Growing up in a family of four kids, I knew from an early age that there was no way I could handle having a large family of my own. Don't get me wrong, I love children and certainly wanted a few of my own. I just knew the level of emotional and financial responsibility a large family demands would be far outside my personal realm.
Even the small things, like seeing my parents whence when my shoes were getting tight or realizing JUST how long it took for all 6 of us to successfully get into and out of the car, told me a large family was just not in my future. What I didn't know is that, once I made the decision to begin trying for a family, that the decision itself would be then end of my control over reproduction.
Despite the fact that my husband and I had been together for more than 7 years before we married, I wanted to wait a little longer for us to settle into our careers, maybe buy a home (before the Dallas market exploded), and be a little more financially independent before we began building a family. Maybe it's all the safe sex lectures we receive as kids, but we all grow up assuming everything is working properly, and we (as women) ultimately have control over when and how we conceive. We expect that as soon as we stop preventing pregnancy, it'll happen right away. I recently had the unfortunate realization that this is not the case. We made the decision to start trying a year ago and have been waiting ever since. It's a hopeless feeling.
I don't know if infertility is a growing problem or if it has always been there and nobody really voiced it, but it went from being something I never heard about, to something I'm completely surrounded by. It could be because I'm at the age where people are finally building their families. Or maybe it's because it directly effects me. That's when things become real, right? Either way, in the world of fertility, so much is unknown, and as someone who has always been taught that "knowledge is power", I want to do my part to ensure people are as educated as possible about something so innately out of our control.
I recently read a study that said 1 in 6 couples will face infertility. The only reason I read this study is because I looked for it. And therein lies the problem. There is so much contributing to these issues that nobody bothers to disclose. Is it possible we are unknowingly sabotaging our efforts and contributing to the very delays causing our frustrations. This issue is not only emotionally draining but financially costly.
A study published by Fertility and Sterility in 2013 surveyed almost 400 women and found that the average couple spends $20,000 on fertility treatments. A further look into this issue found that if you separate out those who were actually successfully in their pregnancy pursuit, the average spent goes up to over $48,000. These are costs of just the treatment, not to mention the medications taken in conjunction with the treatment itself. It also doesn't include the costs of counseling, massage or acupuncture - treatments sometimes seen to help with the stresses caused by infertility.
Emotional frustration and thousands of dollars are only 2 of the ripple effects of this condition. Others include marital problems, anxiety, depression, sexual dysfunctions, and more. I can't quite articulate the cost of feeling a tinge of pain every time you see a pregnant woman or hold a child. How can one convey the cost of skipping your best friends baby shower or the struggle to walk down the baby aisle at the grocery store without tears running down your face? What is the cost of a tear?
Anyone who faces this issue can tell you it consumes your life and you feel like a failure with zero control. But what if you have SOME control and you just don't know it. What if there are things you're doing, foods you're eating, or medicines you're taking that are causing these issues and you don't know you're doing it because the people you trust to tell you simply don't?
I was never one to insist that consumers need protecting in every area of their lives. I still roll my eyes when mt Starbucks cup says "caution: very hot". But I feel prescription drugs fall under a different category. If my trusted physician prescribes a medication for me, I feel it is my right to be informed of any major side effects, especially if I explicitly ask what they are. Furthermore, I feel that it is my physician's professional responsibility to be informed of any major side effects of the drugs they prescribe in order to fully inform their patients.
If you're wondering how I jumped from infertility to consumer protection, I'm about to connect the dots.
My 30-year-old husband was prescribed testosterone injections about 2 years ago after routine blood work determined his counts were low. As a health insurance professional, I asked him to ask if there were any "slightly more conservative" treatments, as I know injectable drugs can be very costly. His internist told him there were no other treatments for low T and that this was the only way. He began injecting himself every other week and continued to do so until about 3 weeks ago.
About 9 months into taking the injections, he switched insurance plans and found that the new plan didn't cover injections at all. Again, we sought alternative treatment options and AGAIN we were told that we had no choice in the matter. So in addition to the costs associated with paying full price for an injectable drug (and the needles, syringes, and proper disposal of used needles), we paid for additional office visits and blood work every 3 months to verify his levels were normal and his dosage was correct.
About a year ago, he told his doctor we had begun trying to start a family and wanted to make sure he was doing everything possible to make that happen. At this time, she said he should be in great shape to do so, and to let her know if we were having any issues after 6-9 months and she would refer him to a urologist to get everything checked out. 6 months came and went without any success and I began doing research and found studies that said testosterone injections can lead to low sperm counts. I told my husband who then talked to his doctor at his next visit. She told him that was misinformation and that the testosterone would even HELP his sperm counts and our pregnancy pursuit.
Finally the 1 year TTC (trying to conceive) milestone came and went and he asked for the referral he was promised, which he was given. We got in to see the urologist only to be told it was INSANE that a 30-year-old male with no other known conditions was taking testosterone and that it completely trashes sperm counts. In layman's terms, testosterone tells the testicles that it has alternative sources and production is no longer necessary. He was ordered to immediately stop his injections. The doctor then proceeded to comment on how surprised he was that a doctor who was aware of our struggle to conceive would keep him on a drug that basically made it impossible to do so.
We left angry and confused but were told to submit to a semen analysis to see what we were dealing with. We received the news last Friday that he had a zero sperm count. Not one. When a normal count is 40-300 million, zero is pretty crushing. The doctor referred us to a fertility specialist stating that a zero count is frankly out of his realm of expertise. He also said that, while the testosterone injections would have lowered his counts, there has to be something else going on for them to be zero, and that the injections can't be solely to blame. He was told he would most likely need a testicular biopsy to determine the cause of the zero. My husband was crushed and so was I.
We scheduled an appointment with the specialist (who doesn't take insurance, by the way) and are just waiting now. In the meantime, being someone who has to feel like I'm constantly moving forward, I started researching on my own. I looked into the options available in the event that production isn't possible. I also researched costs of the various treatments and became completely overwhelmed. IVF, ICSI, IUI, and so forth - it was a lot to absorb.
I shared my despair with a friend who reminded me that a mutual friend of ours struggled with infertility for a long time and even began a support group through Facebook called Braving Infertility Together. I was nervous about reaching out because it was all so fresh and we weren't even comfortable talking to family about our situation - but I reached out anyway. And I'm glad I did.
I learned SO much right away. First of all, there's a whole infertility underworld (and language) that no one knows about until you really look. These amazing women have become experts in this field out of sheer necessity. Some of them have been struggling for years and some are new to this world just like me. I read through the various stories and was completely enthralled by and somewhat depressed by how common these issues truly are.
A few days later, I summoned the courage to post about my journey and asked if anyone had experience with zero sperm counts. Not only did several say they did, they ALL said their husbands had been on testosterone injections. Many of them had the exact same experience we did - their doctors put them on the drug without ever telling them there were any negative effects on sperm. Some of printed out articles about it and took them to their doctor who still maintained that was wrong and that the injections help fertility. I found even more examples of cases on various blog posts of women whose husbands had a zero sperm count SOLELY caused by testosterone therapy - and their counts went back to normal within months of discontinuing treatment.
Remember that anger and confusion from earlier? It's back. Someone explain to me how it is possible that these doctors don't disclose something so huge. I did more research. LITERALLY googled "testosterone injections cause zero sperm count" - something these physicians are apparently unwilling or unable to do. I found a Men's Health article on WebMD. In this article, a urologist from Stanford was quoted saying that testosterone is so effective in reducing sperm count that it has been studied as a method or birth control. He went on to say that 90% of men can drop their sperm counts to ZERO while on testosterone. I also learned that it can take up to 2 years for counts to get back in the normal range. Many couples trying for children don't have 2 years to waste.
I came to a few conclusions: the first is that either the physicians simply don't know these effects or they know and don't say. In either scenario, I feel it's grossly irresponsible on the part of the physician. Call me crazy but, like I said, I feel my physician is professionally responsible to both KNOW and DISCLOSE the major side effects of any drug they prescribe me. Hell, Pfizer even lists Oligospermia (low sperm count) as a possible side effect to Depo-Testosterone on their website. What is particularly unconscionable, is the multiple examples (in this group alone) of physicians who didn't just omit the sperm count risks, but even insisted it helps male fertility - all while their patient is SCREAMING it doesn't.
The second conclusion I came to is that I have a personal responsibility to tell people what I know. There are people out there wasting valuable fertile years of their life and thousands of dollars looking for answers when the true cause is right under their nose. I'm not a private detective or research expert. All I did was look. Doctors prescribing this treatment are NOT informing their patients of this damning side effect and it's unacceptable.
I'm not saying that our troubles are 100% caused by this drug. It's entirely possible there are other conditions contributing to this issue. I know that testosterone replacement therapy can solve many issues and can be a great solution for other couples. I'm simply arguing that those taking it deserve to be told the truth about the effects they side effects and THEN make an informed decision about whether if it's the right treatment for them. If your doctor doesn't tell you and your pharmacist doesn't tell you, who will?
References
Fertility and Sterility
https://creatingafamily.org/infertility-category/much-ertility-treatment-really-cost/
WebMD - Low Testosterone and Infertility
http://www.webmd.com/men/features/infertility#1
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