Breaking the Silence

When I was first received my IF diagnosis, I did what any normal person would do and scoured the Internet for resources and answers. For hours. And days. While obsessing researching, I discovered a multitude of support networks online. It was like an underworld for infertiles! It took a while to find the right one for me but soon, I had found a group of incredibly supportive women, all at different stages in their journey and all knowledgeable about a plethora of topics revolving around treatment options, diagnosis and medications.

One of my goals (besides raising money, click here to donate), in being open about our infertility journey, is to raise awareness about infertility and what women who suffer with this disease go through. One of the reasons that Infertility is such a taboo topic is because people don't really know that much the diseases that affect a woman's fertility AND they don't understand the treatments.

To help raise awareness and combat disinformation, some of the ladies I know have offered to open up about their infertility, treatment, journey so far and plans for the future.

So, without any further ado, please welcome, my friend Kate!

Kate, How long have you been trying, what is your diagnosis, what treatment methods have you tried (and if you feel comfortable) what has been the financial cost of treatment?

·         We have been TTC since August 2011. After going off the pill and not having a period, we went to the doctor to figure out what was wrong. After a series of tests and ultrasounds, it was determined that I have hypothyroidism and PCOS. My husband also had a sperm analysis and that was deemed to be good.

o   After that we started medicated cycles.

§  4 clomid cycles

§  1 femera cycle with trigger

§  1 injectables only cycle with trigger

§  3 clomid and injectable cycles with triggers

§  1 clomid/injects/trigger and IUI

·         We discovered during this IUI that my husband’s good count is gone. The count and motility were down to basically nothing.

§  1 clomid/injects/trigger and IUI

·         Sperm count increased and had better motility

§  2 femera/injects/trigger and IUI

o   After this many cycles and no baby, we decided to take a much needed break. Financially, these cycles cost about $1000-$1200 each- including monitoring and medications. Additionally, I traveled to St. Louis Mo (4 hours away) for each monitoring appointment.

How does being infertile affect your life?

·         I have a hard time being around children nowadays. It is physically painful to see them (especially my friend’s children) and makes my heart ache. I have lost friends over this battle due to comments they have made. Recently a friend of mine who knows every step of our journey told me that she “wishes I would hurry up and have kids so we can be in the same place in our lives”. I would if I could!

What made you decide to “come out” about your infertility? OR Are you open about your infertility?

·         I was fairly quiet about my journey, but I wouldn’t say I wasn’t open. This year at Christmas my sister put together an indiegogo fundraiser for me. She was able to raise $600 and surprise me with me it. After that, I have been very open. I have a blog that I kept updated and linked to my Facebook account, but I haven’t posted since our break started.

What made you want to do IVF?

·         We have not decided to move onto IVF at this time. Right now we are seriously considering a childfree lifestyle.

What is the hardest part about treatment?

·         The hardest part about treatment would be all the hormones raging through you. They gave me the worst mood swings ever!! I felt so bad for my husband.  Look up ecards on Clomid and you will understand. J Honestly, it really took a toll on my marriage.

What is something you would really like people to understand about infertility?

·         Infertility is a heartbreaking disease. Please be sensitive about your comments, even those about your own children. There are people out there who would love to be in your shoes.

The Cost of Infertility: We’re Not Just Talking Money

Recent research has shown that the stress levels of women with infertility are on par with women with heart disease, cancer and AIDS.

I liken the feelings of being infertile to those of losing a loved one. For some time after a loved one dies, you wake up in the morning and for a split second, everything is ok. You don’t remember that you no longer have that person in your life, but then it all comes flooding back and although you get out of bed and continue with your life, you are constantly carrying this burden of loss in your heart.  You are reminded of that person throughout each day and you mourn them.

Because I have experienced both, I can say with certainty that being infertile carries a lot of the same emotions. I wake in the morning and have a blissful moment in which I do not think about the fact that my body has betrayed me.  When the realization comes rushing back, sometimes it’s like a brick wall and other times it is just a constant nagging feeling.  Some days I don’t think about it too much but then I will see a show on TV or a Facebook post about a happy family and it will remind me that I can’t have that. When you are infertile you are mourning the loss of a dream and coping with the fact that you are unable to procreate.

For me, seeing pregnant women or hearing pregnancy announcements, does not make me angry. There is a misconception that infertile women are bitter and angry regarding other women's pregnancies. I am not mad at anyone else for getting pregnant. On the contrary, I am so happy for them and especially happy for those that are able to do so without medical intervention because I wouldn't wish infertility and treatment on my worst enemy. I am jealous of their joy though. I am jealous that they get to experience the joy of motherhood – that overwhelming love that no one can quite explain, that only a parent can understand. I am jealous that I may never get to experience that.

Add to those emotions the stress of multiple doctor visits a month and it is stressful and overwhelming. Most people go to the doctor once a year, maybe a few more times if they get the flu or a terrible cold. I go at least twice a month. And these aren’t the kind of appointments in which you just sit on the table and talk to the doc. Twice a month (at least) women going through treatment have a date with Mr. Transvaginal ultrasound wand. Let’s just say it requires that you undress from the waist down and leave it at that. The best is when the small group in the exam room multiplies because I happen to go to a clinic that is associated with a medical university. You know what that means? You guessed it: INTERNS! And third year interns need experience, so occasionally the doctor will ask if I mind if the intern conducts the exam. This is always fun because it’s like they are playing pin the tail on the donkey. Like blindfolded, dizzy children, they spend half the exam just poking around trying to figure out what they are looking for and the other half commenting on how they’ve “never seen to many cysts,” or “the amount of scar tissue is unbelievable.”

The poking doesn’t just stop at the doctor’s office. There are medications you have to administer to yourself, at home. When I was first told I would be giving myself injections, I thought, “You’re going to trust me with needles?” It was almost laughable. And terrifying. The first time I gave myself an injection it took a half hour before I could get up the nerve to do it. When I finally injected myself, I was so surprised by the sharp pinch, I pulled the needle out before injecting the medication and had to re-inject myself! Oops!

Then there is the stress the financial impact of pursuing treatment has on your life. I find myself feeling guilty for any extras in life. Want a candy bar? Nope. We need to save the money for IVF. How about taking a drive to the bay to go see your nieces play softball? Nope, we need to save the money for gas to drive three hours (each time) for doctor appointments instead. How about stopping for lunch to break up the drive back from the Fertility Clinic? Nope, that money we spend at Taco Bell could go towards treatment. It is difficult to not allow your life to revolve around your infertility diagnosis when everything you would like to do has to be scrapped so you can save money to pursue medical treatment. 

With other diseases, you are diagnosed and you seek treatment. The disease and treatment alone are overwhelming but insurance covers a large majority of the costs of the procedures and medications. Now imagine being diagnosed with a disease but in order to seek treatment you have to come up with all of the money to pay for it. The Affordable Care Act certainly doesn’t cover it. Private insurance won’t either.

While there are loans for infertility treatment available, the interest rates are incredibly high. Just the idea of applying for a loan is daunting. You find yourself thinking, if I get a loan that I have to make payments on for two or three or four years, what will I be depriving my future child of in order to be able to make the loan payments? How will I pay for their needs and contribute to a college fund and pay for the loan I had to take just to be able to get my body to work properly so I could have the child in the first place? Instead of just the normal financial concerns of how to afford having children, you have to add the amount of money you have to spend just have the chance to have a child.

And then there is the “Two Week Wait” this is that horrible time between the procedure (be it IUI or IVF) and when your monthly visitor should arrive. It is a time when you can do absolutely nothing but wait, second guess, pray and live your life as if you are pregnant, just in case you are because you certainly don’t want to drink, eat lunch meat or exercise too strenuously and do anything that could hurt that little bean that could potentially be inside you. If you do eat lunch meat or sushi or exercise too much and the cycle fails, you will forever wonder if it was because of that piece of salami you popped in your mouth at midnight the night after your IUI. Is there a medical reason to prove that that could have been the cause? Absolutely not. Does it matter? Absolutely not.  Sound crazy? Yup. And it is, but that’s what it comes down to when you are infertile, second guessing every move you make in your everyday life and wondering what you could do differently to change the fact that you cannot get pregnant.

Sometimes it gets to be too much but at those times you just have to remind yourself what’s a stake. If you don’t at least try, you don’t have the possibility of one day holding a child of your own in your arms. For every disappointment, there is that hope and it is that hope that keeps me going. If all the doctor visits and money spent and depression and craziness and despair means that I will someday hold my own tiny human, I’d do it a thousand times and then a thousand times again. For our child, I’ll move mountains. 

(Source)

If you would like to help us achieve our dream, please consider donating by clicking the "How to Help" tab at the top of the page.

Response!

Wow! I would just like to take a moment and say thank you to everyone who commented on our situation on Facebook, for everyone sending love and prayers and those of you who have already donated to our IVF fund. We have had an amazing response and we are both so touched by the outpouring of love, even from those we don't know, except through the internet.

When I first thought of the idea to talk about my infertility and to try and raise funds for IVF, I wasn't sure what the response would be and am overwhelmed by the amount of support we have received in just a few short days. Our journey has been long and difficult and all of your responses have given me the strength to continue and make me feel like there is a light at the end of the tunnel.

We have opened a Zazzle store with products to help raise awareness about infertility, the profits from which will go to our IVF Fund. In addition, we will be opening an Etsy shop with hand blown glass jewelry Steve and I are making specially for infertility awareness as well as some necklaces with decorative glass pendants. If you would be interested in purchasing any of these products, see the tab above for our Zazzle store and check back soon for the link to our Etsy shop!

Our Story

Steve and I have been blessed in many ways. We have 23 amazing animals (dogs, cats, horses, goats and chickens) and live in the beautiful foothills of the Sierra Nevada’s in Northern California. We have our health, we are happy and life is good. There is, however, something missing. There has been for quite some time, and I am sure many of you have noticed: we have no children. There are no little voices, echoing in our hallways, no toddlers trying to ride any of the dogs and when we watch Disney movies and I dance around the kitchen, singing along, it is very much alone (have you seen Steve dance?).

So, why don’t we have kids?

Well, we want children, very much. Unfortunately, due to my endometriosis and Polycystic Ovary Syndrome, we haven’t been able to realize that dream.  We have been working with a Reproductive Endocrinologist and have been undergoing fertility treatments, but nothing we have tried so far has worked. We have now come to the point in our journey of trying to create a tiny human that IVF is our only option. 

What is IVF?

The very short, non-scientific version: IVF or in vitro fertilization is a process in which eggs are retrieved from the mother and fertilized by the father’s sperm in one of two ways, using traditional IVF: putting the sperm and egg together and letting the spermies do their thing, or ICSI: the doctors choose the best sperm and inject it into the egg. The egg is then left to incubate and become an embryo. After a few days the embryo grows and is placed back into the woman’s uterus to grow and be nourished and come back out, nine months later as an adorable tiny human.

So, why don’t you do IVF?

Sadly, IVF is very expensive and is not covered by our insurance. Until recently, we have been fortunate enough to have some insurance coverage for my infertility treatments, however, due to recent changes in the health care system, we will no longer even have the coverage that we once did.  While our policy says that it covers “50% of the diagnosis and treatment of infertility” there is a large list of exclusions including: medications for the treatment of infertility, artificial insemination and IVF. So basically, it doesn’t cover anything at all. While the little coverage it does offer is somewhat helpful for testing, it does not help people like me with blocked tubes and scar tissue build up from endometriosis.

What about the risk of multiples with IVF? What do you want, a litter?

Yes, there is an elevated risk of multiples with the use of fertility medications and IVF, but there are ways to prevent multiples by only transferring one or two embryos (depending on the embryo quality).  There are a lot of dangers associated with carrying multiples and doctors do everything they can to prevent HOM (higher order multiples). Most often, people who get pregnant with a “litter” do so because they go against doctor’s orders. For example, there is a family who went through fertility treatments (IUI or Intrauterine Insemination or Artificial Insemination) who responded too well to the medications. The woman had far too many mature follicles (eggs) and her doctor cancelled that treatment cycle. She and her husband were told to abstain or use protection to avoid HOM. They chose to ignore doctors orders and voila: a litter of children.  In another case, in which a woman had eight babies, she went to a very irresponsible doctor that choose to implant far too many embryos. Thankfully, we go to a clinic that works in conjunction with UC Davis. Our doctors are ethical, well educated and well practiced.

What happens if you have lots of embryos? Would you just throw the ones you don’t use away, or leave them in deep freeze forever?

Absolutely not. We believe that life is created when sperm meets egg. Just throwing away or freezing our embryos forever would be like throwing away a tiny human or freezing one forever! There are a few options for us: Any extra eggs retrieved, that we didn't use during this cycle to achieve pregnancy, can be frozen for us to use to be able to give our potential child a sibling, later. The cost of a frozen embryo transfer is much less that the full cost of another cycle of IVF. Also, if we were to have more embryos than we wanted to use for ourselves, we could donate the embryos to another couple struggling with having a child that has egg quality issues. 

Isn’t there something else you can do?

There is a surgery, called a laporoscopy, that helps with the removal of that scar tissue. I have had this surgery twice and while it has helped alleviate a lot of discomfort, the doctors cannot remove the tissue surrounding my ovaries or blocking my tubes without the risk of damaging them and creating further problems with my fertility. Hence my doctor’s recommendation that we do IVF.

Why don’t you just adopt?

That’s a good question and some day we might, but for now, we would like to try and have our own biological child. Plus, adoption is very expensive (more so than IVF) and the wait time to adopt a baby in the US is four to five years.

I think you two will be excellent parents. What can I do to help?

Well, we are asking people to help fund our IVF procedure by DONATING HERE or by using PayPal's "Send" option, to Daydrmsam@gmail.com. Any amount will help.  At our clinic, one cycle of retrieval and embryo transfer costs $9,500 (an additional cost for ICSI is $1,500) plus the cost of medications, which is an additional $6,000-8,000. While we have applied for grants and the Compassionate Care medication program, so have a lot of other couples and they are difficult to get. We are trying to fundraise the full amount of $17,500. While we have the means to care for a child, we don’t have such a large amount of money at our disposal and financing options for treatment have high interest rates.

I would like to help, but don’t feel comfortable donating through a website.

Please feel free to email us at Daydrmsam@gmail.com and I would be happy to send you our address and you can mail us a check or money.

I’m sorry you’re going through this. I don’t know what to say.

Battling infertility is hard and people often don’t know how to comfort their friends and loved ones who are going through this difficult journey. Here are some resources to help you know what to say, and what not to say, to people struggling with infertility: http://www.resolve.org/support-and-services/for-family--friends/