Overall I would describe myself as an extremely healthy person. I eat well, my weight is good. I take a dance class every week. I run a 9 ½ minute mile on a good day and have started training for a women’s only triathlon. I used to be able to fill out a medical history form in mere minutes, quickly checking “no” in virtually every box. But the last few years have complicated things somewhat. I wasn’t sure I would tell you about it (I am new to blogging and my personal rollercoasters usually stay between me and my friends and family), but Jackie’s courage in sharing her story made me decide to share mine.
So here’s what’s wrong with me…I can’t have kids. Yes I do have a son, but that’s a different story that will have to wait, (is “Gifts” on the list of topics? “Family Projects?” “Wonders of Technology?”, “Reactions to the Film “Baby Mama?”), but what I mean is: I can’t bear children.
The journey that lead to that discovery was a health related nightmare. I’ll try to keep the details brief and concentrate on my point, but some backstory is probably important. I guess the account could also be a PSA, so it has that going for it.
So, the problem: I have something called Asherman’s Syndrome. Asherman’s is effectively scarring of the uterus. It’s an acquired condition – it typically happens following D&C which is used all too frequently following miscarriage. A form of D&C is also often used if a woman has retained placenta after the birth of a child, sometimes when a woman has abnormal periods and of course to terminate unwanted pregnancies. In my case it was miscarriages. Two. After the second D&C, my period never returned. Thanks to Dr. Google (don’t try this at home) I actually diagnosed myself before my doctors could – Asherman’s is relatively unknown or maybe misunderstood. I don’t want to say “rare”, because the numbers don’t necessarily bear that out, but none of my doctors believed that I could really have it and only one professed to ever having seen it.
Now, a diagnosis of Asherman’s, in and of itself, is not a death knell for your fertility. There are various stages of severity and several surgeons in the US that have had excellent results with uterine repair. In some cases, the scars are flat and on the surface of the uterine lining, in others they form a web across the opening. In my case, the most severe form, the uterus is completely “obliterated’ (as one convivial doctor put it while taking off his gloves and straightening his tie). Flat as a pancake. Picture a balloon with just a bit of air in it – nice uterus. Now picture that balloon after some kid has spit in it and then stuck it in a drawer for awhile - all dried up and stuck together, right? That was mine. Not a nice place for an embryo. Anyway – I was lucky enough (read: resourceful enough, advantaged enough) to find (thanks to an online info source and support group: www.ashermans.org )a fantastic surgeon in another state who opened my uterus back up. My periods returned but, unfortunately, not my fertility. My uterine lining just didn’t recover enough.
So that’s the backstory, but here’s what I really want to write about…being a patient sucks. It really sucks. The actual diagnosis was devastating, but the fact that I practically had to make it myself was mind blowing. The procedures seemed endless, but sometimes more draining were the calls to insurance companies and clinics. The trips to labs and the filling out of forms. The collecting of papers, the faxing of releases, the answering of questions. The waiting - both for doctors and for results. In short, the management of my own case. J and I talked a lot about how fortunate we were to be educated people. To be financially stable. To be supported by our families in so many ways. We knew for example that it was ok to question the doctor, knew we could get second (and third) opinions, knew we could do what it took. Others, of course, not so lucky.
Don’t get me wrong, the medical stuff sucked too. As I said above, I usually consider myself to be extremely healthy. But what a number something like this will do to your psyche! Suddenly, I felt like a sick person. With all of the blood draws and medications to take. The invasive procedures, the pain. The catheter, for god’s sake. And sometimes I felt like a victim. Whenever I had to deal with that one asshat physician or remind the nurses, after giving the date of my last menstrual period, that “No, I am not pregnant, thanks”. The emotional energy that it takes to weather all of that can’t be overstated. And in the grand scheme of terminal illnesses and chronic conditions, what I got ain’t so bad, right? What must others go through?
Now, I guess, the Asherman’s is effectively behind me. We could have pursued other medical options to try and fix whatever is still wrong with my endometrium, but enough was enough. With luck and love, we found another way. So it’s back to healthy for me, and I’ll hope it stays that way. But if not, maybe at least next time, I’ll know what I’m in for.
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