Tuesday, April 3, 2012

Removing the bad pieces

While I was in GTMO, I started having some serious pain.  It was usually around "that time of the month", so I just associated it with being a girl.  But then I was in a car accident, a TCN sideswiped me and the pain was exasperated.

Medical told me to stretch out the sore parts.  They suggested the pain was due to the accident.  I wasn't so sure.  I went to yoga to help with the stretching, and left one day crying, in an unbearable amount of pain.  Driving back to my cuzco was the most difficult thing I had ever done (since Teh Kaar was a manual) and I had to literally lift my legs with my hands to get up the stairs.  I took a tramadol (which I had gotten at one my visits to medical for the pain) and collapsed into bed.  I got up the next morning, and went to medical.  I explained there was something wrong.  They gave me more some 800mg Motrin and sent me on my way.

I went back several times for the pain, mostly so it could be documented.  They changed my birth control (BC).  When I arrived in GTMO I had an IUD.  It had started slipping out, so they removed it and I asked to be put on Ortho Evra (the Patch).  I was on the patch when I started having the horrible pain, so they switched me to Ortho-Tricyclen.  I tried to think of what this pain could be, and the only thing I could come up with, with the help of Teh Bear jogging my memory, was when Teh Mom told me the year before that she had Endometrosis.  I did lots of research on Endo, then went back to medical.  People love it when you come up with a solution to a problem, so I thought this might work better than just telling them I was in pain.

Some Endo research links.

The next time I was hurting and went to medical, I explained about the Endometrosis family history (Teh Mom, Teh Sister, Teh Granny) and the symptoms.  I told them I wanted to see about getting checked for Endo.  They sent me to the OB/GYN at the hospital for an ultrasound, which was the only thing they could do on the island due to limited resources.

I got to my appointment, excited I might be able to find something out.  The corpsman (HM) told me to undress from the waist down and the doc would be in soon.  The doc came in, a male, O-4, and asked me what I was there for.  I explained to him the family history of endo and how we were using the sonogram to see if there was anything to be seen.  He told me that a sonogram couldn't determine anything with Endo and told me there was nothing that could be done to help me.

I was torn between saying, "Well, I'm already naked, so how about we just do this since we're all here," and just keeping my mouth shut, since he was a high ranking officer.  I went with the 2nd choice, which I learned from quickly.  The HM looked at me and looked at the doc and looked back at me.  She was in just as much disbelief as I was.  The doc and HM left the room, I put my uniform back on and went home.  I looked over all the endo research again to make sure that a sonogram was part of the "finding process", it was.  I wasn't crazy.

The issue then became, since the doc had shut me down on doing the sonogram, and he was the only OB/GYN at the hospital (at that time), there was no way to get around him.   He suggested changing my birth control to Ortho-Tricyclen-Lo, which I did.  It didn't help.  Luckily, I was leaving GTMO soon, so I decided just to deal with the pain until I got to Bahrain and could hopefully find someone there that would be willing to help me.

When I got to Bahrain, I had to make an appointment with the OB/GYN since the OB/GYN in GTMO didn't give me enough birth control to make it through more than 3 months, which meant getting my yearly girl appointment done in November and then again in February... rah.  The OB/GYN in Bahrain couldn't believe that the doc in GTMO hadn't done anything but change my BC (especially since I was already sitting there naked), and it wasn't even a good change she said.  She changed my BC again to Norinyl, a monocyclic pill, where the hormone levels are consistent throughout the whole month, except for the placebo week and recommended Naproxen (Aleve) over Motrin for when I was in pain (naproxen is for cramping muscles where motrin is for general pain was how it was explained to me).

The doc explained that this was a better option for me, because it could help control the pain by controlling the levels of hormones where the Ortho Tri-Cyclin was different levels of hormone throughout the month.  If I had Endo, the change in hormone levels was probably causing a majority of the pain.  She explained to me that because we were in Bahrain, surgery wasn't an option until I was able to get back to the US.  I knew the likelihood of getting my command to approve a trip to Norfolk to get examined/have potential surgery was minimal to a cool day in hell.  I told the doc that as long as the pills were able to keep the pain under control that I'd just wait till I got my next set of orders (hopefully back to the US, thankfully back to the US) to try and get more definitive answers.

The new BC did control the pain, which was a huge relief.  I wasn't a huge fan of going on the pill from the beginning because I knew I'd forget to take it.  But the motivation of being almost painless was enough to make me able to remember to take it.  The only difficulty I had with the BC was when I would switch from day shift to night shift, since I would take the pill first thing after waking up.

When I started preparing to leave Bahrain, the pain started coming back.  Not has bad as it had been, but enough to make naproxen a regular part of my days.  I suffered through it, knowing that as soon as I got to Pax River I'd be starting the Endo search again.

When I checked in with my HM2 and flight surgeon/doc at VX-1, I explained the situation to them.  The pain that I was having, the history of endo, how the doc in GTMO wouldn't help, how the doc in Bahrain did all she could and finally put the Endometrosis prognosis in my medical record.  Doc told me to come and see her whenever I wanted to start the research again and she'd refer me to the OB/GYN at medical.  After I was finished checking in, I went back to doc.  She gave me a referral to see Dr. Tremont, a male, O-6, who worked at the main medical clinic on base.

During my first appt with Capt. Tremont, I explained my medical history, the pain, the whole story.  He was very surprised at the doc in GTMO and even looked him up to see if he was a OB/GYN, which he actually was, despite Capt. Tremont's quickly formed opinion after I told him how the LCDR said a sonogram wouldn't help determine anything.  It felt nice to finally have people on my side.

Capt. Tremont made a whole list of issues that could be causing the pain.  From a UTI, endometrosis, pelvic inflammatory disease, ovarian cysts, to cancer.  His plan was to rule each thing out one by one.  We were able to quickly rule out UTI and cancer.  Then Capt. Tremont sent me for an ultrasound, which would determine if there were any cysts/things that were obvious that could be causing the pain.  The ultrasound didn't show anything, which left endo and pelvic inflammatory disease as the options and the only real way to find out was to go in and look around.  He referred me to a OB/GYN out in town who was able to do the surgery.

I had a consultation with Dr. Polawski in the beginning of March.  He heard my story, explained some medical stuff to me about endo and ANDROmetrosis, and explained my options.  It went like this:

There are 2 types of "metrosis" (I made that term up, but strongly encourage you to use it).  There is Endo and Andro.  Endo is outside the uterus, Andro is inside the uterus.  Andro cannot be removed in any way other than by a hysterectomy (which is the complete removal of the female reproductive organs).  There is also really no way to determine if you have Andrometrosis other than by doing a biopsy of the removed uterus.  Endometrosis is uterine tissue that grows outside the uterus, sometimes making adhesions/fusions outside the uterus with things that aren't supposed to be connected (like your intestines).  These fusions cause pain, since the fusions are connecting 2 places that shouldn't be connected.

Since my reproductive parts haven't served their purpose yet, I opted to keep them, in case of a desire to actually use them one day.

The methods Dr. Polawski said there are to "treat" the endometrosis are:

Option #1: Surgery
This is the only way to scientifically, without a doubt, say, "you have endometrosis".  It was explained that the dr would go in laparoscopically (through my belly button and 2 or 3 small 1/2 inch incisions in my abdomen).  There would be a scope to see what he was looking at, then the other 2-3 incisions were for the tools to remove the fusions that had been created by the endo/whatever else the dr found that shouldn't be there (cysts, random other things?).  He would only know what would happen once he got inside and saw what there was to see.  He also explained how they would use gas to blow me up lift my uterus, so he could see under my uterus to see if any endo had formed there.  This minimally invasive procedure would require 7-10 days of recovery.  The removal of all found fusions is taken to the lab to be biopsied to confirm Endometrosis.  This procedure did not guarantee that fusions would be gone forever, in fact quite the opposite if Endometrosis was confirmed via biopsy.

Option #2.  lupron shots.
For 6 months, I'd be given Lupron injections.  These shots would essentially put my body into menopause, stopping the fuel for any "metrosis" in my body.  The purpose is to "kill off" the "metrosis" since there is an absence of hormones to help the "metrosis" make fusions/spread.  The downside is that I'd be 26 years old and in menopause.  If the injections didn't help, surgery was the last option, but it probably wasn't "metrosis" if the Lupron didn't help.

After several years of trying to know and prove that I had endo and I wasn't just making some crazy shit up to get good drugs, I knew when I walked into Dr. Polawski's office that I wanted the surgery if he was willing to do it.  I still let him explain everything to me so I could reweigh my options.

I told him the surgery was my choice and we scheduled it for March 28th (after Worldwide Jesus Lover's wedding).  It was planned that Teh Dad would be my caretaker for the 1st half of my recovery and Teh Granny would be my caretaker for the 2nd half.  Things worked out better than anticipated, despite some major difficulties.  The wedding took place on the 24th instead of the 17th, I was able to attend and Teh Dad was able to just ride back to MD with me instead of having to make the 8 hour drive up and back.  He bought a one-way plane ticket from BWI to CLT and it was only a 1.5 hour drive home.  Teh Granny drove up on Saturday.

I had a pre-surgery consult appointment with Dr. Polawski a week prior to the surgery to confirm all decisions and to go over what would happen in the surgery (as covered above).  He warned me that the hospital would call to confirm my surgery in the upcoming week and they would let me know the details of when to be there/not to eat after midnight/etc.

The pain got steadily worse throughout the month.  I don't know if I was just more aware of it because of the upcoming surgery or if my body was excited.  I kept telling myself, just a few more weeks, just a few more days!  Finally, it was surgery day.

I got up at 0430 and took Phil out on his last morning walk with me for a while.  I showered, make a snarky FB update about not having been up that early since bootcamp, and we were at the hospital by the appointed 0620.  The surgery was scheduled for 0830.  We were brought back to pre-op-prep where I had to get naked and put on my sexyyyy hospital gown.  A vial of blood was drawn and my IV was put in.  I read while Dad napped, all the while nurses were coming in an out to ask me the exact same questions over and over.  What procedure was I getting done, who was doing it, any allergies, whats your birth date?  I stayed pleasant about the repetitive questions what with the needle sticking out of my hand and the fact that some of these nurses might see me naked in a few hours.  The anastealogist came in and explained that I was going to be put under and I wouldn't remember anything.  That I'd wake up in a recovery area and everything would be done.  Dr. Polawski came by with some forms for me to sign that allowed him to do all the things he re-explained, including the "if I find a fallopian tube that is damaged and doesn't look like it works, it will only hinder your ability to get pregnant down the line, so I will remove it."  That was the most scary part, not knowing what was going to happen until after it was already done.

Finally, it was time.  They came with a wheelchair to wheel me away.  I told Teh Dad not to look at my butt since there was no way I could keep everything covered and get out of that bed.  There was laughter all around.  When I got situated, I was pretty sure Teh Dad might cry, but he didn't.  He stayed strong.  They wheeled me into the operating room, that didn't look anything like Grey's Anatomy.  I had to lay myself on the operating table!  Gosh!  lol.  I laid down, spread my arms out, Bryan, the anastealogist from earlier, who's name is the only name I remember from the operating room, put an oxygen mask on me and said, I'm giving you anti-nausea meds now.  I woke up a split second hour-ish later to a really nasty sore throat, needing some water and some nurse who was asking me what my pain level was.

Me (thinking): WHAT?!  Lady, please.  Tell those other yappers to stop yappin'.  They are so loud I don't know what my pain level is.  OUUUUUUUCCCCHHHHHHHHHHHH.  Throat. so. dry.  I don't even care about my uterus.
Nurse repeats:  What is your pain level on a scale of 1-10?
Me (cursing her for making me speak outloud):  uhhh.  8?
Me (thinking): Why can't I moooovvveeee?  My throat hurts at at least an 8.  I mean, I'm not crying.  Those signs show tears if you're a 9/10.  No tears.  8.  OOOOOOOOOOUUUUUUUUUUCCCCCCCCCHHHHHHHHHHHHHH, my uterussssssssssssssss.

A few minutes later:
Nurse:  What is your pain level on a scale of 1-10?
Me (thinking):  Say something nice to ME.  Stop talking about your weekend plans with your homies, who really are getting on my nerves.  Why do some women have such high pitched voices?  Shouldn't this recovery area be quiet?  Like a library?
Nurse:  What is your pain level?
Me (thinking):  Hrm.  I do feel less pain.  That is nice.
Me: 6?

After several minutes some time that I have no way of determine due to being drugged out of my mind and being watch-less, I was rolled (in my bed this time) back to the pre-op-prep area.  Teh Dad was waiting on me.  He seemed relieved that I was back.  I tried to stay awake so we could leave sooner, or at least that was my thought process.  Nurses came and went and I think there might have been conversation between Teh Dad and I that I no longer can recall.  He did tell me that Dr. Polawski had come to tell him that he'd removed a cyst and some fusions and there was some bad scar tissue near one of my tubes.  After I finally peed, at least 100cc's, which I'm an overachiever and had 200cc's (prob from all the water I'd been sucking down for my sore throat and the cardboard graham crackers they'd given me to eat), I was allowed to put my clothes on and we were free.

We were out of the hospital by 1.  We even stopped to pick up Japanese for lunch.  Oh yes, I stomached sushi after surgery.  Teh Bear was surprised, as he'd warned me that I'd be so nauseous I'd probably vomit from the drugs as soon as I woke up.

Teh Dad took extra good care of me.  He wouldn't even let me remove the tape on my belly over the incisions.  He took Phil out for all his business/exercise needs (I'd say that he even enjoyed it).  He even made me go on a walk the day of my surgery, "because the doctor said you needed to move around and not just lay around!"  I often referred to him as "masa".

The day of the surgery I was fine.  I didn't want to move around much, but I wasn't in too much pain.  Dr. Polawski had prescribed Percocet for my pain, which I, unknowingly, took the lowest amount possible.  1 pill every 6-8 hours instead of the 1-2 pills every 4 hours.

The day after the surgery (Thursday) I was sure I might die.  I hadn't slept well the night before, my back hurt from top to bottom, my uterus hurt, I felt like a blow up doll might, my throat felt like the fire from a thousand suns had scorched it.  I only got out of bed so I could take pain pills, and I was bitter that I had to eat before I could take them.  Then something amazing happened.  A nurse from St. Mary's Hospital called to check up on me after my surgery.  I was seriously impressed.  She asked if I had any questions, and I did!  I asked her if I could take a Flexeril with the Percocet.  She said yes, but suggested I should alternate which I take and not take them together.  I was relieved.  I stayed up a little while, ate lunch, took a Flexeril and then laid down for a nap.  I woke up, the drugs had taken effect and decided that my "getting around" for the day was going to be a trip to Target for some random stuff.

Yeah, don't ever say I'm not a badass..

While we were in Target, one of the LT's from work called me.

LT: Hey, I know you're on convalescent leave and you just had surgery and you're probably not feeling very well.  I'm sorry I had to call, I know you're trying to recover.  I'm really sorry.  But I need the diplomatic ID# from APACS and your office said you're the only one that can access the request since you created it.
Me: Sir, this can't wait till the 9th?
LT: Well, we are trying to get all the final arrangements done ASAP.  Is there anyway you could come and look at the request?

Long story short, after some back and forth, I just succumbed to having to go into work on my 2nd day of convalescent leave to find this number that I knew didn't exist in any request I had process.  I very strongly pressured the guy on watch to let me use his computer by flashing my taped up belly button surgery markings.  Some people really take walking for granted!  Once I finally got signed into the program, I made sure to go in and copy the ENTIRE approved request and send it to the LT in an email, so there could be no discrepancies over if I had over-looked something and to prove that I had went in on convalescent leave.

I was pretty sure after the trip to Target (and to Lowes to get some spare keys made) and to work that I might die by the time I got home.  I very confidently told Teh Dad that I would not be going out for a walk that evening, that I'd done all the "getting around" that I was doing that day.

Day 2 after the surgery (Friday) was much better that the day prior.  The Flexeril I'd taken before bed enabled me to sleep, which might have been the major difference.  I moved around like an old lady for most of the day, but while Teh Dad was washing Yurtle (the car), Phil and I snuck out for a walk.  Phil was easy on me, and Teh Dad quickly showed back up, cause the landscapers were in front of the car wash area.  We walked to the car wash area and they landscapers had moved, so I told Teh Dad to go bring Yurtle back for her bath.  He ensured that I would be ok, then hesitantly headed back to get Yurtle.  Phil and I chilled while Teh Dad started washing Yurtle (YAY!).  Eventually, that got boring, so I told Teh Dad that we were heading back to the apartment.  I sent my across the street neighbor's a text message asking if they needed anything since they just brought home their new baby and was told I could come over and see the baby, which I did!  Soooo tiny!  Sooo precious!  The rest of the afternoon was lazy.

Day 3 after the surgery (Saturday) was mostly normal.  My incisions started to get itchy and were still moderately sore. Teh Dad purposely hit a speed bump pretty hard to "test" me to see if I would flinch.  I didn't, but I made sure he knew that wasn't ok... ever.  Jeez.  We went out to a pet store across the bridge to see about some fancy/expensive food for Phil (which we determined probably was WAY more than I was willing to pay), then hit up Moe's for lunch.  There are only 3 Moe's in MD.  One of them just happens to be about 25 minutes from where I live.  One more reason why Pax River isn't the worst place to be stationed.  Teh Granny arrived after some very frustrating calls about directions, and we got home after she had already arrived at the apartment.  That evening was spent getting Teh Dad's laundry cleaned and packed and Teh Granny settled in.

Day 4 after the surgery (Sunday) was church and then my first day driving!  I hadn't taken any good drugs (which I mean anything stronger than 800mg Motrin) since noon on Saturday.  Teh Dad needed to be at BWI by 1:30pm.  After church, Teh Dad, Phil, and I jumped in the car and headed to BWI, Teh Dad drove.  He only slammed Phil against the seats 2 times, which I teased him mercilessly about.  Phil went with us because after dropping Teh Dad off at the airport, we were going to meet Phil's foster family/dog sitters for the time that I'm gone to Scotland.  Everyone hit off well, they are excited to have him and I'm excited that he will be staying with an awesome family who is excited he is there while I'm away.  I finally made it back home around 5pm and Teh Granny and I went out for dinner (despite the fact that all I really wanted to do was lay down and not move for several hours.. I wasn't too sore, I was mostly just tired from expending so much energy).

Day 5 after the surgery (Monday) was a pretty normal day.  I took Phil on his morning walk.  I only took 1 Motrin because my incision spots were really itchy and still kinda sore.  Teh Dad had proclaimed that I leave the surgery tape on the incisions till I went to the doctor on Tuesday, so I'd left the tape on.  Teh Granny and I went to the store to pick up some items (most important was yogurt for Phil who gets super stinky gas) and picked up Subway for dinner.

Day 6 after the surgery (Tuesday) was finally the day of sweet tape release.  My follow-up appointment with Dr. Polawski took place.  They showed me the pictures from the surgery (that I will somehow find a way to put on the internet), which was pretty cool.  I was really excited about the photos.  Apparently, there is a cul de sac underneath my uterus!  heeheh.  Dr. Polawski told me what all had taken place (now that I wasn't drugged out of my mind).  He showed me the photo of the cyst on my ovary (which would explain a LOT of pain).  He showed me where he found endo and what he removed.  He told me that the biopsy revealed that it was endometrosis, for SURE.  Doc also confirmed that I could have removed the tape the day after the surgery (yeah, Teh Dad, take that).  He also told me that I could work out again, but to listen to my body.  If it hurt, STOP (I'm not very good at the listening to my body and stopping part).

Dr. Polawski also encouraged me to stay on BC until the point at which I decided I wanted to use my girl parts.  He recommended a pill or an IUD.  He remembered my IUD horror story from GTMO and said he'd be willing to try it again if I could get the IUD from medical on base.

I learned today that the cost of IUD's has been raised, but the coverage amount by Tricare wasn't increased, so doctors that give military patients IUDs are being screwed out of the price difference ($200ish), even if the patient is willing to pay the difference.  Contractually, the dr's office can't take the payment because Tricare covers 100% of the cost.  Ugh, insurance is so retarded!  (Says the girl who didn't pay a penny out of pocket for a surgery and hasn't paid a dime to a doctor/pharmacy since November 10th, 2008).

After the follow-up appointment, Teh Granny and I went by the most interesting place in Pax River, the airplane museum.  Teh Granny was fascinated by the planes we were able to walk around, she said they looked much smaller in the air.  Afterwards, we hit up the commissary for lunch, then drove by the hangar so I could show her the aircraft that I get to walk past (and sometimes into, ouch) on a daily basis.  Finally, we headed home and ate lunch.  After some laziness, I decided it was time to take Phil out for a 2 mile walk/run.  We both survived, and I did have to stop due to a side stitch 2 times.  Ugh.

-when the doctor says "move around" he doesn't actually mean go on a walk/to the store.. he means move around your house instead of laying in bed and being waited on.
-call the doctor for clarification when your caretaker insists on you leaving tape on your body for a week.

So that is my Endometrosis story.  If you have an Endo story to share or questions/comments, the comments area below is a great place for that.  I see all the comments that are entered below.

I know that was a LOT of text.. and no pictures.  And to make up for that (since the inside pictures aren't available yet), I'll share something embarrassing with you.

These are my super sexy hospital underwear.  Oddly enough, they were actually pretty comfortable for someone that was mostly uncomfortable most of the time.  Now my butt is officially on the internet and I can't blame it on the drugs.

1 comment:

  1. That hospital underwear looks better than the strange extra thick gauze underwear I got to wear at the hospital after giving birth.
    Good to see things are taken care of and hopefully stay that way!


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