Short Update

I talked to the doctor's office today since I still haven't started my cycle on the progesterone. So here is the plan: going to stop the progesterone and my cycle should start soon, take Clomid days 3-7, ultrasound on day 12 if no dominant follicle another ultrasound on day 15, hopefully with one of those we will see a dominant follicle. Once a one is found, I get an hCG trigger shot to do just that trigger ovulation. Hope for the best and start the progesterone again. I am so incredibly grateful for the amazing staff that takes care of me and is trying just as hard as we are. Sometime this gets to be a lot to keep track of but hopefully it will prove to be more than worth it.  

Emotions and More Meds

I haven’t written for awhile both because I have been so busy and second nothing much has changed. I started writing last week so the following paragraph is from that.

I’m angry. I’m depressed. My body, mind, and heart hurt. And it is okay that I feel this way, sorry but I really don’t believe anyone can be happy all the time. Without the suffering and the heartache the best moments in life would not be as special. The stress of all of this is a lot to bear and I’m so blessed to have an amazing husband that is with me every step of the way. He allows me to deal with this how I need to even if it isn’t the most desirable way. I so sick of the “God will give you children when it is time.” I know God has a plan for me bigger than myself; I have had to grieve the lost of my own plan to God’s more than once in my life. I get that, and I don’t regret the choices I have made. But I also cannot sit back and wait on God without any effort from myself. As with anything, nothing will happen if you don’t put effort into it.  So that is why we continue to push on as long as we can.

That was certainly how I felt last week and although I feel better emotionally for the time being it is easy for those feelings to creep back in. My mind was every which way last week and my dean and some of my professors were understanding and able to give me a little more time to complete some of my school work. I felt like such a wimp for asking for more time, but that is really what I need time to deal with this and not make decisions out of haste. If there is one thing I have learned in my short 25 years is that you have to know when to ask for help, and admit that you are doing too much. It is a lesson I learned the hard way over and over and still have a hard time with. So although I may feel uneasy about my condition it may be the first time that I have made a conscious effort to take care of myself first.

After the news from my doctor I focused on resting and getting the stuff done for the three classes I had to finish in the coming week. Tuesday, I had a Hebrew test which has been tough for me this semester (got coney dogs and corn nuggets at the dining hall thoughJ). After a stressful test I got another call for the doctor suggesting that I start progesterone suppositories to help jump start my cycle and then continue them after we find a dominant follicle to help with possible implantation. This medication is also not covered by insurance and has to be compounded so it is a little pricy but still manageable right now. I started the progesterone on Friday and I have to say I am not thrill about another medication but seem to be doing alright, I’m a little more tired but nothing too bad.

Jeremy and I also got to spend this weekend at Kalahari with his family for Christmas. It was good to see them and for Jeremy to have some time to relax. And they got me a Kindle and Amazon gift cards to load it up with! It was nice to have a mini escape from reality but now it is back to the real world. 

Ridiculous

Ridiculous has been my word this week. Mostly because I feel like many things in my world are ridiculous at the moment. Last week the side effects of my medication got the best of me; beside the headache I also had an eye issue. I think it was a combination of the meds and my contacts, whatever it was it was not fun. My eye got really red throughout the day Wednesday and I really thought it was pink eye (I have had it a lot) but it was really interfering with my vision. By the time I had to go home, I could barely see out of my right eye. So I drove home with a post-it note over it, probably not the best decision I ever made. Even after I got home and took my contacts out it was getting worse, I had what look like a blister on my eye lid and it hurt to look at anything. This incident caused me to miss Thursday classes as well, getting me behind with only two weeks of school left. Sigh. Therefore I feel like this last official week of classes has been ridiculous. I have three papers to write totaling 32 pages, a Hebrew final (which my prof has made clear I really need to work on), and a presentation. Ridiculous. I’ll get it done I always do but it is hard to deal with on this emotional roller coaster.

            This week I had a progesterone test on Tuesday, which I did not expect much since the ultrasound was not what they like to see. I took an ovulation test when I got home and got the closest thing to positive I have seen as of yet (fyi ovulation tests are much harder to read than pregnancy tests). I was feeling really good about this cycle that perhaps we would get the best Christmas present ever. Even people that I am not particular close to have given me words of encouragement for this cycle, yet another reason I am so glad that I do not keep silent about this struggle. I was pretty optimistic until today. I received a call from my doctor’s office, I was unable to answer the first time she called but I could tell by the tone of her voice on the message that it was not good news. I was kind of glad I heard the voicemail and then had a few minutes before I was able to call her back, it help me prepare myself for the worse. When I finally did get to speak with the nurse she told me what I feared, the ultrasound was worse than I thought. Not only was my follicle size small, there was only one viable follicle on the left ovary. The results of my progesterone test we also not on par, so we jump ahead to thinking about the next cycle. She said that the medication will be doubled for next time around and since the highest dosage available in one pill is what I took this cycle, that means two pills a day.  The actual taking of the medication does not bother me; I have swallowed more than my fair share of pills. It is the idea that the cost of this venture never stops.  If I am taking two pills a day that means I have to pay twice as much for my medication. Ridiculous. And then there are the effects. If I am this emotional on this dosage what is going to happen when it is doubled? Thankfully I will be on a very long break from school this time as I do not go back until February. I’m still a little hopeful that this cycle could have a positive result, it only takes one egg and I believe in a God that still performs miracles. In the mean time I will work like crazy on school work, take a break tomorrow to spend the day shopping for myself with my mom, and maybe get my husband to take me to see the new Narnia movie (he said I had to be caught up with my school work). So, maybe not everything is ridiculous.   

Results

So the ultrasound results were less than desirable. They would like to see the follicles at 20 mm and my largest ones are at 13 mm. It is not horrible news as they could still grow before I ovulate but it was disappointing. I’ll do a blood test on day 21 to check my progesterone level along with at home ovulation tests. If this cycle does not result in a pregnancy we will probably reevaluate my tests and up the hormones. I think the effect of the test results were exacerbated by my physical exhaustion lately. My body has been sore and I woke up with a horrible headache today, making it difficult to do anything. I’m trying to be optimistic and think that it is my body making eggs, but it is hard to be when I am missing school and life in general. I need to push through these last few weeks of school (which are always the hardest) and try not to worry about the things I cannot control. Easier said than done.  

Nerves

I’m a little nervous. Tomorrow I’ll have an ultrasound to check follicle size, basically to see if the medication is doing what it is suppose to. I’m nervous because there is absolutely nothing I can do, and I want a good result more than anything. I have been fatigued, dizzy, and sore. My body is starting to feel like it did just before my surgery, when I was so hopeful for life changing results. I sure did not think that in less than a year all the symptoms would have returned. This just adds to the nervousness. So tonight I am praying for the strength to go one more step so I can face the next 99.  

Is It Worth It?

I have started my second round of Clomid, and I’ll be honest the past few days I have really wondered if all of this is worth it. The pain from cramps is almost more than I can bear, although I have endured worse in the past I know don’t how much longer I can do this. Endo has a way of gripping my insides and making me feel less than myself. For days I have wanted to curl up in a ball and disappear, I wear sweats and drink water while wishing I had strength to enjoy life to the fullest. I have been blessed enough that my cycles have fallen at times when I have had breaks from school. I don’t know how I would deal with driving to and from school and all of this.

            So to answer the question, “Is it worth it?” at the moment it is but for how long it will be I do not know. This is a one day at a time, one cycle at a time kind of thing. That is difficult for me because I like to have an idea of where I’m heading, but the reality is most of the time I don’t know. This process is more tolling on my physical and emotional well being than anything else I have yet to experience. And as I have mentioned it is also tough on our finances.

            The insurance company has denied many of our past claims, even though they were diagnostic and not treatment procedures. I talk with both the insurance company and people in billing offices and it seems there is not a lot we can do because all my records indicate that we are trying to get pregnant, no matter how many times they write endometriosis on the paper. It is not deemed medically necessary. So I fill out paper after paper to get any help I can. My midwife would like to do an ultrasound on cycle day 12 to check follicle size, and I would love to do one as well just to see if this stuff is working but insurance might not cover it. I’m not even sure if they will cover my progesterone test on day 21, a simple blood test but when it becomes an out of pocket expense it isn’t so simple anymore. I know having a child cost a lot but who ever thinks that getting pregnant will cost so much? That it would cost more than just money, it would require physical, emotional, and time compensation with no guarantee.

            Here are a few other things I’ll share with you. I recently read an article discussing how the presence of endometriosis symptoms during the teens maybe a precursor for the “most extensive form of endometriosis.” It was a short interesting read, although I think they should consider a different abbreviation for deep infiltrating endometriosis.  And my song this week has been “What Faith Can Do” by Kutless. It is one of those songs that every person can relate to. It reminds me that we aren’t going to give up on the biological baby road just yet; we have faith that we can receive a miracle. We can do the impossible (we have before) and overcome the odds.   

Disappointments and Hopes

So it has been a while since I wrote for a couple reasons. First, I took a trip to the warm state of Florida with my brother in hopes of seeing the space shuttle launch. I was disappointed, we were so close and then “no-go.” My brother did get to experience Disney World and the ocean for the first time though, so the trip wasn’t a total bust. Second, we are into the second half of the semester. Therefore school is taking up a lot of my time lately, especially with last week being less than productive. Now I’m debating whether I go back November 30^th to see it the shuttle launch. I really can’t afford to miss anymore school but this is a once in a lifetime opportunity, there are only two launches left. It is a tough decision.

            Anyway on to the infertility battle or the baby train as I like to call it. I finished my Clomid and did rather well physically (or better than I thought) however emotionally I think I took it harder than I thought. I did ovulation test for over a week with no luck and then I was gone for a week so didn’t see the point and wasting money to pee on a stick. I’ve done a few since being back and nothing, so I’m not sure if the meds work or not. Given that it looks like I will be starting a second round soon, if my body cooperates. This will probably be a higher dosage so greater risk of side effects, just in time for the last few weeks of school.

            Besides all that fun stuff the insurance battle is raging on, I am still being denied benefits for diagnostic procedures. We will be going through the available channels to see if we can get the claims reversed, it may take awhile. So if you know anyone that is really good with insurance benefits or an insurance claims attorney let me know.

            The good thing about not having much time is that I don’t think about this whole process as much, although still more than enough. Let me tell you, Disney World is not the place for an infertile woman. There are pregnant women and babies abound. When I saw either I would try to think about the fact that I don’t know what the parents had to do to get to the place they are. They may have had to try for months or years, or done several different fertility treatments to reach the point of having a baby. I know that about 12% of couples have trouble getting or staying pregnant so many of the women I saw probably did not have issues but it made me feel better about the fact that they were able to have such a special gift. To know that just one of the women I saw had struggled to have something that comes so easily to others and was now living that dream is a comfort. It gives me joy for her and her family that they have finally reached that goal in life and it gives me hope for myself that I may one day have it too.

            Life narratives are another thing that I have been thinking over as well. I’m currently taking a class called “Trauma and Narrative Pastoral Counseling” and obviously narratives are a large part of that. In his book Hope in Pastoral Care and Counseling, Andrew D. Lester describes how despair breaks down the hope process and narrative therapy (basically the retelling of our stories) creates meaning making. One of the case studies in his book actually deals with an infertile couple and has been helpful. It has shown me that at this point I need to create several future stories, one that contains children in the near future, one that contains children later in life (biological or adopted), and even one that does not contain children at all. I have infertility, I am not infertility. I have endometriosis, I am not endometriosis. To create meaning in my life I have to understand that I am more than a want to be mother and there are many successful, rewarding, and enjoyable paths that I can take from here.        

Swinging

Today I’ll take my last dose of Clomid and hope that it does its part. The hardest element is that I don’t feel like myself. I feel like I’m in some kind of bubble floating above reality, like I can’t fully grasp anything. I have experienced some of the physical side effects of the medication, but it is hard to tell if the mood swings are from the medication or just the process itself. There are so many components to infertility, I feel like I always have to be thinking one step ahead. I am a place that I cannot really explain to anyone, and there are moments where I wonder if it is all worth it. It is hard to deal with the things people say about having children and I know there are people that disagree with our choice to pursue fertility treatments. At times I just want to tell people to shut up and listen for a few minutes, but in reality I shut up and let them say what they want.

            Ignorance really isn’t bliss, and it reminds me of the reason I started this blog. I don’t want to hide from infertility or endometriosis, I want people to inform themselves and be open to talking about these subjects. People that struggle with these issues are not searching for pity they are looking for understanding. I know no one will fully understand where I’m at just as I’ll never fully understand someone else’s life, but just listening to my struggles does more than you know. I have been trying to live this out myself and to look at life through other people’s eyes, not jumping to conclusions. Everyone has a story and we learn by telling those stories.    

            I struggle with the fact that I have little control over this situation, and if the circumstances were different we might not even be trying to get pregnant right now. I feel like we are in a race against time or at least endo, and I don’t like our odds. So we keep on keeping on. There are days where I hate this process but I’m not going to stop. It reminds me a lot of my academic career, I never thought I be where I am today. I did what was thought to be impossible in undergrad by double major in mechanical engineering and youth ministry. There were many times that I wanted to quit but with the support of my husband and the desire to overcome the odds, I made it. I wasn’t initially planning on going back to school but here I sit with books to read and papers to write. I do not know what the future hold for my career or my family but I cannot fear the unknown. I trust that God has a plan for us but I have to do my part as well, I cannot sit back and let life happen without me.   

            This week brought about another reality of infertility, financial burden. Our insurance company sent several statements indicating that they would not cover the diagnostic tests that were performed before my diagnosis. Although, it seems to be a misunderstanding at the moment (insurance normally covers procedures up to the diagnosis) it was a reality check. Most insurance companies do not cover infertility treatments and as the process goes on the costs rise. It is difficult to justify paying for something that is supposed to happen naturally and is not “medically necessary.” Again we do not how long this struggle will last for us, but we continue to hope for the future.  

Change of Plans

Well I guess my body had different plans yet again. My cycle started yesterday which has been a blessing and a curse. This means that I don’t have to take the Provera, which I is good even though I was mentally prepare to. The bad is that this is hands down the most painful period that I have had post surgery. I been experiencing intermittent cramps for about two and a half weeks but then they got significantly worse, but I’ll be honest I did not pay a lot of attention to them. Today the pain is almost constant, one I know all too well. It is the reminder that endometriosis is still with me. As unpleasant as this is, it is excited to know that I’ll be starting Clomid soon. And if need be we could possibly get three rounds in before the end of the year.

            I wanted to acknowledge that my blog can at times seem pessimistic. The first reason for this is probably because I am not the optimist of the family that is my husband. Without him, I would not be where I am today or be the person I am. He never lets me give up. I like to be prepared for the worst and hope for the best. And I am not approaching this journey any differently. I honestly thought we would be pregnant by now, and then I thought we would be on our second round of Clomid by now. That is not how it worked out and for my own sanity I have had to step back and evaluate how I’m going to handle this without continually setting myself up for disappointment. Some of it is unavoidable; no matter what every time I take a HPT I get a little anxious. I just know myself well enough to know that I need to mentally prepare myself for a variety of outcomes.

            With that said I wanted point out some of the things I use to help me through all of this both endo and infertility. As of late my commute to school has been helpful, I have an hour and fifteen minute drive one way three times a week. As crazy and draining as that sounds it gives me much need alone time with God. All this time in prayer has assured me that none of this is my fault (or anyone else’s). I know we will have a family at some point, just don’t know when or how. I have also come to the conclusion that it is okay to not be happy or content with our current situation. The desire to reach the goal of having a child is what keeps me going on, and I know that God will be there every step of the way. Rob Bell’s book Drops Like Stars: A Few Thoughts on Creativity and Suffering has been an inspiration as well. It really allows for the reader to look at the difficulties of life in a new light but also make their own conclusions. He stresses how suffering can break us down or make us something new, that when we tell our stories it is usually the suffering that has shaped us and that connects us with others. He does such a better job at expressing this and the artistic creativity in the book is amazing. It is a short, thought provoking read I recommend. Another thing I usually do is pick a song or two on my way to school each week that expresses how I feel. This week’s song has been Hope Now by Addison Road. If you have a few moments check it out.

            I have friends and family that have been helping me through this every step of the way. And have listen to me ramble about it over and over again, but it has been wonderful not to carry this burden alone. I have also joined an online support community because it is helpful to talk to people that have been where I am or are there themselves. And I have to say that Jeremy has been amazing through all of this. I tell him everything, even the things he would rather not know and he takes it all in. Sometimes I think he remembers things about my body better than I do. I couldn’t do any of this without his support and comfort. He deals with my moodiness better than I do.

            I also want to say that I have the best OB/GYN group in the world. I usually see a midwife, unless I need a surgery or procedure done, and Monday she called me just because she heard I had some questions. That is so amazing, I was able to talk to her for a few minutes and she is very understanding. She said, “We are doing all we can, and I know all this stuff can make you crazy so hang in there.” They were encouraging words after spending years not being taken seriously. 

I am going back to a gluten-free diet to deal with my Celiac disease or gluten intolerance. It is thought to be a related disease to endo, and it is something I struggle with. I have slack off in the past few months even though I know that I feel better if I keep my diet gluten free. It becomes an annoyance and honestly I have trouble justifying spending three to four times as much on a gluten free option. But I know if I want infertility treatments to work as smoothly as possible I need to take better care of myself.

            I am thankful that fall break has started, so I can catch up on school work and sleep but also relax when I need to. I don’t know what the months ahead hold but I know with love and support I will make it through. 

Endo and Me

I have something growing inside of me and it has a life of its own, but it is not a child. It is endometriosis. It is my worst enemy, yet it is with me every moment. It tries to control my life and unfortunately it often succeeds.

            I have suffered from endo for over 12 years, and over that time I have experience all of the symptoms associated with the disease. I have sat in the E.R. as a woman has told me, “It’s just your period,” or a doctor has said “I think you are constipated.” I was told I was weak, had IBS (irritable bowel syndrome), the flu, or worse. At 19 I had to have a dilation and curettage for heavy bleeding. I spent six years on various different types of birth control simply seeking relief. I have lain passed out on the bathroom floor from the intensity of pain, and waken up wishing I could die. I’ve missed events because I knew there would not be hourly bathroom access. I dropped a quarter of school because the pain and affects had consumed by body and I have taken a slew of medications in search of anything to function as “normal.” I continue to endure other related medical conditions as well.

            I said this to shed light on this disease; over 5 million women in the United States suffer from endometriosis. There is NO cure. We have been taught not to talk about our “woman issues,” that cramping is normal you just need to suck it up, some women bleed heavy, and no one gets pregnant right away. And for those reasons it is believed that millions still sit in silence and pain. The only way to prove the present of endometriosis is through laparoscopic surgery where adhesions can be identified. There are various treatments but many bring on more issues than they solve, a hysterectomy may provide relief but does not necessarily eliminate recurrence. In essence the battle with endo becomes a life sentence.  

            At the moment I have decided to hold off treatment in the hopes of starting a family. Endo is one of the leading causes of infertility making the pursuit even more difficulty (though not impossible). The realization for me as of late is that it is growing back faster than I ever thought it would. I can feel it making its presence known daily and getting progressively worse. I try several things to relieve the pain, most of which consist of denial. Although, I had a HSG (hysterosalpingogram) to make sure my tubes were open (which was an experience in itself) it does not take long for the endo to settle in an area. The frequent pain is a reminder that we are working with borrowed time and keeps me praying for the endo to stay at a minimum.   

Let the Hormones Begin

            It seems my body has decided to be even less cooperative than before. It has been over a month since I was prescribed clomid, and almost 60 days since the start of my cycle. Clomid is use to make a woman ovulate and is started between days 3 and 5 of a cycle.  I have been anxiously awaiting the start of my cycle and renewed hope to start a family. I was hopeful that we had gotten pregnant on our own, but with multiple negative tests I was realistic that it wasn’t likely. Yesterday, I had a blood test just to confirm and sure enough it was negative. Since my body has been unable to start a cycle on its own that means more hormones. I was prescribed Provera, which is medroxyprogesterone. Basically it will “trick” my body into starting a cycle, and I am excited about that (who would have ever thought). What I am not excited about is the side effects. If you know me well enough, you know I research the heck out of everything and anything, which of course I did a long time ago when I thought I might have trouble getting pregnant. As with any drug, side effects vary but for goodness sakes pumping the body with hormones isn’t fun for anyone. There are over 20 side effects listed by the manufacturer alone. And to top it off shortly after I stop the Provera I’ll start the Clomid with no guarantee.

            I want to stop for a second and address the fact that I am not looking for pity. I feel very fortunate that I have these resources available to me and many couples have been trying much longer than we have. The reason I started this blog was as a sort of self-therapy and to raise the awareness of how common this issue is. Many women (and couples) that struggle with infertility live in the shadows with their difficulties. They fear the judgment that comes with fertility treatments from so many people, the unknowingly hurtful comments people make, the blame (that this is somehow their fault), and the general misunderstanding. This article from MSNBC does a great job of addressing the silence and the affects it can have (and the confrontation that goes along with the subject follows in the comments). And Mary’s journal  states some of the insensitivities that come with infertility. We haven’t even been on this journey a year but have already experience some of the hurtful reactions from people. These are the reasons I have decided to not be silent about our struggle, like anything we can only learn if we share. Some people are insensitive because they are ignorant and others because they simple don’t care. My story is only just beginning and the infertility may be short lived for us or it may last for years. So I hope some will use this information to further their own education on infertility, to share their story, or just know they are not alone.

            Right now I’m trying to time my medications for times when I’ll have a few less responsibilities and can just be “moody.” I’ll let you know how it goes.    

The Beginning

As you may know I have endometriosis, officially diagnose January 2010. Unfortunately it took over 11 years for me find a doctor that would take me seriously and even look for endo. For those of you that don’t know what endo is, I’ll give you the simplified explanation. Endometrium is the uterine lining that is normally shed during a woman’s monthly menstruation. When a woman has endometriosis the endometrium grows/develops outside of the uterus causing multiple health issues and pain. It has a way of making the desires of life more difficult to obtain. I have experienced a majority of the symptoms and problems created by endo. Without a doubt it has made my life more painful and stressful than I ever planned, but then we all have something like that.

For a few years before my diagnosis my husband and I had a good hunch that I was suffering from this relatively common disease. I took it upon myself to use birth control to regulate my symptoms as much as possible, by taking months of low-estrogen pills without the placebos in between. This could not be a solution since I was starting to experience side-effects from long term use and my “baby button” was going off. We knew that we had to have the endometriosis official diagnose before I could even think of going off the pill. After tons of blood test with more than my fair share of lab errors, surgery was schedule in late January. I had a laparoscopic (very small incisions) to confirm the presence of endo and obliterate what they could see. The surgery went well and the recovery was fairly smooth. At the post-op appointment, we discussed the idea of having children with my OB/GYN and she said it was actually a great time to try. We knew everything was clean for the time being and pregnancy would delay the growth of endometriosis. That was eight months ago.

Endometriosis has continued to let it presence be known. Even after having the endo removed, I continued to have irregular cycles. This has made conception difficult, leading us to now. My amazing OB/GYN understood the concern and we did the usual infertility testing, some going better than others. Infertility is yet another symptom of endo. Overall there does not seem to be any indication of a serve problem. I always thought I might have trouble getting pregnant but now to be in a position where it is reality has been hard. Right now we are waiting to start Clomid, usually the first try at infertility treatment. I’m hopeful that it will work but at the same time I don’t want to set myself up for disappointment. I know about 40% of couples have success with Clomid and hoping we can be in that. I also know couples try from years to conceive. I just never wanted to have to use alternative methods to have a child. It takes a toll on a woman emotionally, mentally, physically, and financially. I am blessed to have a husband that I know will stand through all of this with me and will do anything for us to have a child, someone that will try to keep me sane and support me even when I’m acting less than myself. But I know that it takes a toll on him as well. I really believe this is part of my journey something that I have to make the most out of, even though it is difficult for me and those around me.