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When My Male Doctors Can't Grasp How Illness Affects My Life

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On Monday of last week, I received a phone call from my family doctor to let me know that I had to come in to talk about the results of my pelvic ultrasound, which I wrote about earlier. I feared it might be the final nail in the coffin.

It is safe to say I have become a bit of a professional patient since being diagnosed with pulmonary hypertension nearly three years ago. I have had enough tests done to know they don’t bring you back into the office to discuss negative test results. I instantly knew this meant something showed up.

I had to wait until Thursday to have my follow-up appointment to discuss the results of my pelvic exam. I’ve always been a bit of a worrywart, but after being diagnosed with pulmonary hypertension I turned into Chicken Little. Sometimes it feels like the sky is falling, and it is hard for me not to feel that way. I’ve always struggled with anxiety and depression.

Throwing a rare disease into the mix has only heightened my senses. I often feel like my world is ending. When your chances of developing something like pulmonary hypertension are so rare, part of you always feels like the worst-case scenario in every situation. “It could happen again because it’s happened before,” whispers my shell-shocked brain.

As you can imagine, waiting a couple of days to find out my results was slightly torturous. It is safe to say some worst-case scenarios played out in my head, but I was eventually able to rationalize that my doctor would squeeze me in earlier if I had anything life-threatening.

Trying to explain difficult periods to a male doctor is kind of a hard thing, which is why my symptoms were neglected for well over a decade. One of my pulmonary hypertension specialists got at mad me once for canceling an appointment I had because I had my period. His receptionist understood, but he actually called me and scolded me like a child. He told me to take an Advil, which virtually does nothing for the pain. I also experience heavy bleeding, so sometimes I have to sleep during the day.

For me, a pulmonary hypertension appointment is kind of like doing a triathlon. I, like many other pulmonary hypertension patients, have to wake up early to wait hours in a depressing waiting room. Next we get to blow into a bunch of weird machines that look like they come from a Dr. Seuss book. Then we get to bust our asses during the six-minute walk test, trying to walk as briskly as possible and as far as possible. There is no way I could yield accurate results when I am in that much pain.

Thursday finally rolled around. My family doctor explained that I have three issues. Individually, most of them aren’t that big of a deal, but because I have three abnormalities rolled together, my reproductive organs are kind of a hot mess. Having pulmonary hypertension thrown into the mix only further complicates things.

I found out that it looks like Pablo Picasso put together my uterus during his cubist period. One ovary is in the wrong spot, and has a fairly large cyst. The other ovary has about three cysts. I have endometriosis, something I have long suspected and asked to be checked for. For any males who have made it this far into this column, endometriosis is pretty darn painful to the point where it can be debilitating. I also found out that my uterus has a septum. This is a lot to share with strangers on the internet, isn’t it?

Most of the hot mess that I have going on down there can be managed and/or fixed with surgery and birth control, but I am not a candidate for either. I went on birth control in my teen years to help with the horrible cramps I experienced. The side effects where so bad I had to get an MRI because doctors thought I had a brain tumor. I had to stop taking birth control, and have been too afraid to test the waters again. Surgery with pulmonary hypertension can sometimes be risky, so I decided against it.

The surgery would be to help remove the septum, which I found out would need to be removed if I ever wanted to get pregnant. Finding this out certainly picked at that open wound I have going on. Was I fated to never get pregnant? What if I had the surgery before I was diagnosed and then could never have children anyway? What if I never developed pulmonary hypertension and got pregnant without knowing about my “Ma Jolie” shaped uterus? (That would have ended in a devastating disaster.)

Why does it feel like I was destined to never have kids?

My family doctor tried to emphasize the fact that I wasn’t planning on having children anyways — but I was.

I took parenting in high school, and even took home one of those robot babies for extra credit. I worked in childcare centers. I got a specialization in teaching prep from the university. I was planning on having kids, but pulmonary hypertension is the one that decided I wouldn’t have them, not me.

Of course, the optimist-hopeful-spirit in me that believes in unicorns and true love still hoped that maybe someday I could have kids. I’ve had the chance to speak to some women who have had children post-diagnosis, and doctors are learning more and more about pregnancy among pulmonary hypertension patients. Part of me was still quietly holding out that maybe, one day, it would be possible for me.

Even though pulmonary hypertension decided for me that I wouldn’t have children, this extra nail in the old coffin still hurts emotionally and psychologically. I feel like I have been given one more obstacle I didn’t really need because I haven’t even found my way through this one yet. Maybe I was fated not to have kids, maybe it’s just bad luck. I can only hope that maybe I am being pushed into a different path I don’t understand yet. If that is the case, I hope that path is surrounded by sunshine, maple trees in the autumn, and Boston terriers.

This article was originally published on Pulmonary Hypertension News

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Originally published: November 9, 2016
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