Struggles of Infertility

I know this is not my typical writing advice post. But, the reality is we all struggle with different things throughout our lives and this has been my struggle for a long time, and the focus of my writing, as a way to process my feelings. After all, isn't that what writing should be? A way to write about what we are feeling and work through things, and become better and overcome and deal with struggles as a result? I wrote a similar article on my Facebook page a few months ago, as well as wrote this article for my wonderful aunt's blog, which focuses on how we can be ourselves, flaws and all, and still be incredible women and change the world.

I figured it was high time I shared it on my own blog as well. Enjoy.

It’s been nearly five months since I had surgery. I’ve debated for months whether to post anything on a highly sensitive and deeply personal subject, but have concluded that more people can benefit from having an open conversation and normalizing the topic, than me keeping things to myself.

I struggle with infertility and PCOS.

In the United States, about 11% of women struggle with infertility. That is 6.1 million women between the ages of 15-44. 6.1 million women in the US alone struggle with female infertility! The top two reasons that women struggle with fertility issues are PCOS and Endometriosis. So many couples struggle from the pain of infertility, yet it is brushed under the rug and never talked about. Those that do struggle with it are made to feel like they are less than other women, just because their reproductive organs don’t function at 100%. And, that is only the women. 9% of men struggle with male infertility as well, due to a low sperm count, an issue with sperm production, a motility issue, or something else. With 1/3 of infertile couples, the problem is with infertility in men. 1/3 of the time there are fertility issues, it is because of infertility in women, and 1/3 of infertile couples the problem either can’t be identified and is labeled, “unexplained infertility,” or the problem is with both male factor infertility or female reproductive infertility issues.

Warning for anyone who is not comfortable talking about female health, please keep scrolling.

Everyone has a different story of how they end up discovering they struggle with infertility and may or may not be able to have a child. I share my journey in hopes that others will feel more comfortable sharing theirs and normalizing the topic. And, most women you see in the news or on social media don’t feel comfortable sharing these very raw and personal emotions and struggles until after the success, after they have gotten the two positive lines on a pregnancy test, or after they have their little miracle baby. Mine is not a success story with a happy ending. Not yet. This is my story.

Discovery and Diagnosis

All growing up, I had pretty heavy menstrual periods and a menstrual cycle that was regular, like clockwork. I did tire easily as a teenager, and my endurance was low for physical activities, even for something simple like jumping on the trampoline for more than 10 minutes or running around the yard or biking around the block. But, I was thin and fit and figured my body was just weird. I’m the oldest of seven kids, and my mom is also the oldest of seven kids, so as a teenager, I never thought I’d have any issue with getting pregnant or fertility problems when that time eventually came for me.

Fast forward several years, and I am 23 years old and married to the love of my life. Over the next year, I steadily gained 40 lbs in a year, and energy levels dropped severely, despite eating somewhat healthily and exercising 4-5 times a week in intensive dance classes. I wasn’t sure what was wrong, and chalked it up to just stress of senior year of college and juggling marriage and work at the same time and brushed it off. I would come home from work and school and crash and take a nap around 6 pm, waking up a few hours later. I was always, always exhausted.

As soon as I graduated with my bachelor's in July 2018, we started trying for kids. We arrived at our year mark of being married in September, and my period was over six weeks late, which had NEVER happened for me. I excitedly took pregnancy test after pregnancy test, with no luck of seeing any double lines. I finally go in to see a women’s doctor in my area, convinced I am pregnant, that I am just weird, and my body doesn’t register on a pee stick, that I need blood work done instead to confirm pregnancy, like a few of my friends. After my blood work is done, I am told, not only am I NOT pregnant, but I have PCOS, or Polycystic Ovarian Syndrome, and multiple cysts on one of my ovaries. They also want to run more tests and test glucose levels to see if I also have diabetes or insulin resistance, and do more ultrasounds to get a better grasp of what was going on. Needless to say, we were crushed.

After several more tests, turned out I had insulin resistance, which is pre, pre-diabetes. Insulin resistance and PCOS go hand in hand and are a cycle of one making the other worse. Insulin resistance makes you gain weight more quickly than usual, which then, in turn, worsens the PCOS and makes the cysts on the ovaries grow larger, and that makes the insulin resistance worse and more weight gain and so on and so on. It explained the rapid unexplained weight gain of the past year when before I’ve always been pretty tiny and able to stay a good size. Now I know it was this thing starting to rear its ugly head.

So, what exactly is PCOS? PCOS is Polycystic Ovarian Syndrome, and some of the symptoms include: trouble conceiving or infertility due to not ovulating, painful ovarian cysts, fatigue, weight gain and extreme difficulty losing weight, insulin resistance, low sex drive or painful sex due to the cysts, mood changes and anxiety and depression, high testosterone level, excessive hair growth all over your body and face, or the opposite of having male pattern baldness and thinning hair, and irregular or missed periods. 5% to 10% of all women in the US have PCOS, roughly 5 million women. It is the most common cause of female infertility.

Looking back, was a blessing in disguise that my period was abnormally late last September so I would go into the doctor to see what was going on; otherwise, we would have waited the prescribed year of trying before going in to see what was going on and why we weren’t pregnant yet.

For me, the PCOS is much less severe than for other people, which is a blessing for us, but it still has taken its toll. For me, the PCOS is only in my right ovary, instead of both, so I still have one functioning ovary. However, the PCOS still severely decreases infertility, since I don’t ovulate on one side, which means you can’t have implantation and can’t get pregnant since there is no ready and available egg for the sperm to fertilize. It makes it very, very difficult to become pregnant, and eventually, you can become completely infertile as it gets worse. PCOS is something you are born with, and then eventually, it surfaces when one is an adult. Typically warning signs of it are super light and irregular periods, and people go to get things looked at, and then it is discovered. I had never experienced either of those symptoms my entire life, so in one way we are lucky it got caught so soon by going in for testing to see if I was pregnant, this one random time I was super late for my period.

And, if and when pregnancy does eventually happen, this illness of PCOS increases the risk of miscarriage to 30% – 50% during the first trimester, opposed to the 10% – 15% risk of first-trimester miscarriage in normal women, as well as a much higher level of miscarriages past that first trimester as well. PCOS also highly increases the complications during pregnancy and birth, and the likelihood of preterm babies. So, even once you’re out of that 8-12 weeks zone where most people are safe to tell people and most likely won’t miscarry, there will still be a high risk of miscarriage for anyone that suffers from PCOS.

After the diagnosis in September 2018, I was put on Metformin immediately to combat the insulin resistance, and in turn, hopefully, keep the PCOS in check. PCOS is not curable, but you can attempt to lessen the symptoms and side effects through medication, exercise, and healthy eating.

Hidden Pain of Infertility

People that don’t struggle with fertility have no idea the toll it takes on you, physically and emotionally.

Infertility is endlessly taking medication and vitamins every day, choking them down with juice or water, and having to deal with all of the side effects that wreak havoc to your bowels and send you running to the restroom at the most inconvenient times with diarrhea. Another side effect of taking the medication to keep the PCOS and insulin resistance is nausea in the morning…essentially morning sickness. With all of the side effects of things you do to try and take care of your body for yourself and so you can hopefully get pregnant, you end up experiencing all of the symptoms of what I’m told the first trimester of pregnancy feels like, minus the being pregnant portion, and knowing you are going to have a child at the end to make it all worth it. There is no end in sight.

Infertility is religiously taking your temperature every morning to track BBT (Basal Body Temperature) and daily peeing on ovulation sticks to see if and when you are going to get lucky and ovulate that month, or if you will have to wait until the next month to even try and have a shot at getting pregnant. Most women with PCOS are lucky if ovulation happens a few times a year, and most of the time, that has to be helped along with yet more medication. I’ve been lucky to have ovulation occur about half of the time, but still no luck with two lines on a positive pregnancy test. My ovaries hate me, like they do for most women with fertility issues.

Infertility is people endlessly asking, “when are you guys going to start having kids?” “just lose weight,” “try harder,” “when am I going to have grandkids?” “time is running out,” “enjoy the time with just the two of you while you can, you don’t want kids, trust me,” “I wish I had that problem, all my husband has to do is look at me, and I’m pregnant,” “You’re lucky,” “Just relax, and it’ll happen in God’s time,” “Just adopt,” “You’ve got time, relax,” “When is there going to be a sibling for your other little one?” “Here, take one of mine, I’ve got too many as it is.”

Infertility is looking around, and it seems like every single person, and their dog is pregnant and able to have kids without even trying. It’s going to church or work or the grocery store and being surrounded by adorable kids, and none of them are yours. You long to hold a baby of your own in your arms, yet despite your best efforts, your arms are still empty and barren. You go to the baby showers, and gender reveal parties and see the ultrasound pictures the moms excitedly show you. While you love being a part of their excitement and sharing, you are also holding back tears and concealing an aching heart until you can find a bathroom to hide and cry in, as you wonder if that will ever be you.

Infertility is seeing the “accident baby” or honeymoon babies due to unprotected intercourse. While you are excited for them, you are also jealous since sometimes they didn’t even want a child yet and here you have been trying for months or years and still no more than one line on a pregnancy test. Or, if you are lucky enough to get pregnant, you are just as likely to have a chemical pregnancy or miscarriage.

Infertility is every time you are even just a day late for your period, excitedly convincing yourself you are feeling pregnancy symptoms and peeing on a million pregnancy tests in the hopes that maybe you got a faulty pack, or if you edit the photo or have it under different light it will show that second positive line you yearn for with all your heart. But, still, nothing.

Infertility is low self-esteem and hating yourself and your body and the way you feel and look all of the time and wondering if your spouse would be better off with someone else that can give him the children he desperately wants and watching him with other people’s kids and knowing he would make the most amazing and loving dad if only you could give him children.

Infertility is spending countless dollars on medications and infertility treatments, and being stuck with needles and poked and prodded, with only a slight chance of anything working. It is endless hours of research and chasing down loads of things that could potentially help, only to be disappointed. It is becoming familiar with words and phrases and acronyms you had no idea existed until now: TTC, OPK, BBT, AF, BFP, BFN, BD, Baby Dust, IUI, HSG, IVF, Endo, PCOS, DPO, CD, HPT, M/C, etc.. You become your medical expert and learn terms and things you never imagined you would have to deal with. It is subscribing to at least twenty different Facebook PCOS and infertility treatment groups for support for yourself and to give advice to others about what you have gleaned along your journey and hope that someone else can share a miracle trick that will work for you as well. It is wondering if it will ever all be worth it and what is the point of all of the trying, yet continuing to persevere on the off chance that next month, “will be your month.”

Infertility is endless tears and pleading day and night for God to give you the chance of a child, no matter their physical disabilities or difficulties. You want a precious bundle of joy, no matter what.

Potential Resolution

From September 2018 to August 2019, I took a bunch of medication and vitamins and tried to exercise and eat healthily. Despite my best efforts, because of how difficult it is to lose weight due to PCOS, out of the 40 lbs I wanted to lose to be at the pre-wedding weight before this illness started to rear its ugly head, I was only able to lose 7 lbs. I have very low energy and feel sick the majority of the time and keep pushing through, because that is what you are supposed to do, keep moving forward.

After 11 months of going in for appointments every three months to be stuck with more needles to monitor bloodwork and hormone levels and ultrasounds to see if the cysts were growing, in August of this year, we were finally referred to a fertility specialist 45 minutes away to start taking even more advanced and expensive steps for us to hopefully be able to start our family and have kids. The fertility specialist saw some concerning things on the most recent ultrasound like fibroids (excess tissue that grows on the uterine lining) and polyps (growths inside the uterus, blocking things). The fertility specialist also saw some things that looked suspiciously like endometriosis, another huge illness that affects fertility due to the tissue that makes up the uterine lining being present on other organs inside of your body, which prevents implantation and you being able to get pregnant. We were very freaked out, and afraid that there was yet another thing that was preventing us from getting pregnant, that had just barely grown big enough to be seen on an ultrasound so that we could take care of it. We felt like the past year of trying had been wasted and was all for nothing.

The only way the doctors could officially diagnose if I had endometriosis in addition to PCOS, was to try to remove the fibroids and polyps through surgery and do a biopsy to see if the tissue was endometrial or not. So, on September 24th of this year, nearly three months ago, I went in for my first surgery ever. They put me under and made three small incisions on my abdomen so the cameras and surgical tools could fit inside. During the Laparoscopic Surgery, they performed a Hysteroscopy (removing any bad tissue around the cervix and uterus) and a Hysterosalpingogram HSG (flushing your fallopian tubes with dye to see if there are any blockages, and if there are, to clear out said blockages, so the eggs and sperm can travel freely and meet together to be fertilized, and ovulation can occur). Once they were able to get inside with the camera and stuff during the laparoscopy, it turned out I do NOT have endometriosis!

Hooray! So, we have to worry about the PCOS. They were able to remove all polyps from the uterus, a fibroid that was on a ligament on the pelvis that we had no idea was there, as well as the cyst on the ovary that they have been monitoring since last September when we discovered it, due to the PCOS. It turns out the cyst they removed from the right ovary was 4 cm large!!! Just for reference, an average ovary for a woman during childbearing years is 3-5 cm. It was like a second ovary was nested on top of the actual ovary, doubling it in size. For women that have had children, that is nearly half as large as your cervix is dilated during labor, right before you push out the baby’s head when you are dilated to 10 cm. Ouch.

While the surgeons were in there, they also checked out the Fallopian tubes, and there were no blockages there. So, everything is all cleared out and clean and healthy for the moment. Worst case scenario, things start to grow back in a few months since we have no idea how long the cyst and fibroid and polyps had been growing before we saw them on the ultrasound and caught them. Very best-case scenario, we have years before things start to grow back. So, we have at least several months where we can get the polycystic ovary syndrome symptoms under control because the cyst is cut out and removed and not actively fighting against the weight gain and insulin resistance because of the hormone imbalance. So, essentially, 1/3 of the bad equation of my body fighting against itself has been taken away, so now my body can actually heal instead of just keeping everything the same and not getting worse.

After several weeks of recovery and painful shuffling around, and scars that have still not gone away months later, we are in a much more hopeful place now regarding fertility, now that everything is cleared out and nothing is preventing implantation and pregnancy. We have a few months of trying naturally, before we resort to more invasive and expensive measures, such as reproductive medicine like clomiphene citrate (Clomid) or assisted reproductive technology, like IUI (intrauterine insemination) or IVF (in vitro fertilization).

Very rarely does anyone’s insurance cover any fertility treatment.

Fertility Treatments

IUI, or intrauterine insemination, is a procedure where the sperm are put directly into your uterus, to make it easier for healthy sperm to reach your ovaries and eggs. It is also typically accompanied by reproductive medicine for the women, to ensure that she has hyper ovulation that month and give the sperm a higher chance of meeting the egg and fertilization to occur. It is the less expensive option for fertility treatments, (before you have to progress to the most expensive option of IVF), and is $300 – $1,000 per round.[6] One IUI round (or monthly cycle) only gives you a 10% – 20% chance of getting pregnant, with the average number of IUI rounds needed before you can conceive being 3-6 rounds.  With 3-6 rounds of IUI, the conception rates can be as high as 80%. But, even then, that is just getting you to conceive. There is no guarantee, even with all of the medication and time and money spent, that the pregnancy will be healthy and you will be able to carry your child full-term.

The most expensive option of assisted reproductive technology that you resort to if nothing else cheaper and less invasive is working is IVF. IVF or in-vitro fertilization is where the sperm and eggs are fertilized outside of the woman’s bodies and her uterus, and instead are combined and fertilized in a lab to ensure that an embryo is created, before transferring the embryo back into the woman’s womb. One average cycle of IVF costs $12,000, with the range being from $10,000 – $15,000. This price tag does not include the cost of reproductive medicine to go along with each cycle, which medications can cost you anywhere from $1,500 – $3,000.  Most women who conceive through IVF treatment undergo an average of 3 cycles, with the success rate of each cycle being 20% – 35%, and the pregnancy rates of success after 3 IVF cycles being between 45% – 53%.

To give you an idea, the average woman who is not struggling with any infertility issues has a 15% – 25% chance of getting pregnant any given month.  50% of regular couples conceive during the first 5-6 months they are trying, and 85% conceive within the first year. In most infertility cases, infertile couples try to have kids for years, with no end in sight. And, if and when they are somehow able to conceive, they will have shed never-ending tears, spent countless time, and endless money on medication and fertility treatments to get their miracle baby.

We have been trying for kids for 16 months. I don’t know how some people keep going for 5, 8, or 10 years and keep trying and going. This has been our journey so far. I am so grateful for my amazing husband and him standing by me, through thick and thin, and the tears and sickness, no matter what. I don’t know what I would have done without him.

I applaud any women and couples that are struggling with infertility. It is a hard and long and expensive and lonely journey. Please remember, you are not alone. If you ever need someone to talk to or a shoulder to cry on, I am here for you. Remember it is ok to share, you are not alone, and there are many people who are there for you as a support system. Anyone that belittles or makes you feel less than you are worth is wrong. We are not alone. We are NOT worthless. One day, we WILL get the baby that we so desperately yearn for. It will all be worth it.

Do you or someone you know to struggle with infertility? Share below ways that you have found to cope, or support others in their journey.