In the lead up to Giving Tuesday this year, RESOLVE has invited bloggers to write about a specific topic each month prior to December 1, 2015. October’s is RESOLVE to Give Voice. If you would like to participate, you can find more information at the RESOLVE Giving Tuesday blogger information page.
Giving Voice to my Infertility Story
My story is like that of many others. Since I was a small child I dreamed of growing up, getting married and having a family. I tried for three years with my ex-fiance to no effect- he suspected he had issues, but it turned out he doesn’t. After we broke up, I met the man I was actually going to marry. We decided to throw caution to the wind and to not try, but not prevent. A couple of years went by with nothing happening. I knew something was amiss, but at the time I lacked the coverage needed to see an RE, so we were on our own. A couple of years after that, having finally secured coverage, I got to see an RE, and we started the treatment process.
I got in to see an RE quickly, went over family history, my health history, and my sexual history, had about a dozen blood panels, ultrasounds, HSG, etc. I’d just quit smoking again using Chantix, so my RE recommended I come back in 3 months to finalize a treatment plan. During this time, I got a call from my RE that my husband and I both look great on paper, and he set my followup appointment for May.
When May rolled around, I went to my appointment to get the ball rolling. Upon talking to the RE, he wanted to do an ultrasound, and during the ultrasound he found a large cyst on my right ovary. The cyst was actually so large he wanted me to start birth control with my period which was due any day. He also took several more blood samples to run yet more tests. Later that day I got a call from his office telling me I wouldn’t need the birth control, that I was actually pregnant, and that I needed to come in the day after tomorrow for another blood test. I went in for a second blood test, and that was when things went sideways. Two weeks after that date I was in surgery for an ectopic pregnancy. It turns out the HSG had opened my severely scarred left fallopian tube, which ended up causing an ectopic pregnancy. During surgery I had my cyst drained, and my tube and baby removed.
Three months after that I was back on the horse, ready to go. The plan over the next several months was to use clomid or letrozol to try and force my right ovary to ovulate, then to have an IUI. Several months went by however with only my left ovary responding to the medications. During this time frame I also switched RE’s twice, trying to find the doctor with the best bedside manner for my needs.
I was finally able to do an IUI in February of 2014, resulting in a negative test. At this point my RE told me that my best option was really going to be IVF. So, I stepped back and began saving the $$$ needed to attempt a round of IVF.
‘Insurance’, throughout all of this, has only ever covered appointments, bloodwork and ultrasounds for me. My IVF, IUI, and all medications related to those cycles are all paid 100% out of pocket by my husband and I.
To afford IVF, I started with research and outreach, and through a friend on Twitter I found a clinic in Syracuse, NY that has affordable IVF plans, which also do not require credit. You pay half upfront, and the other half over the next 12 months. My husband and I saved, did odd jobs, held garage sales, and had a GoFundMe page, and in the fall of last year I had my first round of IVF.
Luckily, I respond well to the medications, so low doses work well for me. At retrieval I had 17 eggs, 10 of which were mature and 9 fertilized. We had 2 for a 5 days transfer and 2 to freeze. Sadly my fresh transfer resulted in a negative, just as the IUI had. A month and a half later, I had my frozen embryo transfer, which resulted in a negative as well.
At that point I went back to my RE and we pored over everything. We decided at the time that I would consult with a local endometriosis specialist, as I had symptoms and a family history of endo. We decided to schedule excision surgery before I did a second round of IVF. I had my laproscopy in June of 2015. During my lap, instead of endo they found several serous cystadenoma with borderline malignancy, in other words, tumors. Luckily they were not cancerous, but they were irregular- they were tumors normally found on your ovaries, that were instead on my pelvic wall.
What this now means for me is that it is recommended that I undergo a full radical hysterectomy as soon as I can. These tumors will grow back over time, and have a 30% risk of being cancerous when they do grow back. The only way to prevent regrowth is for my uterus, both ovaries, and my cervix to be removed. Seeing as how I am still trying for children, I have been cleared to continue trying for the time being, so long as I have CA125 bloodwork and an MRI every 6 months.
This leads me to today. Nine long years have passed since I first started trying. Time is not my friend. Even more than with ‘normal’ infertiles, it is my mortal enemy. Whereas most are racing against the standard loss of fertility that comes with getting older, I am racing for my very life. The biggest struggle in my infertility journey is dealing with knowing just how much time each step takes. It would be bad enough even if it didn’t take a year to save enough to afford the cost of treatment. Mentally, it is crippling. Each round still costs anywhere from $10-15,000 (a full year of in-state tuition for the child I might have!) out of pocket including medications and travel. I am now in a financial race to beat the clock, and I’m still losing.