Ok, I was not kidding before when I begged for more squawk boxes. I really need you to send me your stories! Share Share Share! I am dangerously low and want this to keep going. But that is only possible if you continue to share your experiences. Talk about anything to do with your story: Fear, joy, weight, beauty, gender identity, TWW, IUI, IVF, Clomid… what have you! Go nuts! Can’t wait to read and share them.
Send them here: firstname.lastname@example.org
Today’s story comes from M.J. who wishes to keep her real identity private. I have been keeping tabs on this chica for the last few months, our cycles were very close to each other. I was thrilled when she sent me her story to share! I chose the spark for a picture today to represent that tiny glimmer of hope that keeps us moving forward on our journey. Sometimes, it’s all we can do to hold on to that tiny light and keep walking. May your tiny light sustain your journey as long as you wish it to.
IVF in a single-payer system: shame, isolation…and a glimmer of hope
Written By: M.J.
Published with the author’s permission.
When I was 30, and my husband 36, we decided it was time to try for a baby. And as in many other cases, ‘try’ was not exactly the right word. We tossed the condoms, and waited for something to happen. It didn’t.
In the year that followed, I landed my first ‘proper’ full-time job, and a good one at that, despite my age and a horrible economy (being a native speaker of English helps). Trying for a baby, if that’s what that was, became an on-again, off-again project. There was no hurry. When my sister-in-law gave birth at 37, she was the youngest woman in the ward that day. This is pretty normal where we live; jobs are scarce, young people are unemployed and afraid to start families without savings and stability.
In the following year, I decided it was time to get serious. I downloaded a ovulation calendar for my phone. Eventually I bought some Clearblue testers. About this time, however, we hit a major hurdle. My husband got a kidney infection that landed him in the hospital. He recovered, and some time later, we resumed baby-making activities. And the day afterwards, I came down with the first bladder infection of my adult life. A month later, the same thing happened. I went from having an imperturbable bladder to having 5 UTIs in one year, all postcoital, some even after I had learned to void my bladder immediately after sex (something I had never bothered with before). If I want to visit the emergency room in 8 hours, all I have to do is ‘prop up my bum’ like Lucy does in the film Maybe Baby.
I know some of you have real problems I can’t even imagine. Some women may have that many miscarriages in a year. But the UTIs were a 10 on the moodkill scale. They made me dread sex, and my husband was already avoiding it, partly out of concern for my health and partly because of the dark cloud of depression forming over our obviously fruitless efforts. The infections got so bad that I would go from a tiny twinge and “wiping pink” to peeing blood and clots in 4 hours, accompanied by crippling pain, fever, and urgency.
I’ll never forget the snippy nurse I handed my urine container to one day. She peered at the Halloween koolaid within and spat, “what do you expect me to do with this? It’s all mixed up, didn’t you think to wipe first?”
I can’t recall if I screamed, “I’m not on my period, you vile harpy”, because I was pretty delerious. Anyway, it was enough to make her snap to attention and get me in to see my doctor in about a minute and a half. This is no mean feat in my local public primary care center. Strangely enough, in my experience, the nastier a nurse is to me, the more effective she is when she decides to be my advocate.
Over the years, three doctors have dismissed my speculations that my husband was still carrying around a few germs from his own UTI that he was then passing on to me. He’d have symptoms, they said. It’s bacterial, not some virus he would become immune to. One doctor, though, said that there could be a small chance of this happening. Too bad I rarely saw the same doctors. The infections would just crop up anytime, any place, and I’d have to hightail it for the nearest emergency center. Not an ideal way to have any sort of follow-up. In the meantime, sex was infrequent and unappealing and we had never achieved a pregnancy.
Time dragged on, but still I hesitated to see a doctor about my infertility suspicions. Two full years would pass before I would take that step. I was absolutely crippled by shame. You see, I had a pretty good idea about why I wasn’t pregnant. Mostly it was because we were barely having sex, and that’s something I didn’t feel like confessing to a specialist. The shame.
Over those two years, I counted only 9 or 10 months in which we had had sex in the neighborhood of my ovulation time. As you know, at least five of those encounters had been followed by a massive UTI and antibiotics, and that certainly didn’t sound favourable for implantation (but that’s just more speculation). I clung to the delusion that we were merely unlucky, but I saw the doctor in the end, without mentioning our maybe-once-a-month sex policy. She put us on the list to see a specialist. It would be 9 months before our names were called.
In the meantime, we did some homework in private clinics and, to my great surprise, we did seem to have legitimate problems. Tests determined that my husband had 2% normal sperm morphology. I had a fibroid that didn’t seem too terribly problematic, but might decrease the probability of implantation; the idea of PCOS was tossed around but never really confirmed. There’s probably a lot of things on me that no one bothered to check out because they were adamant that, due to male factor, our best bet would be IVF with ICSI. The public hospital confirmed this, and after hysteroscopy and blood tests, we were cleared to go ahead with IVF. Another 6 months on the waiting list sounded doable, so we stuck with the public system. For the record, there are places in Europe where non-residents can undergo IVF at a private clinic for €3000-€4000 a cycle.
Antagonist protocols are more commonly used than agonist protocols in Europe, and that’s what I had: Gonal-F with Cetrotide and Ovitrelle. (Financial trigger alert: I paid 16€ for the lot with a public-system prescription.) My protocol was just a week and a half, quick and easy. Except for the cetrotide. I hate those little bastards that you have to mix yourself. I developed a possibly unorthodox way of getting the bubbles out of the syringe, because they’re resistant; I squirt them back into the vial, not into the air, so that I can reload any escaped meds. I have no idea if this technique is acceptable, but the instructions were hopeless and I wasted two doses by following them to the letter. Something must have worked, because I made it to retrieval.
Meanwhile, a lot of ultrasounds happened, and not the good kind. I don’t know if it’s because of the fibroid or because I’m a sissy, but I find trans-vag painful. I asked a lot of questions; some the doctors answered, and others they pretended they didn’t hear. I swear one of the residents is 24 years old. But although their stirrupside manner could be better, I really trusted the public doctors not to push my limits, not to let me go into hyperstimulation. They aren’t there to set records for egg retrieval, because I’m not paying them for inflated results. And if I get sick on their watch, they and their colleagues will have to fix it on the government’s dime, and that takes time away from other patients who have waited for months. They make sure that doesn’t happen. My Gonal-F dose started at 150 and tapered down to 100 at the end. One minor disadvantage is that my follicles were probably not monitored as closely as they would have been in a private clinic, since the Assisted Reproduction department is not open on weekends, and my trigger shot actually fell in the middle of a 3-day weekend.
On retrieval day, they put me on twilight sedation and came up with 10 eggs. The scariest of my doctors even told me I’d done a good job. I felt fabulous afterwards and definitely overdid it running errands that day. By now, I knew all the other retrieval victims by sight, but we’re terribly shy around each other and don’t talk about the hard stuff. Think of it this way: these women are almost certainly on similar protocols to mine, and most are older than my almost 34 years. The same team is performing our retrievals and transfers assembly-line fashion. We wouldn’t compare our egg counts any more than we’d talk about our salaries. We wish each other good luck and sit in miserable, tense, isolated silence. That’s why online support groups and communities are so important; I swear I was floundering in a sea of just shoot me now before I ‘met’ Kaeleigh and she made me laugh like a lunatic.
But back to the eggs. Only 6 were good, and just 4 fertilised. What they do for borderline sperm is divide the eggs into an ICSI group and a regular group (I’m assuming 3+3), to see if they fertilise ‘naturally’, operating under the assumption that any that fertilise without ICSI are more likely to be chromosomally normal. Of the 4 that worked, I don’t know how many required ICSI, or if rescue ICSI was used in the regular group. They are not at all forthcoming with details in this system, and sometimes I lose my head and forget my list of questions.
The Assisted Reproduction Department only does 3-day transfers, and they do them without a run-through. No frills, no husband allowed in the surgical area, no monitor, no Kodak moment. The walk into the surgical area usually involves crossing paths with fast-moving gurneys of people in pretty bad shape. I’m ashamed to admit that I panicked during mine. I just felt so…open, like there was practically a draft on the back of my uterus, and it didn’t help that they asked me not to breathe. I felt like a kid waiting to have a splinter pulled out, because I thought somehow it would hurt and I would have to resist flinching at all costs.
Somehow the transfer got done anyway. The doctor was so fast once I pulled myself together, I couldn’t believe it, which brings me to another point about doing IVF in a single payer system. My ladies may be overworked and cranky, but they are the most technically competent doctors in the country. They had to come out on top after countless rounds of competitive exams in which 10 doctors may be selected out of hundreds of candidates. They went to public universities; private ones are frowned on because they are for students with more money than brains. They are under immense pressure to achieve as many pregnancies as possible in the first transfer of the first cycle to shorten their waiting lists and use public resources more efficiently. I’m sure private clinic doctors would do their best, but the monetary incentive of doing another cycle would always be present. The bottom line is that my doctors are genuinely hoping I’ll get pregnant so they don’t have to do another transfer. Meanwhile, I’m really hoping I’ll get pregnant so I don’t have to experience the shame of seeing them again after my meltdown. Just kidding. Actually, I don’t know if I’m kidding.
So now I wait. Sometimes I get so lost in the process, in the appointments, in the calendar that had to be adapted to the fact that my husband had to work overseas for several months- that I can literally forget that the goal is a baby. I catch myself thinking in terms of achieving the pregnancy I’ve never experienced, because that would be my Everest. And then I feel so wretchedly ashamed of not thinking about babies, which all of you want so much. Almost as ashamed as I felt when I thought we would be asking for a public system fertility treatment due to lack of sex. Or when I had a panic attack and almost blacked out during a simple embryo transfer. Shame leads to isolation, because it keeps us from talking about what we’re going through. By writing to you lovely ladies, I’m trying to break through that isolation. Even if you think I’m awful for not thinking (daring to think?) about babies, and even if you resent me for having access to IVF in a public single-payer system.
Failure is my biggest fear. I just want the failure to conceive to stop. Only then will I be able to think about babies or the future or anything else. And who knows, I may be on my way. I’m pretending my 10-day bloat is an external manifestation of hope.