Post-Op: Ain't nobody got time fo' that!

A letter to my Lady Parts: Part II

We did it, Pam. We got through surgery. We found out that, within a year's time, our endometriosis goblins had grown back. And like a super hero, Dr. H and his handy little robot removed the nasty growth around our right ovary, fallopian tube and some crap growing in our posterior cul-de-sac near our poop chute. The success of surgery? Aces.

But do you feel okay? Because--let me be honest--I feel like shit. It's been taking a long time to heal, too. I shuffle, scoot and hobble around my house like an old lady. In fact, I've been day-dreaming about a walker. At least a bedazzled walker. All white rhinestones, of course.
Is this bad?

I have sharp pains in my right side, still. It's been hard to keep normal working hours (which is unbelievably frustrating), and so I've been at the mercy of my body. At the mercy of you, come to think of it. (Dammit, Pam!) I mean--it's not like it's your fault or anything, so please know that I ain't mad atcha. But if you're curious, when I need to go #1 or #2, I feel the wretched pressure of pain and cramping that would better off suit someone whom I disliked. Unlike most people, I would wish this pain on my worst enemy--because it goes away eventually, at least. I don't want to the world to think I'm a horrible person or anything, but now that I'm thinking about ways of torture...

Back to the point: We had Stage II endometriosis this time. Not as bad as last year, but think about it--that was ONE YEAR AGO! A whole lotta crap grew back in record time, and I think we did everything we could have done to prevent it. Like the Mirena IUD. By the way, I've been meaning to ask you: How do you feel about this? I mean, I think you're having cramps because of Ms. Mirena, but I haven't had the time to ask. If you think about it, let me know. I've been bringing my heating pad to work lately just in case. In fact, it feels rather nice as I write this right now, doesn't it?

Secondly, I met with Martha yesterday--our Physician's Assistant who is balls in my opinion. (Oh yes, sorry Pam, I'm using masculine terms of endearment, but "balls" means "tits" and "tits" also means "awesome." So Martha, in other words, is awesome.) She explained that Dr. H did a lot of work on our right side--like, a LOT of pipe cleaning. She showed me the pictures of our ovaries and fallopian tubes on the right. Of course, I didn't know what the hell we were looking at, but being the nerd that I am, I insisted on seeing visual evidence of the growth that was making us so sick we've lost almost 12-15 lbs in the last 2 months. Lemme tell ya--it was gross. Our right ovary was literally stuck to some other muscle wall--they call that an "adhesion." And there was a white, bumpy layer of gunk surrounding everything. Like I said, though, Dr. H licked it out of there. (No, not literally licked! C'mon, Pamela. Head out of the gutter, please. This is a serious conversation.) Either way, after removing all of the crap on our right side, it turns out the left side was virtually clean from any signs of endo. High-Five! (Or is it "High Uterus?") I don't know how you do things down there--it's not like you have hands or anything, but if you had an appendage to slap, would that be an ovary?

You should also know that there was a mass of growth in the posterior cul-de-sac. I think they also call it the "Pouch of Douglas" or something. So much for a pouch. If I had a pouch in my abdomen, I'd at least want Tory Burch to design it. Or Marc Jacobs. It would be sparkly and fun--possibly purple or cobalt blue. Yes, a cobalt blue P of D with crystal embellishment. Tasteful embellishment. Not like "My Big Fat Gypsy Wedding" or anything. In the meantime,
the lessons that we should share with our Endo Sisters in pain are:
Eat a soft diet with little meat while you heal.
Drink tea--without caffeine--preferably fresh herbs in hot water (a combination of: mint, rosemary, lavendar, oregano, basil, thyme) Some of these fresh herbs have anti-inflammatory powers. Also it helps you stay hydrated.
Make yourself a "nest." In other words, make a comfy place where you can lie down with your torso lifted up slightly and a pillow under your legs to help the gas flow towards your bum. As in: help yourself fart. You will feel MUCH better!
Gas-X RULEZZZZ.
Take Colace.
Drink plenty of fluids--not sugary shit, but water, tea, whatever. Fruit juice is okay in moderation to get some calories while you heal. A gingerale is nice every now and then, but I am wary to drink carbonated beverages while dealing with internal gas problems.
The "gas pain" is probably the worst part. Something I wouldn't wish on my worst enemy, in fact.
Get a neck/shoulder massage--preferably someone who can come to your house and massage your neck muscles while you lie, face up, somewhere dark, warm and cozy. Hopefully they won't try to get fresh.
Have people "on call" to take care of you. Trust me: you will need them.
Be open and honest with yourself. And your boss. No explanation needed, I hope. You are NOT Superwoman. Although I know you try...
Call your doctor. If anything seems awry. If you're spotting--bright red, heavily, whatever. If you have unusual pain. If, like me, you find yourself with a knock-down drag-out cold in the middle of healing. Your doctor's office will advise you what to do both homeopathically and if you can take additional medication.
It gets better. It's cliche. But it's also quite true.

So that's our story: We weren't crazy after all! Again. Be wary for now, my friend, but heal fast and let me know if I'm doing too much around here. I'm trying to take it easy, but as it turns out, there's only so much Lifetime Movie Network I can watch and the latest fantasy-romance novel I picked up has sucked me deep into a fictional portrayal of 18th century Scotland. I think you would like it, but it's already made me cry. More than once. And with our weakened, healing abdominal muscles, all I can say is: Ain't nobody got time fo' that!

What we do have time for is knowing that we have time to wait for babies. The baby factory has vacancy, but is currently not open for business. As long as you're okay with that, so am I. Be in touch, Pam.

Love,
Your Endo Sister

Dear Pamela Beard: A letter to my lady parts

Just to avoid any confusion, "Pamela Beard" is my nickname for my uterus. I mean, guys name their man parts, right? Anyways...

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Dear Pamela,

Hey girl. How are you? Just from how you've been acting around me lately, I'm gonna go ahead and imagine that you'll tell me things are "fine." But when you say "fine," I know that you mean things are not fine. I know you're not doing so well right now. It's okay to be honest. In fact, it's why I'm writing you.

Pam, I'm scared. I'm scared for you. I'm scared for us. I'm afraid that because we've both been sick lately, we'll find ourselves in a most precarious position. And by "precarious" I mean infertile. YES, I KNOW we've talked about this before, and you tell me not to worry! You tell me: "You can achieve your professional dreams and wait to have babies. You don't have to hinge your femininity upon your ability to procreate. If your fallopian tubes are too scarred in three years, you can always look at adoption. The world doesn't have to end here." But Pam, I'm worried. I'm worried that, while I obviously have dreams to become Dr. Knouse someday, I'm going to look back upon my life and ask "what if?" What if I wouldn't have waited to have babies? What if I wouldn't have had that abortion in college? What if I just said Fuck it and decided to take my Nuva Ring out tomorrow? Am I allowed to dream of having both titles of "Dr." and "Mom?" Or must I choose only one option.

Am I being an asshole by thinking I have the right to choose to gamble with my fertility? I know women who are struggling with becoming pregnant. I know amazing couples who want nothing more than to be parents, but still have challenges conceiving both with and without medical intervention. When issues like this arise, I think to myself: Am I wasting away my precious fertile years? Am I an asshole?

Pam, we're getting surgery soon. Perhaps within the next 2 weeks so that we can recover before our students come back for the fall semester. We're getting surgery--only 1 inscision this time!--and Dr. H says he'll check on the status of your health, our ovaries, and fallopian tubes. I was sure to express my concerns to Dr. H about fertility since you, me and the hubby will be thinking about this in the next two years, possibly three. I say "my concerns" because I know you're a lady of leisure; you've told me before that you don't mind not having a job and that baby-making is my decision, not yours. I appreciate your laid-back approach to this situation. It keeps me balanced, I think.
I should also tell you that we're getting the Mirena IUD, so be prepared to have a roommate for a while. I know you prefer to live alone, and have managed to successfully reside as neighbors to my Nuva Ring for the last year and a half. The Mirena will prevent pregnancy for up to three years, so you'll be living together for a while. But hey, "Mirena" seems like a nice name. I hope you gals can become great friends!
I have to mention this--just so you're aware--that if Dr. H looks up inside of us and thinks that we look like a "mess," then he'll let us know that we should think about family planning sooner than later. Your "lady of leisure" days will be numbered. I just thought I'd give you a heads-up about that--you know--because we're besties.

Oh, Pamela. I'm scared. What if it is a mess in there? Or what if nothing is wrong? Then what? Am I crazy? Is the ridiculous pain, nausea, bloating, fatigue and discomfort all just in my head? I hate that I have to ask these questions, but I do. After all the shit I went through last year, I still question myself constantly. I know this isn't healthy, but what else can I do? I had doctor after doctor tell me that I had "nerve entrapment," or a "bad back," or "Irritable Bowel Syndrome." That "we'll treat you for endometriosis," but at the end of the day no one really knew what was wrong with me. Then we met Dr. H. I know this might sound silly, but I don't want to let him down; I want to get better, but I also want him to find endometriosis in this surgery. I don't want him, the best doctor I've ever come to know, to think I'm crazy, too.

By the way, I hope that (between you and me) this next surgery works. I'm so incredibly tired of being in pain. I'm tired of looking at my "Leave Balance" at work and fretting that I don't have enough time to take-off to have surgery. I hate that I might miss out on this up-coming conference because, well, what if my surgery falls upon the date of the conference? Sure, I can probably get a refund. I can re-book my flight. I can look for other professional development opportunities out there. In the big picture, it's not that big of a deal. But if I want to be honest, I'm sick of being scared to make plans. Again. This was the life I lead last year--it's not supposed to happen again. This year.

Pamela, if you don't know this already, I should tell you that endometriosis never truly goes away. There is no cure. Research suggests that pregnancy may have a greater chance of lessening growth, and only in some cases, it may not return after a woman is pregnant. But not all endometrial cells are created equally. Like cancer, endometriosis cells can regenerate "mildly, moderately or aggressively." Thus, even if we did get pregnant, there are no guarantees that this will stop our pain. We might have to get a hysterectomy some day. Possibly in our 30s if we do have babies within the next 5 years. (I know you don't want to think about it! It would mean we'd be breaking up for good--for life. Don't worry; it's not a decision that I'll make lightly, and I'll be sure to consult with you first.) It's not something to dwell on, but it's something to think about. I mean, the more I talk about this to women, the more I find that so many women have had a hysterectomy or some form of laparoscopic excision/surgery. It's nuts! On the surface, I feel so alone, but once you begin to dig a little deeper--once you begin to peel away the shame of having "lady part problems"--I find that I'm not so alone. There are many women out there in our situation. We have to remember that. Always.

I know you may not be able to write back right away, but if you can, please tell me that I'm not crazy. Please tell me that I'm not an asshole. Please tell me that I need to relax and wait until our surgery is complete so we know our next step. Please tell me that I am lucky to have support systems--husband, family and friends--who support me and want me to recover, to be "okay." Please tell me that sometimes the greatest thing we can do as humans is to "let go" to the feeling that we have to maintain control over everything in our lives. Please tell me to let go. To have hope. To understand the meaning of grace. And in the meantime, to get some damn sleep.

Thanks for listening, Pamela.

Your friend,
Jessica

Emergency.

To be clear: I hate the Emergency Room. I hate the feeling of helplessness that permeates the space between myself and the standard changing room curtain. I hate the chill of sterility. I hate being prodded by med students (sorry to my cousin Caiti who is currently in med school!). I hate repeating myself over and over and over again. I hate feeling like someone is going to walk into my room at any minute and tell me that I'm crazy for being there. That because I'm not dying, I should stop taking up bed space and go the hell home.

But as much as I hate the Emergency Room, I sometimes find myself there. Two weeks ago, I found myself in the Hershey ER with severe abdominal pain and a sense that if I strained my bowels or my bladder, organs would start to fall out of me. It was bad.

To keep my story short and sweet, I was doped-up on Dilaudid and still in crazy pain. It felt like both ovaries were burning and the stabbing, throbbing pain crept all the way from my belly into my upper thighs and down my legs. I had only ever experienced pain like this a few times before; it felt like I had an ovarian cyst. A few hours after being heavily medicated, I finally had a transvaginal ultrasound. The results? Nothing. Well, nothing remarkable.

Because I'm super nosy, I always ask the technicians what they see on the monitors. I mean, if someone is sticking a big ole plastic wand up into my vag, I wanna know what's going on in there! Even so, the "charm-free" technician acted like I was a nuisance and said: "It looks like you had a large follicle on the right side that is folded in on itself."
I think: "Oh, could it have been a cyst?"
She says, nonplused, "No. It's normal."

Great. So I'm in the ER for no reason? No Jessica, don't start thinking you're crazy again. (This is what I have to keep telling myself.) Meanwhile, back in my chilly "holding cell" the doctor returns to tell me that it very well could be endometriosis flaring up again.
Great...

I'm writing this blog today not to claim my return into a "decline" of health. Rather, I'm writing this because I wanted to point out two things. First, I'm pretty sure my endo is flaring up again. I'm pretty sure that it's because I'm majorly stressed out. I'm pretty sure that when I'm done with this semester, I'll probably start to feel significantly better. Secondly, I freaked out. My doped-up ass starting bawling at the thought that my endo was back. (It never truly goes away--duh!) I started freaking out, thinking: "I'm gonna have to go back on Lupron! I'm gonna have to have surgery again!"

Ladies, I ask you: Have you ever felt like this? Say, after having surgery, after keeping things under control, have you ever freaked out because you thought your body was in severe decline, worrying that you were starting all over again with treatment?

I hope the answer is yes. But I commend you if your answer is no.

Ladies, I tell you this: Stay positive. Honest to goodness, keeping a positive attitude over the last few months as I started to feel pain creeping into my abdomen again, has been the only thing that's kept me afloat. I write this to you after finding myself in the ER again, thinking for a brief (and drugged) moment that I was a helpless victim of my body. After sobering up--and vomiting the whole way home from the drugs (always ask for Zofran before you leave the ER if you've been given pain meds)--I realized that I was going to be OK.

I think back to myself a year ago. I virtually let endometriosis rule my life. It was a horrible experience, and I thought often about killing myself because I had been in so much pain without relief or a diagnosis. (There, I admitted it--FINALLY.) But now, even after having found myself in dire straights, I can tell you that I'm FINE. I'm ok. I'm gonna make it. I'm not depressed any more. I'm well on my journey to discover who I am. Recently, the President of the College (I work at a college) commended me on my professional success and mentioned that the "little girl-ness" inside of me had finally matured into a professional example of leadership. WOW. I'm paraphrasing, but the point is this: NEVER GIVE UP HOPE. Even when you find yourself in familiar territory like the ER. Even when you have submitted your body to scrutiny again. Even when you're pretty sure you're going backwards rather than forwards, NEVER GIVE UP. You'll be ok!

In the meantime, do whatever you have to do to stay positive. Talk to your loved ones about your fears. Talk to your doctor about your concerns. Go for a walk. Sleep late. Read a trashy romance novel. Reach out to anyone whom you know has experienced endometriosis or cysts. Comment on this post! If anything, send your cosmic question into the universe through virtual networks. There there are always resources that can help. I recommend the Facebook Page for the Endo Research Center: https://www.facebook.com/EndoResCenter

After I graduate, I hope to help establish a Central Pennsylvania Endo support group. If you know of any resources, feel free to share! If you live in south-central PA, feel free to reach out! jknouse05@gmail.com

Always remember: you are not alone. Don't give up hope.

My loving, supportive husband, Justin, has been an important part of my recovery. This is a picture of us (making plans and having fun!) at a Penguins game in Feb 2013. Go Pens!

Getting to Zero: Thoughts on Recovery

"To let go is to admit powerlessness. Which means: the outcome is not in my hands."

 

 

I am not a god. Or goddess. I cannot see into the future or predict Michelle Obama's next fabulous outfit. But sometimes--in the dark, secret moments of night--I wish so badly that I could see into the future. Into the infinite possibility of tomorrow.

Because then, maybe I could figure out how to be an endometriosis success. Maybe with this knowledge, I could help myself get out of the negative cycle of feeling good/feeling bad/feeling better/feeling worse. Maybe I might know how to recover.

 

Recovery. There's a tricky thing to say. I once wrote a short story about recovery post surgery:

"If only I could recover here. Recovery. Recover. Re-cover. To find something I have lost. Overy. Over. . . I split word and morpheme to make meaning, my own. Recovery: to choose sorrow or separate yourself from it."

 

For a few months after surgery, I found myself in a precarious position. I was not sick. I was not in pain. I wasn't overly tired or consumed by overwhelming nausea. I was...okay. After living for almost eight months of feeling like I had a knife stuck in my uterus, I finally found myself opening up, body and mind, to the single, perfect feeling of "relief." I was recovering. What we don't tell ourselves after we begin a regimen of health consciousness is that we'll someday feel better. And when we do feel better, it's like the world has been reopened to us, blooming in full like apple blossoms in springtime. 
So here is my question: Why did I feel so depressed after recovering? Why did I choose not to separate myself from the sorrow of feeling victim to my own body? Here's why: When you recover, your life changes again. You begin to feel like the need to be a social hermit is minimized. You begin to realize that you can make dinner plans. That you can stomach dessert. That you can have fun and live your life again. AGAIN. Meaning: you have to introduce yourself to this "new" person--this new you--who is learning how to reorient and renegotiate social boundaries all. Over. Again. And it's hard!

 

Not to "boo hoo," of course, but I feel like getting back to Zero has been a rough road. I say "zero," meaning that when I feel at Zero, I am at a zero on the pain scale. You know, the scale that literally ruled my existence for the better part of a year. It's tough to reside in a place of neutrality when you are so accustomed to the disease and anxiety of your social scale. Being ready to not make plans is a function of stability for a sick person. It's a function of control over a body that is seemingly control-less. Not knowing what to expect becomes a (albeit paradoxical) routine, and feeling like the pain always binds you to the uncertainty of making important life decisions becomes a force of corporeal habitude. In other words: being "above zero" was difficult, but over time it becomes part of your routine. And you adjust to the phenomenology of your body to make illness your 'norm.'

 

And this is where I suggest, too, that being "less than zero" indicates that I have felt--I can't believe I'm about to say this--a mourning for the illness that, for a time, controlled my life. It's so strange to feel a certain sorrow or sadness for feeling sick, but eventually "being sick" becomes part of your identity. You learn how to be sick because being healthy isn't an option.You begin to view yourself as a sick person rather than seeing the possibilities for yourself as a patient in recovery.

 

I also want to be clear and mention that, while I was in recovery for a few months, I have recently noticed some "bad" changes. I feel as though I may be headed in the wrong direction. As of the last few weeks, I have started feeling...weird...sick, maybe...again. I've started having bouts of nausea and migraines. I've had a few intermittent experiences of brief--but unbelievable--abdominal pain characteristic to the pain I had felt before. I start to wonder: "Okay, am I regressing and going back to feeling like poop?" To confess, a part of me is almost relieved to feel sick again. A part of me thinks: "At least I know how to function when I'm sick; at least I know what it's like to withdraw from the world."

 

I write things like this, and then I shake my head--I know that I don't want to be sick! I look at pictures of me from 2009, 2010 and 2011 until I had my hormone therapy. I had so much fun, I looked so healthy, I loved life! I don't want to go back to being a shell of my old self. No, sir. I do not.

 

So I have to keep thinking positively, yet realistically. Like my initial quote suggests, I cannot control my body; I am (ultimately) powerless to control every facet of its biological function. All the while, there are some things I can do to help myself stay less symptomatic than I was a year ago. Like eat gluten-free/Paleo diet. Or exercise. And meditate. Do yoga. Go to parties. Have parties. Brew beer (but don't drink it...no...don't drink too much of it!). There are positive ways to help myself get out of this funk and get back to zero! I just have to remember that.

 

Just to keep it real--not necessarily to end of a negative note--I do still wonder about some things:

Question:
I'm worried that my endo will come back. Full force. Worse than before. I'm worried that when it does come back (ok: IF it comes back), I'll feel too defeated to want to do anything about it.

Answer:
I know in my bones--also rationally--that I will totally be proactive about treatment. But...if I'm not living up to my own expectations of health (by eating right 90% of the time), how do I stay accountable to myself without a proper network of support? Maybe there are some answers here that can be explored by getting myself involved in more reading, research and outreach.

 

Question:
What if I want (the pain) to come back? What if I liked some of the attention I got from feeling sick? What if I got comfortable being sick and don't want to really change?

Answer:

I know that this thought comes from a place of apparent uncertainty. Again, I'm keeping it real, people. I admit that I did become rather accustomed to feeling sick, and I did learn to cope with the pain, the nausea, the constipation and peeing all the time (luckily not in my pants). But I only worry that feeling depressed from learning to be "me" again is probably more of a natural reaction than I have previously considered. Perhaps I still have to give myself some time to settle-in to my "new" self. Perhaps I need to learn how to forgive myself for not being the fit, healthy, runner self I was a few years ago.

 

Question:
On that note, I am not really the same person I was a year ago. What if I'm okay with being more introspective and introverted? What if I'm just not ready to run a half marathon again? How can I be "me" again if I'm not really sure who "me" is right now?

Answer: First of all, I'm not the same person I was a year ago. And I mean that more than just on a cursory level. I mean it: my priorities are not the same as they were before. I don't put friends and experiences so high on the prioty list. I'm concentrating on finishing graduate school and my profession. I have to be more introverted to survive my present goals. I have to be more serious about my priorities if I'm trying to advance myself professionally. And, NO: I'm not the same Jess I used to be. I don't party as much. I can't really drink beer. I don't go out as much, and I'm not into smelling like a smoke stack when I get home. Honestly, maybe this experience of illness was a positive thing because I learned how to be "on my own" rather than depending on my social network to energize my batteries. But to be fair to the "old" me, I do miss being social. I miss some of the friendships that I had cultivated, and I see that being introverted really does hurt the stamina of your social relationships. To that end, I'm honest when I say that I'm not sure who "me" is right now. But I'm interested in finding out who that person is --not for the sake of the future or for the legacy of the past. Rather: for today.

 



Triggers

For almost a year, you suffer from chronic pain. And then you have surgery. You heal. You feel better. You aren’t in pain every day. So…what now?

It might seem like a strange question to ask: what do after the pain subsides, the constant nausea goes away and you don’t wake up 6 times to pee in a night? About three months after surgery, I realized that my life had significantly changed—again. This time, however, the change was for the better. But I had to transition into a healing phase, and that was also somewhat challenging. For example, over quite a few months, I had all but isolated myself from socializing outside of my nuclear family or work. I have to admit that it was kind of weird to start making social plans again, to have an alcoholic beverage or stay up later than 10 p.m.! I thought: “Shit, I wasn’t just sick. I’ve aged about 10 years!” While I was elated to be able to have more flexibility in my life, more mobility, my body had to adjust to being active again. This, however, is a great problem to have.

I still wonder, too, if my pain will return. Most recently, after months of feeling pretty great, I had forgotten to change over my Nuva Ring. Without getting into too many details, I began menstruating again—something my doctor recommended that I try my best to avoid. I thought: Oh well. No big deal.  I mean, I’d felt great for so long that I’d forgotten what it meant to have abdominal pain.

Big mistake. Almost immediately, the pain returned. I caught myself clutching my lower abdomen again—a habit I had acquired pre-surgery. It. Fucking. Hurt. Suddenly the fear had returned: What if I need to go to the Emergency Room! I don’t want to see that bitchy nurse! Yes, these are the exact concerns that ran through my head. They’re gonna think I’m crazy again! No—you’re not crazy. You’re just lazy.

Luckily, this bout of pain only lasted a few days. At some points—mainly when I was stressing out—I felt the sudden, sharp pangs shoot through my insides. And then there were moments after I’d eaten something I shouldn’t eat (like Wege Party Sticks—like nectar of the gods), I’d start to get the creeping, burning sensation in my lower abdomen. And finally, I noticed that my bathroom habits were way off. Cue the small bladder syndrome. Cue the need for Miralax in my life.

Over the past few months, I’ve been trying to pay attention to my “triggers.” Your triggers are things that do two, basic things: 1) facilitate inflammation and 2) activate pain. This is why it’s very important not only to follow the habitude of constant and consistent birth control, but also to forego certain foods or beverages. Your doctor should be recommending that you take birth control without skipping the week or taking the placebo pills—just go right into the next packet. Or, like me, change Nuva Rings after 3-4 weeks before menstruation. I didn’t know that being amenorrheic was such a crucial part of decreasing the likelihood of endometrial tissue growth. Basically, amenorrhea prevents uterine lining from shedding, re-growing, and shedding again. The growth cycle is stunted, thus, less chances that the endometrial tissue is growing in the abdominal cavity. Additionally, menorrhea causes the lower abdominal cavity to become inflamed. So whatever is growing in there that shouldn’t be will also cause pain and discomfort in your abdomen, as well as interrupt your normal bowel or urinary functions. Again, to echo Dr. Harkins, “it’s all connected.”

For women who are thinking about looking into the “endo diet,” which, I’ve found, is basically like eating a gluten-free diet which also limits fried foods and cheese (foods with high fat content), I strongly recommend trying it out. I admit that I don’t follow it to a “T.” I have drastically limited my intake of grains, mainly processed grains like white bread and pastas. Sure there are times when I indulge—I’m human! But knowing what I should eat helps me understand my body’s reaction to when I eat what I shouldn’t eat. In other words, if I make a solid effort to eat only the foods which I know will help decrease inflammation (like leafy greens, melon, or anti-oxidant rich berries and other fresh foods), I can actually feel the difference. So when I make a choice to eat that slice of cake or munch on those ever-so-delicious pretzel sticks, I can actually feel my body reacting (negatively) to these foods. I feel a twinge of pain in my side. I sense a bit of nausea. Almost like my body is rejecting those foods! *Shakes her head* Of course, that doesn’t prevent me from resisting desserts. Or Wege Party Sticks. So instead of denying myself foods that I love, I simply limit my intake.

In addition to certain foods, I’ve noticed that alcohol induces pain—especially beer. I know! No beer?! Yes, folks. I have pretty much given up beer. And I’m actually ok with it. I guess after you give up a certain beverage for a while, it’s not so bad. Also, I can’t really hold my liquor any more (another reason why it’s challenging to socialize with folks my age because we want to meet up in bars “for a drink!”), so I’ve found myself drinking much less.

Finally, I will simply say that if you feel as though you might be suffering the pains of endometriosis or have already been diagnosed, lifestyle changes are inevitable. Changing your diet is effective, as well as hormone therapy. While not everyone’s body is the same, sometimes it helps to know that small remedies make a big difference no matter who you are.

I heart percocet.

Oh yes I did.

I did say it: I love Percocet.

But before visions of Lindsay Lohan in rehab start swirling in your head, please let me explain why I heart this controversial, potentially-addictive, prescription pain medication.

I’ve been so excited to write this post. Partly because it’s controversial and partly because I’m mad. I’m mad because people like myself who suffer from chronic pain from legitimate health conditions are constantly treated like drug addicts. You see, here’s how I explain my experience with chronic pain:

First, it can be debilitating to the point where you can’t focus, can’t do your job, can’t function at all like a normal human being. And secondly, often times the onset of more moderate pain only leads to more severe pain. Which makes people like myself freak out when we start feeling those sharp pangs of pain; automatically I start worrying that I’ll end up in the ER later. If I am fortunate enough to have a prescription on-hand and if I’ve tried every other  OTC drug I can think of, then I take a pill. A (singular) pill. And typically, if the pain is bad enough, Percocet allows for me to be able to function, to re-join society. I liken it to feeling like negative 10 (-10). I liken the “high” like going for the positive 10 (+10) effect, which is not what I’m trying to achieve. Taking a pill when I’m in so much pain brings me back to zero, to a neutral position. The goal, for me, is not to take it for the high, but to take it for relief. To get back to neutrality. To function.

Which is why I love prescriptions of Percocet; they help me regulate severe (note: I did not say mild or moderate pain) bouts of pain that I cannot control by other means of prescription medication or pain management skills. The down side is, we’re told every day that opiates cause addiction. That I will become addicted to taking Percocet and I’m not to be trusted to take the drug responsibly. That I'm a social deviant because I know that percocet works for me, and I ask for it. Also, I'm allergic to Hydrocodone (Vidcodin), so I often times have to skip levels of pain medication and go right for the big Kahuna--my beloved Perkies. When I do this, I am often met with looks of disbelief and automatic questioning: "What do you mean you're allergic? What happens to you when you take Vicodin?" It makes me feel worse. And Percocet makes me feel better.

Please note that I completely understand why it's important to be wary of opiates. I’ve had family members and friends who have struggled with addition to prescription pain killers, and IT'S NO JOKE.  It’s a serious problem. You can lose your job. Lose your home. Lose custody of your children. Take your own life. The dark side of pain killers, when abused, can cause various health issues and, in some cases, can actually incite chronic pain which is why many doctors are hesitant to prescribe pain medication specifically for patients who exhibit only symptoms of chronic pain with no acute signs of disease. I, too, agree with medical practitioners who believe it best to treat chronic pain with non-addictive pain medications and ONLY using Percocet when all other options have been exhausted.

But we’re not all addicts. No. We're not. All. Addicts.

I love Percocet because it helps me come out of a pain coma. I love Percocet because it's cheaper to take one pill than to pay a $100 co-pay at the hospital. I love Percocet because I don’t like the side effects when it does make me feel a little loopy. (I prefer to be lucid, sharp, engaged.)

On a side note, I am addicted to Honey Nut Cheerios, carbonated water, and Dunkin Donuts coffee.

After almost a year of being prescribed this medication on-and-off, I’ve been able to regulate the exact dosage, take it only when needed, and resist taking it when I don’t need it. Currently my Dr. and I found that if I take Tramadol HCL (50 mg) for break-through pain 1x/day with 2 Aleve, this regimen works like a charm. But the dark underbelly of this story is the fact that I did often need to take Percocet for a prolonged period of time due to chronic pain and a large ovarian cyst. And when you have chronic pain like this, you begin to feel like you want to crawl out of your skin. It’s horrible! A lot of times it hurt so bad, I could hardly breathe. It hurt to breathe! And the part that I don't want to admit is that I did undergo the side effects of withdrawal when the bouts of pain subsided. But I didn't ask for more meds when I didn't need them. I didn't say "yes" when my Dr. offered to write me a refill.

Does having side effects after medicating myself for a month make me an addict? Does this make me a deviant because I stopped taking meds because my pain went away and I, in turn, came down with a terrible migraine and nausea? Was the headache and nausea from the endometriosis? I will never know.


But what I do know is that pain medication helped me. It helped me regain some control over my body which had been besieged by a disease that I could not control.

And for that, I love Percocet. Today, tomorrow, and forever.

Lost and Found: An Update

It's amazing that I suffered for so long not knowing, exactly, what was wrong with my body. It's equally amazing that in a few, short months I found a new physician, had surgery, had a definitive diagnosis, a laparoscopy, excision, and post-op counseling offering me a holistic view of the body as it heals from endometriosis.

To give an update (a happy update!), on August 2nd, I underwent a successful laparoscopy procedure, as well as a successful excision of the endometrial tissue. Because I'm not a doctor, I probably can't properly relay all of the medical details surrounding the excision process, but I can give a few remarks about my condition.

First, remember those endometriosis photos that you looked up on Google? (see above) Notice how the endometriosis is dark red, spotty, and clearly visible? Ok. Let's just say that mine looked nothing like this. In fact, most of the endometrial tissue that had clung to my organs and pelvic wall was white--like a plaque. My doctor pointed out that this kind of endometrial growth was, in fact, rather common but that pictures often represent endometriosis as being dark red and bloody, like a blood clot. I'll try to get some of my photos from the Dr's office so I can post them on this blog for further review. I eventually want to also post the details from his full report.

Secondly, he also discovered that I had 2 lesions on the back abdominal wall covering the uterus, as well as a site of adhesions where my own tissue had attacked itself due to inflammation. You see, when your body produces a foreign tissue in places that it's not "welcome," your body will attack it. This causes the tissue to be attacked, and thus, "dissolved." On one site of my pelvic ligaments, there was a horseshoe shaped spot that had been "hollowed-out" due to inflammation. Crazy! My doctor also mentioned that, to some physicians, this would appear as "normal" anatomy. However, he made a point to say that the apparent lack of tissue was not normal and was a classic sign of endometriosis.

Additionally, I wanted to remark about my personal issues associated with having endometriosis. And by "personal" I mean my peeing and pooping habits. No one ever talks about peeing and pooping--unless, of course, you're 8 years old. But as an adult, I thought it was normal that I had severe constipation at times (which is why I had a partially blocked bowel back in Dec 2011!) and I pee up to 30+ times a day. I know that peeing excessively was not normal, but I didn't have any reason to suspect frequent urination was caused by endometriosis. News flash: IT IS! So is constipation! Let me explain:

From what Dr. Harkins told me, your uterus, bladder & colon are all connected by your parasympathetic nervous system. When a woman with endometriosis has her period, the uterus and surrounding tissue with the growth, all becomes inflamed and agitated. You bowel habits are effected--sometimes you have diarrhea, and other times you are constipated. Typically, endometriosis patients have constipation. Constipation, in turn, leads to more frequent urination, as the pressure builds in your colon, so does the pressure in your bladder. Also, my colon was not even in its anatomical place, so to speak. Because of the endo growth, my colon had shifted and was not situated correctly in my abdomen. Hence, another reason why I had issues with constipation. Again, "it's all connected."

Back in 2011-12, I had severe back pain and constipation issues--along with my chronic abdominal pain. Which is why I was referred to both a Gastrointerologist AND a neurologist to assess my constipation issues, back pain, and more recently, urinary frequency. But it all can be explained by the endometriosis. In fact, it turns out that I have Stage III endometriosis (it is diagnosed in Stages I-IV). All along I thought (again!) that I was crazy--but I wasn't! My body was responding to the severe-moderate growth of endometriosis, and I knew all along that it was all related somehow. But doctors, in their defense, are trained to investigate the body's symptoms in piece-meal fashion. Which sucks for those of us who do not have unlimited sick time to get to every doctor's appointment that is scheduled for you.

Finally, I wanted to mention that because of the successful excision, my organs were found to be in-tact and not penetrated by the endo growth. Therefore, I'm lucky that I am predicted to not have issues with fertility if the endo growth does not come back more aggressively than before. My ovaries, uterus, and fallopian tubes are deemed "fine" to someday get pregnant. (someday!)

One more thing, though, that took me by surprise: I have adenomyosis. This is a condition that refers to when endometrial tissue grows (microscopically at times) in the outer walls of the muscular tissue of the uterus. My uterus is 1 & 1/2 times larger than the average uterus, which is apparently a "classic sign." So remember when my doctor told me in 2010 that I could have adenomyosis but that he couldn't diagnose me? Well, I have it. Dr. Harkins tells me that having a large uterus is pretty tell-tale of this condition. And since he teaches this stuff, seeing hundreds of uteruses every week, I trust him. Luckily in my case, this does not impair fertility. However, it can cause pain and eventual infertility. Fortunately, I know that this is another part of my "story." Unfortunately, there's not really anything that one can do about adenomyosis.

So for the longest time, I was lost in a haze of pain and grief, not knowing my full story, what was wrong with me, and what I could do to get better. But now I am "found." Dr. Harkins not only gave my life back to me, he also counseled me after surgery to help keep improving my quality of life. I have a daily pain regimen that does include Opiods, but they are non-addictive and work well to relieve me from my (still) chronic pain. I also take Miralax once a day, daily, to keep my bowels healthy and regular. Eventually, he says, the frequent urination will dissipate (and it can't come soon enough!), but I still pee at least 4-5 times a night. Also, I have the Nuva Ring and I insert a new ring concurrently so that I avoid getting a period. You see, if you can "shut down" the shedding and growth of the uterine lining, there is evidence to support a lack of endo growth. However, birth control is not a cure. It is only a preventative. Lastly, I am embarking on a dietary journey that is supposed to help suppress inflammation--and also may help me lose the excess weight that I have always had. You may or may not have heard of the "Endo Diet," which is quite similar to the Paleo Diet. Basically, the Paleo Diet eliminates processed foods, fat/fried foods, most of your carbs from wheat flours and dairy. So, you see, it sucks! But it's worth it. I've been able to mold it to fit my lifestyle. I haven't completely eliminated everything on the list, but I've been able to significantly reduce my sugar, fat & gluten intake which has resulted in a 3 lb weight loss in the past 2 weeks. Hooray!

Blogging about all of this has really helped me through the healing process. I have to be honest: I was in a really dark place for quite some time. I feel like I'm finally "waking up" from a long, horrific nightmare. And if my experiences can help one person believe that they "aren't crazy," and empower them to find answers, then I've done my job. When you have endometriosis, you begin to think you're all on your own, that no one could possibly understand. But we do! There are many people out there who know exactly what you're going through and want you to feel better! The problem is: they're not all right in front of your nose when you need them the most. So my advice? Keep looking for that doctor who listens to you. Don't give up to finding a pain regimen that works for you. There is light at the end of the tunnel, and when you get there, trust me, you won't feel so lost any more.