Wednesday, September 30, 2015

What we don't talk about when we don't talk about infertility

For the past four years I have been part of a movement that seeks to de-stigmatise talking about female sexuality – in particular, our abortion stories. But abortion stigma is part of a larger attempt to silence women when they try to talk about their experiences with basically everything to do with reproduction, whether it's infertility, miscarriage, menstruation, menopause, pregnancy, childbirth, and post-pregnancy experiences. There is an unspoken feeling that these things are best shared very, very privately. And of course, these are private matters. But the consequence is that often women feel isolated because they don't feel comfortable breaking the silence.

Over the past four years, I have also struggled with unexplained infertility. I've had many, many tests ranging from simple blood tests, to slightly more invasive, to surgical. I've spent too much time on Google and fertility messageboards filled with other women desperate to talk with others who are going through similar issues. I've peed on a lot of sticks to see if I was ovulating or pregnant. I've spent weeks taking my temperature every day before getting out of bed. I've inspected my cervical mucus. I've tracked and charted my menstrual cycle. I've abstained from alcohol and medication during “the two week wait.” I've spent hundreds of euro on acupuncture. I've taken supplements such as vitex and mexican yam. I got vitamin B12 shots. I cut back on soy intake. I stopped eating gluten. I drank more water. I took Clomid. And finally, I tried to stop thinking about it altogether.

You'd be amazed at how many people seemed to think they were going to cure my infertility by telling me to “just stop thinking about it!” And yes, everyone knows someone in their 40s who just suddenly got pregnant. My own sister is one of those lucky ones. And no, it doesn't mean that my chances aren't as bad as I think. And yes, I've read that article by the woman who decides to find out where the dire statistics for fertility of women after 35 come from and golly gee it turns out the studies are really old! Yeah, well, all the New York Times articles in the world aren't going to magically make me pregnant.

One thing I knew I'd never try is IVF. Well, that's only slightly true. I was told that with my medical card, the HSE would give me one free round of IVF, which I thought was fairly generous and incredible. But oops, it turns out they only give free IVF to women under 40. This would have been useful information when I was 38 or 39 and going to the infertility clinic at the Rotunda Hospital. But that's the thing. Using public healthcare meant that I was only seen twice or three times a year. I had faith that if I just kept at it, I would conceive naturally. But when it didn't happen, I had spoken to enough people who had gone through the pain and expense of unsuccessful IVF that I knew it wasn't for me (or maybe not unless I won the lotto).

But after a little research, I thought I might give IUI at go. IUI stands for Intra-Uterine Insemination and it's often referred to as a “glorified turkey baster.” But there's more to it than that. First you are given medication to inject yourself with starting two days after your period starts. Using ultrasound scans, they track your follicles as they grown to 18mm or so. Then, ten to twelve days later, they tell you to take a “trigger shot,” which is a different medication. Two days after that you go in and they inject treated sperm through a tube directly into your uterus, bypassing the long journey that the sperm usually has to take up the vagina and through the cervix. (That's unfortunately one syllable too long to sing to the tune of “Over the river and through the woods.”) IVF costs €4,000 to €8,000, while IUI costs €850 (not counting a couple of extra tests that might be needed on the first time out).

Funnily enough, giving myself the injections wasn't nearly as difficult as I expected. It didn't hurt at all – it was more the idea of it and the anticipation that made me anxious. And the second time I did it, it left quite an impressive bruise. But once I got the hang of it, I didn't mind them at all and in fact I felt sort of tough. That is, until I saw the special needle for the trigger shot. But, I managed it, and I have to say that giving myself injections was the least painful, inconvenient part of the process.

In retrospect, we picked a bad month to try IUI. I started the injections the day before we moved house. The move took well over a week and cost a heap of tears. Moving is stressful at the best of times. Under the influence of fertility hormones? Not recommended. I didn't know myself. I became a different person. Someone mean. Someone with an endless supply of rage. Someone I couldn't help becoming. And I couldn't have a drink to relax, either. In fact, I couldn't even take my allergy medication, so on top of everything I was a sneezing, wheezing mess. My poor husband handled me with incredible patience, though he did admit that in eleven years he'd never known me to be that way. I was scary.

I was also a bundle of nerves. For the first time in my life, I spent a sleepless night suffering from an acute panic attack that manifested itself as crippling chest pain. And they told me to lay off intense exercise, so I couldn't go running to let off steam.

I knew that my chances of success were low. And I knew that they were even lower during a time of significant stress. And, of course, that stressed me out even more. And, of course, I'm sure that lowered my chances of success, and on and on.

The thing about fertility is that there is some information that is set in stone, but even more that seems...questionable or conflicting. I had been told by doctors that the time from ovulation to menstruation is always 14 days. On day ten of my cycle during the IUI process, I thought I might have ovulated. But when I went for the scan, the technician said that everything looked great, the follicles were still growing, and we were still all systems go. Two days later, they told me to take the trigger shot, and when I went in for the IUI, I still hadn't ovulated. So you can imagine my surprise when I got my period on day 24 of my cycle.

Wait – this wasn't how it was supposed to be! I was supposed to get my period on day 28 or 29 – sure, I'd know that the IUI failed, but that at least things were working as they were supposed to. Based on what I'd been told, if I got my period on day 14, I had to have ovulated on day 10, which means the ship had sailed way before the IUI. I rang the clinic for an explanation.

A very tense and defensive doctor just kept repeating, “We did everything right. We did everything right.” Frustrated, I tried to explain that I wasn't ringing to see did they do everything right – I wanted to learn why this happened to me. I wanted to learn. I also wanted to know whether I'd just wasted over a thousand euro, and whether I should even bother trying it again. After that conversation, I did some googling, of course. I learned about a condition called Luteinized Unruptured Follicle Syndrome (LUFS), also known as trapped egg syndrome. It's when your body shows all the signs of ovulation – well, all but one – but you're not actually ovulating. The only way to actually know that you've ovulated is through ultrasound scan to see that it has actually ruptured. I convinced myself that this could hold the key to my unexplained infertility.

My husband and I went into the clinic a couple of days later for a review session with a different doctor. “Before we begin, what did you think your chances of success were for the IUI?” the doctor asked me. I grimaced. I knew they weren't great. “About...ten percent,” I answered, tentatively. He told me that I was way off. But, actually, not as far off as most people. “You'd be surprised how often people like you come in here and tell me they think their chances are fifty percent,” he said.

It turns out, my “fecundity,” as he kept repeating, before the IUI, was only 2%. It kind of bears repeating: 2%. Two. Percent. And I am a healthy 42 year old woman with no known illness. That two percent is not based on some kind of defect with either me or my husband. That's just based on age and the number of months in a year. With IUI, I doubled my chances. Doubled, in most circumstances, sounds promising. But in this case, me doubling my odds is 4%. Suddenly, trying to find out whether I might have LUFS seemed basically pointless. Besides, there's no known cure.

He worked out some math, and in order to get pregnant with IUI, according to the odds, I would have to spend about €25,000. He compared that to IVF, which, it should be noted, only ups my odds to about 10 percent. But since IVF costs so much more than IUI, I'd have to spend €40,000 to get pregnant that way. Now, of course, we could be one of those lucky on the first try types. But those aren't the odds. That's not realistic. And to be honest, all I want right now is to be realistic because this is my fucking life here.

The long and the short of it, he said, was that to be honest we could probably double our chances without IUI by me not thinking about it anymore. Yes, there it was: the old “Just don't think about it” advice. Except, what the doctor was saying is, this isn't going to happen for you. If you accept that, you will have a much happier life, a much happier marriage, and hey, you never know. Except you kind of do. Sorry.

So that was it. I heard the things I already knew, yet hearing them in this context felt like the nail on a coffin. Like so many hundreds of times before, I had to dry my eyes, buck up, and go on with my day. I went to work. I took deep breaths. I tried not to think about what it all meant.

But here's what it means. It means I have to learn how to stop questioning whether bad decisions I made in my life have led to my not being able to have children. I have to stop feeling that I have failed myself. I have to stop feeling that my husband failed me. I have to stop closing my eyes and picturing what it would feel like to hold a child that is mine. I have to stop questioning every life decision I've ever made, thinking about my career choices, my relationship choices, my financial choices. I have to remind myself that I actually love my life and part of why I love it so much is the freedom that not having kids affords me. I can stop worrying that I'll have a child that has a disability. I can stop worrying that I'll have a child who is obnoxious. I can stop worrying that I won't be able to afford a child. I can stop worrying that I am adding to overpopulation. I need to think of all the wonderful, smart, and thoughtful life decisions I have made in my 42 years. I need to celebrate all the interesting and world-changing projects I will now have time for. I need to stop wondering what people will think. I need to stop thinking about people from my past knowing I couldn't have kids and saying I deserve it. I need to stop thinking about other people's pity. I need to stop thinking about anyone else at all.

I know so few people going through this. And I'm going to be honest: I feel embarrassed and ashamed that I couldn't have kids for the simple reason that I wanted them. I wanted something and I failed at getting it. I keep telling myself hey, there are lots of things in life you wanted and you didn't get. But truth be told, I haven't failed at too many things that I thought were realistic and attainable that I actually tried for. This feeling is fairly superlative. As a little girl, I played with dolls. In fact, I played with them until my teens. I dreamed of being pregnant. I dreamed of being a mother. And the only time I questioned those dreams were when I had partners who didn't want kids. But in my mind, I felt like eh, it's always an option, somehow, if I decide I want to. And I did decide. Wholeheartedly. And now, well, now is now.

This feeling will haunt me for the rest of my life. Cruelly, it's as irreversible as having kids. And that's that. Somehow, I've got to learn to accept it because this is my life. Now I have to make something of it. I have to make a different kind of mark on the world. I have to get on with living. And the first step towards doing that is sharing my experience so that other women suffering with infertility will know they aren't alone.