Tag Archives: pelvic pain

Pieces of Me

Today marks the one year anniversary of my hysterectomy.  I am not sure how I feel about it really.  It was just a day that I lost pieces of me.  They may have been organs that were becoming dead tissue but they were still part of me.  I am lucky that my “girlie bit” organs were the only organs I lost that day.  The endometriosis had started to more to my kidneys and was all the way down covering my entire pelvic floor.

Besides the organs and other tissues they have removed from me in the last 1-1/2 years, I have realized that I have lost other pieces of me along the way.

I have lost the ability to really concentrate on knitting and have only completed a handful or projects.

I have lost my desire to get lost in a book, mainly because I am so tired by the time I pick one up that I fall asleep.

I have lost the ability to visit my parents, only 3 hours away, because I can not sit in a car that long.

I have lost the time going and doing and seeing with my husband because the pain was too intense.

I have most certainly lost friends because I can not go and “hang out” like I used to and they stopped calling to see how I was.

And sadly, I have lost real pieces of me – my personality – myself.

I am finally beginning to realize that I may not ever be without pain.  It is hard to understand, accept and move on with life but that is what I am doing.

I have been through two (not so fun & expensive) caudal epidurals.  They seem to help knock the pain down.  I will take what I can get.

I just finished a knitting project – the first in months!  I have also signed up for a knitting class that starts this weekend.  I am really excited and looking forward to it.

I got a bike that I have gone on short bike rides with my husband. It is nice to be outside pedalling around like kids in the graveyard near our house.

I have not yet been to see my parents – but I am hoping to for the holidays *fingers crossed*

I have found the friends that are truly caring.  They have been the ones that have checked and visited and called – and that is worth so much to me.

I am beginning to learn more about the person I am becoming from all of this.  I have certainly been changed by all of this.

I may have lost so many pieces of me but I thinking I am starting to take some of the pieces back – and put together  and beginning to see my puzzle of me.

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It’s a “Little” Surgery

This will be short … I just hurt too badly tonight. I went pain management this morning and met my newest doctor.

Long story short – he did a bunch of tests then started pushing around in my ouchie area. At one point he was pushing his palm so hard on it I thought he was trying to push through to the exam table under me.

He said: pelvic pain is hard to treat. Pelvic pain associated with endometriosis is even more difficult.

I thought: no shit Sherlock

I said: I’ve noticed

So, Friday we are trying nerve blocks. It’s just a “little” surgery. It will be Caudal Epidural Steroid injections.

Don’t be jealous!

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Its a Miracle!

Let me start by saying I had my dreaded doctor’s appointment at the neurologist’s yesterday morning.  I feel like I am just an after thought at this office since most people they see are dealing with things like MS, Parkinson’s, Epilepsy and so on.  Not to mention that when you call in, the staff can be less then helpful (see 7-1/2 Minutes + a Verbal Shake Down  & Take 2 and Call me in the Morning).  So, as you can imagine, my tummy was knotted up by the time I parked by car at the hospital.

I made it into the doctor’s office and went to sign in.  This is when the magic started happening.  I was pulling out my check book for the co-pay and I learn that I do not have one.  There is some kind of credit or something on my account.  Well – that is $25 that will go to the pedicure I didn’t think I could afford.  Then I went to sit and wait.  I was called by the nurse before my butt had become to warm the pleather!  As I walked toward her she said good morning and told by my dress was precious!  Hold crap – this is awesome – I am getting some first class service today.

The nurse goes to weigh me (we won’t discuss those #s) and take my blood pressure.  She says its perfect – 120/80!  Well that is just amazing – not being treated as a second class citizen does wonders!  Then it is time to go sit in the Dr’s office while he talks and takes his dictation for my case at the same time (while a bit a nerving, I always know he has his facts straight).

“You look tired, you aren’t sleeping well”  yes this is true

“Your secondary pain is helped by Lyrica – but the primary pain is still there, yes?”  yes, this is true too

“Well, lets put off surgery a few months and try pain management – I am recommending nerve blocks – is this ok with you?” YES!  YES it is, I will try anything at this point!  I just am so sick of the pain!

“We will make sure they sure they see you as soon as possible”  Holy Crap – It’s a miracle!

So – I get sent out to the nurse’s station to get all my new appointments squared away.  As I sit thinking to myself, one of the nurses is eating her breakfast… and it hits me – I left my breakfast at home.  I must of muttered something and before I knew it a nurse was handing me a cup of fruit, cinnamon roll and mini chicken biscuits.  She had me eat the fruit immediately and packed the rest for when I got to my office.

THEN they get my first pain management appointment for Monday morning.  This morning!  By this point I am looking for the “pods” because this may look like the same doctor and nurses – but these versions seemed to actually care.  It was just amazing.  I walked out into the parking deck with a spring in my step, an appointment card in one hand and a bag of breakfast goodies in another.

They are trying to get rid of my pain!  It’s a Miracle!  God does love me – and it is more than just giving us beer (which I can no longer drink).

The Torture Chair

Like a lot of other people, I work in an office Monday through Friday.  Typically, I do not go to lunch, so I am at my desk for 9 or so hours a day.  Accompanying my office desk is my office chair.  It is a high end ergonomic chair that was given to me by a co-work who was relocating to another city.  It is a very, very nice chair that has lots of levers and pulls.  Why, even the arm rests can move up and down!  It is one very fancy chair.  Maybe other chairs refer to it as a “chair’s, chair”.  All who come in the office comment on my fancy chair – and I can see the envy in their eyes.  It is fancier then what the company provides.  I am lucky to have this chair, it is a dream compared to it’s chair neighbors.

What no one knows is that this chair also has a dark side.  Some may call it an evil chair.  Read if you Dare – and then decide for yourself!

After about 45 minutes the dark side starts to show itself.  First, I notice the pain in my lower, left abdomen.  Then, my lower back starts to feel like all the bones are fused together in a lead chunk.  Next, my left hip will start to hurt like someone pulled it out of socket and shoved it in side ways.  All of this builds and builds and the throbbing commences.  Pretty soon, if I don’t get up and walk around, all of it hurts so badly that I start to feel like there is lightning going down my leg!  This chair is…. The Torture Chair!  Despite its looks and fancy levers and pull it exists to torture and maim its owner – it is a true terror!  The daytime horror!

OR, I guess, that it just feels like a torture chair to me because I am trapped in it all day during the week.  Even though I get up and walk around through out the day, the pain still hits me hard and debilitating by 3 in the afternoon.  I have found that Monday is the worst day because I have been able to rest and not forced to sitwithall my upper body weight directly pushed up my “ouchie area”.  When I am at home and able to, I lay down.  It seems to be the best, most comfortable position for me.  I have been trying to figure out a go way to make this work at the office – but short of adding a chaise lounge to my shared office – it just isn’t going to happen.  In the meantime – I am forced to livewith–

The Torture CHAIRRRRrrrrrrrrrrr!

If you don’t already now – endometriosis is a torturous bitch.

Take 2 and Call Me in the Morning

There are just some phone calls you do not want to make – even if they will lead to good things for you… I have to make one of the calls tomorrow  morning – first thing.  Well, honestly, I should have made it call this morning.  I. Just.  Didn’t.  Want. To.   Seriously – it was not going to happen once the work day started this morning.  I know I would not have the patience to get through the call(s).

Yesterday, I was in so much pain I was sitting at my desk holding back tears and trying to ignore my fuzzy vision.  I knew I just had to get home to my meds and my heating pad and then I would find some relief.  Unfortunately, the pain took quite awhile to abate.  There was a point in time I thought I would have to call for a ride to the ER for something through an IV.  Thankfully, the pain was knocked down a few notches and I could think.  I knew what did this!  I knew what caused the pain to go off the deep in….

Bending – bending is bad bad bad.  I now really know this is a huge trigger for the pain to go through the roof.  Great!  this important information for my neurologist to know.  This will help with adjustment of my meds and maybe something new to try!  This was great!  I just had to give the doctor’s office a call.  CRAP – the doctor’s office – I HATE calling the doctor’s office – any doctor’s office after the last year I have been through.

I like nurses – I really do – they have helped me out of some really tight pain jams and I love them.  I love what they have gone to school for – and what they do day in and day out.  It is something I could never do.  But it seems like all the nurses at my doctor’s offices are starting their very first day on the job with my phone call.  It usually goes like this:

  1. (Initial call) “Hi!  This is Susan I am still experiencing quite extensive pain, but I think I have found a trigger.  Oh – I can’t get in to see Dr TooBusy until the day after the Second Coming?  OK – I will take that appointment  and leave a message for the nurse… ” patiently wait and sometimes get disconnected and have to call back and then BEEP!  “Hi- this is Susan, date a birth blah, issue I am calling for, awesome revelation that I am calling to let you know about to see if it helps with my treatment.  What can I do in the mean time since I am still experiencing quite pain?  My # is blah.  Thank you!”
  2. (Return call)  Hi Susan – this is Nurse not sure what I am doing returning your call.  What were you calling about?  (ME = I repeat exactly what the message stated).   NUSRE= Oh, well let me pull your file and give you a call back.  (Keep in mind I have had 3 surgeries, several procedures and countless tests done over and over.  I am sure my file needs its own room at this point).
  3. (2nd Return Call) Hi Susan – this is Nurse not sure what I am doing again.  I pulled your file and see that you have endometriosis and neuropathy.  Are you still taking the Lyrica and Tramadol?  Ok, well, you still have pain?  (Me= repeated what I said in first conversation that was repeated from the voice mail I left).  NURSE = Oh, you are still in pain?  Ok, let  me talk to the doctor and call you back.
  4. (3rd Return Call – If I am lucky, the same day)  Hi Susan – this is Nurse not sure what I am doing returning your voice mail.  (ME = I explain we have already spoken twice and repeat for the 4th time that day what I am calling about).  NURSE = Oh, that’s right!  The doctor has already left for today.  (It’s 3pm).  I will have to call you in the morning – but in the meantime continue with your meds as normal.
  5. (4th Return Call – Close to afternoon the next day)  Hi Susan – this is Nurse not sure what I am doing again – I spoke with the Dr and wants you to come in to see you and maybe more nerve tests.  (ME= I explain when my appointment is).  NURSE = Oh that is a long time from now, let me talk to the doct…. (phone being snatched)
  6. Susan – this is Doctor blah blah – can you come in tomorrow?  Ok – see you then.
Can you see why I don’t want to make this call?  I think they should give you Valium to gear up for when you have to call them.. It is like jumping through hoops of fire when you feel like shit to get some help.  So, I can’t wait to call tomorrow morning!  Thank God tomorrow is Three for Thursday!
Take 2 and call me in the morning!

Three for Thursdays! 8.4.2011

You know when you are feel badly, there is precious little that will bring you comfort.  This week’s “Three for Thursday”  is about the things that bring me comfort when I am feeling my most worst.

Let me just say that, typically, I am feel my worst in regards to what the endometriosis or the (supposed) neuropathy are doing to me.  I guess I could also throw in the laundry list of drugs and assorted medications they put me on and what they do to me.  Well, for that matter – I guess to cover all bases – it would be what the continual pain, lack of sleep, drug trials, doctor run arounds, emotional drain do to me.  Yesterday was a combination of everything when I thought up this week’s list.  And yes – my husband is really ALWAYS #1 on every list – but I thought I would change it up a bit this week.

Here we go!

#1 – My puppy Pixie.  She seems to know when I am feeling my worst and always just wants to cuddle and make be feel better.  She will just lay there and let me pet her to get my mind off the pain.  By this point I am surprised she has all her fur on both sides – hopefully we won’t be calling her “Baldy” any time soon.

#2 – My heating pad.  Any girl with endo will tell you a heating pad is one of the most important items you need to go into battle – other then your spork!  I am currently padding with the XL Sun Bean with the “Superr Sofft” plush washable cover.  Its pretty fancy, just like me.

#3 – My bed -or- as I typically refer to it – Bed.  Sometimes nothing feels better then just laying down.  I know that the pain in my pelvic region is aggravated by 2 things – sitting in a chair for long periods and standing.  Lucky for me my desk job does not require either.  Caught me – that’s a big fat lie.  So you can see why I like Bed so much.

Below is a picture of this week’s Three for Thursday.  What are things that make you happy when you hurt?

I’ve Been Downgraded

I have been upgraded to 300mg/day Lyrica to help with the pain…

Lab work came back that I have low vitamin D3 and I now have a fancy supplement to help with bone strength and hopefully the pain…

I have done entirely too much physically that has caused too much pain…

And now feel as if I have had a spork downgrade… to plastic.

I can still fight endometriosis with my plastic spork – I will still fight.

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Waging Weight War

Seriously, how many battles can a girl fight – at once -with a spork? Apparently it is at least four:

  1. Dealing with Endometriosis
  2. Dealing with neuropathy & pain from the above
  3. Recovering from a serious hysterectomy from the above
  4. Weight gain from all of the above!

I have been diligently dealing as best I can with numbers 1-3 but I am having some serious issues dealing with #4. I have been blessed all my life in being relatively slim and fit. I can say that this is the absolute heaviest I have ever weighed in my entire life. I have heard all the arguments from people:

“you don’t look heavy”

“you were too skinny”

“your body has been through a lot”

“you are within your ‘normal’ weight limit”

And I can understand were each of these comments comes from. Trust me – I realize a year ago I was in a real fight, not even knowing it. I also realize that my body is dealing with the introduction of hormones + other drugs to assist with the pain, the hysterectomy damage itself as well as repercussions from quitting smoking – for good. But all of that is of little comfort when I try to put a dress on from two years ago and I rip the zipper try to get it over my hips.

Its just that in my 40 years, I have become very accustomed to being in control of my body, the master of my own ship so to speak. It was always in a healthy fashion I took control; first it was gymnastics, then cross country running for years and years and most recently, belly dancing. I have always been in shape and have had excellent muscle tone. I have also always known my body and what it can and can not do. Now I am 30 pounds heavier and faced with “bulbous belly”. If I stand and look at myself naked I have no recognition to the body I see before me. Due to the pain of endometriosis and the resulting neuropathy I find it impossible to turn to my exercises of old – walking and crunches/calisthenics. It is also difficult to look for new exercising options when I am so wiped out by the time the work day is done. Seriously, I can barely Google let alone drag my ass to exercise somewhere!

So now I am left with walking around lakes and museums once a week with my wonderful hubby + as many crunches as I can do until my eyes water. Again, how many battles can a girl face at once? Anyone have suggestions for me? I am all eyes!

my nemesis

Nothing Happy Can Follow the Word Infestation ….

Have you ever noticed that there are some words that are up to no good?  You just know when you are reading and run into one of these words that things are about to go downhill, fast.  Everyone has their own mental list of these words and today I will share one of mine with you:

Infestation

Infestation has long been associatedwithinsects in my brain.  Maybe it is because they kind of rhyme together.  Maybe it is because they both begin “in”.   Who knows – the simple fact of the matter is that infestations have never been linked to happy, fluffy, sun shiny things.

Have you ever heard of a cupcake infestations?  (I could only hope!)

How about a money infestation?  (THAT would be nice!)

Ever had an infestation of good health?  (I think not!)

This all leads me back to think about endometriosis.  Once you have a basic understanding of what it is – you know that it is just tissue – multiplying in the wrong areas – eating up available real estate in a body cavity.  THEN, if you suffer from it, and really think about it, you think INFESTATION. 

Endometriosis tissue is not supposed to be anywhere but inside your uterus – and for sure not anywhere that it causes pain, scar tissue and legions.  It is infesting other parts of your body and even though extreme measures are taken to remove all of this tissue – if there is just one little speck left over – it can again infest your body.

You would thinkwithall the pest control ads and sprays that someone would come upwitha way to control this infestation… or at least give those who suffer from in a money infestation too!

Becoming Darwin’s Dead End

So, it became painfully (pun intended) apparent that the surgery did not fix the issue about 10 days after it was performed.  Several weeks later I had an appointmentwithmy doctor to get the down and dirty on the situation.   Using pretty graphic pictures from surgery as a reference, the doctor explained that my uterus and ovaries were literally bondwithscar tissue to a portion of my large intestines – and in turn strangling it.  He went into detail how he tried to free my girlie bits and remove scar tissue but he admitted that he needed another to surgeon help him, though none were available at that time.  He then decided to take out the two large legions he could see and save the rest for later since he knew I would need another surgery.  He asked if my husband and I had children (no, and I was 39 at the time) and then he had to discuss what the options were… unfortunately, there were only two;

  1. Have a minimum of three surgeries (one to remove part of my large intestines) + several rounds of a strong hormonal drug called Lupron to try to save my girlie bits to see if the girlie bits would still be viable
  2. Have a complete hysterectomy and oophorectomy, removing all the scarring, legions and cysts he could see along the way

Let me just say that my particular pain can be described as having a kidney stone stuck in my bladder.  I know this because it has happened.  So yes – it hurts like a mother ______.  To get rid of this pain I would do just about anything.  It was really a no brainer for me at this point since I had such pain and wasn’t sleeping – take it out, slash and burn – leave no organ unturned – get it out of me!  Below is what a friend said to me to make it easier:

“In my opinion, if you’ve got a great partner in life you’ve got all you need.  I also believe that we coupleswithout children lead an overall happier and more stress free life. (don’t tell anyone I said that.)  There’s a reason God made fertility peak at the ages when people are still naive enough to think they know what’s good for them.”

I scheduled my surgery and begin the wait.  I got more pamphlets and a login for a website to watch a video on what to expect (my hubby and I died at some of the descriptions “Your cervix is the doorway to your uterus”).   I did a bit of searching and found the Hyster Sisters (http://hystersisters.com).  It is a wonderful site that taught me a lot.  They even had lists of what to ask your doctor pre and post operation.   So – I knew EVERYTHING I needed to go get the girlie bits out… this was so going to be a breeze…