Being a patient with multiple, complex diseases and a lengthy medical history, I'm not surprised when doctors become overwhelmed with my information. This is something I've grown accustomed to. I know I'm "weird," as I would put it, complex. I continued to go over my diagnoses of adenomyosis, renal tubular acidosis, and medullary sponge kidney. As we were reviewing my long list of medications and supplements, my doctor stopped me, asking why I was taking a few of them. "They were recommended by my fertility doctor," I explained (so he didn't think I just ran to the vitamin store and threw a bunch of stuff in my basket). Then, he said something that nearly knocked me off my chair.
"Should you be trying to get pregnant? I mean, even if you do get pregnant, what would that be like??"
I tried to recover, and gracefully replied, "Um...probably difficult, but my husband and I still aren't finished trying for a biological child, although we have started looking into adoption."
The rest of the appointment went fine. I got some good news and some not so great news, and left with a plan moving forward. Yet, as I climbed into my car, raining pouring down outside, I couldn't shake the feeling those words left on my skin. That feeling of disquiet, of judgement, of somehow doing something I shouldn't.
There are an awful lot of "shoulds" being thrown around in the medical field, especially when it comes to treatment of endometriosis and pregnancy. At age 18, I was told that because of an SI injury, I would likely require bedrest for any pregnancy I might have. Since age 22, I've been told I "should" get pregnant, as soon as possible, that it would cure my disease by resetting my hormones (which, by the way, is an absolute myth, and a cruel one at that; it is often difficult to become pregnant with endometriosis with the inflammation and anatomical distortion that come along with it, let alone the hormonal imbalances and ovarian dysfunction that can result from traditional hormone treatments).
My husband and I let the "should" of conceiving turn our lives upside down when a doctor told us two years ago that we should get pregnant immediately if we ever wanted it to happen. Over the years, I've been told I should go to this doctor or that doctor, I should trust my doctors implicitly, I should try natural remedies, I should meditate, I should work less and eliminate stress on my body, I should relax and let things happen the way they should, I should worry less, I should have fun with trying to conceive, I should take the aggressive approach and do IVF because I have stage IV and I obviously could never get pregnant on my own, I should have sex every other day no matter how much it hurts, I should only have sex within a short window determined by peeing on a stick, I should not worry about when I have sex because then there's too much pressure, I should let a doctor push and pull my hormones based on his or her typical protocol despite my personal (negative) history with ovarian stimulation, I should exercise more, I should exercise less, I should stop thinking about it so much, I should think about it MORE, I should, I should, I should!
And then there's the phrase I absolutely hate the most:
"You shouldn't try to get pregnant. You'll pass your bad genes onto your children. How selfish."
I'm not joking. People have said this to me. More than once.
I could go on and on about why this statement is misguided (and extremely insensitive). But what it really boils down to is it is none of your damn business whether or not I procreate. I have an incurable disease, yes. I also have severe allergies, and a terrible sleep pattern, and a horrible addiction to chocolate, but I will love my child more than you can ever possibly fathom, and would do everything in my power to make sure that if my child displayed symptoms of any of my diseases, I would get them to the BEST possible care available, and pass on all of the knowledge I have so they can live a better life than I did.
The kicker in this situation, however, is that it wasn't said to me by someone who didn't understand what they were talking about. This was a doctor that I go to for medical care, a doctor that I happen to like and trust. To be questioned about whether or not I should continue to try for a biological child, as if he was asking me whether or not I should continue to eat red meat, was not only inappropriate but completely unprofessional. Whether I should or should not try to have a child is completely up to me, my husband, and my fertility specialist.
As it would happen, I had considered a hysterectomy earlier this year to eliminate pain from adenomyosis (a hysterectomy won't help endometriosis, but it can relieve pain associated with adeno). I was questioning whether or not I had hit the end of the road, whether my body had had enough, and I asked my surgeon to tell me what to do. He said something that just reaffirms that he has my best interests, both physically and mentally, at heart.
He told me that if I had any doubt in my mind, I should not take away my chance at having a biological child. Even though he knew the extent of my disease and the toll it had taken, he continued to support our desire for a biological child, and would not even think of putting his opinion into the equation (despite my great desire to be told what it was!).
I wish I had explained to the doctor who questioned my decision about the fact that I'm nearing the end of my journey trying to conceive. Yes, my body has been through a LOT (five surgeries in two years, two of which were emergency surgeries in the last 6 months). Carrying a child to term with my adenomyosis and back issues would be difficult, but I knew that going into this. I never thought it would be as difficult as it has been, but I also never thought it would be easy. Being a mother never is.
When my husband and I discussed trying again after our first miscarriage, my NaPro (fertility) doctor asked me how I felt about it. I said I was kind of nervous, and very anxious about what problems we might face, especially knowing that after one miscarriage, the chance of another goes up significantly. He said something that almost made me cry. He explained that I was making a sacrifice by being willing to carry my child. I was not only sacrificing my body, but also opening myself up to the emotions of what might be. To continue trying would mean opening myself up to heartbreak, along with the medical complications, but that I was willing to do so because I wanted to be a mother, and I wanted my baby. And that was the least selfish thing I could possibly do.
So, should I keep trying to get pregnant? That's a really great question, and it's one that takes a lot of consideration and deep reflection to answer. This month, I have begun what I believe is the last leg of my journey. I have taking a drug that will hopefully help us conceive. It is often prescribed to women struggling to get pregnant before moving on to more aggressive approaches, like IUI or IVF. If it doesn't help us, I'm pretty sure I will be finished trying. Despite what some might think, I do know my limits, and I believe this is as much as my body can handle.
I don't know what the future holds for me and my husband, but I do know that we made the decision based on what we feel in our hearts, not what someone said we should do.
So the next time you have a conversation with someone about fertility, no matter what your opinion is on the matter, just be supportive. It doesn't matter whether you believe they should or should not do something when it comes to having a child. If you find yourself about to mention what you would do in their shoes, don't. Trust me. That's one should that you should just keep to yourself. ;)