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.

So it’s 11:54 pm on Sunday, May 10, 2009. It’s the last 6 minutes of mother’s day. It really was a great day, you know? I emailed students, I did a small organizational project I’ve wanted to do, and I spent all day with Dean. It was generally nice.

I called my mom, of course, and Dean called his, and we talked about presents and celebrations and all the goodness of the day. Every site I went to had a “happy mother’s day!” banner, adorned by flowers and cute insects; facebook had more baby pictures than ads; even gossip sites had features on famous mothers and children. I enjoyed reading it, I swear. That is, until I read that one blog about famous mothers’ favorite lines in childrens’ books.

Books are my escape. There are so many worlds to explore, characters to love and hate and fear and cherish. It what I do when I’m happiest; it’s what I do when I’m down. It’s where I go.

Reading a list of beloved lines from beloved books…my books, my havens, my happy places…and having them tied to happy moments with children broke me tonight.

The thing is, I will never, ever have a mother’s day. I will never have toddlers bringing me weeds in a boquet which I’ll proudly display on the table. I’ll never have surly teenagers reluctantly bring me breakfast in bed. I’ll never have a 20-something call me late in the evening pretending he hadn’t forgoten the date. I’ve seen it happen–I’ve even been on the kid side of that equation. I heard a thousand stories today, each sweeter than the last. My “I played video games and cleaned out the freezer!” story just doesn’t hold a candle.

There is no I-had-my-uterus-and-overies-taken-at-32-so-I-will-never-have-children-of-my-own day. If someone makes one, I hope it’s in August. I don’t have anything else to celebrate in August.

–Adrienne

…if not, then you probably shouldn’t read the next several paragraphs; that’s all I’m gonna talk about now. Woo!

At the moment I’m lying in bed enjoying my very first day of trying not to take massive amounts of narcotics. Those make me loopy! And tired. And a little giggly, but giggling makes my incisions hurt, so that’s a bad thing. Let me start from the beginning.

We’ve been trying to get pregnant (big surprise? I thought that’d be huge!). After years of nothing working and countless procedures, we’ve decided that it’d be in our best interest (not to mention my body’s ever-lovin’ gratefulness) to stop the nonsense and move on.

Well, we’re doing that. It’s been rough, but it’s fine now. However, my body seemed to have a slightly different idea of moving on. Apparently “moving on” in body-speak translates to “give her excruciating pain for months on end. It’ll be fun!” So that’s what it did. We’re talking bad pain here–so bad that it made my old cramps look like a stubbed toe. Starting around may I was spending several days wrapped around the toilet and powering my way through hard tasks such as eating cereal and walking to the car.

By August things had gotten worse–now it was lower abdominal pain pretty much all the time. There we were, out in Virginia, and I couldn’t even get out of bed. It was waking me up at night, I was over-dosing on Tylenol PM just so I could sleep, and for most of the day I couldn’t even stand up straight. You try attending a family party in that state. That was sucky.

Anyhow, it seems that the endometriosis I banished 2 years ago (via another surgery) has come back with a vengeance. I guess I just pissed it off last time. Who knew I could hurt its feelings?

I don’t like my old doctor. I was there a lot (A LOT!!) during the past few years, and it never worked, and he put me through a lot of pain, and we’ve spent the last 12 months desperately trying to pay off my medical bills (“What do you MEAN we owe you another $756?!? We called last month and you said that payment of over a thousand was the last one ever! You promised!” Imagine that for a full year) and I really, really, really didn’t want to go back. So much so, that I didn’t tell anyone how much pain I was in for a very long time. Dean didn’t even know. I remember sneaking out of bed at night very, very quietly and taking handfuls of pain killers so I could sleep. I also found that vicodin took the edge off enough that I could teach without racing out of the class to puke every few moments. Of course, trying to answer stupid questions while doped up was an adventure, and involved a lot of giggling on my part (good thing that’s nothing new, or my students would have noticed!)

Long story short, I didn’t want to go back to my doctor. I actually blame him for a lot of things, the least of which are the permanent track marks on my arms from blood tests. So I didn’t tell anyone because I knew the instant reaction of “go to the doctor” would follow.

Dean eventually figured it out (it’s really hard to puke-and-sob silently, damnit!) and insisted I go to the doctor. The predictable breakdown on my part followed, and then Dean was in charge of finding a new doctor and navigating the murky depths of our health insurance. We looked a two doctors (by “we” I mean “Dean got the names from the endometriosis support group, called the doctors, talked a bit, checked with the insurance company to see if they were covered, then dropped me an email with the name”) and one was covered by insurance. And also happens to be the head of the endometriosis society, the editor of the endometriosis journal, and the foremost expert in minimally invasive surgery in the United States. I choose him!

We go for an initial consultation (hey dildo-shaped ultra sound wand! How I’ve missed you!) and it goes something like this: “Take off your pants–we need to do a pelvic exam. Huh. You have endometriosis. I can feel an adhesion through your abdominal wall…sex must be painful, yes? Well, let’s do an ultra sound…ok, you have poly cystic ovaries. Yes, I know it hurts, just a moment…ah, your left ovary is adhered to the side of your uterus, and your uterus is abnormally tipped. Let’s go see the doctor!”

Ah, fun for me. So the doctor (well, the other doctor. The one that did the exam was a surgeon as well, just not the head surgeon for the center. Woo for having a pelvic exam by a real doctor! That’s new) was very soft spoken and nice–here’s his intro “I will never say I’m the best at what I do. But I challenge anyone who says he is he best and I will win. So I hear you wanted this surgery yesterday?” That won me over. And yes, I wanted the surgery as soon as possible.

So we schedule the surgery for four weeks hence: October 24th in the morning. Fun! That gives me four weeks to learn all about the possible side effects and have various people tell me all manner of interesting things about surgery (Quick aside–I teach human biology, people! If and when anyone with less education than me feels the need to explain the intricacies of the reproductive system to me, I’m just going to ignore it. You’re invariably wrong, and I’m invariably annoyed. Yes, I know you’re just trying to help, but you have to remember I do know what I’m talking about, and when you say things like “well, you do have two ovaries you know!” I have to fight the urge to scream ‘Do you think I’m stupid?!? Do you want to explain what all those other fancy words mean too? I just don’t know!’ But then that would cause a scene and I’d have to end up apologizing and whatnot, and I just don’t care for that course of action. There. I’m better now).

So pre-op arrives, and I cancel office hours to go, which confuses my students to no end at all. Who knew someone wanted to see me in office hours? Weird! Dean and I go, and we get to sign all manner of fun paperwork. Do I have advanced directives? Yes. I want to live, damnit! Do I have a will? No. Who is my next of kin? Dean. Am I scared? Yes. That last one wasn’t actually on the paperwork, but my quivering innards seemed to give me away.

Well, then we get a stack of prescription papers, the paper with all the stuff they’ll be doing to me the next day (they have to do everything! And it all ends in “oscopy!”) and a list of fun things for me to do the next day.

And let me tell you about the next day. So I’m not allowed to eat after 12 noon, which means no workout. After noon, I can have clear liquids (and Jell-o) and then three o’clock rolls around. At three o’clock I have to begin my colon cleanse, because they need to check all of my innards, you see. All of them.

Anyone had to do a colon cleanse? Well, “suck” is a mild word. So they give you these two, 1.5 oz bottles of saline with other stuff to drink. You have to drink the whole thing–yum. Who in their right mind decided to make a super salty drink lemon-ginger flavor?!? Oh…my…god was it awful. It actually took me 45 minutes to drink the full ounce and a half. Gahhhhh! It was super gross. Now, when the nurse talked to me about the colon prep, she said that it would take about an hour to kick in, then I better be near a toilet. Ooooooohhhhh, was she right! Have you heard of that stuff called “colon blow?” Yep–that’s exactly what happened. For hours. It was horrible. Then I had to take another dose! Oh dear lord! When will this stop?!? By the end of the night I was ready to knock myself out just to get off the damn toilet. FYI–don’t try and go to a movie during a colon prep…worst two hours of all time. And I couldn’t have popcorn!

So we show up at Stanford (yay Stanford) at 5 am the next morning for the surgery. After a long talk with the insurance guy (well, one surgeon is covered but not the other. Don’t worry…we won’t charge you more than $2000.) I get to go into the cold back room, take off my clothes and talk to the nice nurses about what’s going to happen to me. “So, did you have a good response to the colon prep?” HA! Hahahahahah! Ah, the jokes of doctor-types. The last thing I remember is being wheeled into the OR with crazy-making stuff in my blood stream making me laugh.

I wake up apparently 3 1/2 hours later in recovery (I was there for over 2 hours…I remember maybe 40 seconds of it) with a sand bag on my belly. Sand bag! All I could croak out was “what’s on my stomach?” and then “get it off!” For hours. Stupid sand bag. Well, hours of in and out of consciousness later, I get to stay in the hospital over night. That’s where they keep the good drugs. Who knew morphine burned when they put it in the iv? Mmm…burning drugs…. Of course, they had to wake me up every 90 minutes to pee and walk around. Stupid nurses who give me good drugs!

Well, it ends up they did a laperoscopy and removed the extensive endometriosis. They also looked inside and out of my large and small intestines, my stomach, my diaphragm, and my appendix. I got to keep my appendix. Yay! (Did you know they discovered the purpose of the appendix? How awesome is that! And I still have one! Woo!) Then they looked inside of my bladder and discovered I have interstitial cystitis or over active bladder. Ok, I knew I had to pee a lot, but I didn’t think it was that bad. Nope, it wasn’t. They also did a bunch of other cuts and whatnot, but I forget what all they did. I do know it hurt.

So I had to pee after having a camera shoved up my urethra. That burns!! Burns I say! And it also hurts and stuff. Stupid having to pee! Here’s my advice–unless it hurts all the time, don’t tell any doctor ever that you have to pee a lot. They’ll just do horrible things to you that make you pee dye and bleed out of weird places. Don’t do it!

Dean came and got me early the next morning, after my 2 mandatory bowls of vegetable broth, and I got a complimentary ride in a wheelchair to the car. It was bumpy and ouchy! Then I came home and slept. And peed. Then cried a little. Then got all doped up on pills, then did it all again. Now it’s almost a week later, and I’m just about ready to sit up all on my own. I’m (mostly) off narcotics now–I can almost handle the pain all on my own. Yay me!

That’s it for now…this blog took me like 6 hours to write while I tried to sleep or take my meds or something. There you go! I’m fine, although a bit ouchy now, and I’d love to see people if you wanna come and visit. Thank you for all your notes and stuff! Love you all!