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Tuesday, July 22, 2008

Things People Say...

I have shared the following items with several close friends and family and thought I'd put them up on the blog for other folks to see. Innocent comments and genuine showings of support can become more hurtful than helpful at times so it's nice to be able to put a little perspective into things. I've never felt as though anyone said hurtful things on purpose because I do understand that most things in life just aren't fully comprehensable unless you've been there and done that. So, to give a little peek into things infertile couples hear often that just aren't helpful, here is a compilation of things gleaned from the internet.

Comments Infertile Couples Hate to Hear
  • Guess who's pregnant--again!
  • It will happen when you're ready.
  • So-and-so prayed, and they got pregnant right away.
  • You're being too sensitive, or, Maybe you're not meant to have children, or, Just accept it and go on, or, Stop crying, or, We all have problems.
  • Do you want me to give you a few pointers? (ha, ha!). Are you sure you know how babies are made?
  • I get pregnant so easily! My husband just looks at me and a baby is on the way.
  • You're lucky you don't have kids, or, Why do you want them, anyway?, or, I'll gladly give you a couple of mine, or, You don't know how nice you have it--your house never gets dirty.
  • You're not getting any younger, or, When are you going to have kids, anyway?, or, Are you really so selfish that you don't want any children?
  • Adopt! You'll get pregnant for sure.
  • Just relax! You're trying too hard. Stress is bad. (Or, Take a cruise or go on vacation.)
Things that people would NEVER say to a parapalegic but they DO say to people trying to conceive.
  • As soon as you buy a wheelchair I bet you will walk again.
  • My cousin is paralyzed, but she started shaving her legs in the other direction and she could walk again. You should try that.
  • I guess God just didn't mean for you to be able to walk.
  • Oh, I know exactly how you feel. I have an ingrown toenail.
  • Boy, I wish I were paralyzed. I get so tired of walking, if I were paralyzed I wouldn't have to walk anywhere.
  • Sorry, we don't cover that treatment because it isn't a life threatening illness.
  • You're so lucky...Think of the money you save on shoes!
  • I hope you don't go on those anti-paralysis drugs. They sometimes make people run too fast and they get hurt.
  • Look at those people hiking...doesn't that make you want to hike?
  • Do you want to rub my legs? That might help you walk and give you luck.
  • Take a vacation and you'll walk!
  • I ran a marathon and won. Let me tell you all about it and show you my medal and tell you how much everyone is doting on me.
  • You are just too worried about walking, it's all in your head!!If you stop thinking about it so much, it will happen.
Things We Wish You Knew
*adapted from the American RESOLVE web site

  • That it is probably the most devastating thing that we will ever experience
  • That it ruins our self-esteem
  • That it affects our relationships with everyone that we know
  • That it interferes with our day to day functioning
  • That the medications make us moody and emotional and cause us to gain weight
  • That it makes us feel violated
  • That it is very expensive to go through treatment and/or to adopt
  • That it is emotionally draining
  • That it changes our lives forever-we will never again be the same people that we once were
  • That people experiencing infertility have depression rates that are equal to those experiencing cancer
  • That it is a life-altering experience
  • That it makes us question everything we ever believed in
  • That these are medical issues, not lifestyle issues. Talk to us as you would someone who has heart disease, diabetes, or any other medical condition. Be a sounding board for the tests, results, side effects, etc of the treatments. NEVER suggest relaxing or having sex more often
  • Realize that a pregnancy that results from infertility is not the same as others. Infertile couples may have a hard time easing up and enjoying their pregnancy. After being used to receiving disappointment, pregnancy is not yet the end of the road
  • Even though your intentions are good, you will probably say something that is offensive to us because this is such a sensitive subject
  • No matter how close the friendship, it will be hard to completely connect with fertile friends.There is always something there that others cannot understand, even when you do try so hard to empathize
  • Infertility affects all aspects of your life and the pain is inescapable. You are confronted with it at work, at the mall, walking down your street, on television, with family and friends when they don't even know it. Kids are life's common denominator. When you can't participate in these conversations (and they are everywhere) you just don't fit in anywhere-
  • Baby showers are one of the most painful events that we can be asked to attend
  • In this day and age people need to be more cognitive that some people may want kids and are having trouble and some people may not want children for certain reasons. It is not up to family/friends to provide a running commentary on the issue. You never know the situation of the person you are talking to (some people are not open about their infertility treatments) so it's better to err on the side of caution and not make a lot of pregnancy comments/questions
  • To remember that if I am acting mad at times, I am not mad at you, I am mad at my life
  • That I will talk about things that are happening with my treatment when I am ready
  • It's hard to know what I will be doing next. If there were a script, it would be easier to predict the future, but everyone is different.
  • That unless you have done what I've done and been through what I have been through, you can't possibly know how I feel and can't possibly know what to tell me to do about the pain and frustration that infertility brings.
  • That I will be okay again, but I don't know when. So when I seem okay, just accept that as a good thing for the moment, and don't press me, because I don't know how long the feeling okay again thing will last.
  • Going through infertility is like being on a roller coaster-there are constant ups and downs and surprising drops. We never know what is around the next curve and work very hard to just stay fastened in our seats.
  • Infertility is a journey that will take us to many places we never thought of or knew about and it will shape us into new people (some of our newness will be good and some will not be) and change how we look at and deal with everything in our lives. Once you've been on this journey you are never the same again.
  • That the sadness that accompanies infertility sometimes comes unexpectedly and at the most awkward moments. I wish I could plan my depression! But unfortunately, it just doesn't work out like that. Of course, these moments come when I'm surrounded by other people-- watching TV with a group and you see a commercial with a couple holding a baby-- totally unrelated to parenting, pregnancy or whatever, but it's just the image that is devastating.
  • For me (as I'm sure it is for a lot of people experiencing infertility) the greatest fear is that I will never have a child. Each failed treatment cycle, especially as your treatment gets more high-tech, makes this fear even larger. If we could just somehow know that we would have a child, a lot of the stress would be alleviated.
  • I wish family and friends could understand why holidays, baby showers, and just hearing about or being around other people's children and pregnant woman, can be so hard sometimes.
  • That medical treatments are very painful, emotionally and physically.
  • That infertility is a degrading experience-we often feel like failures, like our bodies are not our own, like everyone in the world has touched us, and most especially that the most private part of our lives (our physical relationship with our spouse) has been completely invaded.
  • That infertility treatment is very clinical and definitely is not "fun".
  • That treatment cycles move very slowly, so try to be patient.
  • That we are at the mercy of the medical world.
  • That grief is a VERY important part of the healing process for us- please let us be sad when we need to be. We have to mourn our losses.

Tuesday, July 8, 2008

My Story

My name is Dawn and I have Polycystic Ovarian Syndrome (PCOS). PCOS is an endocrine disorder that affects many aspects of my body. Among them are insulin resistance (which can lead to diabetes), dark, coarse hair in places it does not belong, difficulty losing any amount of excess weight, irritable bowel syndrome, hormonal imbalances and lack of ovulation. I've had this disorder all my life and have been able to deal with most of the symptoms without allowing any of them to take over my life. Until now. I always knew that getting pregnant would be a challenge for me however I never realized just how much of a challenge it would turn out to be.

My husband and I began dating in January of 2000. After we fell in love, we stopped using any form of birth control in the hopes that things might happen without medical intervention. We were married in January of 2006 and in March started seeing a Reproductive Endocrinologist (RE) to help us have our baby. We went through many, many tests and procedures and it was confirmed that the problem lies solely with me.

Fertility treatments are varied and always begin with the least aggressive methods first. It is a very scary, exciting, overwhelming, confusing and heartbreaking process. It is also very expensive. Our health insurance covers diagnostic testing but no treatments. All treatments are therefore out of pocket for us.

The early cycles went like this - at the start of my period I would call the doctor for an appointment. I'd go in for an internal ultrasound to check the state of my ovaries. This consisted of me lying on the exam table with my feet in the stirrups and the ultrasound technician inserting a large wand into my vagina and maneuvering it around to get pictures of both of my ovaries. Not a comfortable procedure at all. Once it was determined that I did not have any large cysts to be concerned about, I would receive a prescription for Clomid to help induce ovulation. I would take the Clomid for 5 days and experience terrible side effects. The Clomid gave me awful headaches and caused drastic mood swings to where I would actually feel like I might lose my mind completely. I'd then go to the bathroom every day at lunchtime to test for the onset of ovulation using Ovulation Predictor Kits (OPKs) - basically a strip of paper you pee on and watch for colored lines. For women without PCOS, the OPKs are simple and easy to read. The color of the lines match (positive test) when ovulation is about to occur or they don't when ovulation is not yet ready to occur. For women with PCOS, the hormonal imbalances make them very difficult to interpret. PCOS women can get a positive reading for days at a time without ovulation actually occurring due to the unreliable levels of certain hormones in our bodies. The stress I would feel trying to intrepret those tests would have me in tears.

After a potential positive OPK, I would inform my husband that we had to "Baby Dance" every day for the next few days - or at least until the OPKs were definately negative. Now this may sound fine but have you ever had sex on a schedule for days at a time? It takes the fun and romance right out of it. Try it some time and see what I mean. After a few months of this, my husband began to feel like he was only being used for his sperm. The rest of my cycle was so preoccupied with other events that the only time we were ever intimate was when I might be ovulating.

After ovulation occurred, the hope would start. And so would the waiting. A positive pregnancy test takes about 2 weeks after ovulation to be accurate. So for two weeks I would wait and dream and plan for the baby that might be. I would get on pregnancy websites and calculate due dates, pregnancy milestones and contemplate whether it would be a boy or a girl. I would picture how exciting it would be at the first ultrasound, the anatomy scan, the delivery and holding our precious baby in my arms for the first time. I'd wonder if it would look more like me or more like him. I'd picture the day I no longer had to worry if I'd ever be a mommy or not. Every tiny feeling in my body would have me speculating about whether it was a pregnancy symptom or not. I'd examine my body in detail to see if I could see any outward signs. Then the day of the test would arrive.

I'd wake up early and apprehensive but excited. I'd gather the timer and the pregnancy test and carefully follow the directions. Then I'd test and stare at the timer while praying the test would be positive but scared that it wasn't. Then I'd look and see that it was undeniably negative. The pain and disappointment is truly unimaginable to anyone who has never struggled with infertility. The beautiful baby I'd imagined for those two weeks and created a life for in my head was gone and replaced by tears, anguish and the ever present fear that I will never have a child. It is literally a mourning process that takes place and the sadness runs so deep and makes my husband feel powerless to help me. Then the waiting for a period begins to start the process all over again. Month after month after month, hopes and dreams are created only to be crushed with a single negative pregnancy test.

After Clomid failed to produce a successful pregnancy I was switched to Femara and the more aggressive treatment of Intra-Uterine Inseminations (IUIs). The Femara with IUI cycles began exactly the same as the Clomid cycles except the side effects of the Femara medication did not exist. But new twists and stresses were added. The IUIs consist of my husband producing a sperm sample a few hours before the procedure is scheduled. Let me tell you how thrilled he was to have to do this. Infertility and treatments can be very humiliating to both partners. The doctors take the sample and "wash" the semen away to leave only the sperm. The sperm are analyzed and added to a sterile solution for insertion into my uterus via a long catheter. I once again am placed on the exam table with my feet in stirrups while the doctor inserts the catheter through my cervix and injects the sperm. Then the 2 weeks of waiting starts all over again with its associated hopes and dreams and apprehensions and fears.

But with the IUIs, the first part of the cycle is just as stressful as waiting to test. For an IUI to be successful, it must be timed precisely within 24 hours of ovulation. Remember above when I described the difficulty with interpreting the OPKs? Well now the stakes are higher because we have only one chance per cycle to get it right. So each month, I stood in the bathroom and cried while trying to decide if it was really positive or not or if I should wait another day to see if the next day's test might look "more" positive.

After a few months of negative pregnancy tests and mid-cycle stress, my RE decided to bypass the OPKs and use the medication Ovidrel to force ovulation at a precise time. Ovidrel is an injection to the stomach and anyone who knows me knows how unrealistically terrified I am of needles. After switching to Ovidrel, the stress of the OPKs was gone but replaced with the stress of an impending injection. Also added to the cycle were mid-cycle internal ultrasounds to see how many eggs were growing and how big they were. The eggs have to be a certain size to be considered mature enough to be triggered for release with the Ovidrel. Typically for me the eggs were not mature enough at the first scan so I would have to return in a few days for a repeat scan. Once the eggs were mature enough, my husband would inject me that evening with the Ovidrel and the IUI would be scheduled for the early afternoon of the 2nd day. Then again, the two week wait full of dreams, hopes, fears and plans.

At the end of January 2008 I finally got a positive pregnancy test. I was so happy and so shocked to finally be pregnant after almost 2 long years of treatments and disappointments. I rushed to the doctor's office for a blood test to measure my Beta level (pregnancy hormone) and it was an 88. The number was low but not out of the range so the doctor was a little bit concerned for me. I repeated the blood test in 2 days to see if the Beta number doubled as it should in a normally progressing pregnancy and it was only 106. At that time it was pretty certain that the pregnancy was not going to proceed as normal. The next Beta 2 days after that showed a drop to 60 which indicated that I was going to be having a very early miscarriage. I was devastated.

I would have been due on October 9, 2008. By now I would have already known if it was a boy or a girl. I'd be showing a big pregnancy belly and beginning to waddle. The baby would be viable now in the event of early labor. My husband and I would be able to feel the baby kick and move inside me. We'd be decorating a nursery and choosing the perfect name. We'd be taking classes and touring the hospital. We'd be able to relax and enjoy the rest of the pregnancy without too many fears of something going wrong.

Instead I sit here with an empty womb and my heart aches. I sit here completely frustrated and terrified that I will never have a child to call my own.

My last treatment was in March and it was unsuccessful. We haven't done any since because we have run out of money for the treatments and need time to save more again. Each cycle of the IUIs cost us almost $800. My doctor is ready to move me on to the even more aggressive (and much more expensive) treatment of injectible ovulation stimulation medication with IUIs and I am not even afraid of the every other day injections. The injectible medication alone will cost over $500 per cycle plus there is additional monitoring and testing required while using injectibles so there are extra doctor visit costs and extra procedure costs. For a single injectible cycle we are looking at about $2,000.

Many people have asked that if we can't afford the fertility treatments then how will we afford a child. We know that raising a child is expensive but most people don't need to spend their life savings in order to get pregnant and it is incredibly unfair to me that crack addicts with no means of support can have babies yet we have gone broke trying to get pregnant and still have no baby. We WILL afford a child should we ever be lucky enough to have one. I just hope that day comes soon.

This is my story and I thank you for reading. I will be posting my thoughts and details of our journey as things move forward.
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