So once again, despite the sleeping pills and the amitriptyline and an active day, my phantom uterus has decided I don’t need to sleep. Sounds like a good time for story telling, huh?
My endometriosis returned in June, 2008…a scant 6 months after extensive laparoscopic surgery to correct the problem. New town, new state, new doctor, more treatments. We started with birth control pills–many women find relief when on these, and my early 20’s were cramp free due to the miracle of ortho tri-cyclen. After three months of trials, the pills just weren’t cutting it, so I went on an implant birth control. The doctor said that it would take a few months for the implant to start working, and prescribed me morphine for the days when my endo flared up so badly I couldn’t walk.
Things were going ok…I would go to the doctor regularly to get a new shot, I was only out of commission a few days a month, and I was hoping things would improve substantially as soon as my body got used to the new treatment. That didn’t work out so well.
In January of 2009, the endometriosis moved from my uterus to my ovaries. Ovaries are sensitive beasts, as anyone with an ovarian cyst can attest. The endo began to cause a squeezing sensation, almost a pulse, that would knock the wind out of me and make me nauseous. Gentlemen…you know when you get kicked in the nuts, and you bend over all winded and sweating and gagging, then curl up on the ground until the pain goes away? Well, ovaries are derived from the same tissue, with the same nerve endings, and the same capacity for pain. Imagine someone squeezing your balls harder and harder all day, every day. Then imagine going to work.
The doctor prescribed more morphine and vicodin for the bad days. I took it. Things held stable until March, when my ovaries attached to my ureters (for those who haven’t taken an anatomy class lately, that’s the tubes between the kidneys and the bladder). They just bent inward and attached. Awesome. The doctor upped my dose of pain killers.
Then my small and large intestines got in on the act, and attached to the ovary/ureter love fest that was going on in my abdomen. This meant that every time I had something to eat, my intestines would contract, tearing at the ovarian mess. I can’t even describe…I would sit at my desk and cry. I’d hit the wall. I’ll throw up in the trash can. I’d shake and sweat as blood drained from my face until it was over. Then I’d get up and go to work.
I tried special diets; I tried vitamins; I tried herbs; I tried massage; I tried music therapy; I tried it all. The doctor gave me more pain meds. By April, I was up to 6 prescriptions, and could barely get out of bed in the morning. Walking was a chore. I couldn’t even contemplate going horseback riding when we went to Virginia, and had to skip out on sight seeing because moving my legs hurt too much. Dean had to get me a wheel chair in the airport on the way home.
We went to the doctor as soon as we got back, and were told the next treatment would take a few days to get approved by our insurance. I was going to go on lupron, which would shut down my ovaries and shrink the endo. We wait 5 days. Dean calls. The treatment hasn’t been approved yet. Things get worse. Dean calls 24 hours later. The nurse is very sympathetic but nothing has changed. She prescribes yet another pain pill. I’m taking so many pills at this point that I can barely walk on my own. I’m not allowed to drive or operate heavy machinery. I can’t remember the last time I was allowed to handle a sharp object. We go back in to the doctor the next day, and this time I go in without any pain meds in my system. I almost didn’t make the walk from the car to the office. The doctor found me curled up and crying on the exam table, and the nurse had to walk me through deep breathing exercises so the doctor could examine me. They made me lie there until the worst of the pain subsided a bit, and by that time I was begging for another surgery.
They took out my uterus a week later. You know what sucks? Filling out advanced directives. Every time I have an operation they make me fill these out. Along with my wishes-should-I-become-a-vegetable, I also write a list of things for Dean…things I usually do for us so he won’t be too lost if I go. This time I also wrote him a letter. I was really scared for this operation…much worse than the last few. I just couldn’t go under thinking that I would never get to say things to him, so I wrote him a letter that he’d find with my advanced directives. That part made me cry.
The surgery went fine. Things were all gummed up, but they made it out ok. My recovery room was in the maternity ward–good thing I was on morphine. I watched new mothers carry new babies up and down the hall all night. That’ll stick with me, I think.
Now I’m getting better, slowly but surely. I get tired a lot, and this whole surgical menopause thing came close to killing me (or making me kill other people), but that’s just physical. The mental part is what’s bad now, and that’s really the point of writing this, you know?
Because you see, I’m now the girl-who-couldn’t-get-pregnant. I’m that one friend that tried for years and then had to have her uterus taken out. I’m that friend of a friend who gets stories told about her to sympathetic ladies and they all shake their fertile heads and say “Aw! Poor thing!”
Lately I’ve been getting emails. Some woman will have trouble getting pregnant, and she’ll drop me a note. “How do you do it? How do you deal with this? Isn’t it hard? What do I do? I need help!” So I write back. I pour my heart out into every email. I tell her what will happen. I tell her how I deal. I tell her what I cry about. Three months later she sends me a happy note saying she’s pregnant. Then I get an email from her friend, who just can’t seem to conceive. So I do it again, because that’s who I am. I’m the girl-who-couldn’t-get-pregnant.
Now don’t get me wrong–I love helping people, and I especially love sharing my experiences with people who need some support from someone who’s been there (and goodness knows, I’ve been there). Honestly, what is the good of going through something like this if I can’t share it with someone I love? When my family comes to me especially, those who share the same genes and have a very real possibility of sharing these problems, I’ll relive the whole thing, top to bottom, beginning to end, just to maybe help them out a little. At the very least I’ll know what they are going through! The problem I have is when some acquaintance reads these blogs and contacts me 10 days after she started trying.
The other day I was talking to some friends, and mentioned that my favorite sound ever is the sound of cicadas. She replied with “you like it even better than baby giggles?” That gave me pause. I naturally quickly replied “yep” and changed the subject, but it affected me. What am I missing out on? How am I going to relate to women my own age? Or really women in general? I won’t have those same experiences; I won’t place importance on physical and mental achievements of my offspring.
With this in the forefront of my mind, I went and checked my Facebook friend feed, and found that overwhelmingly the ladies of my age group were all posting about their children. This is what I found:
“Enjoyed margaritas and a movie…yes, the baby was asleep”
“I wonder how a ten year old can literally RIP his sandals to shreds through normal daily wear”
“My boy is determined to master his tricycle! On, off, on, off… now if he could just get the hang of this pedaling thing!”
“Thinking about my friend who is having her baby twins today….”
“ I think it’s a story time day.”
“My baby is being so brave on her 1st day of gymnastics! So proud!”
“Did not win mom of the year today, but I did manage to fix the garbage disposal…”
“I have a new baby girl. 8lbs 5oz, 20″, 3:34am on 6/15”
“Being tested by my son at the park.”
“ 1 more week of getting kids to school. :)”
“Nothing like dreaming about my daughter not feeling good to wake up 20 minutes later to find she threw up all over her bed :-(“
“ So excited to take my son camping in a few days and DONE with school!! YAAAYYY!!”
“My girl is graduating from preschool tomorrow!!!”
That’s all from one day. Tie that to the endless (and I mean endless) photos of kids and parents and milestones, and my Facebook page is just one big mommy party. It’s a little confusing, I guess. I mean, how am I going to relate with these women ever again? I know they have lives outside their kids, and I know many of them work, but kids are really the center of any conversation when talking to any procreating woman, ever. The common ground is getting smaller and smaller.
I got my first publication last year–huge deal. I’ve been working towards it for years and years and years, and it was amazing. The problem was, few of my friends and family were as excited as I. You know what was exciting? Baby showers. Our new house. Which room in the new house we’re going to set aside for the nursery. It’s like I’m moving further and further away from a life I wanted while watching other people live it.
Yes, yes. I know. “Being a mom isn’t all joy and laughter” “you can still be a mother if you want” “We have problems too, and envy your freedom.” I’ve heard all the consoling phrases before. I know a mom isn’t all fun–but would you give it up? For anything? I know I can adopt, but we decided not to. I’m sure you envy my freedom–but would you really give it up? For anything? It’s a melancholy, lonely feeling not being able to participate in a major life phase. And I didn’t have a choice about it. I didn’t get to say “I don’t want kids” and then surround myself with people who were of the same mind. Nope. I tried. We tried. Now we’re the ones who couldn’t get pregnant, surrounded by the ones who could. I will forever be watching families grow from the outside, smiling at the stories, cooing over the pictures, and listening to the mothers complain. But I won’t really be a part of it, you see. I don’t fit in any more with the mommies, and I don’t fit in with the career driven women. What do I do now?
But I can’t really tell anyone this, now can I. Everyone has advice, or words of encouragement, or some tale that’s supposed to make me feel better. I know it’s all because they love me and want to help, but I’m ambivalent about this whole situation. When someone tries to make me feel better about the situation, all it does is pick at a wound in ways you could never understand.
Of course, if I say that out loud, then people stop talking about anything child related all together. I hate walking into a room of women as it suddenly goes silent. The walking-on-egg-shells-around-Adie game isn’t any better than the picking-at-the-wound game. I hate that light, feigned casual tone family members use when telling me someone is pregnant. I hate the side long glances when someone mentions a baby shower. I hate the pitiful smiles and slow head shakes when all-things-family are brought up. And the worst part is I don’t know what will fix it. I can’t tell anyone what to do or what not to do, because it will all be wrong. I’m an unintentional outcast among those I love and cherish the most, and no one can do anything about it.
I don’t know what I’m trying to say with all this. I’m told I need to tell people straight out what I need because they can’t read my mind, and if I don’t do that then I have no right to be upset. But I don’t know what I need in this case. I don’t know what I want or wish or dream about or anything. I know I’m beginning to resent advice from people who aren’t in my exact situation. No, you can’t know what this is like if you have kids. No, you can’t know what this is like if you chose not to have kids. No, you don’t know what this is like. I barely know what this is like. Have you ever had your entire future erased? All the plans you made, all the things you hoped for, changed? Have you ever watched everyone else get to do the one thing you want?
Kids are a huge part of your life, good or bad, right or wrong, accident or on purpose. So much of this life is spent talking about the wonder and joy of kids. How many times have you heard someone say the greatest thing you could do is mother a child? How many motivational posters are out there encouraging you to mentor a child, teach a child, love a child because children are the greatest gift? Has a mother ever once been faulted for putting her child first? Ever? So this is how I grew up. This is what I based my life upon. This is who my female mentors were, because this is such a big, big part of being female. The biological imperative. Now that all of that is gone, it’s like I’ve been set adrift with no anchor, no map. Who am I supposed to look up to now? Who do I relate to? To whom can I turn?
I guess I make my own way. I’ll do what I can to keep everyone from feeling uncomfortable around me. Thank goodness I have Dean. He’s been the one constant that I can cling to through this whole thing–the one person who knows exactly what to say and what not to say. The one man in the world who I think can survive this with me. He and I will make our own way. He and I will figure out what the hell we’re supposed to do now. He and I. So I’m not all alone, after all. What a good word for him? Life vest? Anchor in a storm? No…something more. Something much, much more.
So no, baby giggles are not my favorite sound. I wanted them to be, but I couldn’t have that. If anyone asks, cicadas and thunderstorms make me smile, Dean is my everything, and I’m no longer the one-who-couldn’t-get pregnant. When I figure out what I am…when WE figure out what we are, we’ll let you all know.