Monday, May 16, 2016

In Stitches: What I Learned from my Hysterectomy

In Stitches:  What I Learned from my Hyster-ectomy

It wasn’t until after my hysterectomy that I realized how many useful things I did not know about the surgery and recovery until I experienced them… and not for lack of searching.  With 600,000 hysterectomies performed annually in the US, there’s a good chance you know someone who will have one this year.  Here’s my hindsight advice.

Know your options.  After you do your research, ask questions.  Bring a friend, take notes and/or record your consultations. Invest in a second opinion or find a doctor with more experience in less invasive procedures.  Realize that you are hiring them and you want the best person for the job.  Because I had a large fibroid outside of my uterus, it would have been easier for the surgeon to have an “open procedure” with a larger incision as opposed to a laparoscopic incision.  I chose the surgeon who is The Guy for laparoscopic uterine surgery in my area.  But if you’ve ever had surgery or talked to anyone who has, everyone will tell you their surgeon is The Guy.  Knowing other doctors and friends had recommended My Guy was comforting.  Yet & still, after removing my uterus laparoscopically, the team couldn’t break up the large fibroid (because it had calcified?!) so they made a four-inch incision to get the fibroid out.  Having both types of incisions in the same surgery, I can attest to the fact that laparo is much less painful with a much faster recovery than the open incision. It’s worth fighting for if it’s at all possible.

As little as you can, as much as you need.  As a yoga therapist, this is my philosophy on using yoga props.  As a human being, it is also my philosophy on removing body parts. I was lucky to have a supracervical procedure; ie, saving my ovaries and cervix. Your options might be different. But if your doctor suggests prophylactically taking extra parts, saying you don’t really need them, do your research, know your family history, and make the best decision for you. I reminded my surgeon in pre-op (meaning right before I was wheeled into surgery) that I very much wanted to keep my ovaries and cervix if at all possible, though I understood there were no guarantees.  He flippantly responded that the cervix is not really important.  I wondered to myself if that would be his position if we were sleeping together.  “Nonetheless,” I insisted, “I want to be clear that it’s important to me.”

Know what's important to you. Acknowledge that it's a big decision and a highly personal one that only you can make. You may get input from well-meaning friends. I did. But once you've made your decision, advise your friends to forever hold their peace.  In my world full of yogis and alternative healers, people are anti- western medicine, anti- prescription drugs and definitely anti- “optional” surgery.  I am, too.  I spent about a year from the time my gynecologist stated, “Once you have your fibroids removed, you will feel better in a week than you have in years.”  What in the world was I waiting for, you may wonder.  But it’s a little more complicated than that.  (What isn’t?!) Should I try to save my uterus and risk new fibroids?  Should I have my cervix removed to prevent cancer?  Ditto the ovaries?  Am I ready for men-oh-pause?  Is it really that bad or should I live with it? I researched a lot, asked friends, consulted Eastern and Western doctors and did a lot of soul searching.  Once I was clear on what was right for me, I made a very clear boundary that the time for comments and suggestions was over.  I had made peace with my decision so they needed to forever hold their peace as well.  I had to cut a few people off mid-sentence. I stopped going to an alternative healer who disapproved of my decision. You need to be surrounded with support.

And speaking of (core) support, plan ahead.  Before any surgery, getting as strong as you can in advance will serve you well in your recovery.  You will want to be strong  not only in your core muscles, which will be out of service for longer than you will want, but also in your legs, arms and back body to compensate for your MIA core.  And even though no matter what you do, you will have no stamina after any major surgery, it will come back faster if you cultivate it before surgery.

Avoid the rabbit hole of pre-surgery jitters.  Whatever you do, realize that internet forums are filled with people with worst-case scenarios.  You will NOT be reassured by anything you find there. If you accidentally find yourself on one, change the channel immediately.  And no matter how tempted you might be, the night before your surgery is not the time to consult the internet.  Watching “Jack the Ripper” isn’t such a wise choice either.  (What WAS I thinking??)  Turn off your computer and plug in your earbuds with the most peaceful music or meditation you have.  Definitely play it in the morning, in the car and in the pre-op. Take it into surgery if you can.  If you’re like me, your surgical team will think you’re joking and/or crazy and won’t allow it. But definitely have someone there to plug you into it post-op.

I repeat: have someone there! The day of your surgery, you probably want your most kind-hearted friend with you as your hand holder. You also need a spokesperson.  Or what I affectionately termed a support team of what the f*ckers.  That friend who doesn't know when to keep the peace and maybe isn't the best hand holder? THAT is your best advocate. If you need to be in the hospital, you need someone with a louder, clearer, more emphatic voice than you will be able to muster saying, I don’t care what the clock says, protocol says, or who you need to call, we need X and we need it NOW! You also want someone holding your hand while this is going on. No matter how fiercely independent or just plain fierce you ordinarily are, you will be on drugs in a hospital gown unable to do much of anything on your own (because as soon as you can, you are outta there!).  So the only person seeing yourself as fierce is you.  Your fierce, inner warrior will serve you in your healing, but in getting what you need in the hospital… not so much.

Don’t be a hero. Your inner warrior should not be stoic! When I awoke from surgery and was asked to give my pain a number—which I learned was a requirement of hospital staff before administering narcotics—I actually thought:  well, the worst possible pain of a 10 would be having my legs and arms shot off, so I don’t want to exaggerate.  So even though I was in significantly more pain than I had ever experienced in my entire life, I said a 6.  If you are in so much pain that you can barely speak, it’s probably not a 6.  Three—count ‘em—shots of Dilaudid (aka synthetic heroin) later, I finally felt the pain subside.  But I didn’t learn my lesson there.  I continued to minimize the pain number as I imagined how horrific pain could be, but that tied the staff’s hands in giving me more pain meds.  It wasn’t until my second day post surgery that the nurse pointed at the very large white board that had been directly in front of me all along, detailing how the pain scale worked. If I wanted more narcotic pain meds, I had to give her a high enough number to warrant the drugs.  Your team of WTFers - who I recommend be sober - can help you with the math on this.

Just as pain is nothing to sneeze at, sneezing is nothing if not painful!  You want to avoid sneezing at all costs.  There is a sneezing center in your brain that sends a “tickle message” before you sneeze.    Luckily, there is a trick to prevent yourself from sneezing.  Just press your finger on the groove between your upper lip and nose, aka the philtrum, to suppress a sneeze.  This trick also works to suppress your sense of smell, which will come in really handy if you get nauseated by smells since the only thing worse than sneezing would be vomiting.

Post surgery, what’s missing?  Despite a bizarre combination of pain, numbness and swelling, I immediately felt a sense of space where I had had a grapefruit-sized fibroid outside of my uterus (technically, “pedunculated”) removed.  I didn’t have as much sensation of my uterus being gone in the beginning, but then, it wasn’t calcified and feeling like a rock in my belly.  And for enquiring minds, the six ligaments that attach your uterus to your pelvis are left behind.  Sloppy?  Maybe, but it’s less digging around to clip them at the pelvis, and that’s a good thing.   The stability they provided to your pelvis is gone.  Your bladder was more or less resting on your uterus.  That support is also gone.  If your cervix is gone, that is also a structural support MIA.  (Now is a good time to remember all the benefits of the surgery.)  It’s also a good time to get really clear about all of the muscles that support your core, which include the deep muscles of your back, abdomen, psoas and especially the pelvic floor.  The stronger they are pre-surgery, the sooner they will wake up afterward.  And you are going to need them more than ever.

Be ready to move way before it seems reasonable. Remind yourself that movement is required for healing because it’s the last thing you will want to do.  When I was wheeled into my hospital room, I was told I needed to start moving, starting with sliding myself off the gurney and onto the bed.  I thought the nurse had to be kidding.  But there she stood with her arms crossed and I realized she wasn’t.  I wanted to explain that I was a yoga teacher, that I was all about healing through movement.  But in that moment, savasana seemed more appropriate.   It took me a couple of minutes, literally, to slither onto the bed. I immediately discovered that rotation (twisting the spine) was the most challenging/painful movement for me. Remember that the more you move, the sooner you can go home.
What you don’t know can hurt you.  It’s astonishing how much you need your abs to do almost anything and how painful it can be.  I was shocked to realize that although the hospital staff was very attentive and knowledgeable re medications and procedures, a la western medicine, that they were clueless about body mechanics and muscle engagement.  Their well-intended instructions for me to get myself out of bed were ridiculous.  You need to use the electric bed to full advantage, bringing the head of the bed, and thus your upper body, as upright as possible and taking the bed as low to the ground as possible before getting up.  Bend your knees and put your feet on the bed and use your arms – which will engage your abs to some perhaps painful degree – and slowly swivel sideways, keeping your feet on the bed. Step one foot at a time onto the rail of the bed like a ladder unless you are lucky enough to have legs that will reach the floor.  And if your feet won’t touch the ground, demand a stool or something to stand on because any time your legs are dangling, you are going to wish they weren’t!  When you sit in a chair, have support behind you so you don’t have to use abs and hip flexors to hold you up because that would elicit more pain.  Also have support under your feet and do not let them dangle.  Let yourself stoop at the hips and bend at the knees initially when you stand and walk for less pressure on your incision.  Do not allow cameras in the room unless you have a very good sense of humor.

Knowledge is power.  The one tip the staff provided that was very helpful was to get a pillow (or something with a little more weight is even better) and gently press that into your lower belly for support to ease the discomfort.  Get a medical corset and use it when you stand or walk.  (Or if you have the je nais se quois for an actual corset, forget what I said about no cameras.)  They did not offer me one because I’m not heavy, but I found myself holding my belly in with my hands as I began to walk to prevent my swelly belly from pulling on my incisions.  I ASSumed since they didn’t offer me one that it wasn’t good for healing.  Nope.  They just didn’t think I needed it because I’m skinny.  You will find yourself walking like a robot initially, without the normal spinal rotation and arm swing of a natural gait. Take heart that your body intuitively does this to prevent pain from stretching/engaging obliques  and psoas in particular.  But your arms also steady your balance, so that was enlightening for me.   You will also find yourself walking with a stooped spine and bent knees because if feels better on the belly and requires less muscular effort.  Super sexy, right? This is another good time to remember all the benefits of the surgery. AND it’s not forever.  What is?

Timing is everything.  Notice when your pain meds are peaking.  That’s when you want to get up, take a walk, go pee… these are all ambitious plans post surgery.  This sounds obvious now, but nothing was really obvious to me post surgery.

Slumber party.  Your bowels are the last thing to wake up.  Knowing you need to pass gas or poop is quite a different thing from doing it.  I joked with a physical therapist friend of mine that I might need PT for pooping.  I don’t know if there is an app for that, but there is PT for it.  You won’t need it, but it’s good to know.  Take the stool softeners you are sure to be prescribed.  They work.  And so does Pepcid.

So give it a rest.  Your digestion, that is.  If you get served meatloaf hours after your surgery-- yes, that really happened, at Cedars Sinai, I might add! -- just smile.  You will intuitively understand that laughing is off the menu, too.  And so is anything that is hard to digest.  So if your well-meaning friends bring you soup with beans or lentils or anything gas forming, just keep smiling.  Be gracious.  And give it to your neighbors.  Warm, mushy, boring easy-to-digest food is best.  Even if you love fresh, green juices and protein shakes, my normally easy digestion was not up for these healthy super foods I was used to for weeks.  So even though protein is great for healing, it’s difficult to digest and even digestive enzymes might be hard on your system…. for now.

Back in the saddle.  When I left the hospital, I was advised not to put anything in my vagina for two weeks.  I had to stifle a laugh – painful! – as I asked, what in the world would possess me to put anything in my vagina any time soon?  Apparently, people use tampons for post-surgical bleeding (I had no post-surgical bleeding).  When you do have sex – and you will have sex again!! – it definitely does feel different.  Your uterus contracts during sex, as does your cervix, so there is a sense that something is definitely missing.  But I am happy to report that if you had orgasms before, you will have them again.  And if you still have your ovaries and cervix, the cervix is now a cul de sac, closed up with nowhere for semen to go but out.  (I asked.)

Getting back in gear, aka, driving.  My surgeon told me I would be able to drive when I could bend over and touch my toes while standing.  How many people would have their driver’s licenses revoked if this were part of the DMV test?  This makes no sense since it does not require the same muscles or range of motion as driving.  I could touch my toes two days after the surgery, which I discovered when I dropped my lip gloss on the hospital floor.  It turns out, if you have long, strong hamstrings and spinal erectors (back extensor muscles), hinging at the hips to grab your lip gloss and standing back up is one of the very few things that don’t require any abdominal support.  My surgeon did not believe me when I told him this.  Not surprisingly, telling your surgeon he doesn’t know what he is talking about – on any subject -- is not so well received.  The real question is whether you can bend your hip and knee beyond sitting position and then extend the knee vigorously, in case you need to slam on the brake or accelerator. I was driving in 10 days.  Not coincidentally, I was entirely off pain meds in 7.

Trading places.  I knew I would have swelling in my belly.  I knew my body would leach the protein from my muscles to facilitate my healing.  What I didn’t know was that all of the lean muscle in my body would immediately evaporate.  It was a magic trick – and not in a good way – at least from an ego/visual perspective.  Now my ass was flat and my belly was round.  For months… many, many months.  I wondered if my belly would ever stop swelling, even as I reminded myself nothing stays the same.  Just like everything else, it did eventually change.

It’s about time.  So maybe two weeks post-op wasn’t the best timing to take a workshop on the pelvic floor.  Or maybe it was perfect.  Nonetheless, there I was hunched over like a senior citizen attending Leslie Howard’s workshop.  I knew she has a bumper sticker “Save the Uterus” and that the whole thing might be a little depressing.  But for me, driving myself to the studio, being amongst friends, and participating (albeit gingerly) in a workshop on finding your core and how your uterus or lack thereof is part of that equation, felt like inner and outer core support.  I highly recommend her workshops and web site for guidance and resources.

How do you know?  I wanted to know when I should start exercising again, when I could go back to work again, when I would have energy again, when I could do a “real” yoga class again.  Unfortunately, it depends.  I started walking immediately, getting out of breath after a block at first.  I succumbed to daily naps, imagining I would get a second wind that never came.  For a few, long months.  I went to my first yoga class a month post surgery, though I still wasn’t really standing up straight.  Getting back to some version of my life was more important than how I looked doing it… which definitely wasn’t pretty.  No one can – or should -- tell you how much to do.  For me, my body would just spontaneously quit when I had had enough. I trusted that.   If you can’t trust yourself with this, find someone who is sensitive and experienced to work with because you do need to move and continue to lengthen and strengthen so you don’t get stuck.

And don’t get stuck with extra or unfair medical expenses.  Know your insurance. Know your rights.  I was very careful and precise with my insurance company, the hospital, pre-op procedures and surgeon about my out-of-pocket expenses. I made very certain that everything was in network.  But the dollar amounts are scary.  I made two piles of mail post surgery.  One was medical bills; the other was insurance reimbursements.  I just let them pile up, knowing they would be coming in for quite some time and that I would have 30 days to pay.  When it seemed like they had all arrived (they hadn’t!), I opened up the reimbursement pile first so I didn’t panic when I saw the bill amounts.  I got a $9,000 bill from my surgeon after my insurance had reimbursed him for the agreed-upon, in-service fee and after I had paid my maximum deductible.  His office offered to give me a discount when I called. They must have ASSumed I didn’t know that it is illegal for him to bill beyond what the insurance pays.  I wrote several letters to various medical providers with reimbursement proof attached, explaining that it was illegal to bill me further and to contact my insurance company with any further communication.  This did the trick. 

And it DID feel tricky.  I wanted all parties involved to be fairly compensated. (My insurance paid out $70,000, which seems more than fair.) And I wanted to be able to go back to the doctor. Like when I felt what can only be described as a thick rope of tissue underneath an incision. What is THAT?  Scar tissue. It is an interesting thing.  We need it to heal initially; then we need to carefully, mindfully, slowly break it down for the next phase of healing. I got some mixed advice re the scar tissue “cure.”  First: Consistently, diligently, forcefully massage the area and after about a year, it will go away.  Second:  After about a year, it will go away.  Really?!  I chose the kinder, gentler route of not f*ing with it, and it was gone within a couple of months of otherwise moving and healing my body.

Are we there yet?  Since I was planning to have the outpatient, laparoscopic feel-better-than-I’ve-felt-in-years-after-a-week surgery, I was a little stunned to wake up and realize my plan had been foiled.  Though I had packed a bag and made arrangements to stay in the hospital just in case, it wasn’t until after my surgery that I truly considered that this was gonna be a way bigger deal than I had wanted to admit to myself. It was only then that I allowed myself to comprehend the sad truth: it takes about a year to recover completely.  

One year later, I could still feel some twinges at times, some vague vestiges of trauma.  As a yogi, I knew neither my strength nor my flexibility were 100% what they were before.  Maybe they never would be. But my belly and butt had reverted to their normal positions; my energy was back; my pelvic pain, rock in my belly and long, heavy periods were gone; I still ovulated; my gynecologist – not the surgeon – reported that my anatomy was beautiful; and I don’t need birth control OR hormones.  So, yes, it may take a year. And, yes, it may even take longer.  After 2 years, I definitely felt better than I did at my first-year mark; definitely stronger with less scar tissue; my hormone levels are way down but my rudder is way steady…. So it’s a slow, steady climb back to a new, steady normal. 

Having a steady, physical practice of some kind is essential to prevent possible long-term complications of bone loss/osteoporosis, incontinence and organic prolapse that can stem from the early loss of hormonal and structural support associated with the uterus. This may also be a sad truth. Or an inspiration - and permission! - to give yourself the time and attention that you know you need to feel vibrantly alive.

Leslie Kazadi

(Repost from 2013)