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.
April 25, 2017
6 hours ago