Soulmates-My Baby, Her Belly 

We meet tons of people throughout the span of our lives. Maybe you have heard the saying, “some people come into our lives and quickly go, others stay for awhile and leave footprints on our hearts and we are never ever the same.”  I believe we can categorize these people into groups based on our relationships with them.

  1. People we never say more than 2 or 3 words to such as “hi and “how are you” in passing just to be polite (a co-worker in a large firm, a fellow jogger or person waiting in line with you). 
  2. People we wish we would have never said more than 2 or 3 words to, unfortunately did, and now avoid them at all costs (acquaintances, ex-boyfriends, or friends turned bad). 
  3. People we interact with for professional, need based reasons (hairdressers, postmen, bankers, doctors, realtors, etc.) 
  4. People we deal with only on or at special occassions because we feel obligated to do so (fellow Christmas party goers and wedding party guests, great aunts and uncles we havent seen in 15 years, or any family member that we are distant from). 
  5. People we enjoy spending our time with and vice versa (good friends & family). 
  6. People who we cannot imagine not having in our lives for its entirety, who we would do anything for, and vice versa (soulmates). 

*Note-these are all totally subjective generalizations; yes there are surely exceptions and overlaps depending on who you ask.  

To most, a soulmate is looked at as 1 romantic, intimate life partner. I too, look at my husband as my 1 and only romantic soulmate.  But is it possible to have a soulmate that has nothing to do with romance? 

I would say so; I would say it all depends on your definition of a soulmate. To me, the defintion of a soulmate is what I described in category #6 above.  For this reason, I also consider my mom to be my soulmate. I could even go as far as saying I consider my furbabies to be too.  The past few weeks, I was really reminded that I am blessed to have friends in my life that are my soulmates as well. 

  

A few weeks back, after our FET was cancelled and we got the bad MRI report, I was feeling pretty down. Literally, I was in bed crying, thinking about how weak I am, and how I wanted to give up, when my husband brought in an unexpected card from a cat 6 friend and handed it to me. It was exactly what I needed at exactly that moment.  

  

A few days later, I sat and cried again, staring at the computer screen. I had just researched the cost of an average carrier in the U.S….$50,000, with the most expensive part being hiring someone you do not know to carry. We knew there was no way this could ever be afforded.  Ever.  And we were so frustrated that neither one of us have a sister to even consider asking for help.  Neither one of us would ever as a friend, its just too much to expect of someone in our opinions.  But having someone you know as the carrier significantly reduces the cost. 

Next thing I know, my husband hands me more unexpected deliveries from another friend from category 6.  Again, the timing was nothing short of a miracle from above.  

These cards were numbered in the order to be opened

If you have been following our infertility, IVF, and RPL battle you know that eventually we *may* be faced with pursuing our family through a gestational carrier.  I said in my post yesterday that I had some uplifting, positive fertility news to tell. I am not going to go into detail about it, but I will share this much-one of my cat 6 friends, who has been following our story all along, who is one of my soulmates, has extended the offer of carrying our child for us should it come to it in the future.  She said it would be an honor to do so.  

There are really no words that can describe this incredible, selfless offer or the magnitude of our wonderful friendship. 

For those of you who are struggling, who think everything seems impossible, and who are feeling that there is no hope left-my husband and I get it. We really do. In fact, just a day before this offer we said we might as well give up on our dream of our family. But I want to remind you that there is always hope my friends.  Just when you are at your weakest and about to give up, God will remind you there is hope. 

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A Renewed Sense of Hope

As of lately, I havent had much good to report in terms of our IF/IVF/RPL struggle. Today, for the first time in awhile, I feel like we have some better news to share. 

My formal, sit-down, post MRI appt. with my RE was today.  Although I had briefly discussed the results with her via email prior to our meeting, this was an in depth review.  

We started out reviewing the recent images together. I had already looked at these on the CD I was given at the hospital after the MRI, but none of it made any sense to me.  I couldnt even tell my intestines from my uterus and so on.  Seriously, it looked like an alien.  We pulled up before and after images from the last mass removed back in May.  We compared the images, and they looked very similar then and now, as far as the shape, location, etc. 

Some background before I go any further

Before my surgery back in May, my RE said she thought it was an Adenomyoma that we were going to try and remove. Of course, there is no sure fire way to know 100% what it is until it is sent out after removal. When we got the path back from the lab, after removal, it came back as a submucosal fibroid.  Hmmmm…

We (my RE included) were all very surprised by this report, as it didnt look like one at all.  But what were we going to do? Fight the labratory? Ask for the mass to be sent to me? I dont think so. They dont even speak to people there, trust me. The lab has no connection to the RE- it is an entirely separate entity.  If you even try calling a lab, good luck.  

That brings us to current time. We noticed during my last H/S in September that something was back in my uterus yet again. We ordered an MRI and the official read of the current mass- Adenomyoma. Might I add, in the same exact same location as the last mass.  Hmmmm…

So my friends that “fibroid” back in May was NOT really a fibroid-it was an Adenomyoma as we all originally suspected.  There is no way a fibroid was in the exact same spot as an Adenomyoma now is. Fat chance! 

That would mean the lab was wrong.  How is it possible that a lab could inaccurately diagnosis a specimen sent to them? Well, for one, they are human. Two, its my luck. But here is the real deal on how a misdiagnosis of an Adenomyoma vs.  Fibroid happens–my RE said that when they check for fibroids, they are looking for endometrial tissue and if they find it, they sometimes just classify it as a fibroid.  Both masses have endometrial tissue, but fibroids are much more common than Adenomyomas.  

I do believe this reasoning on their *uck up is true, because when we got a second opinion over the summer at another RE’s and I showed him the path report and the photos, his exact words were, “that is not a fibroid.” I argued with him, explaining that the lab said… and he interrupted me quickly with and I quote, “they are just testing for endometrial tissue.” 

Pretty amazing that labs can get away with this type of work if you ask me.  Nevertheless, I I feel confident this is a regrowth of an Adenomyoma versus a fibroid, and that we have in fact been dealing with an Adenomyoma all along.  So does my RE, the radiologists, and all of the RE’s at her practice.  

To be sure, today, we compared numerous images of fibroids versus adenomyomas; the outcome- my mass looks NOTHING like a fibroid. I do not want to ponder this matter any longer. We have had so many unanswered questions and curveballs throughout our journey.  This FINALLY feels like a solid diagnosis to us, and we plan to leave it at that.  

Now, with all that being said, it appears this adenomyoma has indeed grown back since the operation in May.  It stayed away for about 2 1/2 months in total after the operation.  Keep in mind, before the operation, my RE told me there was a chance this mass growing back may happen (if she couldnt get all of the cells from it out).  She made it clear to us then that she did NOT want to damage my uterus in anyway=not a lot of digging and scraping to get it out.  I do appreciate that.  

Do I wish she got it all? Yes. Do I want to have a bunch of scar tissue or damaged cavity from her getting it all? No. And I dont, thankfully, because then I would be super pissed it was back.  But I am not mad at all today, for 3 reasons-

  1. As mentioned, we now have a firm diagnosis of what the mass is. 
  2. My uterus looks great overall. Surprising right? Ill explain more below. 
  3. There is hope!

Looking Good

I dont know if anyone out there has had an MRI of the uterus, but let me tell you, it really gives you a clear view of it all…more than any HSG, H/S, or SIS can.  The only troublesome area is the small spot where this Adenomyoma is. The rest is normal size, shape, and so on. Thank God.  This is good news my friends!  

Here comes the hope

We can try to shrink this mass using Lupron for 3 months. We discussed success rates, side effects, etc.  and when it boils down to it, my husband and I think it is at least worth a try.  We are feeling very hopeful, and at the same time, cautiously optimistic about it.  

The Plan

We ordered the script for Lupron, and my nurse is going to try and get my insurance to cover it, meaning it probably will not be in for a few weeks.  This is not the typical Lupron you inject yourself with subcutaneously in the abdomen before an IVF cycle. I wish! I have been on that dose of Lupron plenty of times, its not bad at all.  For this though, I will go into their office once a month and get an intramuscular injection in-you guessed it-my ass.  Ugh.  I guess its like regular Lupron on steroids (super strong). 

I will be honest-the side effects described are not pretty. Hot flashes, night sweats, nausea, insomnia, etc.  I am trying to remain hopeful I do not get the worst of it.  I am focusing on my fresh IVF cycle, and how I never got sick like a lot of women do, and also my pregnancies were pretty much the same.  I am usually pretty good at fighting off side effects, so we will see.  If they become too much to bear, there are some options of things I can do, but I am not going there yet, one day at a time. Either way, I know it will all be worth it in the end if we can finally bring our baby home.  

Best Case Scenario

The Lupron shrinks it down & we transfer immediately after I stop it, knowing the Adenomyoma stayed gone for about 3 months, we could get through the first trimester without it coming back during that time (hopefully, nothing is guaranteed).  This would mean a spring transfer and maybe our baby in time for the holidays next year! 

Worst Case Scenario

This Lupron does not shrink it.  We would then be faced with a few options-

  1. Try to surgically remove it again & transfer right away after (again, this would be just a temporary fix, trying to get us through a first trimester without it, knowing it will likely be back soon).  We would also be risking damage to my uterus again going this route.  
  2. Gestational carrier – I will post about this separately, but we did discuss it in detail today and I got tons of info. on it.  

I failed to mention that I discussed getting a second opinion from another Dr. with my RE today.  One that specializes in uterine masses to be exact.  She showed me the areas the other REs at her practice specialize in and are board certified in- several of them being uterine issues like mine.  If they have already reviewed my files, and specialize in this area, why would we bother going anywhere else? What will they tell me these REs havent? I really dont want to become more confused and I am so tired.  Most importanty, we feel content today, like we are moving forward, and thats what matters most.  


A New Month Begins, and Another Door Slams Shut

Got the “official” MRI reading back from my RE late this afternoon.  Here is what she sent me:

  
As you can see, not the best news. Of course, both cases were bad news, but another fibroid could at least be removed with hopes of it not coming back again.  Not that I was even positive I was ready for surgery again, or that it wouldnt come back, but still, it was a possibility.  I guess many women have achieved successful pregnancies after fibroids, so in the back of my mind there was a tiny glimmer of hope it was that. 

But, it doesnt appear thats the case..surprise surprise! Anyways, like you read, I will get a more in depth report next week.  However, in the meantime, here is what I already know from our prior discussions about the MRI showing adenomyosis/adenomyomas:

  • Further surgery is not an option
  • This is a chronic condition
  • The only way to completely rid the uterus of adenomyosis is via hysterectomy 
  • We can try shrinking the adenomyomas using Lupron for about 3 months 
  • If that fails, a gestational carrier is the board of RE’s recommendation 

Right now, my plan is to generate a list of questions about shrinking it.  Heres whats off the top of my mind–

  • Since this is a chronic condition, is it even worth trying to shrink it? Injecting myself everyday for 3 months…and thats just to get to another hysteroscopy to see if it worked.  Im not interested in the BS percentages of it working, Im insterested in hands-on experience…has anyone of these RE’s actually seen Lupron suppression work for this before? 
  • How quickly is it all going to grow back after I stop taking the Lupron? Long enough to even transfer one of our embryos? 
  • What about if we transferred and got pregnant? What are the chances it will grow back then? Another miscarriage? 
  • Lastly, where the HELL do we even start with a surrogate? 

I have so many questions about the last bullet, but dont know if I am ready to ask them or hear the answers.  Ill be honest, it is pretty hard for us to swallow.  I think I will post more about it soon.  

Tunnel Vision

Tunnel vision seemed like an appropriate title for this post being the gargantuan MRI machine feels like being stuck in a shallow tunnel, surrounded tightly on all sides with blaring fireworks going off directly into your ears.  

I arrived at the dreaded hospital (aka place of death) about 15 minutes early for my MRI.  Thankfully, they are currently in the process of renovating so it didnt even look like the same place I stepped foot in 8 months ago when I underwent the D & C.  I checked in, got a wristband, and was pleasantly informed that my insurance would pay 100% for it.  While waiting, I asked the lady at the desk if I could request a copy of my images that would be taken.  She gave me a form and I filled it out. Finally, the technician called me back and reviewed the script with me.  I must say how sweet this lady was…she asked questions, listened to my story, and even took the time to call my RE’s office to ask a few questions.  

I have only had 1 MRI before and that was for the herniated disc I have in my neck. What I remembered most from that was how long the scan seemed and that I couldnt really move much. I didnt remember it to be too bad.  Now, I should add that this neck MRI was a several years back, which were pre-anxiety days, or the pre-IVF and pre-RPL days of my life. 

This being said, I contemplated the idea of taking a Xanax before todays MRI, but did not since I drove myself to the appt. straight from work.  Anyways, I had an IV adminstered this time for the dye which I did not have in the past.  After the IV, she had me take off all metal items, empty my bladder, and lay on the table.  She asked me what type of music I wanted to listen to, reviewed the protocol with me, put on my headphones, and pushed me into the tunnel.  

Immediately, I caught myself feeling anxious.  I started breathing heavier and suddenly felt like I was going to die.  If you have not experienced anxiety/panic before, this probably sounds insane to you…nevertheless, its true.  I closed my eyes and started praying.  I was able calm down after a few minutes.  I considered pushing the help button several times as I stared at the top of the tunnel above my face.  Then I started to think of all the people with terminal diseases who constantly go through procedures like this.  Just for a moment, I felt like I could relate to them.  Please dont misunderstand, my disease is in no way fatal like theirs; but my level of empathy and understanding for the pain they endure was taken to another level at that moment.  Something I will never forget.  Something positive that infertility and recurrent pregnancy loss have bestowed upon me…more compassion. 

Needless to say, I sucked it up and did not push the button.  Instead, I began to think about the journey to where we are now.  I imagined an imaginary line running up the center of the tunnel, from the bottom where my feet lay, to the top of the tunnel where my head was. Sort of like a timeline with my feet being start and my head finish.  I wondered where we are on the line in regards to bringing our baby home…are we close to the top? In the middle? Still at the bottom? I started to place events on the line, giving each a few moments of my time.  I couldnt see above my feet as she slid me at times…this was good…putting those events behind me.  I ended up placing us somewhat close to my head, in the vicinty of my upper torso to be exact.  

Time was finally up. The wonderful technician surprised me with the CD of my images on the spot, so I did not need to mess with getting them another time. I popped in the CD and tried to examine it when I arrived home.  All of it looks utterly insane to me.  I tried Dr. Google, still no help there.  Regardless, it was comforting to be handed the CD, even if I cant make anything of it until my RE calls me.  Its the little things in life, right? 

Fall Holiday

Yesterday was officially a fall holiday off from work. Our day off had originally been booked with appointments centering around the upcoming FET that ended up getting cancelled (day 3 ultra and blood). We also had a SA set up for Shane since its been well over 2 years now since his varicocele repair.  We have been pretty much getting them done every 6 months since the surgery for data points, and over time have watched them slowly, but steadily increase.  

Anyways, we cancelled all of these appointments.  For obvious reasons the day 3 is off and the SA can wait. Neither one of us felt like driving an hour south for it.  Getting pregnant right now isnt an option, so the SA is irrelevant.  

We spent the day relaxing and getting my fall decorations out of the attic.  I wanted to put all my items out on display, but I have a hard time doing so when its still so darn hot out. Like 90! However, if I wait for a cold front to come in I might miss the whole season. I think I will break down and do it this weekend.  

We also went to Nutrition Smart, a local health food store in our area.  We stocked up on more COQ10, and our soaps and body washes we always get there.  Additionally, I invested in some Castor Oil packs.

  
I have been researching these packs for sometime now.  Many women use them to help naturally heal their fibroids and I figure I might as well give it a shot.  I inquired with the lady who worked there about what most people use them for (just to see what she would say) without telling her my knowledge of what they are used for…I was pleasantly surprised when she replied quickly with “fibroids.”  As we speak, I am currently “soaking” in this sticky oil! My dogs seem to think I have some type of food lathered on my body…I have been fighting them off me the whole time. 

  
One last thing regarding my MRI next week. As you know, the specialist at the hospital who my RE initially wanted to read the MRI couldnt be found. He quit. I still scheduled at the outpatient hospital he used to work at.  After scheduling, I received a message from the scheduling dept. saying they needed to speak with me about my appt. time. When I called back the lady asked if I could come in earlier in the day for it…I explained that I am a teacher 2 counties away and no I couldnt, that I already set it all up workwise.  I asked her why and she said they needed to maintenance the MRI machines at their location! Im sorry, but not exactly what I wanted to hear. I know all machines need maintenance, but with my luck it is probably a faulty machine or something. 

She offered that I could keep my original time and go to the actual, “real” hospital for the MRI if I wanted.  The hospital that I had my last d & c at…where our last baby was taken from my body.  I hate that hospital.  Really, all hospitals for that matter (aka place of death).  And I havent been back to a hospital since that awful day back in February.  BUT, I sucked it up and said “OK.”  Hopefully I will get a working machine, a pleasant tech, and be in and out of that place.  Hospitals are big places and Im praying I am nowhere near the same section I was last time.  Until then my friends ….

MRI 

A quick update for those who have been following along…

My MRI is set up for next week. After talking with my RE, I will still be going to the same hospital she requested, even though the particular specialist they want to read it is no longer there.  

My RE and her colleagues are in the process of trying to track him down, but regardless, I can get the MRI in the meantime, and then just sign a release form for whoever we want to read it after the fact.  

At this point, we really just want to know the results so we know what options we will be faced with. The short of it is this:

If it’s an adenomyoma, we will probably try to shrink it for 3 months with Lupron suppression. If its a fibroid, they will likely want to try to remove it again. 

If either of these fail, gestational carrier is the next recommended form of action. Im not sure what we will do after the MRI results…one day at a time for now.  

A Few Things…

  1. I am currently at the spa, treating myself to a new hair cut, color, tan, and perhaps a pedicure if I feel like allowing someone to touch my feet.
  2. I called the hospital my RE wants me to get the MRI done at and requested the specialist she gave me the name of.  The lady who answered initially told me that she thought this person was on vacation (no surprise there, why should anything ever be easy?).  She asked if she could call me back after she looked into it.  Soon after I got a call from her informing me that the specialist no longer works at their hospital and she does not know his whereabouts. Shocker!!! Not.  I proceeded to email my RE and am awaiting a reply on whats next. 
  3. The past 2 times I have given blood and/or got an IV, the nurses have slapped (not tapped) my veins like a heroin addict looking for a fix.  When I questioned it, they explained that my right arm has so much scar tissue built up, they cannot hit a vein anymore.  I guess my left still has a few spots available to work with. Maybe later today I will count up how many times I have had needles in my arms the past few years; I am estimating somewhere in the range of 60-80 times.  Who knows.
  4. I have been tracking how much I am peeing during the nights the past several weeks. I was diagnosed years ago with a smaller than average bladder by a urologist, but things have really accelerated in the pee department as of lately.  Im peeing now more than I ever even did pregnant.  It started out where I was getting up 3 times a night consistently, and now its up to 5 a night consisently.  This is after barely sipping anything to drink. Hence, I am sooo thirsty but cant bear to drink more because I might as well plan on pulling an all nighter if I do.  I am assuming the wonderful mass in my uterus is causing this problem. More solidification that we have a big problem on our hands. So frustrating. 
  5. I am coming down with a cold. I took airborne last night to try and fight it  off. Im sneezing like crazy and my throat is hurting.  Perfect timing!
  6. Our fur babies are such a blessing to us. I have never dedicated a post to them, but this is in the works and well overdue. 
  7. I have not responded to all of the caring comments you all have sent our way after the bad news we received this week. This is unlike me. Please know I am so thankful for all of you and will reply soon. We are still letting it all soak in.