, but it is not right that many times I cannot be in the mood for him. Many times I have to desire to be close to my husband, but I cannot because of my pain. There are times I think it won't make it worse so why not. I do love my husband and have the desire, but in the end my pain is made worse for hours after and I wonder if it is worth repeating, which doesn't help for the next time and doesn't help me be aroused for the next time. I apologize now if this is information that you did not want to read about.
One of the hardest things to work through is the lack of understanding people have to for endometriosis, even with those who have it. Every case is different and the doctors, and everything you read online make that very clear. Some of those with the disease believe that just because one treatment helped them, that it will help everybody, so when you inform them that it didn't help they just get confused and start to assume you did something wrong to make it not help. They tell you to try it again (even though you already tried it again, and then also again, and many times again after that), they make stupid comments that basically show that they do not care since all they cared about is that they got relief. Some of them are even naive enough to believe they are cured, but there is yet to be a cure. There is only a hope to control. Those without the disease lack understanding, and while they may want to sympathize, forget to ask questions. I have not understood fully why everybody does. For some the fear of looking stupid for not understanding prevents the questions, for some it is lack of caring (nothing is wrong with the, so they don't care). Many people forget to ask their loved ones with this problem how things are going, if there is any progress. For some I am sure they may get tired of asking somebody when all the answers given are negative. For those of us fighting with endometriosis it can be a great encouragement to be asked how we are doing, not just find out if we have been able to gain control, but how we are dealing with the disease. It is so easy for many of you to just tell us, we are praying and not give us another though, but remember, we are hurting, not only with pain, but with the emotional problems the pain brings about. For many of us endometriosis, not not just bring about pain that we have during our normal daily activities, but has taken away and changed many of our daily activities. Endometriosis has taken over our lives. Do not be afraid to ask those around you with this how they are doing, and be willing to actually listen to them, and don't be afraid to ask for more details clearly explaining what they are saying.
People are funny beings. I have been amazed at how some of my best friends do not even know how much I struggle, because they never cared to ask. They know I have endometriosis, but that is it, they haven't even bothered to ask what exactly it is. They know I may never have kids, but I bet for the most part they do not even understand that. They just assume I will have kids and it really is not that big of a deal. These again being some of my longest and best friends. Then there are others who I have not know that long, who I am not exactly close to, but they take the time to ask how I am, to understand what is actually going on. Maybe it is easier to ask these questions when it is somebody not that close to you. If you have loved one suffering make sure to talk to them, even if it is hard to hear about how they are hurting. It can actually help them and take away some of the pain.
"This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us. And if we know that He hears us - whatever we ask - we know that we have what we asked of Him" 1 John 5:14-15
It is weird how it seems to take forever for doctors to actually pursue Endometriosis. I am currently 25, but started dealing with this when I was 20, well earlier than that, but I didn't know it. It was winter time when I started having problems. I was shoveling a lot that winter (I worked at a camp and we had lots of snow that 3 of us just couldn't keep up with). Well the cold and the labor triggered my Asthma and I was not doing well with my breathing. Well this caused a lot of coughing, coughing so hard that I was throwing up and my abdomen was hurting a lot. I ended up in ER a lot, but after they were really not helping I stopped going and was just praying for the end of winter. After awhile I realized that I was still in pain and still throwing up, even though I was breathing just fine. So after I had lost about 20 pounds in about a week in a half I decided I needed to get checked out. This was the worst experience I had, because I had some pretty mean doctors. I also had nobody to go with me. My father and his wife were not on speaking terms with me, and I was single at that time. The reason it was a bad experience though is because the doctors I saw were mean and accused me of lying or being bulimic. I was told I was lying when I told them I wasn't having sex. It was all a mess, but finally I found a doctor who realized I was losing weight way too rapidly (at this point I could barely hold down liquids so life was pretty bad). Well they sent me off with acid reflux medicines and to a gastrointestinal doctor. This doctor was great, he asked a lot of detailed questions and even before he started running any test he said it sounded like I had endometriosis. He ran a bunch of test though just to make sure and sent me off to an OB-GYN. The first one I saw really didn't seem to want to be bothered with me, and told me that I didn't have symptoms to prove I had endometriosis. He was convince that the vomiting was from something different, because no case that he ever dealt with ever had sickness (even though I was told over and over again, no 2 cases are ever alike). He gave me birth control pills and sent me on my way. These did nothing for me, well I think they made me worse, finally after I came back to the doctor because with the BC I had been bleeding non stop for over 3 months and I had gone from a size 16 to a size 9 in small amount of time. (now I did start off at a large size, but I have rather large hips and so am not a small person by nature. I had not been a size 9 since I was in 6th grade, and that was with me involved daily in dance until my senior year of high school). That meant a size 9 for me at the time was bad. I had bones sticking out and I looked like I was starving (well I was). I found a protein powder that I could handle most of the time and did my best to hold it down along with a bunch of vitamins. Thankfully I had some good friends who helped in finding the powder for me. Finally this doctor decided that my bleeding was a big deal (but still thought my vomiting was something else) but he did a laparoscopy. However, he was in rush and didn't look around or take any samples of tissue and so he was done with me, convinced I did not have endometriosis. So I changed doctors, again. They didn't know what do to for me and sent me off. This place was good, they believed I had Endometriosis, but they just kept giving me different types of BC until they found something that worked, but they never found anything that worked. Finally during an ultrasound they say my scar tissue and realized I needed surgery again to remove it. They removed everything they could see without magnifying it, so of course they didn't get everything. After that they put me on my first course of Lurpon. It was awful, I had horrible side effects. At least I finally stopped bleeding, for about 2 months, but after that it was the same, I had all the same symptoms, plus side effects. I changed doctors again. This one was really nice, and cared a lot. I had no relief from them, but this doctor was taking time to document stuff. He learned that I was going through labor at times. He knew I needed to find some real help, but didn't know how to help, so he sent me to a specialist in Palo Alto. I saw this doctor a couple days before Christmas and had surgery scheduled by Jan. 2. He spent 4 hours on my surgery and removed everything he could, he took tissue samples and tried to clear it all away. He then started me on BC after the surgery. Things got better after that surgery, I wasn't in pain, I was eating again. (turned out I had scarring on my stomach as well as bowels, ect.) This did not last long though and it started all over again. Thankfully I could/can at least hold down food for the most part, but it has ruined my metabolism so keeping myself at a decent weight it impossible. I have a huge amount of clothing because of it, I end up fluctuating between size 12 and size 16. The last surgery was in 2008 I was dating Steven at this point and we got married in Nov. of 2008. He knew everything that was going on with me, and knew the ability to have children of our own may not be there. He has been great because he doesn't let the doctors ignore me. Well our insurance changed and was no longer accepted by my doctor in Palo Alto. I got very discouraged since it had taken so long to find this doctor so I took a long time before I found a decent doctor, but I found one. He is a great doctor. He is doing everything he can for me, and his top goals are for me to feel good and for us to have kids. In order to get to the kids part we have to gain control of this endo first. That is what I am currently dealing with. Shortly after getting married I started again on the Lupron, this time I did one shot a month instead of one shot for 3 months, and also for 9 months. This time it did work, as far as taking away my pain. Though the side effects were still severe. About a month after I was off of it though, my symptoms came back, and I started throwing up again. This discouraged me a lot. For now I will leave this as it is it. This almost gets you up to the present. I will be going back to the doctor soon, and hopefully will have more news. I have had a few other tests done, but will share those details when I know more of the result. For now I wait in pain and with little hope. I have always been a positive and hopeful person, but right now I am not, which is why I choose not to share more information for now. I am learning to trust, not in God, I have that, but in others.
Well it is time to write again. Sometimes I find it so easy to write and share, and other times it is the hardest thing to do. I get into this mood where I want to shut out the world and not share anything with anybody. Now I do tend to be in that mood most of the time since I am a loner at heart. I like to keep to myself. You all have now read a bit of my life. There is still so much I could share, but sometimes it is so hard to write about, not just because I want to keep things to myself, but because coming from the writer side it can just be hard to put into words. I also tend to not edit myself on this thing, since usually I will end up just deleting the whole thing and not end up sharing. I am holding onto a hope that this blog is helping somebody. I know it is helping me to grow and to learn to share. Lately things have been hitting me in a weird way lately. I am tired of all my hormones being messed up. It seems that everywhere I look I am seeing or hearing that somebody new became pregnant. I am seeing horrible people being given the gift of children. I cannot understand why this is okay. I know everything is in God's hands, but why? I have to stand by and watch good people try time after time and are not able to conceive while idiots are giving birth. I am trying to keep a level head about all that, and I believe I am doing an alright job at trusting God, but I know that I am doing a poor job of it. I don't think it is enough to know that God has a plan, I KNOW it, but why can't I trust it, and not just trust it, but be okay with it. Why can't I not just be okay with His plan, but also be joyful about it. Should it not be enough that I am a daughter of Christ and that I have a loving God guiding and protecting me who has blessed me in so many good ways. I will end this by assuring you all that I am okay and that I will be alright. I have my moments of doubt, my moments of sadness, but I have an amazing God, and a wonderful and loving husband who helps me come back and realize my joy.