Infertility: The Disease We Need to Start Talking About

Infertility: The Disease We Need to Start Talking About

Dina Roth PortHealth Writer, Speaker, and Author of Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions
Posted: February 9, 2011 07:38 AM

Silence might be golden in some circumstances, but in the case of infertility it has been downright destructive.

Recently RESOLVE, one of the only organizations dedicated to infertility, made a bold announcement on its website: "People with infertility are being ignored." I always knew that insurance coverage for treatments such as in vitro fertilization (IVF) is scant at best, and that many doctors still don't treat infertility as a major health issue. I've learned that blatant misconceptions persist when it comes to our reproductive health. And it's no secret that the media doesn't cover this subject as often as it should.

However, what I didn't realize is that infertility patients' reluctance to discuss their struggles and advocate for change is directly preventing those affected from getting the support and funding they deserve. As Barbara Collura, executive director of RESOLVE, explains, "Infertility is not being discussed in the general public health realm -- it's not taught in health classes, it's barely touched upon in medical schools, and it's not a priority of any government entity. Yet how can we expect health care providers, educators, our government, and insurance companies to pay attention to infertility when the patients themselves aren't even talking about it?"

Why the silence? People battling infertility are certainly not alone -- a staggering one in eight couples face it -- yet many feel like it is an extremely personal matter not to be shared with anyone but anonymous women and men on message boards. Some say they feel shame for not being able to procreate or for having faulty plumbing, so to speak. Also, in our somewhat still Puritanical society, we've been brought up to believe that sex is a private matter. Discussing it in some circles, even when it pertains to a medical condition, is taboo.

Of course, not everyone feels that way. For instance, while plenty of celebrities would never admit having gone through IVF (even when so many give birth to twins in their 40s), Giuliana Rancic has helped break the mold by publicly sharing her fertility battle via her reality show Giuliana & Bill. "We had signed on to do this show and when we started having trouble getting pregnant, we decided we were going to be honest and reveal what was really going on," says Rancic, who suffered a miscarriage last year after undergoing IVF treatments.

The result of her candidness was both surprising and inspiring. "I started getting up to 100 emails a day from people telling me that I helped them because hearing my story made them feel less alone and ashamed," Rancic explains. "I was shocked by the fact that so many people go through infertility because so few talk about it. And while experiencing it myself has been more difficult than I could have ever imagined, I've found there really is a comfort in numbers."

However, Rancic is still in the minority: It seems that for most men and women facing infertility, it's easier to deal with something so emotionally, physically, and financially draining without having to field questions and opinions from every well-meaning friend, co-worker, or family member. Such comments like "Just go on a vacation, relax, and you'll get pregnant," or "You can always adopt," are far too painful to even acknowledge, so people figure that by remaining silent they'll avoid opening themselves up to such commentary in the first place.

It doesn't help matters that there's no general consensus on how to label infertility. In 2009, the World Health Organization officially defined infertility as a disease. Yet many individuals, organizations, and insurance companies still say that having children is a lifestyle choice and that infertility is not a serious medical issue. Some even liken fertility treatments to cosmetic surgery. But ask the millions of couples desperately trying to get pregnant whether or not having children is a necessity. Why would they subject themselves to months or years of such turmoil if, to them, it weren't essential that they try?

Certainly, there are plenty of valid reasons while this secret exists, but it needs to end. Thirty years ago, breast cancer was where infertility is today -- women just didn't talk about it (a topic I touched upon in a recent blog post). There weren't countless support groups, fundraising walks, and an entire month enveloped in pink. Women battling breast cancer did so in silence and, in turn, many felt isolated and ignored. However, now because there is such an international dialogue about the disease, breast cancer receives multi-million-dollar grants each year in research funding and patients are inundated with an outpouring of support and understanding.

Other cancers, AIDS, and many other illnesses follow the same path from shame to global support and advocacy: Once people start talking about it, the awareness, funding, and answers follow. "The silence is one of the key reasons why the infertility movement is not where it should be," says Collura. "By people speaking out and letting the world know that these are real issues affecting real people, that would impact advocacy, public education, and public policy."

What will it take to bring infertility out of the closet, so to speak? Possibly it would help if more celebrities like Giuliana Rancic came forward and if the media started covering the topic more extensively (as SELF magazine did with a groundbreaking piece on the subject). Maybe we need thousands of infertility patients and advocates to come to Washington D.C. for their Advocacy Day on May 5th rather than a few hundred like in years past. Or perhaps we just need the domino effect -- once a few people experiencing infertility open up, more will follow suit.

I don't know what the magic ingredients are that will take infertility from an issue no one talks about to a banner "pink ribbon" type of cause. The bottom line is that far too many people are suffering. But by suffering in silence, the stigma persists and the advances we need to overcome infertility will never become a reality. As Collura points out, it starts with those struggling with infertility saying, "We matter."

And when they do, the rest of the world must start listening.

Survey says...

Today was 14 days post IUI with means it was test day. I have to be honest after getting the news about sperm morphology a few days after the IUI, I had my doubts if it would work. My gut feelings were right and the PG test this morning was negative. It was a tough pill to swallow after the 3 minute wait because all night I had various dreams about taking the tests and having a positives and how we celebrated and who we told. Tough pill indeed!!
The reality is that this is hard and it SUCKS! It is something that we do not have control over and I hate it. I like to at least know what to expect from all of this- in a perfect world we would start thinking of pink or blue but life is not ideal. It is full of speed bumps and detours. This little detour is taking much longer than we anticipated.

I know

Today has been a great day and for that I am grateful. It is fast Sunday which means that testimonies were shared during Sacrament meeting. I needed to hear the testimonies that were shared today. One of the women I served for a short time in the Relief Society presidency with, Bea Pinkal shared this story:

A man was sleeping at night in his cabin when suddenly his room filled with light and the Savior appeared. The Lord told the man he had work for him to do, and showed him a large rock in front of his cabin. The Lord explained that the man was to push against the rock with all his might.

This the man did, day after day. For many years he toiled from sun up to sun down, his shoulders set squarely against the cold, massive surface of the unmoving rock, pushing it with all his might. Each night the man returned to his cabin sore, and worn out, feeling that his whole day had been spent in vain.

Noticing that the man was showing signs of discouragement, the adversary decided to enter the picture by placing thoughts into the man’s weary mind. “You have been pushing against this rock for a long time, and it hasn’t budged. Why kill yourself over this? You are never going to move it.” Thus giving the man the impression that the task was impossible and that he was a failure. These troubling thoughts discouraged and disheartened the man. “Why kill myself over this?” I’ll just put in my time, giving just the minimum effort and that will be good enough.

And that is what he planned to do until one day he decided to make it a matter of prayer and take his thoughts to the Lord. “Lord” he said, “I have labored long and hard in your service, putting all my strength to do that which you have asked. Yet, after all this time, I have not even been able to budge that rock. What is wrong? Why am I failing?”

The Lord responded compassionately, “My friend, When I asked you to serve me and you accepted, I told you that your task was to push against the rock with all your strength, which you have done. Never once did I mention to you that I expected you to move it. Your task was to push. And now you come to me with your strength spent, thinking that you have failed. But, is that really so?”

“Look at yourself. Your arms are strong and muscled, your back sinewy and brown, your hands are callused from constant pressure, and your legs have become massive and hard. Through opposition you have grown much and your abilities now surpass that which you used to have. Yet you haven’t moved the rock. But your calling was to be obedient and to push and to exercise your faith and trust in my wisdom. This you have done. I, my friend, will now move the rock.”

At times, when we hear a word from God, we tend to use our own intellect to decipher what He wants, when actually what God wants is simple obedience and Faith in Him…

By all means exercise the faith that moves mountains, but know that it is still God who moves them.

****************

I needed that story today. So many others reminded me how much Heavenly Father knows us and knows what we need and what we can handle and (almost) more important to me- how long we can handle a trial.

I needed that today. I needed the reminders. While I am still hoping and praying for a positive test on February 16 we got some news on Friday afternoon that our chances of conceiving with IUI are very small because of further results from the Kruger test. I know everything is going to be ok- because I know I have a loving Heavenly Father that KNOWS what I need and KNOWS what I can handle and how long I can handle it. I am so grateful for that knowledge and for the people I am able to associate with that remind me of that...even if indirectly.

Until next time...

Sometimes it's ok to be a stalker...

I was blog stalking today. I was reading a new blog my friend Deb started and clicked on someone that is following her blog and happened upon this little treasure.

As a read this post and the attached essay, tears were rolling down my cheeks. It describes perfectly the feelings that come with infertility. I have felt these same feelings and spent those three minutes praying that I could will a positive instead of a negative...again! It is true that we often put a happy face on even when our heart is breaking into pieces- again- on the inside. I don't know who the author is, I have never met her but I appreciate her ability to put on paper and openly share these feelings that we deal with and work through (sometime more frequently that we want to) but it seems taboo to express.

Here is the link to the blog post and the essay this woman wrote.

http://nateclarlaw.blogspot.com/2010/01/courage.html

I again can't express enough how grateful I am for the support we have been given by friends and family. I have become very open with our struggle and it is very therapeutic for me to have a place to write about what is going on because I can take a couple of days to work through my feelings before writing them down or write immediately-even if I look back later and realize how irrational I was being at the time. While I wouldn't have picked this trial for J.D. and me, I wouldn't trade it for anything- our marriage is stronger for this trial. We have learned to lean on each other on the hard days. Recently J.D. has started saying he is glad I waited for him- I couldn't imagine going through this with anyone but him...my rock!

Until next time...

The Waiting Game

Fair warning there may be information in this post that is to graphic for some. Consider yourself warned...
Yesterday was our IUI. It was much more simple than I anticipated- even with all the online research I have done and questions we have asked. I started the morning by taking a pregnancy AND ovulation test. Seems silly to take a pregnancy test but we had to make sure the HCG trigger shot from the before worked and that is how you test it. The ovulation test said we were at peak ovulation so basically- primed and ready to go! I was so excited to see that both test results were what they were supposed to be. I was a little worried me may need to cancel the IUI because JD had been sick with what we think was the flu but he was a trooper and said we needed to just move forward. We just hoped that him being sick didn't affect the results of his test later in the day.

JD had to go in to Dr. H's office two hours before my appointment to make his contribution. Besides being normal protocol for an IUI we were having a Kruger test done. This is to make sure that we don't have male fertility issues as well. Poor J.D. has been so stressed about what the results would be. Everything looked great! It was a relief to hear the news but even better was to see the relief on J.D.'s face. I asked him later why he was so worried about it and he said because he didn't want to be the reason I couldn't be a mom. I am so blessed- this man is always worried about me and what I want/need.
When we arrived for my appointment we were taken right back to the exam room and asked to read and sign a consent form- basically stating that there was no guarantee of pregnancy and the possibility and percentage of multiples that come from IUI and a bunch of other legal mumbo jumbo.

As we were sitting in the room waiting for the nurse to come in I made a comment in passing that I would just get up and leave if "K" the nurse practitioner that we don't care for came in the door instead of the nurse manager "H", who was supposed to do our insemination. Wouldn't you know that not a minute later a knock came on the door and "K" walked in. I couldn't believe my eyes for about 5 seconds then spoke up and said we want "H" to do the insemination. For anyone that knows me you know that I don't typically have issues with speaking my mind but in a doctor's office it seems that I become much more reserved--except in this case. She made a point of asking if there was a problem with her and I repeated several times we just wanted "H" and that was it. She left and got "H". I felt like such a baby but I started crying the second she closed door behind her. I know I am just very sensitive about working with especially since specifically requesting that she not be part of a care team anymore and have her walk in the room. "H" came in within a few minutes and all was well in our little world again. She just has a very calming personality- which is helpful for me. She gets that infertility struggle because she has been there and in my opinion she is just a great nurse. She went over the results of the Kruger test and then we reviewed exactly what we had done this cycle with medications and injections- just to make sure we were all on the same page. She then showed us the specimen, double checked the information and told us we were the only ones doing an IUI that day anyway so we knew it was ours and proceeded to do the insemination. It took about 10 minutes and was pretty simple and only slightly uncomfortable with a little bit of pressure.

Now the waiting game. We don't take a pregnancy test for two weeks, 14 days and right now that seems like an eternity. I'm glad I have school and work to keep me busy and my mind off it. I did read on our paperwork yesterday that taking a test within 11 days of the insemination may show a false positive because of the HCG trigger that we did the day before. So in 14 days I will be doing another pregnancy test and hopefully we will have a positive result. If so, we will head into Dr. H's office for a blood test to confirm the positive.

We are truly blessed and have felt the comfort and peace from each of you from your prayers, thoughts and kind words on our behalf. We are hopeful that this will be the only IUI we need to do but continue to be realistic that it may not be. There is a 20-30% chance of getting pregnant with an IUI with injections. Here's to hoping we are in that percentage. If not, we know that God knows better than we do what our situation is and what the solutions are for us.