Guilty as Charged

Most people commonly associate infertility with the emotions of sadness, depression, jealousy, etc. Those emotions are very much present. However, the one emotion that is so very prevalent in infertility but not as commonly discussed is guilt. You might ask why feel guilty for something that you cannot control. You might think it’s crazy to put the blame on yourself when there is nothing you can do to help it. But you, my friend, are thinking clearly. And it is so so so hard to think clearly when facing infertility.

When I was growing up I knew I might have difficulties having children, or I may never be able to have children. Knowing that impacted every single relationship I ever had. In high school and college, before I was even ready to have children it changed the way I handled relationships. I would think about the fact that one day I was going to have to tell my boyfriend that we may never be able to have kids. I felt like it was something that I needed to warn them of. If they wanted to have kids I might not be able to provide that for them. I felt like they didn’t deserve to have to be with someone who was infertile. 

I felt/feel like less of a woman. Part of being female is being able to conceive and grow a child. I’m not saying that it is a requirement as there are plenty of women who do not choose to be mothers. But for those who wish to have children and cannot, it can make you feel like you are not whole. All of the stories, from the time you are young, are of two people falling in love, getting married, and then having a baby. When you are struggling with that last part you feel incomplete. And when you know it’s because you are ‘broken’ you feel guilty. You feel like you are preventing your husband from having the family that he wants. 

When Steven and I were ‘unofficially’ dating, I had ‘the talk’ with him about PCOS and what it means about me possibly not be able to have kids. This conversation was a little premature, but when he came over and found me crying my eyes out, it was a conversation that needed to take place. My best friend had just told me that she was pregnant with her first. I love her to death and was so happy for her, but I was so jealous at the same time. I was afraid that she would be a mom and because I didn’t/couldn’t have kids I would never have anything in common with her again. That she would find ‘mom’ friends and I wouldn’t have anything to contribute. (That’s not the case and she is amazing and her two little ones are great!) During this breakdown I told Steven everything. Little did we know that this would be the first of many breakdowns that would happen about infertility.

Before we found out that Steven had a problem with his sperm as well, we were hopeful that either medication and/or a healthy lifestyle would help us conceive. When we were looking for houses we wanted to find a house that had a least three rooms and some space so we could start our family. The first time we stepped into our, now, house, Steven looked at me and said “This would be a perfect house for kids”. That is something that I will never forget. So today I sit in our 4 bedroom house feeling guilty that we may never be able to fill our house with the kids that it is so perfect for. I not only feel guilty for not being able to provide my husband with a family, but I feel guilty for not providing my house with the kids it deserves. How incredibly silly is that?! But it’s the truth. 

Steven is an only child. Without Steven having children, his mom will never be a grandmother. His mom has been great and understanding with the infertility problems, but I know she wants to be a grandmother. And even before we knew what we were facing, I felt guilty that it might be my fault that it may never happen. I remember one time his mom was joking with him about us giving her grandkids, this was while we were dating, and afterwards I had to tell Steven to warn her of the potential problems. I felt like I needed to warn her so it wouldn’t be as hard to hear if we had trouble.

Luckily, my sisters both have at least one child so my parents are already grandparents. Both of my sisters are younger than me, by the way. Watching your younger siblings have kids before you…well that’s a story for another day. 

From the time we found out that we are not only facing female factors of infertility, but male factors too, the guilt has doubled. You would think that the guilt would go away since there is not one person in the relationship to ‘blame’. Again, you are thinking too clearly. Now we both feel uncontrollable guilt about the situation. Every time I break down and cry because of how stressed, sad, upset I am about the whole situation, Steven feels guilt. He feels guilty that he cannot provide me with the baby that I want. He feels guilty that he may never be able to help me become a mother. He feels like less of a man.

Every time Steven feels hopeless about the situation and about finances, I feel guilt. Every time I tell him how much a procedure or medication costs and he turns his head and asks “How much?” I feel guilt. Every time someone asks when we are having kids, I feel guilt.

 So now we have:

My guilt + Steven’s guilt 

= a very stressed and emotional couple.

Struggles...

What Infertility Means to Me:

When your bank account dictates whether or not you will be able to have a family.

When you are considering throwing your entire savings account into one attempt at something that may or may not happen. 

When you are just as scared of it working as you are it failing. If it works, you have no idea how you are going to afford daycare or diapers because you just took out a loan and used your savings to make this happen. If you fail, you just threw away thousands of dollars and lived in a medicated blur for the past month, two month, years with nothing to show but an empty bank account and accruing interest. 

When people tell you don’t worry and it will happen…Really!? Because I wasn’t worried for the first 6 months and nothing, and that’s when I started to worry. 

When people who have had ZERO problems getting pregnant and having children tell you to stay positive and it will happen, when you just needed to vent about your struggles. A better response is, “I know you must be so stressed and worried. Try to relax if you can. I am here for you and I will be positive for you”. 

When you feel SO ALONE because everyone else seems to be having no problems getting pregnant and everyone is so focused on them and their new children that you are left in the corner by yourself wishing you could be in their shoes. 

When you understand secondary infertility is a thing and very upsetting- but at least if they stop trying they still get to have their other children. If you stop trying, you will be alone forever. 

When people say “Maybe it’s in God’s plan, maybe you are meant to adopt”. So God wanted me to be infertile, and broke. He wanted me to not be able to have children naturally but too poor to be able to afford to adopt. 

When every single pregnancy announcement makes you start to cry because it’s not you. 

When you have to decide whether or not to have a wedding because you are not sure you will be able to afford getting married and fertility treatments. When you postpone infertility testing because you decide that at least a wedding is pretty much a guarantee that you end up married whereas fertility treatments do not guarantee a baby. 

When you have never taken a vacation as a couple or even a honeymoon because you’re saving for fertility treatments.

When time is both your friend and your enemy. In a few years you might be able to afford everything, but in a few years you chances of success drastically go down. 

When you have an empty room in your house set aside for IF everything works. When you start off calling it ‘the future  baby’s room’ and end up calling it the ‘yellow room’ because the future maybe never come breaks your heart. 

When you feel like it’s all your fault and your husband feels like it’s all his fault and you both break down on a regular basis. 

When you know all of the abbreviations: BFN, BFP, DH, OPK, POS, CD, IB, AF, EWCM, BD, CP, DPO, O, BBT, IVF, IUI, TWW, FMU, HPT and you have an app that tracks almost all it. 

When you feel like you did everything right. You graduated high school, went to college, got a Bachelor’s degree, got a Master’s degree, found a job, bought a house, got married…but now you can’t start a family. 

When people tell you “oh it took us 10 years to get pregnant” and yet they started trying at the age of 20. If it takes us 10 years we will be 40 years old and by the time the kid is in high school we will be close to retirement. 

When you realize your parents and grandparents are getting older and some are gone already. Those are people who will NEVER get to meet your child (if you even have one). 

When you realize if you never have children, you will never get to be a parent, or a grandparent. Once you are gone your branch of the family tree ends. 

When it’s ALL a struggle. 

Welcome to Our Story

Welcome to OUR story.

Everyone’s story is different. Even if the situations and circumstances are the same; everyone has an individual story. This is an introduction to my story, Steven’s story, our life.

When I was 16 I was diagnosed with Polycystic Ovarian Syndrome. This is a hormonal imbalance that causes tiny cysts to form from your ovaries. Some of the side effects can be: facial hair, oily skin, acne, thinning hair, high blood pressure, insulin resistance, skin discoloration, irregular menstrual cycles, extra weight and difficulty to lose said weight, and INFERTILITY. That’s definitely not something a 16 year want to hear. In the midst of…well…high school…there is nothing about PCOS that sounds promising. 

PCOS affects about 1 in 10 women and most don’t even know they have it. The symptoms are different for everyone and the symptoms can change over time. The symptom that made me go to the doctor was the lack of having a period. When it’s been 2, 3, 6, 9 months and you haven’t had a period, you start to worry. This is why PCOS is the most common cause of infertility in women. A period is caused by hormones that are signaled during/after ovulation. When you are not ovulating (like me) you may not get a period. No ovulation-no chance of having a baby. 

At 16 you aren’t really thinking of having a baby anytime soon, but the realization that it may never happen is heartbreaking. Unfortunately, there is no cure for PCOS, only symptom minimization. My doctor put me on birth control (to regulate cycles) and Metformin (a common diabetic medicine to help control insulin). It is common for women with PCOS to have glucose intolerance. If a woman does not respond normally to insulin, her blood sugar levels rise, triggers the body to produce more insulin.  The insulin then stimulates her ovaries to produce male sex hormones called androgens.  These androgens block the development and maturation of a woman’s ovarian follicles, preventing ovulation resulting in irregular menses and infertility. Androgens may also trigger development of acne and extra facial and body hair.  It will increase lipids in the blood.  The elevated blood sugar from insulin resistance can develop into diabetes.

After almost 10 years of going through tests, being poked, blood drawn, 3 glucose tests (for those of you with children, yes it’s the same sugary drink that tests for gestational diabetes), we seemed to have things in order and, for the most part, working correctly. I was still on birth control because we were not thinking of trying to have a child just yet. 

Then I got sick again. I started to lose my hair, I had a 3 month long dry sinus infection, and I was missing work to go to the doctor’s office every other week. I was diagnosed with Hypothyroidism. This happens when your thyroid gland stops working properly and is not producing enough of the thyroid hormone. Symptoms are depress, hair loss, dry skin, constant fatigue, sensitivity to cold, swelling of the thyroid gland, difficulty losing weight and infertility. So once again another problem with my possibility to have children.

 Hypothyroidism is not curable, however, there are medications you can take to help control it. I was put on thyroid medication and was (and will be for the rest of my life) monitored with blood work every 6 months to make sure the medication is working. 

So fast forward to a little over a year ago- Steven and I decided that we wanted to have a child. Knowing that there would be a very real chance of difficulties we had a lot to think about. We knew most fertility clinics wouldn’t start seeing you until 6-12 months of not being able to conceive naturally, so we decided to start trying. We had just started talking about when we would like to get married (yes, the engagement ring came much later in this story) and it was a little over a year away. While we knew chances of conceiving before then were slim, we were okay with the idea that it might happen before the wedding. 

Fast forward 6 months, we bought a house, moved to Wentzville, MO, finally got engaged and still had no positive pregnancy test. After reading all the issues above, this might not come as a shock to those of you reading this, but it did to us. I was tracking my cycle this whole time and...wait for it…I was ovulating! My body was doing everything it was supposed to do every month to prepare for a baby. I was checked out by my doctor and he confirmed that I was ovulating. We even tried a few medicated cycles with Clomid to improve our chances, so why wasn’t anything happening?!

We were then referred to an infertility clinic in the area (MCRM) to get Steven’s sperm tested and to test me to make sure my fallopian tubes were not blocked. Keep in mind that not all fertility testing is covered by insurance. A lot of the initial testing for us was partially covered by insurance, but any fertility treatments were not. 

We started off with just doing Steven’s sperm analysis (SA) test- it was only a few hundred dollars out of pocket where the HSG test to test my tubes was almost $1000. When we got the results from the SA we found out his count was extremely low. Where the low average amount for men who fathered children is 15 million, his count was only 3. On top of that the motility (if they move) was below average and the morphology (shape) was below a 1% that were normal. We were told that there is a chance that this was not indicative of how it always is, as sperm regenerates every 3 months. So we needed to come back in 3 months to schedule another test, blood tests for both Steven and myself and to test my tubes. 

We went home very defeated. We knew that we were hoping to get married that fall and we did not have enough money to start doing all of the fertility testing and get married. So now our dream of having a child may be shattered and our dream wedding would not be possible. We heavily considered not having a wedding at all and just focusing on treatments. After quite a bit of discussion we decided to go ahead with the wedding and put the treatments on the back burner. The though process was that the wedding was a guarantee. Chances of us walking out of our wedding without actually being married was pretty low, where the chances of doing testing a treatment and leaving without having a baby was high. 

So we (and by that I mean I) started planning a November wedding. We knew we couldn’t have our dream wedding because every cent we put into the wedding was the much less we had to spend on fertility treatments. Sadly, this meant our guest list left off quite a few people because we could not afford to invite them. We had to cut out all children other than cousins and many friends I would have liked to have invited were not on the guest list.  Our parents did help quite a bit, but we still put in a few thousand of our own money into the ceremony and reception. We knew we wouldn’t be able to go on a honeymoon…ever. We had never been on a couple vacation, and I had never been on a vacation outside of the state of Missouri. I had been looking forward to a honeymoon my entire life. But we knew that it would be too much money and we would have to save it all for treatments after the wedding. 

Five months of planning went by very quickly. Then wedding happened and it was beautiful. We were able to share the moment with our family and a few close friends. And like we assumed, we DID walk out of the wedding being married. Success! 

After that we took the next month to discuss our next plan of action. We set up an appointment for me to do HSG testing and blood work in December. We did that, and everything came back normal. My tubes were open and clear and my blood work was perfect. So we went ahead and scheduled another SA and blood work for Steven that first week of January. We both took off work and went to the clinic a week later to get the results hoping that either the SA results were better OR that there was something wrong in his blood work (like low testosterone) that was easily fixable and it would raise the sperm count. 

The day of the appointment arrived and we kept our fingers crossed. We sat down in the doctor’s office and she first told us about the SA results- no change. My heart sank. Then we took a look at the blood tests, hoping that there was something that would show us why his count was low and what we could do to fix it. No such luck. All of his blood results were perfect. Perfect levels of testosterone, great working thyroid, no defects that would be causing a low sperm count.

She told us that there were three options. 1. To try to do medicated, monitored cycles with timed intercourse. This would give us under a 1% chance of success since his count was so low. Plus it would cost around $500 a month for medication and ultrasounds. 2. Doing medicated, monitored cycles with intrauterine insemination (IUI). This would give us between a 1-2% success rate and cost between $1000- $1500 a month. This method improves the chances because the sperm would be ‘washed’ so only the healthy ones would be implanted. Plus the sperm would be implanted directly into the cervix and would not have to go through the ‘hostile atmosphere’ of the vagina. *You learn something new every day. Apparently the woman’s vagina is not very friendly to sperm. If you start off with 200 million sperm, only 2 million make it to the cervix.* 3. Our third option is IVF. This option costs around $15000-$20000 (with medication cost) but its success rate is upwards of 70-80% at our age. This is where they remove the eggs from the woman’s body and directly insert healthy sperm into them. The eggs are then transferred back into the woman to hopefully implant and create a baby. 

The doctor also told us that there is a good chance that the reason Steven’s sperm count is low is due to a partial deletion in the Y chromosome. The Y chromosome is what makes the different between being male and female. It also creates the production of sperm. A partial deletion can be small and cause no problems, it can cause low sperm counts, or it can cause a man to produce 0 sperm. This is also genetic and is passed down from the father. Steven’s father had a very low sperm count as well, so chances of this being the case are high. They could test for it to make sure this is the reason, but the test is very expensive. And even if he tests for it and it’s positive, there is nothing that can be done to fix it.

She prescribed us clomid for Steven to take for a few weeks and to schedule an appointment for another SA and more blood work. Clomid can help raise testosterone levels and in men with low testosterone it can help produce more sperm. Since Steven's levels are normal she said this probably will not work but its worth trying out.

Again, we went home feeling absolutely defeated. During this time I stopped ovulating as well. Like I mention in the beginning, symptoms of PCOS can come and go as they please. So now I am taking medication to try to induce a period to hopefully kickstart my body to start working properly again.

So this is where we are. With the success rates listed above, the only option is IVF. The older we get the success rates start to drop. Plus the chances of PCOS causing more and more problems over time can increase.

We go back in March to get his new test results and if they are still low we know what we will have to do. We are just so incredibly disappointed and upset. We just bought a house, we just got married, and our savings account is not as pretty as it once was. I am still paying off my Bachelor’s and Master’s degrees. I had to buy a new (used, but new to me) car about 2 years ago when mine completely died that I am still paying off. All of these things cost money, money that we now need to put towards having a child. We can afford taking care of a child, we simply cannot afford making a baby. It’s something that is supposed to be fun and free…and it isn’t fun and it is not free. 

I pray every day that things could be easier. I wish on every blown eyelash, in every fountain, and every time it turns 11:11 on a clock. I even write my wishes on the shower door in the steam! I see everyone around me having babies and getting pregnant and I’m not. I see people who don’t want to have kids getting pregnant. I’m throwing thousands of dollars at anyone who can make it happen. I’m putting my life’s savings into this dream. A dream that is still just a dream.

This is our story so far. This is our journey.