How Can Emptiness Be So Heavy?

It has been over a year since my last update and a lot has happened in this last year.  I wish more than anything that I was finally typing out a blog post to share exciting and uplifting news, but that just isn’t the case for us yet. 

In my last update (June 2018), we were looking at many different options on potential paths to take to parenthood.  Those were put on hold for several months because later in that month, the endo specialist that I see in Georgia recommended another excision surgery, which I had on September 17, 2018.  In the two years since my first surgery with them, my endo had progressed back to Stage II.  My doctor said that we could try another 3-4 rounds of less invasive fertility treatments before moving onto more invasive methods since they were able to unblock my fallopian tube during surgery.  We met with my local doctor in town to get a baseline ultrasound in December 2018 to see if I was cleared to begin treatments again.  Here is a brief overview of what the subsequent months entailed…

December 2018 – Baseline ultrasound showed a 3cm cyst, so I had to take a month of birth control to shrink the cyst.

January 2019 – Took Letrozole and HCG shot … Negative results.

February 2019 – I took Clomid and we did an IUI on Valentine’s Day.  I received faint positives on pregnancy tests from February 23 – 27 but bloodwork showed they were false positives.

March 2019 – I took Clomid again but couldn’t do another IUI as planned because my doctor was out of town.  My cycle was a couple weeks late this month, and I had to take Provera to get it back on track.

April 2019 – Did Clomid again and still couldn’t do an IUI because my doctor was out of the office during the needed timeframe again.  Negative results.

May 2019 – I called my doctor on May 23 to tell him I was having a lot of pain on my right side and some frequent nausea.  He did an ultrasound the following day and found a 6-8cm cyst that he felt needed removed right away.  I went in for another laparoscopic surgery on May 25.  He ended up finding 3 additional cysts and told us that my fallopian tube is “clubbed”.   He said we would need to move onto IVF to conceive and also noted that he believed donor eggs would be the path we would end up needing to take.  He also confirmed that my endo has returned, although he said it “doesn’t look too bad”.

Although we had gotten similar news last year after getting bloodwork done at a fertility clinic, it was still devastating to hear this news upon waking up from surgery.  It made it very real and very clear that we had exhausted all of our less invasive options and would need to move onto more invasive and more costly treatments.

We heard about a fertility clinic in New York that has great success rates and is much more affordable than most other clinics (about $12,000 as opposed to $28,000).  We called to get a phone consult with them, and the soonest they can get us in is March 2020.  After many discussions, we decided we would go to the clinic in Denver to get all the necessary testing done ASAP to see what our chances of success are with IVF.  This way we would have all the available information and be able to make a more informed decision on our next steps.  This testing has to be completed between days 5-13 of my cycle.  Our testing was scheduled for July 2… however, we had to cancel the appointment because my cycle is now 14 days late.  For no good reason, of course.

I am taking a medication to hopefully get things back on track and allow us to go to Denver to get the testing done.  In the meantime… we wait.  

I try very hard to remain positive and keep believing that things will work out the way they are supposed to.  But I also think it is important to be honest and REAL about the pain of infertility.  I’ve said over and over again that I share our story (with my husband’s full blessing) because I want to help other couples know they aren’t alone.  I would be doing them a huge disservice if I didn’t talk about the frustration, pain, shame, hopelessness, and devastation that comes along with infertility.  

Are there days where I feel like giving up?  Absolutely.  Are there nights I silently cry myself to sleep wondering why my body is broken?  More times than I can count.  As I type this blog, tears stream down my face.  Infertility is an extremely intimate and vulnerable topic to discuss, but I will continue to openly share my story to those who care enough to listen.  Maybe you are struggling too (I am ALWAYS here if you need to talk!)… maybe you have a friend who is struggling and want to understand their journey better (God bless you)… and maybe you read this and think these things should be kept private (I respectfully and EMPHATICALLY disagree with you).  Whatever your reason for following my journey, THANK YOU.  Infertility should NOT make women (or men) feel embarrassed or shameful, but it does… far too often.  There is a taboo surrounding infertility that makes it hard to talk about which exacerbates the feelings of loneliness and sadness.  

If you have a friend who is struggling with infertility, here are a few things that are generally said with the best intentions but are not helpful (and sometimes very hurtful): ((Everyone is different on how they feel about these phrases, but in my experience, these are pain points for a lot of women.))

Instead, it is more helpful to say things like: How can I support you? … I’m sorry you are going through this. … OR … say nothing and just be there for them.  

As for David and me, we are going to keep moving forward and exploring our options.  Hopefully we are able to get the testing done in the next couple weeks to have a better understanding of our options, but we are open to becoming parents through IVF, adoption, or fostering children who need a safe place to land. ❤ Whichever path ends up being the right one for us, we will continue sharing openly about the process and are always willing to answer questions and/or help others in any way we can.  

Thank you for loving us enough to follow our journey and wade through the craziness that is our path to becoming parents.  Although my hope sometimes falters, it hasn’t been lost.  ❤

 

The Journey Continues…

It has been about 7 months since I updated last.  Part of me can’t believe it has been that long but another part of me feels like a lifetime has passed.  Our journey continues to be one full of ups and downs, and although it sometimes feels like the hard hits keep coming, one thing stays consistent – our hope and determination that we will one day have the family that we so desperately want. 

In December 2017, my OBGYN found another endometrioma on my right ovary.  That suspended our fertility treatments for another two months until it dissolved.  In February 2018, my doctor suggested we consult again with the fertility doctor in Denver, but agreed to do one last round of Clomid.  He said the fertility medications were starting to work against my fertility, so he didn’t think we should continue the fertility treatments after this last attempt.  Naturally, it didn’t work.

We consulted with the fertility specialist in Denver over the phone, and he suggested we visit for another day of testing (the same testing we did there in 2015).  We set the date for the end of March.  He also asked me to get Day 3 blood work done to get a better idea of what was going on.  On March 21, he called to say that my blood work came back with “terrible” results and advised us that we had less than a 10% chance of ever conceiving with my eggs – even with IVF.  Unless we had money to “throw away”, he suggested not doing IVF unless we were willing to use donor eggs.  Essentially this phone call confirmed to me that

I will never have a biological child.  

Those words racked around in my brain for weeks afterwards.  Sometimes they still creep in and bring me to my knees.  Don’t get me wrong… exploring other avenues of becoming parents has never been off the table for us.  We know without a doubt that no matter what path leads us to parenthood – we will love that child the same as we would if we conceived and carried that child in my own womb.  However, there is a unique pain in realizing that you will never look into the eyes of a child that is genetically half of each of you.  Although we know those words do not mean we won’t eventually be parents to the child we were meant to love, I needed some time to grieve this loss.  So, we cancelled the one-day workup with the fertility clinic until we could discuss our options and what we envisioned for our family.

In April, we consulted with an immunologist in New York who said he believed he could help fix the “toxic environment” caused by my endometriosis that would significantly increase our chances of conceiving through IVF with my own eggs.  This was great to hear, but it adds quite a bit to the already ridiculously expensive process of IVF – with no guarantees.  We also have done a lot of research and discussion around adoption, and it has become something we both have decided is a very real option for us.  So we were back at a crossroads with four options that we have looked into and considered.

1. Work with the immunologist in New York and attempt IVF with my own eggs.

2. Go to Denver and attempt IVF with donor eggs.

3. Work with an adoption agency to start the process to adopt an infant.

4. Look further into the foster-to-adopt option.

Each of these options has the potential to make us parents and each of these options has the opportunity to break our hearts.  Rather our future child comes from my womb or from our hearts, there won’t be a home that will love them more. ❤

 

Although I still grieve for the path to motherhood that I had envisioned, I am beyond blessed that I have a husband who walks this path with me without a single faltering step.  We have the most amazing family and friends who love and support us, and they understand our desire to share this journey as a way to hopefully make a positive impact out of an otherwise difficult journey.  We do our best to remain positive and hopeful, but this process is one full of a lot of dashed hopes, tears, fear, and uncertainty.  We share our journey publicly as a release for ourselves, to educate others, and to hopefully help other couples feel not so alone in this potentially isolating process.    I cling to the hope that there is a purpose for this pain.  One day all of these “no’s” will lead us to the most beautiful “yes”. ❤ 

As always, thank you for your love and support through it all.  We are so fortunate to have so many people in our corner.  You make it easier to share our story.  If you can relate to our story in any way and could use some extra support, please feel free to reach out.  You are not alone.

Jen

 

 

Our Untold Story

It has been 366 days since one of the best days of my life… and 358 days since the worst.  

On November 21, 2016 – after 5 years of infertility – we found out we were…  

 

 

PREGNANT!!

 

 

 

This was the first month we had tried to conceive after my endometriosis surgery in July.  In the days leading up to these pictures, I was CERTAIN that it hadn’t worked.  That Friday, I had called my doctor to ask what our next steps would be because I “knew” I would begin my cycle that weekend.  My nurse told me to wait until Monday and call her either way.  

That Sunday, as my sister-in-law/best friend and I sat on the couch at my house, I told her how devastated I was that it hadn’t work.  She kept telling me that there was still hope that I was in fact pregnant, but I was positive my cramping was indicative of my typical cycle.  As I went to bed that night, the cramps intensified, and I cried myself to sleep.

That morning I quietly slipped out of bed to confirm I had been correct… except confirmation hadn’t come.  I reluctantly decided to take a test, but I decided if by some small chance it said I was pregnant, I would not tell David until it was confirmed by a doctor. 

I was so sure I wasn’t pregnant that I hadn’t even put my glasses on prior to going into the bathroom… so as the digital test was calculating, I was impatiently squinting at the small screen.  When the word PREGNANT came up on the screen, I literally couldn’t breathe… but it had a little hour glass in front of the word, so I didn’t get my hopes up.  Honestly, I was thinking, “I’m going to sue this damn company if that hour glass turns into the word NOT.”  Sure enough… that hour glass turned into the estimate of how many weeks along I was.

My previous plan went out the window… there was no waiting to tell David.  I ran into the bedroom where he was sleeping, flicked the lights on, and screamed his name.  He jumped up (and later told me he thought someone had broken into the house…oops!), and I screamed, “I think that test says we are pregnant… please come look at it!  I’m not wearing my glasses!”

As he picked up the test, he said the words I never thought I would hear… “We are pregnant!”.  I fell into his arms and cried like I have never cried before.  The pictures above were only taken because he insisted… and I am so glad he did.  ❤ I didn’t know that would be all we would have left to commemorate the best day of our lives.

It was the Monday before Thanksgiving, so we planned to reveal to our families on Thursday. Although I know that most people wait to tell until it is “safe”, our situation was different than most.  Our families and friends had been through this journey with us every step of the way.  We wanted to share with them right away.  It was an incredible day.  That day, we even found out my sister-in-law was pregnant too!  Life couldn’t have been better.

That Saturday, I had a little spotting and called to talk to my nurse.  She said a little spotting was normal and to not be concerned.  My numbers had looked great on my blood work, and I just needed to relax and believe it was finally happening for me.  On Sunday, I KNEW something was wrong, but I didn’t want to believe it.  I vividly remember wandering the baby aisles in Target and thinking if I found the PERFECT item to buy my baby, maybe they could stick around.  An irrational thought…I know.

Monday morning, I cried the entire way to work.  My chest was no longer sore as it had been the last week, and I couldn’t shake the feeling something was wrong.  I talked to my baby the whole way to work… pleading for him/her to hang in there.

Once I got to work, I told myself that if the spotting got worse, I would ask my teaching partners to watch my class, and I would go to the doctor.  Prior to the first bell ringing, I stopped in the bathroom after having some cramping.  It was pretty evident this bleeding wasn’t normal during pregnancy.  I tried to compose myself, but as I stepped out of the bathroom, I saw one of my teaching partners coming down the hall, and I couldn’t hold back the tears.  I whispered to her that I thought I was miscarrying, and she helped me to the principal’s office.  He immediately had me call my husband, who said he would come pick me up.  After talking with my nurse, we headed to the ER.

It only took a pelvic exam for the ER doctor to tell me that he was pretty certain I had miscarried.  They did an ultrasound to confirm.  I had never felt so empty.  I took the next day off of work and honestly can’t even tell you what I did that day.  It’s a blur.  What I do remember is crying myself to sleep for more nights than I can count.  Breaking down in the shower, hiding tears in the store, putting on an “I’m fine” facade.

It has been 358 days since our baby went to heaven.  For a while, I felt like maybe I didn’t have a right to grieve as hard as I did…as I still do.  Our baby wasn’t even around long enough for us to know if it was a boy or a girl (although we both feel very strongly that we were having a girl).  We never heard the heartbeat… our appointment to see our baby for the first time was supposed to be December 26.  We didn’t make it that far. 

Thank God for our amazing family and friends who didn’t for a minute minimize our loss.  

We started trying again in January…

*8 rounds of fertility meds and ultrasounds

*1 unsuccessful IUI

*2 rounds of birth control to shrink a cyst that wouldn’t go away otherwise

Still no luck.  I just received word on November 9 that the cyst is gone, so we will start trying fertility meds again toward the end of the year.  Thank God for my supportive husband who is here with me every step of the way.  

It took me an entire year to be able to write this blog because I wasn’t sure I could articulate my feelings.  However, I have always said that when you’re ready, sharing your story is a powerful and necessary thing to do.  When you share your struggles, you let other people know they are not alone.  I’m sure there are other women out there who have had early miscarriages that kept their grief inside for fear people wouldn’t understand – or worse – would minimize it and tell them they didn’t have a right to feel the way they did.  But you did… you do.  Grieve.  It doesn’t matter if you held your child in your womb for a day, a week, a month, or 9 months… you suffered an indescribable loss.  You have a baby that you never held in your arms, but you held in your body… no matter for the length of time. 

We became parents… to a beautiful angel baby.  Although I wish I could have held her in my arms, she couldn’t possibly have been more loved for the short time I carried her in my body.  

 

 

 

 

 

 

Thank you for caring enough to share in our journey.  If my sharing our story helps anyone in any way, it’s just another way that this experience has a purpose… and I search for a purpose in all of this every day.  ❤ 

The New Chapter

18 years ago, I started having cramping that was unbearable most months.  Over the next several years, that pain went from excruciating pain that came around monthly to a pain that never fully went away.  Some days it was just a dull, aching, never-ending pain – others it was that same excruciating pain that nothing seemed to relieve.  

As those of you know who have read my previous blog posts, my life then became a flurry of doctor’s visits, ER trips, surgeries, etc.  Well, NO MORE.  As of Monday, July 25, 2016 – I heard the words I NEVER thought I would hear.  “You are 100% free of endometriosis!!”  I couldn’t believe my ears, and I still am having trouble grasping this new reality!  I’ll do my best to put this latest news into perspective for you through the haze of my post-operative medications. 😀

Monday morning, David and I met with my new surgeon.  He patiently and thoroughly explained the procedure I would have later in the day.  After hearing his explanations of each part of the procedure, I made the decision to say yes to the PSN (pre-sacral neurectomy) that I expressed my concerns about in my last blog post.  Without going too far into details and losing you, let me just say that I have never been to a doctor’s office where EVERY SINGLE PERSON there was kind, compassionate, friendly, and really invested in helping me heal.  It was unbelievable!

The hospital staff was the same way.  Absolutely amazing.  The surgeon called my husband throughout the hours of my surgery to update him and then took the time to sit down with him afterwards and thoroughly explained everything that he did.  The next morning, the surgeon stopped by and saw me at the hospital as well.  Here is some of what he said!

• You are 100% endo free.  (Yes – you read that right!!!!)
• There is a 5% chance that the endo will return.
• He didn’t end up doing the PSN because my uterus felt firm and seemed good – which means I most likely do not have adenomyosis after all! 🙂
• He did not have to do a bowel resection!! He was able to get the endo off of my bowels without a full resection!
• He did, however, have to do a dissection of my urethra.
• My bowels were adhered to other organs, so he was able to remove the endo, scarred tissue, and adhesions and put them back where they belong.
• He removed the left ovary and tube.
• The right tube was blocked with endo and blood – he cleared that out and made sure it would be optimal for pregnancy.
• He found endo and cysts on my small bowels.  This was GREAT news for me (weird, huh?) because he said if there was something going on with my small bowel, it could possibly explain my gastroparesis.  SO, there is a chance that this surgery will also have helped my gastroparesis!!!!
• With my Stage IV endo I had prior to this surgery, I had a 1%-3% chance of getting pregnant naturally.  Now that I am ENDO FREE, I have a 50%+ chance of getting pregnant naturally, and that number increases drastically with IVF.  How amazing is that?!

There was a lot more to the surgery than that, but those are the biggest points that we discussed in the hospital.  On Friday, I have my post-op appointment here in Georgia and they are going to go through the surgery for me and explain it all.  They also will give us the pathology reports, and they gave David pictures from surgery.  After that appointment, I will update a bit more.  I am still really tired and sore at the moment, so I’m going to end here.  I just wanted to give you the basic updates because I have had so many people message, text, call me for information, and it is hard to keep up with it all. 

I cannot begin to express how overwhelmed I am by all of the love and support that I have received – especially this week.  Thank you doesn’t seem like it does my feelings of gratitude justice, but THANK YOU, THANK YOU, THANK YOU.  It means more than you’ll ever know!  I need to go take another nap now, but I will do a better job writing later this week when I hopefully will be forming my thoughts better. 😉

 

Take a Chance to Make a Change

  This quote really hit home for me when I read it.  For several years now, I have considered the idea of traveling to the Center for Endometriosis Care in Atlanta, Georgia to see the real specialists for my Endometriosis.  However, I ALWAYS found an excuse to not look further into it.  Time. Money. Logistics. FEAR.  Fear that I would look into it and not be able to make it work.  Fear that I would actually end up making it work logistically, but it wouldn’t reap the benefits that I envisioned and would be a waste of time and money.  But maybe – maybe the only thing standing between me and the life I had always envisioned was expelling this fear and taking the chance.  So, on March 9, I sent in my online registration with the CEC and received my welcome email a few short hours later.  After the initial email, I was already set slightly more at ease.  The nurse who emailed me was KIND, CARING, and UNDERSTANDING of my disease…because it was her disease too.  Her story with endometriosis was very, very similar to my own, and I could feel the compassion and desire to help pouring from her personalized email.  The following day, I received an email from the surgeon himself – urging me to email any questions I may have.  Seriously – that happens??  These medical professionals are states away, yet they managed to provide me with more personalized care for my endometriosis than I had ever received before!

I emailed the surgeon back and asked about the odds of this surgery also helping my gastroparesis.  He responded back 3 hours and 23 minutes later.  Wow.  Sadly, he said that it is unlikely that this surgery will help my gastroparesis unless the cause of my gastroparesis is due to an obstruction from my endometriosis.  However, he also used the phrase “get you endo-free”… I cannot even explain how seeing those words in an email from this renowned surgeon made me feel.  HOPEFUL would be the best way to describe it. Each and every time I have emailed either the surgeon or the nurse with questions or concerns, they have responded within HOURS.  Talk about making a patient feel cared for!

On April 4, I spoke with the surgeon on the phone.  He had a chance to review all of my medical records, and it was evident that he did so thoroughly.  This was the first time I had talked to a medical professional for the first time that didn’t ask me basic questions that they should have known if they had even glanced at my chart.  He didn’t ask me ONE question that he could have found the answer to in my medical records or my thorough registration packet.  Here is what he had to say – the best I understood it: *This may be TMI for some people, so if you don’t want the gory details, you may want to skip the bulleted list! 😉 

• It was apparent from the records of my surgery in 2012 that my bowel was adhered to my uterus.  This is causing a lot of the bowel issues that I suffer from.
• My left ovary (you know, that strange regenerated one! haha) is adhered to my abdominal wall.  This area is a bed of nerves, so it pretty much just grinds into my nerve bed every time there is any inflammation going on – especially around ovulation.  This explains the excruciating left side pain that I get monthly.
• I also have another 4cm endometrioma on my left side.  Those dang things just can’t leave me alone!
• His plan is:
  • Try to go in as minimally invasive as possible and remove adhesions and “put the organs back where they belong”
  • Remove the left ovary (AGAIN) – It isn’t thought to be functioning anyway, so it isn’t helping my fertility at all.
  • Also remove the left tube
  • Remove the endometriomas/cysts from my right ovary
  • He doesn’t see why he can’t preserve the right ovary and tube.  He will flush the tube and try to make it optimum for conceiving after surgery. 🙂
  • Will do a hysteroscopy to check for polyps in my uterus to help maximize chance of conceiving.
  • Check my cervix and tube as well.

Okay – that is the basic stuff that I pretty much knew they’d be doing.  Here’s the harder stuff that I didn’t quite see coming.

• The constant pain in the middle of my abdomen is most likely coming from my uterus.  He believes that I have adenomyosis, which in short, is endometriosis INSIDE of the uterus. Yay – ANOTHER diagnosis.  If you’ve been reading my blog for a while now, you know that one of the most popular myths is that endometriosis is lining from the INSIDE of the uterus on the OUTSIDE of the uterus.  REMEMBER – THIS IS NOT TRUE.  It is SIMILAR to the lining in the uterus, but it is NOT the same thing.  Adenomyosis is endometriosis inside of the uterus, so that theory doesn’t even make sense.  Anyway, I have heard of adeno, but I was never diagnosed with it.  Sadly, the cure (unlike with endo) for adeno IS a hysterectomy. 😦  Now, the doctor at the CEC knows from my registration packet that I do not want a hysterectomy and am still hoping to have children naturally.  So here are my three choices in regards to the adeno:
  1. Have a hysterectomy — NOPE.
  2. Have a procedure done called a Pre-sacral Neurectomy (PSN) – This is where they cut the nerve that goes to the uterus so that I can’t feel the pain anymore.  Sounds great the 80% of the time it is successful.  The other times, the nerve also connects to your bladder, so I wouldn’t know I had to go the bathroom until it became an emergency.  Sounds fun, huh? There is no way for them to know if it connects to the bladder prior to doing the PSN.
  3. Do nothing in regards to the adeno for now and continue to deal with the daily pain from the adeno until/if I have children and then give in to the hysterectomy.
• I can’t tell you what I plan to do yet in regards to the adeno because I have not decided between options 2 and 3 yet!  
• The doctor does believe, from my symptoms, that I have endo on my bladder.  However, he does not believe it is invasive bladder endo (which means it has gone inside of the organ) because my bladder symptoms are mild and invasive bladder endo is rare.  He will scope it just to make sure.  He can remove the endo from the outside of the bladder without any foreseeable issues.
• He does, however, believe that I have invasive bowel endo.  Remember, that means that the endo has gone inside of my bowels.  To treat this, he will most likely need to do a bowel resection although he won’t know for sure if he has to do one until he is doing the surgery.  For the bowel resection, he would need to cut off the diseased parts of my bowels and rejoin the normal ends.   This will require a 4-5 day hospital stay.
• I have mild symptoms of endo on my diaphragm as well.  He will scope and check that out also.

Still with me?  Now do you see why I decided to make this a separate post than my last one? 🙂 This is why having this blog is so helpful.  Can you imagine repeating ALL of that information to the people who would like to be updated?  Just my immediate family is quite large, and I’m blessed to have so many other people in my corner as well! ❤ 

My surgery is scheduled for July 25.  It is expected to be about a 5 hour surgery.  David and I will be in Georgia for the week, and my mom, dad, and 3 sisters are all traveling there from Ohio to be with us as well.  I am nervous, excited, scared, hopeful, AND fearful of how this trip is going to end.  It wasn’t an easy commitment to make, but I can no longer “push through” and try to make do with my quality of life right now.  This is my shot, and I have to take it.  

Thank you to everyone who has asked about me and sent words of encouragement.  I cannot express how much your thoughts, prayers, and kind words have helped me to make this decision AND feel good about it.

The surgery recovery time is 90 days, so I have decided to join the 21 Day Fix Extreme challenge group I was invited to join.  It is led by the CEO of Beachbody and Autumn Calabrese – the creator of the program.  I figure I might as well get in as good of shape as possible before going under the knife. 😀 Haha.  Turns out one of the symptoms of adeno is weight gain that’s hard to lose.  Helps explain some of my weight struggle more recently!

If anyone wants to do it with me, let me know.  I can use all of the support I can get! 🙂 

 

Well Planned is Half Done

It’s been several months since I’ve written an update…apparently my resolution to update as things happen and not months later hasn’t taken hold yet. 😀 As usual, a lot has happened and changed since January.  I’m hoping that, although things haven’t gone as I’ve wanted them to these first 6 months of the year, that things are going to be better by the end of this year than they have been for me in the last 19 years!

In my last post, I had told you about starting pelvic floor therapy and the possibility of getting into a new doctor in town.  Well, I am no longer in pelvic floor therapy until I can get my chronic pain under control because my therapist said that the intensive therapy will not permanently help until I do not have the cause of the pelvic floor dysfunction present and hindering my progress.  For now, I just have some exercises to do at home to try to help ease some of the pain.  On a brighter note, my therapist called in a favor to that new doctor in town for me, and on February 18, David and I went in for my initial consultation.  He did not do any tests, but he reviewed my records with us, and he said he would try giving me Letrozole and monitoring me closely to see if we could conceive naturally.  Our plan was to take one cycle of Letrozole and try naturally, and if that didn’t work, we would try another round of the medication but with another IUI.  With that plan in place, I started the medication.  I was stressing out because David was set to leave for PA the day after my ultrasound appointment that would let us know the status of the effects of the medication and impending ovulation.  What I didn’t know was that this was the least of my problems.

Shortly after starting the medication, I started to feel a lot of pain on my left side.  This can be somewhat unusual for me, as my most frequent pain is in the middle of my abdomen as well as on my right side.  On March 7, I went into the doctor’s office for a follicle check ultrasound.  I let my doctor know about the unusual pain in my left side.  Once he uttered the words, “This is strange…” and told the nurse to come get a closer look, I knew this cycle wasn’t going to go as planned.  Not only did I have 3 small endometriomas on my right ovary (again!), but I had a hard mass on my left side that the doctor said he would assume was endometriosis, but he wasn’t sure.  It is completely adhered to my uterus and my left ovary (you know – the one that grew back!).  He told me to come meet him in his office for a chat.  That’s never good – and this time was no different.  He proceeded to tell me that for my safety, he needed to suspend all further fertility treatments and that he recommends I have surgery ASAP to remove the mass and endometriomas and clear out as much of the scarred tissue, adhesions, and endometriosis as possible.  If I had that done, he would consider trying more infertility treatments.

This was devastating news.  It was apparent that I wouldn’t be getting pregnant any time soon – and the mention of another necessary surgery was overwhelming.  This will be surgery number 7.  7 surgeries in the last 7 years.  Ironic.  He said he would recommend that I pursue the Center for Endometriosis Care in Georgia because if he tried to do the surgery here, it would be a major surgery not only internally but externally too since he doesn’t have the robotic technology to do it laparoscopically like they do in Georgia.  Just like with the Mayo Clinic, I was now facing unfamiliar doctors in an unfamiliar place with frustrating logistics to consider.  Back to square one.

Are you still with me? I know this is a lot of information!  I did go on to talk with the doctors in Georgia, and I will explain all of that in my next post.  I PROMISE this one will happen soon and not 5 months from now. 😀  

Some days, I feel like the fight has completely been drained from me.  Other days, I remember to count my blessings and push through.  I had this interesting conversation with members of my family recently.  I hear from people A LOT who start to confide their struggles to me, but then pause and say, “I know I shouldn’t complain about this because you have it SO much worse than I do…”.  As I said to my family recently, there are sadly MANY, MANY people who have it way worse than I do.  Way worse.  And while I admire their strength and cannot imagine being in their shoes, the fact that they have a different struggle than me doesn’t make my journey any easier.  Just the same – just because I might have constant pain in my abdomen, and you are having a few bad days, doesn’t make your bad days suddenly vanish.  Your pain matters.  Your struggle matters.  Life isn’t a competition of who has it worse.  Let’s support each other.  Lift each other up.  Let’s listen when a friend needs someone to listen, and let’s not compare our struggles.  Life is hard enough with all of the unexpected twists, turns, and challenges.  Let’s not add to this by also adding in unnecessary competition.  Instead of comparing bad days, my goal is to share this very personal journey of mine in hopes that someone can relate and maybe learn something along the way.  There have been many times I have not posted updates because I worry that people will judge me or feel like I’m looking for sympathy.  Well, judge away – and I do not want any sympathy.  What I want is to share my story and help other people not feel alone.  I had a coworker tell me that her cousin’s daughter was recently diagnosed with endometriosis.  While this news breaks my heart, it renewed my purpose in sharing this story because she said that she would have never known to suggest to her cousin to ask about endometriosis had she not read my blog.  Had this little girl not been diagnosed young and now know to look for educated doctors who do not spread the myths that so many do, she may have spent all of her teen years as well as her twenties searching for proper treatment.  She may be 29 years old and finally heading to Georgia to meet with REAL specialists of this damn disease.  THAT is why I continue to write.

Better Things Are Coming

These last few days, I have been reflecting a lot on 2015 – as people tend to do at the beginning of a new year.  The last few years, I have ended my year on a note filled with frustration, anger, and sadness.  This year, I have ended my year with small amounts of those emotions, but mostly – GRATITUDE and HOPE.  Although my health is not nearly where I hope for it to be by the end of 2016, I feel like I have FINALLY made some improvements in the level of care I am receiving.  Because those of you who read my blog do so (I assume) because you care and/or are interested in one or several of the chronic illnesses that I battle daily, I will start with a quick update on each of these illnesses and what I am currently doing in regards to that specific illness.  I’ll update in order of diagnosis. 🙂 

Endometriosis / Infertility – This is a really tricky disease to receive quality care for.  Many, many OB/GYN’s still practice under the false knowledge that Endometriosis is due to “retrograde menstruation” although this theory was disproved quite some time ago.  Truth is, they do not know what causes Endo, and they do not have a cure.  Not only that, but they also do not have any REAL long-term treatment plans either.  As you guys know, I have already had several surgeries to burn the endometrial tissue throughout my pelvis, and it hasn’t helped me in the long run.  If anything, it has made it worse by causing adhesions and scarred tissue throughout my pelvic area.  This, in turn, causes even more pain.  My only real hope in this area is to get to the Center for Endometriosis Care in Georgia and get a REAL excision surgery.  This is one of my goals for the next couple years.  I am currently working with my new physical therapist to possibly get into a different doctor here in town who specializes in infertility.  I’m hoping that this new doctor will be able to help in that department without having to continue going down to Denver and down the IVF path. If he cannot help, we will continue exploring our other options.  

Gastroparesis – 

<—– This meme makes me laugh every time – because it couldn’t be more accurate! 😀  

The holiday break was a little rough for me.  I had multiple GP attacks which hadn’t been so frequent the last couple months.  I guess that means I should have known they’d be coming, huh?  Like I said before, you can’t trust my gut! 😉

Sadly, I do not have any big updates for you in this area.  I am still working to get my diet pinpointed to exactly where it needs to be.  Since it is not a one-size-fits-all diet for us GPers, it is all trial and error.  For me, it has been a lot more error than success, but hey – we learn best from making mistakes — right?!  With the 21 Day Fix meal plan, I have found that my stomach has felt better in regards to my GP the last 3 days than it has for the last couple weeks, so I think I may be on the right track!  My endo, on the other hand, has been flared up ALL DAY TODAY.  It’s been miserable, but I’m hoping I got it out of the way so that tomorrow I can feel good and rested for my first day back to work after break!  Here’s to hoping! 🙂

GERD – 

Not much to update here.  I am still just taking my Dexilant medication daily and trying to avoid any big episodes.  I hear I’m lucky that I don’t get the ‘heartburn’ aspect of it where your throat burns profusely?  I don’t suffer from that, but I do get chest pains and burning in my rib cage.  I suppose the silver lining is that I don’t ALSO have the burning in my throat? 🙂 ALWAYS a silver lining to be found!  For $50/month, I am hoping that my medication is to thank for that!

                                                              Pelvic Floor Dysfunction – 

This is the most important part for me to talk about today, and you can expect to see several follow-up posts about this topic.  It is unreal to me how I have pretty severe pelvic floor dysfunction, and NOT ONE TIME was this EVER mentioned as a possibility to me from any of the doctors I have been to over the years.  Not until I went to the Mayo Clinic.  My insurance, however, denied my two-week intensive physical therapy that was recommended by the Mayo Clinic, so I was back to square one.  After I went to see my family doctor about my foot (I’ll explain that next), he suggested I see a pelvic floor therapist in town.  I decided it was worth a try, and I couldn’t be happier that I did.  She is AMAZING!  I will talk a little more about what my therapy consists of in a different post, but let me just say, for once – I have HOPE that my pelvic muscles can feel NORMAL eventually!  It amazes me that this isn’t a condition that every OB/GYN talks to their patients about when they are having such severe pelvic pain – especially when it is so common for those of us suffering from chronic pelvic pain.  I am currently going to physical therapy once a week, and I am excited to keep you updated on my progress!

And lastly, MY FOOT.  This is honestly an exhausting topic for me right now.  Since I know this was a lot to read already, I’ll try to be as succinct as possible.  On Halloween this year, I woke up in the morning with a sore foot.  I thought maybe the boots I wore for our school’s Fall Carnival the night before had made my feet hurt.  I complained for about a week of this “cramping” feeling in my left foot.  It felt like the base of my toes had a ‘charlie horse’ and like I was stepping on a marble.  One of my super sweet coworkers saw me limping around, and she brought me a walking boot to see if it helped.  It helped me not roll onto my toes when walking, which is what caused the most pain.  I have been wearing that boot since the first/second week of November.  We initially thought I had a stress fracture in my foot, but I finally gave in and told the doctor I’d come back in for him to look at it.  By the end of the exam, he said he believed I had a benign tumor in my foot.  Wait…what?!  THEN he proceeded to say that he didn’t think the pain shots that people sometimes try were worth much, and he believed I’d need to have surgery to remove the tumor.  Ugh.  Why do ALL my doctor’s appointments end in either more diet restrictions OR a surgery date?!  He decided I needed an MRI to confirm the diagnosis.  My insurance, however, denied the MRI.  My opinion?  They denied it because I had already met my out-of-pocket expense, and it was nearing the end of the year!  I went on Tuesday to get an ultrasound on my foot, but I haven’t heard back yet.  According to the ultrasound tech, this ultrasound would pretty much just show the insurance that I need an MRI.  So, I guess I wait to see what happens next!

Whew!  If you stuck through this post to the end, you must really care! 😉 One of my goals this year is to get better at blogging things as they happen instead of much later.  Hang in here with me while I work on that goal. 🙂

New Year – New Me?

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It’s that time of year again when social media posts make the not-so-subtle change from yummy-looking, super-unhealthy holiday recipes to new year’s resolutions and fitness.  It happens every year – without fail.  Along with this predictable change, you can be certain you will see another type of post prevalent on your social media — the people who ridicule those who subscribe to the “New Year – New Me” philosophy.  

I won’t lie – I’ve been on both sides of the fence on this one.  I’ve began many years with the usual fitness goals and fell off the wagon a week into January (A week?  Who am I kidding?  Probably more like 2 days!).  I’ve also sat back and silently rebuked those who dared to tell the world that they were REALLY going to do it this time.  

I know, I know.  Some of you reading this may be one of those people who immediately balk at January 1st fitness goals.  I hear you – you make some valid points.  But think about it for a minute.  Choosing a healthier lifestyle is never a bad decision, so if someone in your life finds the start of a new year a motivator to begin taking steps in the right direction – is seeing their fitness posts the worst thing in your world?  (If it is –  wow – no wonder you don’t ‘need’ pesky resolutions! 😉  )  Try this – instead of feeling annoyed or ridiculing them, send them a little piece of encouragement.  It may be just what they needed to carry that motivation and healthier lifestyle further into the new year.  You know, past our usual January 3. 😉

This year is different.  This year, I decided to set GOALS for myself.  Short goals – achievable goals that would lead me to reaching my lifelong goal of being a happier and healthier person.  I tend to start each new year with the “New Year – New You” mentality, and let’s face it, attempting to change your entire persona just because a new year has begun is pretty unreasonable.  And furthermore, RIDICULOUS.  I don’t want a “new me”.  I want to BE MYSELF…albeit a better version of myself! 🙂 To begin working toward this goal, I set small goals for myself.  My first one being COMPLETING a workout program.  Not only do I KNOW that I will see results, but it is doable.  21 days?  That doesn’t sound so unreasonable.  Much easier to digest than 365 days of trying to make myself into a different person for 2016!  

I will be posting about this goal and the work I am putting in to reach it.  With so much negativity in the world – especially on social media – I think it will be a nice change to have inspirational posts showing up in my newsfeed.  I hope you feel the same! 😉 

I do have some health updates for you all as well as some positive changes in my medical team, so I will share that with you all before the end of the weekend!

I don’t need easy – I just need POSSIBLE!

I’m blessed.  I know this, and I have never questioned that.  I wake up every morning.  I have an incredible support system.  And it could always be worse – much worse.  I’ve seen people during this trip that obviously were very, very sick – but I’ve also seen people who looked “normal” but had PAGES of appointments at the Mayo Clinic.  I heard a husband tell his wife, “It could be worse.  You should feel lucky”.  Let me let you in on a secret – most of us suffering from gastroparesis, endometriosis, and any other chronic illness KNOW that it “could be worse”, but it is so incredibly NOT helpful to be told that.  What we hear instead is, “It’s not THAT bad”…and you know what?  It is.  It is bad.  It stinks.  Most days I have to remind myself to breathe and take it one step at a time.  Literally feeling sick and tired every day stinks, and although I know it could be worse, that thought doesn’t make this suckiness any less sucky.  Yes, that’s a technical medical term 😉 I certainly do not feel “lucky” to have two chronic illnesses.

With that being said, I DO feel lucky to have had the opportunity to come to the Mayo Clinic and see some of the best doctors.  This place is incredible.  They are thorough, kind, and understanding.  Not even ONE time has someone hassled me about the financial aspect of my visit.  Not ONCE.  No one has even mentioned it.  I have not had anyone question my symptoms or make me feel like “it isn’t that bad”.  They just genuinely want to help me feel better.  It was my hope they would have some magical cure for me, but I know that the hope was unrealistic.  I cannot expect to feel better without putting aside what I thought my life would be like and accept the changes I have to make in order to live the life I was meant to live.  I know I can do it.  

I had promised to update everyone frequently this week, but I didn’t have a clue what this visit would be like.  It is exhausting!  David and I went from building to building – appointment to appointment, and we learned a lot.  I do not have my follow up appointment with my doctor until tomorrow afternoon, so I do not have too much information to share as of yet.  Here is what I have had done and learned so far:

I met with my new doctor on Monday, and she talked about my medical records and my current symptoms.  She then set up my treatment plan and scheduled me 8 different tests / consultations throughout this week.  These tests included blood work (which was all normal except my calcium levels were low).  I also had a 3-day GI Transit test done.  For this test, I had to fast for a bit and then take a capsule with a radioactive tracer in it.  Shortly thereafter, I had to eat a (GROSS) prepared breakfast with other radioactive contents.  They took pictures of my digestive tract right after eating the breakfast and then in one hour intervals for 4 hours.  I then had to take a picture at 6 hours and then 24 and 48 hours as well.  Oh – and no caffeine!  BLAH – Poor David!  This test showed what we already knew – that the food is not emptying at the appropriate rates.  The first couple pictures showed that my emptying time was at the lowest end of the normal rate as possible, but the third picture showed that it slowed down considerably.  Where most people would have digested 85% – 100% of their food, I had only digested 61%.  I have not had a chance to discuss all of this with my doctor yet, so I’m not sure of anything else they learned from this test.  I only learned the percentages from my nutritionist today.

Speaking of my new nutritionist, she was very kind and helpful.  The diet she gave me is similar to what I already had from previous nutritionists, but she was more helpful on the specifics of how much fat and fiber I can have within one meal.  She also helped me figure out healthier options within my limited food choices so that I can try to get back to my comfortable weight.  David said he would like to do this meal plan with me! 🙂 I think it will be so much easier to have him on board as well!  I’ve had a lot of people ask about what my diet has to look like. I’ll share all of that information later. 🙂

Finally, I went and saw a pelvic floor therapist.  She confirmed that I have pelvic floor dysfunction.  Somehow, I retrained my muscles to work backwards.  This can be helped by going to pelvic floor therapy.  She suggested I look into this type of therapist in Casper, but she cautioned me that my need is different than what they may have seen before.  If I choose to do the program at the Mayo Clinic, I’d have to come back to Rochester for a two-week intensive therapy.  This would involve therapy 3 times a day for 1 week and then 2 times a day for the second week.  We are considering doing this over my winter break from work in December.

 I will not be able to update the results of my follow-up with the doctor tomorrow until later this weekend.  After my appointment, David and I are going to drive the first 6 hours toward home, get a hotel, and finish the trip on Saturday.  I’m so ready to get home and sleep in my own bed! 🙂 

Well, if you’ve made it through my rambling – thanks for caring! 🙂  The texts, messages, etc. this week have been overwhelming and very much appreciated. The support has helped more than you’ll ever know. 🙂  

 

  

Destination: HOPE

Five months ago, my GI doctor suggested that I accept a referral to the Mayo Clinic.  I told him I’d have to think about it.  The ONE medication option that is available for my GP in the United States failed miserably for me.  I stopped taking it after 2 weeks.  The diet changes have not worked.  In fact, my few “safe” foods aren’t even safe anymore.  Everything makes me feel sick. I was so hesitant to take the trip to one of the clinics because I wasn’t sure it would be worth it – I’m still not.  But in September, David and I decided that the trip was worth the risk.  At this point, we’re willing to try anything that may help.  My GI doctor told me, “If you go and find out they can’t help you, at least you know that no one can”.  There was my first pause.  Can I really handle it if they tell me that there is nothing they can do to improve my quality of life?  I don’t know…

I decided to check into an appointment anyway.  I figured the logistics just wouldn’t work out in my favor.  I was pleasantly surprised to hear from my insurance company, however,  that the GI doctors in the main Mayo Clinic in Rochester, MN were “in-network”.  After speaking with the Mayo Clinic, they told me to plan to stay for 5-7 business days for an initial visit.  There was my second pause.  NO WAY I could wait until winter break at work to get the testing done.  I’m miserable daily.  BUT there was also NO WAY I was going to miss a week of work!  Maybe this wasn’t going to work out after all…

My family, friends, and even my boss weren’t going to let work be a reason I didn’t go.  So, my initial consultation was scheduled for October 19.  FMLA paperwork was filed, a friend stepped in to sub for me, and everyone encouraged (and BULLIED me! haha) into making an appointment.  The scheduling coordinator told me that they would decide what tests they wanted to run at my consultation appointment after reviewing my records and speaking with me.  It is their hope (and mine!) that they can schedule all of the tests for the week I am there so that we do not have to travel back there any time soon.  It is possible they will refer me to another department as well – which is what could make a return visit necessary.  To be prepared, I am bringing all of the records from my gynecologist as well since I assume the referral to the “other” department would be due to my endometriosis.  

Tomorrow morning at 4:00am, David and I will start the 13 hour drive to Rochester, MN and stay through Friday, October 23.  I am very grateful to be able to see some of the best doctors available, but I am so incredibly nervous and anxious that the results of this trip will not be what I am hoping for.

I will try to update daily (or nightly) about the progress of our trip.  I am trying to stay positive, but I cannot help but feel more nervous than anything else.  It literally feels like this is my LAST chance for help…and it probably is.  

Thank you all for your continued support!! ❤