Advocating for YOU

This week I want to talk to you about how to advocate for your own health.  Here’s the thing, you must advocate for your own health because no one else will do it for you.  This is something I used to tell my patients when I worked for the American Cancer Society.  So often, I would have a patient who felt completely lost after receiving their cancer diagnosis because a) they didn’t know what questions to ask their doctor or b) their busy doctor didn’t take the time to fully explain things.  I know, doctors are very busy people and they see a lot of patients.  But sometimes, they need a reminder that their patients are human beings who may be scared and who also didn’t go to med school.  Today I want to share the journey that led to my learning this lesson the hard way.  It all starts back in 2013.  Also, disclaimer, the majority of this story is about my reproductive organs.

Never Skipped a Wellness Exam

I have always been a good girl when it comes to getting my regular wellness exams.  In fact, I have not missed one since I was 17 years old because I’ve had issues that started at a young age.  I had several pap smears come back with abnormal results that started to normalize once I ditched the birth control pills.  Now, I am not advising you to stop taking birth control pills – this is just what I did for my own health reasons.  After I got married, my issues really started to ramp up.  My periods were so heavy that for the first few days I felt like I couldn’t go out in public.  Sometimes I would go through three super tampons in an hour or so.  And sometimes, my actual vagina would ache during these first few days.  I chalked it up to just being normal for me and how my body went through the process.  As I said, I never skipped a wellness exam and for several years in a row, my results always came back normal.  Mind you, I was seeing a family practice doctor as opposed to an OB/GYN because I didn’t think I needed one at that time.  Because we moved and insurance changed, I started seeing a new doctor in 2013.  That first year, she told me that nothing was wrong even after I told her that my periods had gotten really heavy and so I trusted her.  The second year, she told me she thought my uterus might be a bit enlarged so she recommended I get in with an OB/GYN but that it was probably nothing to worry about.

Meeting the OB/GYN

At the first appointment with my OB, it took him all of 7 seconds to tell me that my uterus was HUGE.  His word.  And he thought I should have a transvaginal ultrasound.  Let me tell you, if you haven’t had one of these, it is the one time in my life I thought I was going to actually pee myself in public!  In order for them to get good pictures, you have to drink something like 32 ounces of water in an hour and you can’t go to the bathroom.  On the day of my appointment, the printers had stopped working in the clinic and there were some other things going on behind closed doors and I had to wait for nearly an hour, with this super full bladder to have this procedure done.  The way it works is like this, you go in, they have this wand that you think is going to touch your brain that they stick up in your vag, they take photos, then you get to pee and then they take more photos.  The moment I actually got to use the restroom was the most glorious pee of my life!  I got called back into my doctor’s office two days later and he informed me that I had 5.5 POUNDS of fibroid tumors that were pulling on my uterus as well as pushing on nearly all my other organs.  He told me that I was in the 95th percentile of largest tumors he’s ever seen in his 20-some years practicing medicine.  What can I say?  I’m an overachiever.  What I didn’t tell you is that I had been having symptoms I didn’t know were symptoms of growing these huge tumors.  For example, when I would lie on my left side, my heart would race for no apparent reason.  I had been having this weird tingling sensation in the tops of my legs, and I felt like I had to pee all the time.  Turns out, all of these symptoms were coming from the fact that I was growing a Voldemort baby in my body.  Most of the time, fibroid tumors are benign, and fortunately, they were in my case.  My doctor informed me that because I had so many that the only way to treat them was by removing them, meaning I had to have a hysterectomy.  Did I mention I was only 34 at the time?  Chad and I had already pretty much decided that we weren’t going to have children, but to have the decision taken away from you?  Let’s just say, there were lots of tearful discussions.  In my case, time was of the essence because if the tumors decided to rupture, I would bleed out very quickly – which if you’ve ever watched any medical show ever, you know is not a good thing.  So, I got scheduled for a hysterectomy.  The plan was to keep my ovaries so that I wouldn’t have to take HRT, or hormone replacement therapy which I thought was a good thing.

The First Bowel Prep

Jump to the day before surgery.  If you’ve ever had a big surgery, you probably know what story I’m getting ready to tell next.  If not, well, you’re about to be highly amused.  Before any type of surgery like mine, you have to do a bowel prep.  This is where you drink a GALLON of water that contains sodium sulfate, potassium sulfate, and magnesium sulfate.  What this does is literally clean out your bowel so that in the event that something accidentally gets nicked, you’re not going to start leaking actual crap into your body.  Here’s what I learned on that day.  Step one, get the water as cold as you can possibly get it without it freezing.  Trust me, it helps with the taste.  Step two, plan ahead what books you’ve been wanting to read because you are not leaving the bathroom.  Step three, don’t sip the solution, chug it like you’re back in college.  Nothing can really prepare you for this experience so it’s best to just take it as it comes… or leaves as it was in this case.

Day of Surgery

On the day of surgery, since mine was the first of the day, they started me out in recovery.  Now, this area is pretty nice.  The lights are dim, everyone is talking quietly and getting ready to start their days.  I, of course, was a mess.  I was terrified of being cut open, concerned about being intubated and my vocal cords being destroyed, worried the anesthesia wouldn’t work like that Leo movie, and of course, this meant no babies.  My doctor was pretty awesome, and he came in to check on me.  He told me that he could try and save my uterus if that’s what I wanted but I told him that we’d already decided to get rid of it so we should stick to the plan.  They wheeled me into the OR and the last thing I remember was a Dr. Blue Eyes prepping me for the anesthesia and the next thing I remember was waking up back in recovery with the pain equivalent to doing 10,000 crunches.  The surgery itself took 3.5 hours and my doctor later told me that he had his hands on every one of my organs except my heart because he had to move everything back into place.  I ended up with internal stitches and 23 staples from my belly button to the top of my pubic bone.

Recovery took a solid six months.  I went back to work after six weeks, but I still had healing pains for much longer after that.  Right around the time everything was feeling pretty good, I had my 9-month checkup.  I expected to hear that everything was healed nicely and that I’d be fully released.  Boy was I wrong.  After my doctor checked out my ovaries, he immediately ordered an ultrasound.  As it turned out, my ovaries decided they were feeling left out of the party and decided it was time to throw a tantrum.  After a CT, it turned out that one of my ovaries had adhered to something it shouldn’t and the other one was displaying signs of endometriosis.  Oh goodie!  What did this mean?  It meant that I needed a second surgery nine months after the first in order to remove my ovaries.  In fact, the gal who ran my CT told me that my results are pretty typical.  Most of the patients she sees who choose to keep their ovaries end up back in surgery six to nine months later having them taken out anyway.  So if you’re in the situation, talk to your doctor to see if having everything done at once is right for you.

Second Surgery

Since I’m nothing if not practical, we scheduled surgery on December 31st, and I ended up with a twofer.  I’d already met my deductible from the first surgery, so it ended up being a sort of buy one, get one situation.  Same as before, I had to do a SECOND bowel prep and all I can say is don’t let your doctor try to convince you to use the generic brand – use the real deal.  It took nearly all day to work and because it dehydrated me so badly, the PIC line people had to be called in order to get my IV in before surgery because the nurses couldn’t find a good vein.  On New Year’s Eve, I checked into the hospital fully expecting to go home that day as this surgery was supposed to be done laparoscopically.  But as luck would have it, as I was coming to, I heard a nurse on the phone scheduling a room on nine west, which I knew meant the 9th-floor surgery wing.  Evidently this completely set me off because, although I have no memory of it, my husband told me later that I was sobbing as they took me to my room.  Because I had so many adhesions, or scar tissue, that had built up from the first surgery, they weren’t able to get to my ovaries with the scope.  So, I was once again cut open from the belly button to pubic bone and this time, the surgery took 4 hours.  The good thing is that for whatever reason, my recovery time wasn’t nearly as long as I was back to work after four weeks.

I still remember the very first hot flash I had.  It was about a week into January and it was about 2 degrees outside.  I opened the back door and very nearly naked stood outside and waited for it to pass.  Soon after that, I did end up going on HRT because the benefits of taking it at my age outweigh the risks.  I have a lower chance of developing breast cancer and osteoporosis.  I do still have hot flashes once in a very great while.  And, because I have no reproductive organs, I no longer have periods which I must say is freaking amazing.

Why This Story?

At this point, you may be asking yourself why I chose to tell this story.  First, had I paid more attention to my body this whole thing might have been avoided.  But because I trusted a non-specialist doctor when she said everything was ok, I ended up having the choice to have children taken away from me.  Look, do not feel sorry for me.  My husband and I love our life together and we were headed down the path of no children anyway, but it really sucks when you don’t get to make choices for your own body.  You must listen to your body because it will tell you when something is off.  Believe me, this is a hard thing to do.  We get so busy taking care of others that we sometimes forget to take care of ourselves.  Also, denial can take you a long way down the road until you get passed the point of no return.  Did anyone else just get a Phantom of the Opera flashback?  No?  Just me?

Second, I want to share this advice with you.  Don’t take everything a doctor tells you for granted.  Doctors are humans too and sometimes you need a second opinion.  And do not leave the office until you have every question answered.  Take a notebook with you that contains your list of questions and also use it to take notes.  You must be prepared for when emotions take over.  It’s very difficult to view your health pragmatically when you’ve just been delivered bad news.  This is why it’s helpful to have a notebook.  And you need to make nice with the doctor’s nurse.  More than likely, this is the person you’re going to speak to when you think of new questions once you get home.

Lastly, this story sets up next week’s story about how I am continuing to advocate for my own health so stay tuned!

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