My guilt factor is sky high lately. What if I hadn't had that surgery, what if I'd had another doctor do the such-and-such surgery, what if I'd had no surgeries at all? What if I'd factored in my health first?
It's just overwhelming to live in constant pain, pain that's a direct result of (in)fertility treatments. (Side note: I feel like an imposter saying "fertility" treatments because I really only went through one medicated treatment cycle).
When we were TTC, any guilty feelings were centered around what I wasn't doing: not eating/drinking the correct things, exercising too much or too little. I shouldn't have eaten that goat cheese! I probably killed my embryo! Etc. Or feeling wishing I had started treatments earlier.
I can't stop thinking lately about all the infertility-related choices I've made in the past few years. I chose the crappy RE to do my initial IF workup. Since the crappy doc suggested a laparoscopy to see how "messed up" I was inside (his words) and I didn't trust him to do it, I chose an outside endometriosis-specialized physician to do the surgery. During the lap, the endo guy also did a hysteroscopy and said my septum wasn't large enough to be a fertility issue, and he didn't see any other problems.
Enter the good RE, who eventually found scar tissue in my ute and thought my septum was an issue after all. Two surgeries later, my life was turned completely upside down by chronic pain. I don't blame her surgical skills—I blame the damn balloon—but my life changed dramatically on 3/9/12.
I'm trying to forgive myself for everything. For not seeing the good RE first, for not doing more research before I started having surgeries. For trusting that any type of hysteroscopic surgery was minor. After all, I'd had laparoscopic surgery already. Why would I flinch at something less major than that? It's like doing injectable IUIs after Clomid ones; eh, not that big a leap.
Now that my TTC chapter is closed, I can look at it as a whole and see the flaws and horror more clearly. I'm not wrapped up in next steps and cycle days, which is AWESOME, don't get me wrong. But reflecting on that period of time is rough, and I guess the TTC chapter is being drawn out in a way because I'm still physically feeling the effects of my treatments.
I feel like I've ruined my body. I mentioned on my last post that I used to run half marathons. Running was a huge part of my life throughout my 20's. I ran 5Ks, 10Ks, and half marathons. Before that, in high school and earlier, I was as dancer. In my 30's, I took up yoga and practice almost daily.
That's where I was, physically speaking, on 3/9/12: lean and mean from many hours of yoga. I felt great when I practiced and was strong enough to do some pretty tough poses. I was flexible for the first time in my life.
I can't even take a walk now. I risked my body's wrath today by walking for about 20 min at lunchtime and I'll probably suffer the consequences this weekend. I feel completely defective and it's embarassing to talk about; how do you tell your coworkers that you can't walk because your pelvic floor muscles are fucked up? Who wants to say "pelvic" anywhere in the vicinity of work?
My body is mushy now and 5 pounds heavier. My pants are getting tighter and tighter. Surprising fact: if you don't move around at all and keep eating as if you do, you gain weight. I want to move. I crave exercise. I want to stretch and be flexible again and not feel my hamstring clamp up when I put up my leg while shaving. I've tried stretching; I really have. It turns out that your pelvic floor muscles are connected to EVERYTHING and hence EVERYTHING hurts to stretch. Want to stretch out my pinkie finger? Can't. Connected to the pelvic floor. My PT tells me to do what I comfortably can but not to do anything painful at this point, so I'm left with nothing to do except a couple of measly exercises she gave me.
So, to summarize: my lady parts are fucked up because we tried too hard to get pregnant (see what I mean? Impossible to talk about without getting into areas all sexual-like). I hate my body and hate that I ignored the warning signs. I already had pelvic pain before all the IF shenanigans started. Why did I screw things up more down there? Blah.
*****
Hmm, that was all over the place and not at all what I set out to write. Funny how that works.
I'm tired of the headaches. TENS helps with them so we're going steady again. The headaches almost make me feel cross-eyed at moments, like I can't focus for a second because of the intensity. It's really weird, but I can tell that the headaches are part of the neuropathic pain, and my doc concurred. It's like the pain comes up from my pelvis (hate that word and must find a new one), through my core and spreads out in my head. Caffeine and painkillers don't touch it. Lyrica is pretty much the only thing that works, that and TENS. I'm going through 9V batteries like a fiend. It turns out that rechargeable 9Vs aren't as readily available or as high a quality as you might think.
In the interest of ending on a high note, I had a major victory today. <drumroll> ...I did not cry at a coworker's pregnancy announcement. I cried at her last one but shrugged off this one like a champ. It helped that my pregdar went off big-time when I saw her this morning...it wasn't her body, it was her smug pregginess. And I'm sure I will love the upcoming meetings when she will turn work-related conversations into something about her baby.
But anyway. No tears! Victory! :)
Have a great weekend!
birds
Showing posts with label endometriosis. Show all posts
Showing posts with label endometriosis. Show all posts
Friday, October 26, 2012
Saturday, October 20, 2012
I Never Want to Be Pregnant
Under no circumstances do I want to be pregnant. I do not want to have an oopsie baby after I adopt. I do not want to have a surprise pregnancy at age 43. I do not want to do another letrozole cycle.
This does not mean I don't wish things were different with my body. That I don't wish I had another body without a pain syndrome and uterine issues. I still long to grow a round belly, feel kicks and punches from a little one inside me. The desire, the longing, is still there. But it's like wishing you hadn't broken your arm; it's broken and you have to deal with it. Maybe you have to stop playing tennis forever. Maybe the break is so bad it will affect you the rest of your life. You can spend your time wishing you weren't limited physically or you can adjust your expectations.
My decision to forever stop TTC didn't happen overnight. A few weeks after my surgery in March, even though I was still in extreme pain, I was scheduling a 3D sonogram appointment to prepare for my next letrozole cycle. I was optimistic. I didn't know this kind of pain syndrome even existed. Who has heard about pelvic floor muscles unless you've given birth or are 80 years old? I hadn't been aware of mine.
Needless to say, I had to cancel the 3D sono appointment, which was just one of the many things that has given me pause since March. If I couldn't schedule it at that point, then when? The next month? Three months from now? (Correct answer is none of the above.)
My thinking shifted gradually. I'd felt unsure about trying for pregnancy #3, anyway. Pregnancy #2 ended around 7 weeks last fall. The chromosomal testing came back normal, and my doctor thought the miscarriage was related to a structural problem with my uterus. Supposedly the structural issue was fixed by my last (catastrophic) surgery, but who really knows? Why tempt fate? Why put myself in the position to lose another baby when my heart has been shattered twice already?
As the months ticked by after the surgery, I stopped planning for my next RE appointment. I had a brand new, all-consuming shitstorm with that wasn't TTC-related: chronic pain. But in spite of that, I started living again. I ate what I wanted: suddenly, soy is ok again! Dairy is not evil! No need to go gluten/nut/coffee/sugar-free for fostering the ideal environment for baby to stick around! I didn't know what cycle day I was on. I didn't cry in the bathroom when my period arrived and then fill my grief with baked goods. Not TTCing has been one of the most freeing things in the world.
Before The Surgery to End All Surgeries, I'd had difficulty conceiving and two miscarriages, and I hated TTCing. The IF blogosphere is filled with people like me who keep trying, understandably, for their take-home baby. Chronic pain is what did me in.
I'm kind of an old pro with intermittent pelvic pain. I've had horribly painful periods since I was a teenager, which turned out to be endometriosis that was probably contributing to my infertility (huge surprise—not). But the painful periods were only for a few days a month.
The pain I have now is all the time.
I've never experienced any kind of chronic, day-to-day pain other than run-of-the mill tendinitis or other exercise-related aches. This is completely new. If I hadn't gone through infertility and loss, I'd say this is the hardest thing I've ever gone through. So it's a close third. The pain tries to shatter me. Not one aspect of my life is untouched: my relationships, my job, my sleep. My sanity.
I've used about 130 hours of sick leave for the pain since March. I missed my nephew's first birthday party and my niece's summer ballet recital. My demeanor has been irritable and prickly for the most part, even if at first I appear pleasant. A smile or pleasant conversation does not mean I'm not in pain or will not suddenly lash out at something. Or just lose track of what you're saying as I plot my next attempt at pain relief. My pain level is usually pretty high but I'm trying, trying ever so hard to pretend it doesn't exist. The irritability is usually unleashed on my husband, and when I immediately apologize and explain that my pain level is really high, he is understanding. But he doesn't deserve this.
I go to PT weekly and usually have one other doctor's appointment during the week; it's a big time-suck. At these appointments, I've asked about my prognosis, of course. My healthcare providers don't like this question because they don't know the answer. They hem and haw a bit, and say we'll have to wait and see, "ask me again in a few weeks." The two physicians I've asked are both pelvic pain specialists, and both have predicted that I would "probably" be fine with a pregnancy. That pregnancy hormones tend to have a calming influence on my syndrome.
Fine. But what about the ENTIRE REST OF MY LIFE AFTER THE PREGNANCY? Will the changes wrought by pregnancy and childbirth wreak havoc on my already fucked-up body?
The physicians haven't given me a real answer for that. My PT has given it to me straight, though. She says she's seen it both ways: some people with my issues have a pregnancy that goes ok and they feel fine afterwards, and some do not. I didn't ask her to elaborate much because I don't even want to hear about patients who have it worse afterwards; I cannot imagine their pain.
I'm not a risk-taker. Not that anyone knows statistics for outcomes of women with uterine abnormalities who have undergone surgeries and go on to develop chronic pelvic pain and then go on to have pregnancies, but I've thought a little about what kind of odds I would bet on: at what odds of worsened pain in the future would I consider getting pregnant again? What if 50% of women like me felt ok during the pregnancy and then, postpartum and beyond, felt even better than before the pregnancy? 50/50 odds. No way in hell I'd do it. What if 90% felt great afterward? Nope, still wouldn't do it.
I cannot conceive (pun intended) of a future filled with this kind of pain. It's been going on for 7 months already and I don't know how I've done it. People comment on how strong I am to have dealt with this for so long, but I don't feel strong. I just feel like myself....in severe pain. It's day-to-day living now. I try not to plan too far in advance.
If I can't find a way to decrease my pain level before I have a child, I cannot be the kind of mom I want to be. I physically could not handle the sleep deprivation that comes with a newborn; less sleep = more pain. I would be glued to the couch, not on the floor playing with my baby or walking around to soothe her at night. I couldn't take her for walks in the stroller or teach her to ride a bike. I would have trouble attending her soccer games; sitting up for a couple of hours hurts too much. Worst of all, I could not be the emotionally supportive, stable, fun type of mom I want to be. It would not be possible.
The decision not to TTC is easier knowing that adoption is a possibility. But even if adoption wasn't on the table and our remaining option was childfree living, I would have to choose childfree living over TTC. Why in the world would I choose *possibly* having severe pain the rest of my life? My (hopefully) future children would be worse off for it, my family and husband would struggle with me, and I would constantly fight the pain demon.
When I started this post, I'd intended to write even more, tell you about how in my previous incarnation, I ran a half marathon at an 8:10 min/mile pace. Now I can hardly walk a mile once a week. I'd wanted to tell you that I do still grieve for the loss of my husband's and my biological child, the little blonde boy who looks like his dad. Also, I could write for days about how you don't know until you've been there what kind of decisions you'd make when you've had pain that reaches an 8 every day, sometimes staying there for hours at a time. And it goes on for months and months, possibly years. But I've written enough for now.
For all of these reasons, I will never pursue pregnancy again. I love myself too much and won't knowingly put myself in harm's way. I want more out of life than appointments, pills, and this seemingly endless gnawing, burning pain that is trying to eat me alive.
This does not mean I don't wish things were different with my body. That I don't wish I had another body without a pain syndrome and uterine issues. I still long to grow a round belly, feel kicks and punches from a little one inside me. The desire, the longing, is still there. But it's like wishing you hadn't broken your arm; it's broken and you have to deal with it. Maybe you have to stop playing tennis forever. Maybe the break is so bad it will affect you the rest of your life. You can spend your time wishing you weren't limited physically or you can adjust your expectations.
My decision to forever stop TTC didn't happen overnight. A few weeks after my surgery in March, even though I was still in extreme pain, I was scheduling a 3D sonogram appointment to prepare for my next letrozole cycle. I was optimistic. I didn't know this kind of pain syndrome even existed. Who has heard about pelvic floor muscles unless you've given birth or are 80 years old? I hadn't been aware of mine.
Needless to say, I had to cancel the 3D sono appointment, which was just one of the many things that has given me pause since March. If I couldn't schedule it at that point, then when? The next month? Three months from now? (Correct answer is none of the above.)
My thinking shifted gradually. I'd felt unsure about trying for pregnancy #3, anyway. Pregnancy #2 ended around 7 weeks last fall. The chromosomal testing came back normal, and my doctor thought the miscarriage was related to a structural problem with my uterus. Supposedly the structural issue was fixed by my last (catastrophic) surgery, but who really knows? Why tempt fate? Why put myself in the position to lose another baby when my heart has been shattered twice already?
As the months ticked by after the surgery, I stopped planning for my next RE appointment. I had a brand new, all-consuming shitstorm with that wasn't TTC-related: chronic pain. But in spite of that, I started living again. I ate what I wanted: suddenly, soy is ok again! Dairy is not evil! No need to go gluten/nut/coffee/sugar-free for fostering the ideal environment for baby to stick around! I didn't know what cycle day I was on. I didn't cry in the bathroom when my period arrived and then fill my grief with baked goods. Not TTCing has been one of the most freeing things in the world.
Before The Surgery to End All Surgeries, I'd had difficulty conceiving and two miscarriages, and I hated TTCing. The IF blogosphere is filled with people like me who keep trying, understandably, for their take-home baby. Chronic pain is what did me in.
I'm kind of an old pro with intermittent pelvic pain. I've had horribly painful periods since I was a teenager, which turned out to be endometriosis that was probably contributing to my infertility (huge surprise—not). But the painful periods were only for a few days a month.
The pain I have now is all the time.
I've never experienced any kind of chronic, day-to-day pain other than run-of-the mill tendinitis or other exercise-related aches. This is completely new. If I hadn't gone through infertility and loss, I'd say this is the hardest thing I've ever gone through. So it's a close third. The pain tries to shatter me. Not one aspect of my life is untouched: my relationships, my job, my sleep. My sanity.
I've used about 130 hours of sick leave for the pain since March. I missed my nephew's first birthday party and my niece's summer ballet recital. My demeanor has been irritable and prickly for the most part, even if at first I appear pleasant. A smile or pleasant conversation does not mean I'm not in pain or will not suddenly lash out at something. Or just lose track of what you're saying as I plot my next attempt at pain relief. My pain level is usually pretty high but I'm trying, trying ever so hard to pretend it doesn't exist. The irritability is usually unleashed on my husband, and when I immediately apologize and explain that my pain level is really high, he is understanding. But he doesn't deserve this.
I go to PT weekly and usually have one other doctor's appointment during the week; it's a big time-suck. At these appointments, I've asked about my prognosis, of course. My healthcare providers don't like this question because they don't know the answer. They hem and haw a bit, and say we'll have to wait and see, "ask me again in a few weeks." The two physicians I've asked are both pelvic pain specialists, and both have predicted that I would "probably" be fine with a pregnancy. That pregnancy hormones tend to have a calming influence on my syndrome.
Fine. But what about the ENTIRE REST OF MY LIFE AFTER THE PREGNANCY? Will the changes wrought by pregnancy and childbirth wreak havoc on my already fucked-up body?
The physicians haven't given me a real answer for that. My PT has given it to me straight, though. She says she's seen it both ways: some people with my issues have a pregnancy that goes ok and they feel fine afterwards, and some do not. I didn't ask her to elaborate much because I don't even want to hear about patients who have it worse afterwards; I cannot imagine their pain.
I'm not a risk-taker. Not that anyone knows statistics for outcomes of women with uterine abnormalities who have undergone surgeries and go on to develop chronic pelvic pain and then go on to have pregnancies, but I've thought a little about what kind of odds I would bet on: at what odds of worsened pain in the future would I consider getting pregnant again? What if 50% of women like me felt ok during the pregnancy and then, postpartum and beyond, felt even better than before the pregnancy? 50/50 odds. No way in hell I'd do it. What if 90% felt great afterward? Nope, still wouldn't do it.
I cannot conceive (pun intended) of a future filled with this kind of pain. It's been going on for 7 months already and I don't know how I've done it. People comment on how strong I am to have dealt with this for so long, but I don't feel strong. I just feel like myself....in severe pain. It's day-to-day living now. I try not to plan too far in advance.
If I can't find a way to decrease my pain level before I have a child, I cannot be the kind of mom I want to be. I physically could not handle the sleep deprivation that comes with a newborn; less sleep = more pain. I would be glued to the couch, not on the floor playing with my baby or walking around to soothe her at night. I couldn't take her for walks in the stroller or teach her to ride a bike. I would have trouble attending her soccer games; sitting up for a couple of hours hurts too much. Worst of all, I could not be the emotionally supportive, stable, fun type of mom I want to be. It would not be possible.
The decision not to TTC is easier knowing that adoption is a possibility. But even if adoption wasn't on the table and our remaining option was childfree living, I would have to choose childfree living over TTC. Why in the world would I choose *possibly* having severe pain the rest of my life? My (hopefully) future children would be worse off for it, my family and husband would struggle with me, and I would constantly fight the pain demon.
When I started this post, I'd intended to write even more, tell you about how in my previous incarnation, I ran a half marathon at an 8:10 min/mile pace. Now I can hardly walk a mile once a week. I'd wanted to tell you that I do still grieve for the loss of my husband's and my biological child, the little blonde boy who looks like his dad. Also, I could write for days about how you don't know until you've been there what kind of decisions you'd make when you've had pain that reaches an 8 every day, sometimes staying there for hours at a time. And it goes on for months and months, possibly years. But I've written enough for now.
For all of these reasons, I will never pursue pregnancy again. I love myself too much and won't knowingly put myself in harm's way. I want more out of life than appointments, pills, and this seemingly endless gnawing, burning pain that is trying to eat me alive.
Saturday, June 23, 2012
Dear Body: We Need to Talk
Hey girl. I know you're having some rough times. Let's talk about what's going on.
You're upset, understandably, from repeated assaults by surgery and endo. I am partly to blame, but we need to come to an understanding about how to work things out.
I've taken pretty decent care of you over the years. I'm sorry about the binge drinking in college—that wasn't cool. But I cleaned up my act pretty nicely and turned into a half marathoner and triathlete, and I appreciate your allowing me to do these. We worked well together and I think I should get some credit for pursuing such healthy hobbies.
Tendinitis helped me realize that I needed to take care of you a little differently than before, with a little less impact, and I switched to yoga. You thanked me and we had a nice routine going on for a while there.
Let's talk about food. I was a vegetarian for 13 years, and going back to meat hasn't changed my overall outlook on food. I believe in breakfast, lunch, dinner, and two snacks, and I think you'd agree we have a good thing going. No issues there, right? Lots of fruits and veggies?
Good. That brings me to my key complaint. You're probably thinking it's going to be infertility. Good guess, but something else is bothering me even more than that. So let's set infertility aside for the moment and talk about pain.
I'm certain that some of my choices have led us to this impasse. First, I let endo have its way for a while because I didn't believe in the Pill. Mistake. I realize now that I should have stayed on the Pill up to the month we wanted to get pregnant, but I didn't know that then. I'm sorry.
I tried to fix the endo situation by having the laparoscopy last year. My intentions were pure, but I'm pretty sure you hated the surgery even more than you hated the endo. I had no idea you'd react that way to laparoscopic surgery. I've never heard of someone taking 3 months to recover, so I'm not sure how I would have anticipated that.
Then I got greedy. I tried again to get pregnant. And I didn't just try, I used letrozole. It worked, and we were pregnant again. And then we weren't. Not to be flip, but...you sure showed me. You showed me that it was a sign of hubris to try for a biological child again after I knew a uterine septum was present. Maybe that was the cause of the miscarriage or maybe it wasn't, but I feel dumb for not getting more opinions about the septum. Dumb and completely, totally heartbroken.
Your downfall was really in full swing by that point. A few months after having the contents of my uterus sucked out again, we brought out the hardware again. I had my doctor trim back my septum and some scar tissue and remove a polyp. And you hated it.
I don't think you've ever felt the same after that surgery in December. I'm thankful to blogging in that it provides a record of just how badly I was doing in January and February. I made a lot of excuses for why I didn't feel great, letrozole this and post-op recovery that, but in retrospect you were sending me signals, loud and clear.
I'm sorry for going back in for surgery in March. I'm sorry for agreeing to the uterine balloon. I don't know why I wasn't getting your signals. On second thought, I do know. I said I wouldn't drag infertility into this discussion, but I'm going to for a second. I'm really, really angry at you for not giving me a child. I know it's not my due, I don't deserve a baby more than anyone else, and infertility is just one of those unlucky conditions. But I did all these interventions, each surgery and procedure, for the chance of having a child. I can see now how much I was risking in terms of your health, but I couldn't give up. I still kinda hate you for not following through on what we're born to do—reproduce.
So I got the balloon and then received your response to it. Yeah. Got it. And I'm still getting it. You're sick and fucking tired of it all. We're in this position because of choices I made, because I had some dream that I was willing to risk everything for.
I get that I went too far, but we need to reach a level of understanding. I can't give you more of the things you need in my current condition. I can't exercise, cook for myself, or sleep well. My cortisol levels must be through the roof when the pain is flaring. I can give you some of the healthy things you need if you back off.
How about I promise to really consider your needs when I make decisions about a possible baby in the future? I can't promise that I won't try again. I'm sorry. But you've reminded me how critically important it is to keep you working and functional, and above all, healthy. I won't forget it.
So please consider backing down. Message received; I made some poor decisions. I was doing my best with the information I had at the time, but I could have paid more attention to your needs. Now that the damage is done, literally, we need to find a way to coexist and hopefully get along. Truce?
Love,
D
You're upset, understandably, from repeated assaults by surgery and endo. I am partly to blame, but we need to come to an understanding about how to work things out.
I've taken pretty decent care of you over the years. I'm sorry about the binge drinking in college—that wasn't cool. But I cleaned up my act pretty nicely and turned into a half marathoner and triathlete, and I appreciate your allowing me to do these. We worked well together and I think I should get some credit for pursuing such healthy hobbies.
Tendinitis helped me realize that I needed to take care of you a little differently than before, with a little less impact, and I switched to yoga. You thanked me and we had a nice routine going on for a while there.
Let's talk about food. I was a vegetarian for 13 years, and going back to meat hasn't changed my overall outlook on food. I believe in breakfast, lunch, dinner, and two snacks, and I think you'd agree we have a good thing going. No issues there, right? Lots of fruits and veggies?
Good. That brings me to my key complaint. You're probably thinking it's going to be infertility. Good guess, but something else is bothering me even more than that. So let's set infertility aside for the moment and talk about pain.
I'm certain that some of my choices have led us to this impasse. First, I let endo have its way for a while because I didn't believe in the Pill. Mistake. I realize now that I should have stayed on the Pill up to the month we wanted to get pregnant, but I didn't know that then. I'm sorry.
I tried to fix the endo situation by having the laparoscopy last year. My intentions were pure, but I'm pretty sure you hated the surgery even more than you hated the endo. I had no idea you'd react that way to laparoscopic surgery. I've never heard of someone taking 3 months to recover, so I'm not sure how I would have anticipated that.
Then I got greedy. I tried again to get pregnant. And I didn't just try, I used letrozole. It worked, and we were pregnant again. And then we weren't. Not to be flip, but...you sure showed me. You showed me that it was a sign of hubris to try for a biological child again after I knew a uterine septum was present. Maybe that was the cause of the miscarriage or maybe it wasn't, but I feel dumb for not getting more opinions about the septum. Dumb and completely, totally heartbroken.
Your downfall was really in full swing by that point. A few months after having the contents of my uterus sucked out again, we brought out the hardware again. I had my doctor trim back my septum and some scar tissue and remove a polyp. And you hated it.
I don't think you've ever felt the same after that surgery in December. I'm thankful to blogging in that it provides a record of just how badly I was doing in January and February. I made a lot of excuses for why I didn't feel great, letrozole this and post-op recovery that, but in retrospect you were sending me signals, loud and clear.
I'm sorry for going back in for surgery in March. I'm sorry for agreeing to the uterine balloon. I don't know why I wasn't getting your signals. On second thought, I do know. I said I wouldn't drag infertility into this discussion, but I'm going to for a second. I'm really, really angry at you for not giving me a child. I know it's not my due, I don't deserve a baby more than anyone else, and infertility is just one of those unlucky conditions. But I did all these interventions, each surgery and procedure, for the chance of having a child. I can see now how much I was risking in terms of your health, but I couldn't give up. I still kinda hate you for not following through on what we're born to do—reproduce.
So I got the balloon and then received your response to it. Yeah. Got it. And I'm still getting it. You're sick and fucking tired of it all. We're in this position because of choices I made, because I had some dream that I was willing to risk everything for.
I get that I went too far, but we need to reach a level of understanding. I can't give you more of the things you need in my current condition. I can't exercise, cook for myself, or sleep well. My cortisol levels must be through the roof when the pain is flaring. I can give you some of the healthy things you need if you back off.
How about I promise to really consider your needs when I make decisions about a possible baby in the future? I can't promise that I won't try again. I'm sorry. But you've reminded me how critically important it is to keep you working and functional, and above all, healthy. I won't forget it.
So please consider backing down. Message received; I made some poor decisions. I was doing my best with the information I had at the time, but I could have paid more attention to your needs. Now that the damage is done, literally, we need to find a way to coexist and hopefully get along. Truce?
Love,
D
Wednesday, June 20, 2012
First It's a Room, Now It's a Clock
As if the vagina room analogy wasn't enough embarrassment, my PT informed me today that my vagina is also a clock. Wonderful.
Both analogies are my abbreviated way of saying that we've figured out that some of my pain issues are associated with pelvic floor muscles. Not a shocker, but at least we're making progress. My PT isn't sure why I'm also having upper abdominal pain, so we're treating that as a separate issue.
The pain doc switched me from Neurontin (gabapentin) to Lyrica, and I can't tell if it's helping at all. What it is doing is making me incredibly sleepy. My max coffee dose per day is usually one cup and then the jitters set in, and now I'm up to four cups and still feel like I could take a nap.
Dr. Third Opinion helped us zero in on specific pelvic floor muscles, and he reiterated the pain doc's pronouncement that PT is where it's at. He gave me yet another medication, a muscle relaxant, which I think is helping. Maybe.
Pain doc has referred me to another clinic (YAY! More appointments! More copays! More internal exams!), where I'll get a fourth opinion. The main reason she wants me to go there is to get a more integrated treatment plan. She thinks the doctors and PTs work more closely there, and the clinic itself specializes in pelvic pain. The clinic is part of a different health system, so getting my extensive medical records transferred over will be interesting.
Some of you have asked if I've tried certain treatment modalities, and it seems like a good time to list the ones I've tried. Here goes. The ones I'm currently using are underlined.
My parents just left our house. They'd stayed for a week, and today is my first day back at work. We mostly hung out on our back deck and watched baby birdies. The baby cardinals and baby bluebirds have left their nests, but two mommy house finches are sitting on nests on our front porch. Busy birdies! I'll get some more photos up soon.
Looking forward to ICLW! Am not looking forward to waking up at 3:30 tomorrow morning for my work trip.
Both analogies are my abbreviated way of saying that we've figured out that some of my pain issues are associated with pelvic floor muscles. Not a shocker, but at least we're making progress. My PT isn't sure why I'm also having upper abdominal pain, so we're treating that as a separate issue.
The pain doc switched me from Neurontin (gabapentin) to Lyrica, and I can't tell if it's helping at all. What it is doing is making me incredibly sleepy. My max coffee dose per day is usually one cup and then the jitters set in, and now I'm up to four cups and still feel like I could take a nap.
Dr. Third Opinion helped us zero in on specific pelvic floor muscles, and he reiterated the pain doc's pronouncement that PT is where it's at. He gave me yet another medication, a muscle relaxant, which I think is helping. Maybe.
Pain doc has referred me to another clinic (YAY! More appointments! More copays! More internal exams!), where I'll get a fourth opinion. The main reason she wants me to go there is to get a more integrated treatment plan. She thinks the doctors and PTs work more closely there, and the clinic itself specializes in pelvic pain. The clinic is part of a different health system, so getting my extensive medical records transferred over will be interesting.
Some of you have asked if I've tried certain treatment modalities, and it seems like a good time to list the ones I've tried. Here goes. The ones I'm currently using are underlined.
- Medications
- Lyrica
- Neurontin (helped but not enough)
- tramadol
- muscle relaxants
- NSAIDs (didn't seem to help)
- narcotics (only help in the short term; not a good long-term strategy)
- the Pill (epic fail; cried constantly when I was having a pain flare)
- Supplements
- pycnogenol (recommended by an acupuncturist to help relieve uterine cramping; super expensive but is maybe helping)
- Alternative therapies
- abdominal massage (helps a good deal; go once a month)
- acupuncture (effective during the session but not afterward; stopped going)
- meditation, including mindfulness, guided imagery, and affirmations (hasn't been effective for pain relief; I'm a fan in general, but am not able to stay awake during it because of the meds I'm taking)
- Movement (or lack thereof)
- PT, including stretching, strength training, ice, and heat (seems to be helping)
- not moving, aka lying down
- walking (generally makes the pain much worse; struggling to find the right balance)
- Other
- living my life, including working, etc
- distraction, including but not limited to reading, watching TV, talking to friends, etc
My parents just left our house. They'd stayed for a week, and today is my first day back at work. We mostly hung out on our back deck and watched baby birdies. The baby cardinals and baby bluebirds have left their nests, but two mommy house finches are sitting on nests on our front porch. Busy birdies! I'll get some more photos up soon.
Looking forward to ICLW! Am not looking forward to waking up at 3:30 tomorrow morning for my work trip.
Tuesday, June 19, 2012
Awkward Analogies with Dr. Third Opinion
I'll give you the deets later for my appointment with Dr. Third Opinion, but for now, here's a list of Things I Wish My Doctors Hadn't Said. I'll start with Dr. Third Opinion's classic:
1. Imagine that this room is your vagina. Could you come up with an analogy that doesn't have us standing in my vagina? It caught me so off guard that I couldn't remember which wall was my cervix.
2. This exam will make you feel like you're peeing on the table. Said to me before an abdominal CT scan. At least they warned me.
3. Is there any chance you could be pregnant? This one is especially good when asked right before a D&C. Um, yes, but with a dead baby?
4. We don't know what's wrong with you. Variations include "None of our patients have this much pain after surgery" and "I'd be happy to refer you to one of my colleagues." Sometimes, this is followed by #5.
5. One option is for you to go to the ER tonight. This one made me transition from mildly concerned to freaking the f*** out.
6. We need to do surgery to see how messed up you are inside. Listen, buddy. Infertility has screwed with my body image enough without you adding "messed up" to my negative self-talk. The doctor who said this a while back wanted to get my laparoscopy business. He didn't get it.
****
A short update: Pain sucks, but family visits mean that my food supply is solid. I have a work trip on Thursday and I have to get up at 3 a.m. for my flight. It is going to be a very rough day. Will my coworker need to push me in a wheelchair through the airport? Stay tuned.
1. Imagine that this room is your vagina. Could you come up with an analogy that doesn't have us standing in my vagina? It caught me so off guard that I couldn't remember which wall was my cervix.
2. This exam will make you feel like you're peeing on the table. Said to me before an abdominal CT scan. At least they warned me.
3. Is there any chance you could be pregnant? This one is especially good when asked right before a D&C. Um, yes, but with a dead baby?
4. We don't know what's wrong with you. Variations include "None of our patients have this much pain after surgery" and "I'd be happy to refer you to one of my colleagues." Sometimes, this is followed by #5.
5. One option is for you to go to the ER tonight. This one made me transition from mildly concerned to freaking the f*** out.
6. We need to do surgery to see how messed up you are inside. Listen, buddy. Infertility has screwed with my body image enough without you adding "messed up" to my negative self-talk. The doctor who said this a while back wanted to get my laparoscopy business. He didn't get it.
****
A short update: Pain sucks, but family visits mean that my food supply is solid. I have a work trip on Thursday and I have to get up at 3 a.m. for my flight. It is going to be a very rough day. Will my coworker need to push me in a wheelchair through the airport? Stay tuned.
Friday, June 8, 2012
To the Coworker Who Saw Me Crying Yesterday
I truly appreciate your concern, but yesterday's pain episode isn't out of left field for me. I haven't kept you completely up to date on the status of my pain because I'm bored with it. I want to talk about other stuff, do other things, and actually work. But I've never been close to being rid of the pain since my surgery 3 months ago. It just ebbs and flows.
Another reason I haven't wanted to talk about it is because I don't want to open the floodgates. That's why I may seem detached and unemotional when I talk about how I'm doing. If I really tell you, if I really let my guard down, I may start crying and not be able to stop. I've cried enough on my own and am not a huge fan of doing it in front of other people, especially at work.
Yes, my pain was severe yesterday and still is. But I don't think it's ER-worthy. In the past 3 months, I have had dozens of doctor's appointments to confirm that I'm not dying or criminally insane, and I don't think they would tell me anything different today.
I have a call into my pain doctor but the asshole clinic isn't calling me back. On the triage nurse's message, she says that they'll get back to you ASAP. If you leave multiple messages, it will delay their response. If you call after 3:00 pm, they won't respond until the next day. I called at 3:02 yesterday. They say prescription refills can take up to 48 hours. What do you bet they aren't including weekends as part of their estimate?
So I suppose I'm expected to either suck it up and deal with pain at 7 or 8, or go to the ER and wait hours to be seen by someone who can't offer me a better diagnosis. I'd rather suck it up. Call me crazy, but I don't really want to rack up more medical expenses for no reason, especially after the $1200 (after insurance) appointment at a psych clinic that determined I'm not a drug seeker.
I will be getting another opinion soon, this time by a surgeon at the clinic where I had my endometriosis surgery. No, there is no way I'm having laparoscopic surgery again, not after the past 3 months., but maybe this doctor will have a new idea for what's going on. Probably not, though. The physicians I've seen already are probably among the best in the state, if not the region, and I trust them.
I have an idea of what brought on this flare, but, no offense, I'd rather not share it with you, you being a coworker and all. There are some things I'd just rather not disclose about my lady parts. I do have a few boundaries.
As to the question of whether my pain is under control, well, it's complicated. It's been under control for the most part lately with the multiple non-narcotic prescriptions I take for it, but when you saw me crying uncontrollably, it was not under control. I have not yet figured out how to anticipate every new throw my condition will hurl at me.
So I'm sorry for not keeping you in the loop. Your support is amazing and the love so many people are directing my way is what's keeping me going.
Thanks,
Cry Baby
Another reason I haven't wanted to talk about it is because I don't want to open the floodgates. That's why I may seem detached and unemotional when I talk about how I'm doing. If I really tell you, if I really let my guard down, I may start crying and not be able to stop. I've cried enough on my own and am not a huge fan of doing it in front of other people, especially at work.
Yes, my pain was severe yesterday and still is. But I don't think it's ER-worthy. In the past 3 months, I have had dozens of doctor's appointments to confirm that I'm not dying or criminally insane, and I don't think they would tell me anything different today.
I have a call into my pain doctor but the asshole clinic isn't calling me back. On the triage nurse's message, she says that they'll get back to you ASAP. If you leave multiple messages, it will delay their response. If you call after 3:00 pm, they won't respond until the next day. I called at 3:02 yesterday. They say prescription refills can take up to 48 hours. What do you bet they aren't including weekends as part of their estimate?
So I suppose I'm expected to either suck it up and deal with pain at 7 or 8, or go to the ER and wait hours to be seen by someone who can't offer me a better diagnosis. I'd rather suck it up. Call me crazy, but I don't really want to rack up more medical expenses for no reason, especially after the $1200 (after insurance) appointment at a psych clinic that determined I'm not a drug seeker.
I will be getting another opinion soon, this time by a surgeon at the clinic where I had my endometriosis surgery. No, there is no way I'm having laparoscopic surgery again, not after the past 3 months., but maybe this doctor will have a new idea for what's going on. Probably not, though. The physicians I've seen already are probably among the best in the state, if not the region, and I trust them.
I have an idea of what brought on this flare, but, no offense, I'd rather not share it with you, you being a coworker and all. There are some things I'd just rather not disclose about my lady parts. I do have a few boundaries.
As to the question of whether my pain is under control, well, it's complicated. It's been under control for the most part lately with the multiple non-narcotic prescriptions I take for it, but when you saw me crying uncontrollably, it was not under control. I have not yet figured out how to anticipate every new throw my condition will hurl at me.
So I'm sorry for not keeping you in the loop. Your support is amazing and the love so many people are directing my way is what's keeping me going.
Thanks,
Cry Baby
Sunday, June 3, 2012
Happy Anniversary to Me
My 3-year TTC anniversary is coming up in August, but I feel a bit like a fraud for saying that. We haven't actually TTCed for the past year in any sense of the word. No timed intercourse, no IUIs, no IVF. I did deal with healing from a miscarriage, waiting on our lost baby's chromosome testing results, and undergoing two surgeries with sucktastic post-op recoveries. And yet, even after a horrible year for my body, I find myself trying to write off the past year as if it doesn't count as time TTCing. Part of it is not wanting to seem like I'm fronting around other IFers.
I've heard lots of sentiments similar to mine in the IF community; IFers who have taken breaks and imply that their months not spent TTCing don't count. Friends with PCOS have said that since they didn't ovulate during the first year of trying, it didn't actually count as trying. Or they only ovulated 3 times in a year so somehow, implying that they only get credit for being in pain part of that year.
The pain-minimizing phenomenon really jumped out at me at the first meeting of my infertility support group. We started off introducing ourselves and telling everyone where we were in the process. I was about 1.5 years in at the time and hadn't started treatments, while everyone else had 3-4 years of TTC under their belts, often with IVF. I felt like a fraud—who was I to claim I'd suffered when these women had been through so much?
Although I saw them as legitimate IFers, the group members were creative at finding ways to minimize their own struggles. They'd say things like, "We've been trying for 4 years but we weren't really trying that entire time—we took time off between treatments." When it was my turn, I found myself saying, "I've only been trying for one and half years and we haven't started treatments yet. We're early in the process." I'd had a miscarriage and a laparoscopy, but I needed them to know that I realized I wasn't in their league, pain-wise.
Although pain minimizing drives me a bit crazy—we've all been through a lot—all pain isn't equal. Mali wrote a great post about this recently, emphasizing that this doesn't mean we shouldn't grieve, just that we need to keep some perspective about it. So true.
I talked about perspective recently with my therapist, who says there are two ways to look at a personal struggle. To paraphrase and probably oversimplify it, you can concentrate on how much worse you have it than everyone else, or you can focus on how others have it worse than you. Clinical outcomes, however they were measured, tend to be better for those who concentrate on how others have it worse.
Lately, even with my ongoing pain, I've mostly been thinking lately about how others have it worse. I'm in a gratefulness phase, which has definitely not always been the case since we started trying. I feel like I have a pretty good perspective about all of this, but I'm not going to minimize what I've been through. I'm 3 full years into TTC and it still sucks.
*****
On the topic of gratefulness, you all constantly surprise me with the thought and love you put into writing comments. You may not be huggers and I'm not even super huggy myself, but your comments feel like big hugs coming through the screen. I tear up while I read them and reread them when I need support. Thank you.
I welcome feedback if I'm saying something ridiculous, too. If I need to have my thoughts rearranged, let me know. In a nice way. :)
*****
I'm going on the Pill in the hope that calming down some of my monthly hormonal fluctuations will decrease my pain. An additional benefit is that it's birth control; with the pain meds I'm taking, I can't safely get pregnant. A huge drawback is that the Pill tends to turn me into Crazy Town, weepy and prone to temper outbursts. People need to steer clear of me for the next few months.
When I talked to my RE about getting the Pill prescription, she seemed really surprised that I'm still in this much pain. It scares me to be this much of an outlier; she's essentially telling me I'm the 0.01%. I think I freak her out—I have been in constant pain for 3 months as a result of her performing surgery on me. And she doesn't seem to know what to make of me.
My pain doc seems really sure of my diagnosis, though. She hasn't shared the medical terminology for it, but it has to do with my history of pelvic pain, endo, and surgery sensitizing the nerves further. I haven't asked her about my prognosis, but I need to. Big time.
So I have the expert opinions of two doctors. One is unsure of my diagnosis and worried about me, and the other says I just got screwed genetically and I'll eventually get better (at least, I hope she thinks I'll get better). I'm starting to think a tad about getting a third opinion, although I'm not sure if it's necessary. Pros are that it could give me peace of mind, help me get out of pain, and prevent this kind of shitstorm in the future. Cons are that it's yet another appointment and copay, and I'm actually pretty confident in my pain doctor. My pelvic pain was on the rise even before this latest surgery (thank you, blogging, for helping me remember that), and the uterine balloon was the straw that broke the camel's back. I'll be thinking about a possible third opinion.
*****
In addition to "celebrating" our 3-year TTC anniversary, my husband and I had our 5-year wedding anniversary yesterday. :) Love you, baby!
Alright, I need to go read my book club book on our deck. It's 80 degrees, sunny, and the mosquitoes haven't taken over yet. Have a good one!
I've heard lots of sentiments similar to mine in the IF community; IFers who have taken breaks and imply that their months not spent TTCing don't count. Friends with PCOS have said that since they didn't ovulate during the first year of trying, it didn't actually count as trying. Or they only ovulated 3 times in a year so somehow, implying that they only get credit for being in pain part of that year.
The pain-minimizing phenomenon really jumped out at me at the first meeting of my infertility support group. We started off introducing ourselves and telling everyone where we were in the process. I was about 1.5 years in at the time and hadn't started treatments, while everyone else had 3-4 years of TTC under their belts, often with IVF. I felt like a fraud—who was I to claim I'd suffered when these women had been through so much?
Although I saw them as legitimate IFers, the group members were creative at finding ways to minimize their own struggles. They'd say things like, "We've been trying for 4 years but we weren't really trying that entire time—we took time off between treatments." When it was my turn, I found myself saying, "I've only been trying for one and half years and we haven't started treatments yet. We're early in the process." I'd had a miscarriage and a laparoscopy, but I needed them to know that I realized I wasn't in their league, pain-wise.
Although pain minimizing drives me a bit crazy—we've all been through a lot—all pain isn't equal. Mali wrote a great post about this recently, emphasizing that this doesn't mean we shouldn't grieve, just that we need to keep some perspective about it. So true.
I talked about perspective recently with my therapist, who says there are two ways to look at a personal struggle. To paraphrase and probably oversimplify it, you can concentrate on how much worse you have it than everyone else, or you can focus on how others have it worse than you. Clinical outcomes, however they were measured, tend to be better for those who concentrate on how others have it worse.
Lately, even with my ongoing pain, I've mostly been thinking lately about how others have it worse. I'm in a gratefulness phase, which has definitely not always been the case since we started trying. I feel like I have a pretty good perspective about all of this, but I'm not going to minimize what I've been through. I'm 3 full years into TTC and it still sucks.
*****
On the topic of gratefulness, you all constantly surprise me with the thought and love you put into writing comments. You may not be huggers and I'm not even super huggy myself, but your comments feel like big hugs coming through the screen. I tear up while I read them and reread them when I need support. Thank you.
I welcome feedback if I'm saying something ridiculous, too. If I need to have my thoughts rearranged, let me know. In a nice way. :)
*****
I'm going on the Pill in the hope that calming down some of my monthly hormonal fluctuations will decrease my pain. An additional benefit is that it's birth control; with the pain meds I'm taking, I can't safely get pregnant. A huge drawback is that the Pill tends to turn me into Crazy Town, weepy and prone to temper outbursts. People need to steer clear of me for the next few months.
When I talked to my RE about getting the Pill prescription, she seemed really surprised that I'm still in this much pain. It scares me to be this much of an outlier; she's essentially telling me I'm the 0.01%. I think I freak her out—I have been in constant pain for 3 months as a result of her performing surgery on me. And she doesn't seem to know what to make of me.
My pain doc seems really sure of my diagnosis, though. She hasn't shared the medical terminology for it, but it has to do with my history of pelvic pain, endo, and surgery sensitizing the nerves further. I haven't asked her about my prognosis, but I need to. Big time.
So I have the expert opinions of two doctors. One is unsure of my diagnosis and worried about me, and the other says I just got screwed genetically and I'll eventually get better (at least, I hope she thinks I'll get better). I'm starting to think a tad about getting a third opinion, although I'm not sure if it's necessary. Pros are that it could give me peace of mind, help me get out of pain, and prevent this kind of shitstorm in the future. Cons are that it's yet another appointment and copay, and I'm actually pretty confident in my pain doctor. My pelvic pain was on the rise even before this latest surgery (thank you, blogging, for helping me remember that), and the uterine balloon was the straw that broke the camel's back. I'll be thinking about a possible third opinion.
*****
In addition to "celebrating" our 3-year TTC anniversary, my husband and I had our 5-year wedding anniversary yesterday. :) Love you, baby!
Alright, I need to go read my book club book on our deck. It's 80 degrees, sunny, and the mosquitoes haven't taken over yet. Have a good one!
Saturday, April 28, 2012
The Good and the Bad
I'll start off with the Good. I'm so thankful for your thoughtful comments on my last post about knowing when to stop TTC. I haven't responded to all of them—taking some time to process them and work has been crazy—but I truly appreciate your taking the time to stop by and comment. The comments warmed my heart. Hearing from friends I hadn't heard from in a while, reading some of your thoughts about stopping...I'm constantly amazed at the warmth and thoughtfulness of bloggers and other commenters, most of whom I've never met in real life.
A Woman My Age asked if I'd considered alternative therapies for my pain, such as acupuncture. I did weekly acupuncture sessions for about a month after this surgery. I got amazing pain relief during the sessions but unfortunately the pain always returned in full force a few minutes after I got up from the table. I considered continuing the sessions in case they were helping in ways I didn't comprehend. I asked my main doctors whether I should continue acu treatments; they're both pro-acupuncture in general. My pain doctor said she expected the pain relief to last beyond the session, and since it wasn't lasting I should stop. At $90 a session, I was a little relieved.
This week, I'll be starting physical therapy and biofeedback at the recommendation of my pain doctor. I'm curious to see what PT will recommend. I don't know much about biofeedback but I'm willing to give it a shot. In the midst of all of this, I've also been half-heartedly meditating. My therapist wants me to do it daily but I'm having trouble committing to it.
Also in the Good category is that my RE (reproductive endocrinologist) gave me some good news this week. She did a regular ultrasound of my unbelievebly screwy uterus and things actually looked good. Before the most recent surgery, there was a pucker where one side of my uterus seemed unnaturally drawn to the other side. I think it was scar tissue, adenomyosis, something of that nature. The pucker is now gone. I'm breathing a small sigh of relief, not a huge one yet, because the real picture of how I'm healing will be a 3D sonogram. Not sure when I'll feel good enough to do one.
Which leads me to the Bad. I'm still feeling shitty. The pain feels like it's here to stay, regardless of my doctors' reassurances that I will get better someday. Instead of hurting in the uterine area, it mostly hurts under my ribcage, which totally weirds out my RE. The pain doc still acts blase (accent over the "e"—don't know how to do them in Blogger) about it all, like she sees uterine surgeries resulting in burning upper abdominal pain all the time. She increased my gabapentin dose, which seems to be helping already. She also gave me a great answer to my question about how much activity I should be doing. She said resting too much was more of a concern than being too active, so I should try to be active within reason. So that was actually a Good buried within the Bad. I'm glad to be given the green light to being more active.
Blogging and commenting has had to take back seat lately as projects at work keep piling on. I'm a medical writer, and I've been lucky lately to be writing about oral hygiene. Sometimes it's much worse—chronic diseases, diarrhea, or...oral contraceptives. Fortunately the oral contraceptive project got put on hold because I did not enjoy writing about the magic of conception.
Anyway, I'm here and reading your posts even when I'm not able to comment much. Hope you're all having a good weekend!
A Woman My Age asked if I'd considered alternative therapies for my pain, such as acupuncture. I did weekly acupuncture sessions for about a month after this surgery. I got amazing pain relief during the sessions but unfortunately the pain always returned in full force a few minutes after I got up from the table. I considered continuing the sessions in case they were helping in ways I didn't comprehend. I asked my main doctors whether I should continue acu treatments; they're both pro-acupuncture in general. My pain doctor said she expected the pain relief to last beyond the session, and since it wasn't lasting I should stop. At $90 a session, I was a little relieved.
This week, I'll be starting physical therapy and biofeedback at the recommendation of my pain doctor. I'm curious to see what PT will recommend. I don't know much about biofeedback but I'm willing to give it a shot. In the midst of all of this, I've also been half-heartedly meditating. My therapist wants me to do it daily but I'm having trouble committing to it.
Also in the Good category is that my RE (reproductive endocrinologist) gave me some good news this week. She did a regular ultrasound of my unbelievebly screwy uterus and things actually looked good. Before the most recent surgery, there was a pucker where one side of my uterus seemed unnaturally drawn to the other side. I think it was scar tissue, adenomyosis, something of that nature. The pucker is now gone. I'm breathing a small sigh of relief, not a huge one yet, because the real picture of how I'm healing will be a 3D sonogram. Not sure when I'll feel good enough to do one.
Which leads me to the Bad. I'm still feeling shitty. The pain feels like it's here to stay, regardless of my doctors' reassurances that I will get better someday. Instead of hurting in the uterine area, it mostly hurts under my ribcage, which totally weirds out my RE. The pain doc still acts blase (accent over the "e"—don't know how to do them in Blogger) about it all, like she sees uterine surgeries resulting in burning upper abdominal pain all the time. She increased my gabapentin dose, which seems to be helping already. She also gave me a great answer to my question about how much activity I should be doing. She said resting too much was more of a concern than being too active, so I should try to be active within reason. So that was actually a Good buried within the Bad. I'm glad to be given the green light to being more active.
Blogging and commenting has had to take back seat lately as projects at work keep piling on. I'm a medical writer, and I've been lucky lately to be writing about oral hygiene. Sometimes it's much worse—chronic diseases, diarrhea, or...oral contraceptives. Fortunately the oral contraceptive project got put on hold because I did not enjoy writing about the magic of conception.
Anyway, I'm here and reading your posts even when I'm not able to comment much. Hope you're all having a good weekend!
Sunday, April 15, 2012
My Body's Saying "No"
I'm not sure how much more TTC I can take.
I'm tired of feeling bad. We can't seem to stop messing with my reproductive organs and I'm afraid we're screwing up my body. Hormones, surgeries, uterine balloons...whatever we've done that's so pissed you off, Body, I'm sorry. I know you want to get on the Pill, calm down the endo, and forget about having children, but I don't think I'm ready to stop.
I've felt bad enough with all the post-op pain lately that I often forget why we're doing this. A baby seems like a fantasy, like I'm kidding myself to think I could possibly ever have one. It's not helping that I'm not sure when I'll feel better and my uterus will cease to be messed up, both of which need to occur before we try again.
To check the architectural/healing status of my uterus, I need to have a 3D sonogram during the early part of a cycle. Although Aunt Flo came a few days ago, I'm skipping the 3D sono this cycle. My doctor and I decided it would decidedly not be a good idea since my uterus is still pissed off from the last procedure. We can hope that I'll be feeling good enough to have the 3D sono next cycle, but who knows. It might be a couple more cycles until we can TTC again.
Trying seems very abstract after being TTA so long. And like I said in a recent post, being TTA is freeing. I desperately still want a child but haven't been forced to focus on getting there. I'm living my life.
But I want my life back in full. I want to be healthy and active again and doing my normal activities. I'm tired of having to constantly plan around pain. I'm tired of surgeries and doctors. I'm tired of having my clinic on speed dial and knowing the nurse line options by heart. I want yoga, walking, cooking, and everything I normally do.
I'm sure my struggles so far are a small price to pay for the chance at having a child. The thing is, I don't know how much longer this will go on, and I don't know how much more my body can take. Our bodies don't have long to be on this planet and I want mine to be as healthy as possible. What if I'm irreversibly damaging it by going under the knife time after time? What if my nerves, damaged by endo, are getting so pissed off that they will act up the rest of my life? What if the hormones I've taken cause the endo flare to end all flares?
I won't even go into how I don't know how much more of trying my heart can take. But I don't.
There's also the question of how my body would behave with a pregnancy that lasts beyond 7 weeks, the time both of my miscarriages were diagnosed. I think we've established that my uterus is cranky, to say the least. Am I setting myself up for a pregnancy full of complications? Will I be in pain and on bedrest for 9 months? My two short-lived pregnancies were probably farther on the crampy/twingy continuum than most, but not awful. But I haven't experienced anything beyond 7 weeks. How in the world will my pissy uterus deal with an actual fetus?
Blah. I know I need to talk to my doctor about my fears but we're in survival mode currently, just trying to get past this painful post-op time. Communications with my doctor involve plans for the immediate future only.
A part of me, the part with feelings, isn't just in "making it through the day" mode, though. Tomorrow is my due date for my last pregnancy. I've been reflecting on the tiny little baby we saw on the ultrasound screen, perfect except for not having a heartbeat. We found out a few weeks after my D&C that it was a girl. I miss her. I wish I was worried about labor and delivery now and not when to stop trying.
I'm tired of feeling bad. We can't seem to stop messing with my reproductive organs and I'm afraid we're screwing up my body. Hormones, surgeries, uterine balloons...whatever we've done that's so pissed you off, Body, I'm sorry. I know you want to get on the Pill, calm down the endo, and forget about having children, but I don't think I'm ready to stop.
I've felt bad enough with all the post-op pain lately that I often forget why we're doing this. A baby seems like a fantasy, like I'm kidding myself to think I could possibly ever have one. It's not helping that I'm not sure when I'll feel better and my uterus will cease to be messed up, both of which need to occur before we try again.
To check the architectural/healing status of my uterus, I need to have a 3D sonogram during the early part of a cycle. Although Aunt Flo came a few days ago, I'm skipping the 3D sono this cycle. My doctor and I decided it would decidedly not be a good idea since my uterus is still pissed off from the last procedure. We can hope that I'll be feeling good enough to have the 3D sono next cycle, but who knows. It might be a couple more cycles until we can TTC again.
Trying seems very abstract after being TTA so long. And like I said in a recent post, being TTA is freeing. I desperately still want a child but haven't been forced to focus on getting there. I'm living my life.
But I want my life back in full. I want to be healthy and active again and doing my normal activities. I'm tired of having to constantly plan around pain. I'm tired of surgeries and doctors. I'm tired of having my clinic on speed dial and knowing the nurse line options by heart. I want yoga, walking, cooking, and everything I normally do.
I'm sure my struggles so far are a small price to pay for the chance at having a child. The thing is, I don't know how much longer this will go on, and I don't know how much more my body can take. Our bodies don't have long to be on this planet and I want mine to be as healthy as possible. What if I'm irreversibly damaging it by going under the knife time after time? What if my nerves, damaged by endo, are getting so pissed off that they will act up the rest of my life? What if the hormones I've taken cause the endo flare to end all flares?
I won't even go into how I don't know how much more of trying my heart can take. But I don't.
There's also the question of how my body would behave with a pregnancy that lasts beyond 7 weeks, the time both of my miscarriages were diagnosed. I think we've established that my uterus is cranky, to say the least. Am I setting myself up for a pregnancy full of complications? Will I be in pain and on bedrest for 9 months? My two short-lived pregnancies were probably farther on the crampy/twingy continuum than most, but not awful. But I haven't experienced anything beyond 7 weeks. How in the world will my pissy uterus deal with an actual fetus?
Blah. I know I need to talk to my doctor about my fears but we're in survival mode currently, just trying to get past this painful post-op time. Communications with my doctor involve plans for the immediate future only.
A part of me, the part with feelings, isn't just in "making it through the day" mode, though. Tomorrow is my due date for my last pregnancy. I've been reflecting on the tiny little baby we saw on the ultrasound screen, perfect except for not having a heartbeat. We found out a few weeks after my D&C that it was a girl. I miss her. I wish I was worried about labor and delivery now and not when to stop trying.
Sunday, March 18, 2012
I Have Other Organs Down There
I appear to have a UTI from the catheter used during my surgery. Went in on Friday for my fourth clinic visit of the week and had tons of pain when my main doc pressed on my bladder. She was thrilled to give me a likely diagnosis and said gleefully, "I can treat a UTI!" As opposed to any number of non-gynecological things that could be going on.
Quick recap if the state of my uterus isn't at the top of your list to worry about: had surgery 3/9 to remove scar tissue and more of my uterine septum, had a balloon put in my uterus, excruciating pain, ER visit threatened, balloon removed, more pain, more days off work, clinic visit times four, pain.
A urinalysis was normal on Friday but a culture came back on Saturday growing a common UTI bacterium, so I started antibiotics last night. Pyridium seems to be helping a bit.
If this is indeed a UTI, it's my first. What a horrible feeling. I never would have expected this level of pain. On Friday night, it was particularly bad and I went to bed planning my funeral. I had taken Ambien to help me sleep, and was afraid I'd die during the night without realizing it because I was knocked out. I told my husband to check my breathing before he went to bed and asked if he thought my doctor would attend my funeral. Because it might be awkward, you know, as the attending physician. For the record, I love her and would be happy for her to come.
I do not love one of the fellows who is in training. First it was the mixed messages, telling me not to take narcotics one day and then later instructing me to take more narcotics so I can increase my mobility. I'm fairly medically inclined, but with all the pain, meds, and stress of the past week, I needed some clearer communication. This physician also told me, the day before my main doc suspected the bladder stuff, that I should take hot showers for the pain and stop bothering him. Not in so many words, but that was the gist.
I'm tired of having to page the fellows on call. I mean, I've enjoyed getting to know the hospital operators—we're on a first-name basis—but I really just want to be back at work. I'm definitely leaving that sentence in so I can reread it when I'm hating work.
I'm afraid I'm not out of the woods yet. My doctor said she's perplexed still. My urinalysis should have come back with increased leukocytes or whatever if this is a UTI. If the infection is in the very early stages and my leukocytes haven't kicked in yet, I shouldn't be in this much pain. My bladder could have been irritated by the fluid they injected for the procedure, but should be getting better by now.
Another theory before the bladder stuff emerged is that this is an endo flare caused by the hormones I've taken in the past month, but it doesn't feel like any endo pain I've had before. I know that doesn't exclude endo, because it can surprise even us veteran sufferers, but I'm just not having any of the uterine crampy pain I typically have with it. I think I was crampy while the balloon was still in place, but not since it was removed.
Someday I will blog about something other than pain, but for the time being, it's my world. That and Netflix.
Quick recap if the state of my uterus isn't at the top of your list to worry about: had surgery 3/9 to remove scar tissue and more of my uterine septum, had a balloon put in my uterus, excruciating pain, ER visit threatened, balloon removed, more pain, more days off work, clinic visit times four, pain.
A urinalysis was normal on Friday but a culture came back on Saturday growing a common UTI bacterium, so I started antibiotics last night. Pyridium seems to be helping a bit.
If this is indeed a UTI, it's my first. What a horrible feeling. I never would have expected this level of pain. On Friday night, it was particularly bad and I went to bed planning my funeral. I had taken Ambien to help me sleep, and was afraid I'd die during the night without realizing it because I was knocked out. I told my husband to check my breathing before he went to bed and asked if he thought my doctor would attend my funeral. Because it might be awkward, you know, as the attending physician. For the record, I love her and would be happy for her to come.
I do not love one of the fellows who is in training. First it was the mixed messages, telling me not to take narcotics one day and then later instructing me to take more narcotics so I can increase my mobility. I'm fairly medically inclined, but with all the pain, meds, and stress of the past week, I needed some clearer communication. This physician also told me, the day before my main doc suspected the bladder stuff, that I should take hot showers for the pain and stop bothering him. Not in so many words, but that was the gist.
I'm tired of having to page the fellows on call. I mean, I've enjoyed getting to know the hospital operators—we're on a first-name basis—but I really just want to be back at work. I'm definitely leaving that sentence in so I can reread it when I'm hating work.
I'm afraid I'm not out of the woods yet. My doctor said she's perplexed still. My urinalysis should have come back with increased leukocytes or whatever if this is a UTI. If the infection is in the very early stages and my leukocytes haven't kicked in yet, I shouldn't be in this much pain. My bladder could have been irritated by the fluid they injected for the procedure, but should be getting better by now.
Another theory before the bladder stuff emerged is that this is an endo flare caused by the hormones I've taken in the past month, but it doesn't feel like any endo pain I've had before. I know that doesn't exclude endo, because it can surprise even us veteran sufferers, but I'm just not having any of the uterine crampy pain I typically have with it. I think I was crampy while the balloon was still in place, but not since it was removed.
Someday I will blog about something other than pain, but for the time being, it's my world. That and Netflix.
Monday, November 7, 2011
Head in the Sand
The moral of the following story is, "Don't put your health completely in the hands of your doctors." They might not correctly interpret your descriptions of your symptoms, and of course they don't always spend as much time considering options as you would yourself. For me, this lesson came from my experience with a disease called endometriosis.
A quick side note for readers who aren't familiar with endometriosis: Endo occurs in some women after endometrial tissue from the uterus migrates through the fallopian tubes and out into the abdomen during menstruation. All women experience this retrograde menstruation, most without ill effects. In women with endo, for some unknown reason, the tissue attaches to the outsides of organs in the pelvic cavity. Resulting symptoms include pain during menstruation, sex, and bowel movements.
The first time I heard about endometriosis, I was a high schooler working at a natural foods store. My coworker told me she had it and I felt a twinge of panic as she described her symptoms. They sounded so similar to mine, but I was a little comforted that hers sounded worse. Her pain was debilitating throughout the month, whereas mine was "only" debilitating during my period. Sure, I couldn't sleep or move when it was bad, but that was normal, right? My aunt used to experience pain so bad she vomited and I hadn't vomited yet. That became my benchmark for how much pain was too much. Not puking? Suck it up! Furthermore, after I found out that endo ran in families, it was comforting to know that my aunt had never been diagnosed with it.
The worst pain in high school always happened late at night. To attempt to fall back asleep or think about something other than the excruciating pain, I'd listen to a cassette tape of U2's The Joshua Tree. If I didn't fall back into a heavy sleep before the tape ended, the loud click when it reached the end would jar me out of any dozing state I'd managed to achieve. Particularly bad nights were when side 1 didn't put me into a sound sleep and I had to get out of bed to switch to side 2. Standing up was guaranteed to make the cramps worse, not to mention that the music on side 2 was inferior. (Why did it never occur to me to move the boom box closer to my bed? Another smart move would have been to graduate to a CD to save myself from those awful clicks.)
My cramps decreased when I was very physically active. During the school year in high school, they were manageable when I was dancing all the time. Summertime brought less physical activity and family vacations when my period would inevitably hit. Cramps hit me hard at the beach, the mountains, and a summer afternoon in New Orleans when I had to curl up on a bench in a museum.
In addition to exercise, going on the Pill in my 20's alleviated my cramping somewhat. However, I didn't fully understand that it was helping at the time and found the side effects troublesome. In my late 20's, I stopped taking it. I was a vegetarian with vegan leanings who'd worked in a natural foods store, so eschewing medications wasn't out of character.
Even when my symptoms weren't intolerable (ie, rendering me unable to move and wanting to die), they were disruptive. High levels of physical activity ceased to help and periods dictated my training schedule for half marathons. Ready access to tampons or The Keeper wasn't enough to keep me exercising on my heaviest days. If I dared to run even a short 3-4 miles, cramps would inevitably paralyze me halfway through. I would limp my way home, doubled over and feeling foolish for daring to run on a heavy day.
In my 20's and early 30's, I described the pain to each gynecologist and nurse practitioner I saw for annual exams. Their response was always the same: take ibuprofen or naproxen and use a heating pad. Their implicit suggestion was to suck it up. Massive doses of ibuprofen took the pain from a 10 to an 8 and I was still incapacitated. NSAIDs also gave me horrible heartburn as I got older. As for the heating pad idea, well, my cramps laughed at them. After I stopped taking the Pill, doctors suggested I get back on it to ease my cramps. I had decided I was a Natural Woman, though, medication-free and indulging my OCD tendencies by charting my temperature every day. I wasn't fully convinced at that point that the Pill helped my cramps, anyway.
Doctors never mentioned endo and I got used to the standard "800 milligrams of ibuprofen" suggestion. Although I knew a little about endo and thought I might have it, I trusted my doctors to let me know if further action was needed. Finally, after we had trouble conceiving last year, a doctor suggested a laparoscopy to look for endo. Years of telling doctors about pain before we started trying hadn't prompted any discussions of surgery or prescription pain relievers. Although they had offered the Pill with the ostensible purpose of decreasing cramps, they failed to mention that the Pill could quiet down a disease that most likely compromised my fertility.
It's obvious that I wasn't assertive enough. I'm not usually shy about telling doctors what's going on with my body, but it seemed almost shameful to complain about cramps. Didn't every woman have them to some extent? The "it's not bad 'til you puke" mentality had stuck with me. Having pain that made me nauseated and wanting to puke wasn't enough. Instead of inwardly rolling my eyes at the heating pad and ibuprofen suggestions, I should have described exactly how much pain I was having. Instead, I missed work every month and ignored a disease that was probably impacting my fertility.
Dr. Google is a blessing and a curse (hello, paranoia), but I hope young women today use its power for good. Maybe instead of living in denial like I did, they'll google "endometriosis" and insist on getting checked out.
A quick side note for readers who aren't familiar with endometriosis: Endo occurs in some women after endometrial tissue from the uterus migrates through the fallopian tubes and out into the abdomen during menstruation. All women experience this retrograde menstruation, most without ill effects. In women with endo, for some unknown reason, the tissue attaches to the outsides of organs in the pelvic cavity. Resulting symptoms include pain during menstruation, sex, and bowel movements.
The first time I heard about endometriosis, I was a high schooler working at a natural foods store. My coworker told me she had it and I felt a twinge of panic as she described her symptoms. They sounded so similar to mine, but I was a little comforted that hers sounded worse. Her pain was debilitating throughout the month, whereas mine was "only" debilitating during my period. Sure, I couldn't sleep or move when it was bad, but that was normal, right? My aunt used to experience pain so bad she vomited and I hadn't vomited yet. That became my benchmark for how much pain was too much. Not puking? Suck it up! Furthermore, after I found out that endo ran in families, it was comforting to know that my aunt had never been diagnosed with it.
The worst pain in high school always happened late at night. To attempt to fall back asleep or think about something other than the excruciating pain, I'd listen to a cassette tape of U2's The Joshua Tree. If I didn't fall back into a heavy sleep before the tape ended, the loud click when it reached the end would jar me out of any dozing state I'd managed to achieve. Particularly bad nights were when side 1 didn't put me into a sound sleep and I had to get out of bed to switch to side 2. Standing up was guaranteed to make the cramps worse, not to mention that the music on side 2 was inferior. (Why did it never occur to me to move the boom box closer to my bed? Another smart move would have been to graduate to a CD to save myself from those awful clicks.)
My cramps decreased when I was very physically active. During the school year in high school, they were manageable when I was dancing all the time. Summertime brought less physical activity and family vacations when my period would inevitably hit. Cramps hit me hard at the beach, the mountains, and a summer afternoon in New Orleans when I had to curl up on a bench in a museum.
In addition to exercise, going on the Pill in my 20's alleviated my cramping somewhat. However, I didn't fully understand that it was helping at the time and found the side effects troublesome. In my late 20's, I stopped taking it. I was a vegetarian with vegan leanings who'd worked in a natural foods store, so eschewing medications wasn't out of character.
Even when my symptoms weren't intolerable (ie, rendering me unable to move and wanting to die), they were disruptive. High levels of physical activity ceased to help and periods dictated my training schedule for half marathons. Ready access to tampons or The Keeper wasn't enough to keep me exercising on my heaviest days. If I dared to run even a short 3-4 miles, cramps would inevitably paralyze me halfway through. I would limp my way home, doubled over and feeling foolish for daring to run on a heavy day.
In my 20's and early 30's, I described the pain to each gynecologist and nurse practitioner I saw for annual exams. Their response was always the same: take ibuprofen or naproxen and use a heating pad. Their implicit suggestion was to suck it up. Massive doses of ibuprofen took the pain from a 10 to an 8 and I was still incapacitated. NSAIDs also gave me horrible heartburn as I got older. As for the heating pad idea, well, my cramps laughed at them. After I stopped taking the Pill, doctors suggested I get back on it to ease my cramps. I had decided I was a Natural Woman, though, medication-free and indulging my OCD tendencies by charting my temperature every day. I wasn't fully convinced at that point that the Pill helped my cramps, anyway.
Doctors never mentioned endo and I got used to the standard "800 milligrams of ibuprofen" suggestion. Although I knew a little about endo and thought I might have it, I trusted my doctors to let me know if further action was needed. Finally, after we had trouble conceiving last year, a doctor suggested a laparoscopy to look for endo. Years of telling doctors about pain before we started trying hadn't prompted any discussions of surgery or prescription pain relievers. Although they had offered the Pill with the ostensible purpose of decreasing cramps, they failed to mention that the Pill could quiet down a disease that most likely compromised my fertility.
It's obvious that I wasn't assertive enough. I'm not usually shy about telling doctors what's going on with my body, but it seemed almost shameful to complain about cramps. Didn't every woman have them to some extent? The "it's not bad 'til you puke" mentality had stuck with me. Having pain that made me nauseated and wanting to puke wasn't enough. Instead of inwardly rolling my eyes at the heating pad and ibuprofen suggestions, I should have described exactly how much pain I was having. Instead, I missed work every month and ignored a disease that was probably impacting my fertility.
Dr. Google is a blessing and a curse (hello, paranoia), but I hope young women today use its power for good. Maybe instead of living in denial like I did, they'll google "endometriosis" and insist on getting checked out.
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