I am a verbal processor, through and through. I need to say things out loud or they do not make any sense. Often that means saying them out loud to myself so that I can hear the words and feel them leaving my face. Recently a friend of mine reminded me of how helpful verbal processing can be for emotional processing and suggest I write my journey down.
A journey can mean just about anything these days, but currently, mine is one that many women are going through, have gone through, and will go through. I am sharing now so that those who feel or have felt what my heart is feeling can be reminded of what I constantly need a reminder of – you are not alone. Infertility sucks.
Infertility can mean many different things to each individual woman. I am going to share my specific journey so that those who can identify with some of it can feel a comfort and sense of community that can prove to be extremely therapeutic. I am going to be very blunt and use no modesty, so continue with caution.
My journey started in college. I started to have periods with an insane amount of pain and a very heavy flow. My cramps kept me in bed, sending me to the toilet over and over for several days. I was so irregular; I would go between having pads and tampons with me wherever I went to not having any at all in any place. I would have two to three periods within one month and then not have another for five to six months. All of this was strange to me. I started having periods when I was nine years old (yes, nine) and was very regular and had minimal cramping. To start being so irregular made me feel like something was not quite right.
After not having a period after seven months (and having a zero percent chance of being pregnant), I finally went to the doctor. They ordered an ultrasound and found a large cyst on one of my ovaries. Even though it was only one, I was diagnosed with polycystic ovarian syndrome (PCOS) and endometriosis. The best course of action: birth control pills. Initially, I was not fond of the idea of taking birth control. My mother had a stroke in her thirties and the only real lead doctors had on a cause was the birth control she was on. Needless to say, I was not leaping with joy at the idea of taking birth control myself, especially since there was no need to control birth as I was practicing abstinence. I decided after a few months and a nasty period and bout of cramps, this was my best option. A follow-up ultrasound after another bad period showed that the cyst had burst and dissipated.
Fast forward several years: I married my best friend and we had the same ideas about when to have kids and how many we wanted (I may want a couple more than he does). We decided to start trying to have kids so I stopped taking the birth control. I did not have a period for over six months after stopping. A tiny glimmer of hope would creep into my mind that maybe, just maybe, I got pregnant on the first try. Silly me.
I finally had a very painful, very heavy period that was different than anything I had experienced. My GP said I most likely had an early miscarriage. What a heart break. I might have finally conceived and I didn’t even know it. Part of me wishes deeply that I did not know. If I had life in me that is no longer there, there is a part of me missing that I will never get back.
We tried to get pregnant on our own for a year before we decided to see a doctor. I went for an annual visit and after discussing the symptoms, the doctor called for blood tests. The verdict: I had a very interesting cocktail of off-balance hormones. They sent me off to an in-house fertility specialist, a doctor that I would end up seeing very often. I was told (again) that I have PCOS even though I did not actually have any cysts on my ovaries – very confusing information. My hormone imbalance and anovulation had a direct relationship with the PCOS. The final verdict: I don’t ovulate, or at least not very often. I was also told that I had a low level of AMH, a hormone that indicates how many eggs I have left.
At this point, I had not had a period in about three months. I was given progesterone pills to take for eight days to bring on a period and when I had the period and it ended, I was given Clomid for five days, a prescription drug to stimulate ovulation. We did this for two months while I took ovulation tests every day without a single positive test. For those who have done ovulation tests or will do them, use a bigger cup than a little Dixie cup. I can not tell you how often I get pee on my hands and all down my legs. (I wash my hands every time, promise.)
Clomid can have many side effects – mine were fatigue and irritability. My poor husband. I knew I was not quite myself when I snapped at him for asking me to do something extremely reasonable: put the chicken (that he grilled and that he cut up for our lunch salads for the week) in a tupperware and in the fridge. Apparently, I did not like the way that he said “maybe you could put away the chicken while I take a shower.” My crazy brain wanted him to ask more directly and maybe while also on his knees and presenting me with chocolate and a beer and tiara.
Two months of Progesterone and Clomid with nothing to show for it. During the second month, I was brought in for an ultrasound during the middle of my “cycle” and they found a large cyst on my left ovary. They said it could be me getting ready to ovulate or it could just be a cyst. We continued on to the rest of the month and did not get pregnant. I did not have a period on my own so I must not have ovulated. More progesterone.
My doctor ordered a hyterosalpingogram (HSG). For those who do not know what that is, it sucks. They insert a catheter in your cervix and inject dye into your uterus while you are under an x-ray. My body did NOT like having the catheter inserted. I started to cramp something terrible. Using the x-ray and the contrast dye, they look for irregularities in uterus shape and to check if the fallopian tubes are open by looking for the dye to flow through. My uterus is retroverted (it leans backward) but otherwise looked great and one of my tubes is open. The other tube was slightly blocked until the doctor pushed more dye through to open up the tube. By pushing more dye in, my muscles contracted even more. I can only guess that the pain I felt was something like childbirth. I almost passed out after the procedure from the pain. I sat there, pantsless and covered in lube, blood, and dye, unable to move without wanting to puke. Nurses came in to take my blood pressure and try to keep me awake as I went from feeling nauseous to sleepy. It took several minutes before I felt strong enough to get dressed and cleaned up. Afterwards, I took an antibiotic to make sure I did not get an infection. That antibiotic made my stomach churn every day I was on it. The whole procedure resulted in us having to pay over $1,250 after insurance paid their portion.
I was given Progesterone again (which makes me very, very sleepy) but this time for five days instead of the previously prescribed eight. I waited two weeks for a period and nothing. Finally I called and they prescribed eight days of progesterone, again. I was exhausted. At the very beginning of my cycle, I was brought it for yet another ultrasound to get a sort of “base line” on my ovaries. It appears as if I have two follicles on my left ovary and two tiny ones on the right. I was prescribed Clomid again, but my pharmacy called the doctor back saying that my insurance did not cover it. After some research, I found that the manufacturers don’t make Clomid anymore and that some pharmacies will make it in-house. Nevertheless, they called my doctor and so I was prescribed five days of Letrozole, a different ovulation stimulant. Letrozole made me very depressed half of the time and crazy energetic other times. It did seem a little more encouraging when I started to look into the difference between Letrozole and Clomid. I will go back this week to get another ultrasound to check on the progression of the follicles in my ovaries, if there is any progress. This is my third cycle of hormone therapy.
If this cycle does not work, we will do one more month of ovulation stimulant hormones. The next step, or at least what I have been told, involves a different type of hormone, a follicle-stimulating hormone or FSH. I would take it orally or eventually as injections. The chance for twins and triplets increase once I move to injections. After that, we have to decide between three options: In-vitro fertilization (expensive), adoption (expensive), or we give up (heart-breaking). IVF on average costs $12,000 (per each attempt) and is not successful every time. If we went the adoption route, adopting in-state is also about $12,000. To reduce some financial stress, we could consider foster-to-adopt which would take a very long time and there’s the possibility that we do not end up with a child at the end of the process.
If you haven’t already guessed, taking different hormones can alter your emotional and physical state drastically. I go through bouts of anger and irritability, my weight fluctuated for awhile and then I just keep gaining weight, I get very sad very often, and I am constantly tired. The hormone imbalance caused me to gain weight and the doctor’s orders for combating the weight gain is to work harder to lose weight. Putting the hormones aside, this has been one of the most emotionally draining chapters in my life. The ups and downs of hope and disappointment have all but destroyed my optimism. I’ve struggled with depression and sadness before, but going through this is a whole new level. My brain knows what is true, but my heart cannot help but seek the darkest corners.
My husband is seven years older than me. He waited for a long time for a wife and kids. Our dating was the most fun time in my life and I still cannot believe he asked me to marry him. I was so excited to have kids with him. He wanted them, I wanted them, he wanted to be a father, I wanted to be a mother. When I first started realizing that getting pregnant was going to be more than just having lots of sex (which I naively thought would be the key), I kept falling into a dark place in my mind. How awful for my husband to wait for a wife and when he finally gets one, she’s broken and can’t give him the kids he wants. All of the doctor visits, prescriptions, mood swings, financial kick to the face, and the sick days, my husband loved me the same every day. He cared for me and checked on me. He’s taught me to rely on the Lord more and to look on the bright side whenever there was a glimmer of sunshine. He has been my rock and I am grateful for him. So in my mind, this man does not deserve to deal with any of this crap and it made me feel even worse. I am a burden.
I know that I am just one of literally millions of women that struggle with getting pregnant or keeping a pregnancy. I know that my year and a half of struggle is a drop in the bucket to women who struggle for five, ten, fifteen years to get pregnant. We’re surrounded by accidental teen pregnancy and extremely fertile couples who get pregnant just by looking at each other. We envy those who are pregnant and have babies. It does not matter what side you stand on, hearing about someone having an abortion while you sit there without any baby inside you is devastating. Why can’t I have your baby? Why can’t I get pregnant as easily as you?
Then there’s being in community with those who get pregnant whenever they decide. They just “decided it was time for another” and before you know it, they have their ideal number of children. I don’t know what water they’re drinking, but I want some. In the same community, you’re surrounded with those who have been trying for years and have miscarried. How can I even begin to feel like I have the same struggles as they? I have not felt the same heart-break as they have.
The weirdest person to deal with is the pregnant women who feel like they have to hide their pregnancy from me. Personally, I feel very strongly that women who are pregnant should not feel one ounce of shame for being around those who can’t. Let us celebrate your pregnancy with you. Your joy and excitement does not take away from mine. I am happy to have your support and to talk about your pregnancy. It may sting and I may be jealous, but that’s an issue with my heart, not yours. Let me partake in your joy as you await the arrival of your little one.
I wrote this so that I could share my story and seek community with other women who have experienced even one part of what I’ve experienced. I do not have all of the answers and I am by no means an expert. I’m just verbally processing and hoping that someone is listening. If you want to verbally process with me, I’m here.