Hey y’all! For the fourth day of National Infertility Awareness Week I thought I’d reach out to my family, friends, and social media followers and give them a chance to ask me any infertility related questions they had. I’ve done my best to answer them below!
How long have you been infertile/how long have you had infertility problems?
- I was diagnosed back in 2009 when I was 15 years old, so that would be 8 years.
What was it like receiving an infertility diagnosis?
- Very painful and shocking. It was almost like being punched in the stomach. It took a minute after the doctor told me for it to sink in, and then these waves of grief just washed over me. The pain and grief were so intense, so visceral that I just started sobbing. I think my reaction surprised my doctor and she wasn’t quite sure how to respond or comfort me, so I just remember her handing me a box of tissues and leaving the room. I’ll always remember that day because it was the day that President Obama was inaugurated and the entire ride home from Syracuse I listened to the broadcast of the inauguration feeling completely numb; like time had frozen and I was watching the whole thing from outside of my body.
How did you come to receive an infertility diagnosis?
- About a year prior to the diagnosis my periods became very irregular at first and then stopped completely. I also started experiencing hot flashes, night sweats, mood swings, weight gain, and a host of other random symptoms that didn’t make sense to me, and I didn’t know how to describe to a doctor exactly what was happening. I went to see my regular pediatrician who ran some blood tests and we found out I had a thyroid disease know as Hashimoto’s, so they started treating me for that, but it didn’t cause all the symptoms to go away or my period to return. A couple of months later, still having a lot of symptoms/no period/and not feeling much better my doctor put my on estrogen. That lasted for all of a day; it was awful. My body just couldn’t process it well and went haywire. After that my pediatrician referred me to a pediatric reproductive endocrinologist up in Syracuse. We went through another checkup and more blood tests before meeting with the doctor who gave me the diagnosis of Premature Ovarian Failure with no known cause.
What do you do to treat your infertility disease?
- My infertility and the reason for it, Premature Ovarian Failure, are not curable. The damage this autoimmune disease has done on my body is irreversible. I take a daily thyroid hormone for my Hashimoto’s, vitamin D & calcium to protect my bones as much as possible from the loss of estrogen during my prime bone-forming years, and an oral low dose birth control to help quiet the menopause-like symptoms and avoid further damage to my reproductive system.
What are some positives that have come from having infertility?
- *Exhales air*. This is a tough one. Infertility is really hard almost every day physically, mentally, emotionally, and spiritual. It’s caused me to question my faith and my belief in a loving, just God. It’s made me hurt so deeply and more than I ever though possible. I think the two positives that have come from it are 1) knowing my body pretty well and 2) strengthening my marriage. I’ve come to understand more clearly what my body needs and to voice that even when on the outside I might not look “sick” to anybody else. I’m also able to advocate for myself with my medical team. Even if on their tests things look within the normal range I can tell when they aren’t for me, and can push to get retested or have my treatments changed. My marriage is stronger because my husband and I have really supported each other through the tough days. We’ve learned how to communicate not only when we are having a tough time, but why, what it feels like, and what we need so that we can help the other to understand. We’ve also been able to spend the last two and a half years focusing on each other, spending lots of time together, and building a firm foundation within our marriage.
What is it like living with infertility?
- If I had to sum it up in one word I’d say complicated. Not every day is a rough day; there are days where it doesn’t come up in my thoughts or where it doesn’t upset me as much. The flip side of that coin is that there are definitely days where is rough in varying degrees. Some rough days I’m a just little more tender and other days it just knocks me to my knees completely exhausting and overwhelming me. It’s just one of those things that never really goes away entirely.
Who can experience infertility?
- Pretty much anyone who is alive. Both men and women can and do suffer from the disease of infertility. It does not discriminate against gender, age, race, sexual orientation, religion, educational level attained, or socioeconomic status. It can be explained or unexplained. It can show up on its own or be caused by another disease, like mine. Or it can be caused by treatments for another disease like chemo and radiation for cancer.
What resources exist for those who have infertility, specifically men with infertility?
- In our local area, Ithaca and the surrounding towns, there really aren’t a whole lot of resources for those with infertility. Very few local providers are versed in it, and there aren’t any fertility specialists or clinics. Our area also lacks any support groups for those with infertility. The closest ones are located up in Syracuse and are affiliated with the CNY Fertility Center. There are a lot of infertility support groups online from the general, to ones specific to certain causes of infertility like Polycystic Ovarian Syndrome or ones just for men with infertility. The larger the city that you live in the higher the likelihood you have of finding more resources for infertility. The best place to find information about support groups, events, practitioners who have experience with infertility, and more is often fertility clinics. Even if you’re not a patient or aren’t pursuing treatments they are usually still happy to provide that information to you. Resolve: The National Fertility Association also offers help finding support groups, information about infertility, and a calendar of national infertility related events.
I honestly wish I had more help to give on this subject and that there were more support options, but unfortunately right now, especially in this area, there really aren’t. There’s even less guidance on infertility offered by the LDS church along with most other churches. Hopefully through raising awareness during events like National Infertility Awareness Week and sharing our stories we can change that.
*Disclaimer: I did try to start an infertility support group in Ithaca but it never went anywhere because there just wasn’t enough support from local practitioners and community members.
How do you take care of yourself when it’s a rough day infertility-wise?
- Each person with infertility has their own way of handling rough days. It’s such a personal thing. For me, I try to avoid them if and when possible. If I know a certain situation is going to cause hurt I avoid it, so I generally don’t attend baby showers or baby blessings (if I know about them in advance). I avoid most Mother’s Day events like the plague. I do my best to take care of my body even when I’m unhappy with what it can’t do. I try to be honest that I’m having a rough time and need some space and what that means for me. And sometimes I do the things that are hard to admit to but so cathartic; I cry, I scream, I yell at God for letting this happen to me, I get angry, and sometimes I just sleep a lot until the pain mellows.
Why don’t you just do fertility treatments?
- Well.. for starters there is no such thing as “just doing fertility treatments”. Some fertility clinics have wait lists that are months long before you can even get a consultation to see if they’d be a fit for you. Sometimes they aren’t a good fit for the specific fertility problem. Before you can begin you go through checkups, blood draws, surveys, medical histories, sperm and egg quality testing, and tons of different imagery tests to help the doctors get a better sense of what shape your reproductive organs are in. You’ll also likely meet with an insurance specialist and financial planner. You might have to apply for grants, loans, fundraise, or take out a second mortgage. Fertility treatments are really invasive and require a lot of time. There are weekly (sometimes multiple times per week) doctors appointments. Near constant medical monitoring and blood draws. A cocktail of hormones that must be taken on a pretty set schedule because timing is everything here. For a lot of people that means carrying their medications with them and giving themselves injections in the car or the bathroom at work or church. The side effects of these medications are tough on your body and the emotional roller coaster the process sends you on is not for the faint of heart.
For Jon and I there are two main reasons why we are not currently pursuing fertility treatments.
The first one being cost. Because of my extensive fertility issues the only treatments the fertility clinic stated would be a fit for us are “the big guns”; IVF with donor eggs and an impressive amount of hormones given though 3 different routes (oral, injection, and vaginal suppositories). We were quoted a cost of $30,000 for 3 cycles (3 months) with approximately a 50% chance of conceiving per month should no other unforeseen issues arise, which they couldn’t guarantee. So if we wanted to try a year of fertility treatments, because for us they stated it could take that long or longer, it be about $120,000. That $120,000 would be all out-of-pocket because our insurance wouldn’t pay a dime because they, like most insurance companies, see fertility treatments not as a cure for a disease but as an “elective procedure” like breast augmentation. We are not in a place where we can afford to take on an extra $120,000 or a loan for such a large amount. Most grants for fertility treatments will only cover a silver of that fee and have so many applicants that the likelihood of receiving one is slim. Honestly, at this point, I don’t know a time in our lives where we’d be able to afford something like that.
Second, would be time. The closest fertility treatment clinic to us is in Syracuse a few hours north. We’d both have to miss a lot of time from work to drive back and forth for the weekly appointments and monitoring. I don’t have paid time off so that would hit our finances even more. We’d also likely face disciplinary action for missing so much time from work, like so many others struggling with infertility, because fertility treatments aren’t covered by the Family Medical Leave Act or most company policies.
Why do you share your story?
- I share my story because I want other women, men, and couples to know that they aren’t alone. When I was diagnosed I felt so lonely; like I was the only one in a sea of people surrounding me dealing with it. I didn’t think that anyone understood what it was like to be infertile. I didn’t know what to do or what my future would or could look like. No where in my health classes did we talk about infertility or what other options for growing a family might be; only how to prevent pregnancy or options if you did get pregnant as a young adult.
I felt like infertility made me less lovable, and I questioned who would want to marry a women who wouldn’t have children. I felt like my infertility made me less of a woman. I want to change that. I don’t want anyone else to feel like I did; to feel so hurt and raw and misunderstood and abandoned by God. I also want society to change. I want those with infertility to have options for their future and be able to afford them without going so deep into debt. I want churches, family members, friends, employers, coworkers, government, society as a whole to be understanding, accepting, to stop ignoring it, and to stop making such hurtful statements about it (because yes even in 2017 they still do). I don’t want anyone else to feel ashamed, guilty, punished, or less than because of a disease that is out of their control.
If you have any other questions, or if reading the responses above makes you think of any more questions don’t hesitate to leave a comment or send me an email at firstname.lastname@example.org.