What We Will Do If…

We find out during my hysteroscopy that the mass has NOT shrunk from these Lupron injections? 

This has been the topic of conversation the past few nights in our household. 

We easily reached an agreement that might sound absurd to some–

We will transfer our embryos anyways. 

Yes, you heard right. 

Why? Well, for starters we already tried surgery in May of 2015 to remove the mass and it failed. We do not want to go that route again and we have informed our RE of this decision already and she respects it. 

Secondly, we will have tried medically managing the mass through the Lupron. If this did not work, we will not do it again obviously. 

Third, plenty of women have successful pregnancies with fibroids or masses in their cavities. Even my OB and RE support this fact. 

You might be wondering why we even cared about the mass to begin with then?

Why not have just transferred months ago? 

The answer is simple…

After 3 miscarriages, we all wanted to give it our best shot. We want my uterus to be as healthy as possible for a baby. 

If we hadnt ever miscarried, and just found a fibroid, we probably would have just transferred as many do. But that was not the case. 

Moving forward, we now know that we have done everything we possibly could have done. We pray it works for us. 

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.  

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.  

Lining Check #3, 2WW, & “Somethings”

This cycle I ovulated later than the prior 2 months. I got a positive OPK starting on day 16 and it lasted until day 18. Usually my positive test has been lasting only a full day at most, starting on day 14. I was happy about the longer window! 

Day 16 far right

On day 17, I felt the ovulation pains many of you have experienced. I havent had them in a such a long time, I almost forgot what they felt like! As many of you know, last month hubby and I baby danced everyday, twice a day, for 4 days straight (ugh lol!) We did NOT do that this month. The month before that, we BD’d every day, once a day, for 4 days straight. We did NOT do that this month either. Instead we tried to take it easy, and BD’d only every other day, for a total of 4 days. We will see how this worked out in about 10 days…currently in the 2WW. 

Anywho, I got my third lining check and it measured over an 8 again!! Whoot whoot!! Thats 3 months in a row of thick (enough) lining on my own, with no help. Remember, anything an 8 or greater is ideal (some RE’s even say a 7). That said, we are very pleased about my number! I could also see the triple stripe which is great news. My antral follicle count (aka egg reserve) still looks good, about 9 or so on each side.  

  

I got the lining check at the new RE, as our meeting with him just happened to fall during my ovulation  window. We also discussed my HSG more in depth as planned. If you recall correctly, the HSG last week went well overall, but he did say that day that he saw “something” small, which he thought could be scar tissue. 

Well, since he saw “something,” he wants to do an SIS to identify if its scar tissue or perhaps a polyp of some sort. If its a polyp *in the uterine cavity* we would need to do another H/S to remove it. Im not sure how I feel about this. Meaning, I dont know if I am willing to do all this again right now. I asked if a balloon would be involved in this removal, he said it was unlikely, but of course possible. No surprise there, I learned ahwile ago that anything is possible and nothing is guaranteed with all this. 

Then I told him–if it is a polyp or fibroid or whatever AGAIN, obviously they are going to just KEEP coming back. Shit, I just had one removed in May! He begged to disagree with me. He seemed confident that this “something” isnt a huge deal. Easy for him to say right? He hasnt miscarried (potentially with a fibroid as the cause) or been operated on numerous times.  He said the images of the HSG show my uterus looks “good” shape wise, tube wise, size wise, etc.  with the exception of the small “something.” 

The ultrasound lining check also showed “something” unusual in the cavity. So annoying and not what I wanted to hear after getting positive news about my lining.  Whatever this “something” was, I clearly saw it too. He has been practicing for 30 years and he said, “very unusual” and I replied with, “of course it is.”

I probed on whether or not this ultrasound “something” is the same “something” showing on the HSG. Unknown at this time, but he is leaning towards no. Again, not what I wanted to hear. Now we possibly have 2 “things” that may not be related. 

On the ultrasound, this “something” looked like mucus he said (not fluid, polyps or fibroids) which is rare for the location I guess. I was really frustrated and started to tune out at this time. I didnt care to ask about this odd “mucus” if its even harmful, why its caused, or how it goes away. He is hoping the SIS will provide further clarity. Anyone here who has had similar mucus like this, please feel free to share your experiences…I am a feeling like my listening ears are back on now.  I have had fluid, but not mucus, and supposedly there is a difference. 

If we choose to move forward with this new RE, our transfer will be in October sometime. We reviewed the calendars and logistics of it all as our 3 hour meeting came to a close. 

Feeling a little annoyed with the fact that the HSG and ultrasound couldnt look picture perfect at this point.  In June, it all looked just fine. Starting to wonder if my body is just failing and not able to do what it needs to do to even move forward with a FET.  Maybe I am not cut out for this.  

Celebrating the Small Things-Lining Check #2

Earlier this week, I got a positive OPK on day 13 of my cycle (currently in the 2WW!), and set up my lining check for day 15.  In case you haven’t been following along, I have a history of thin lining.

In 2 of our 3 prior IVF cycles it wasn’t ideal; our first fresh transfer- barely 7mm, and FET #1-barely 6mm (8mm or > is what we are going for). And that was with estrogen to make it thicker.  I took even more estrogen for FET #2 and my lining got up to an 11 finally.  But with all that excess estrogen came an absolutely insane woman, fluid, and a fibroid in my uterus that most likely caused a miscarriage.

Since our loss with FET #2, I had to undergo another D & C and Operative Hysteroscopy with my already thin lining.  I was not happy about this, but what could we do? Anyways, in June, my first lining check post surgeries measured 5mm.  Not horrible, but not great either.  Here comes the good news…our most current lining check this week measured 8.4mm! And it had the triple stripe going on!  Super exciting news for us!

Why? Mostly because I am currently not taking any estrogen at all.  My nurse was even like, “Wow! This is amazing! We had such a hard time getting your lining this thick even on estrogen!”  Um, yea exactly why I do not want to be on it again in the future.  Or maybe I should say why I won’t be on it again in the future.

We have another lining check (#3) set up for August 6th at our current RE’s office.  We also have an IVF chat following the ultrasound to hear what she has to say about the protocol for moving forward.  In the meantime, we have 2 appointments set up for July 22nd with 2 different RE’s.  Both appointments are for second opinions.

That being said, by the first week of August (will be here before we know it!), we will have made our decision as to where and when we will be transferring our frosties. In the meantime, we will celebrate the little things along the way…like my triple stripe, thick lining!!

  

Lining Check #1

Our post-op for my most recent Hysteroscopy was today.  We reviewed the positive news and images from last week while I was sober and the hubs was with me.

It worked out that we could also do my first lining check at this appointment since I am on day 12 of my cycle and finally off the pill (woo-hoo!).  Although I am on day 12, I haven’t gotten a positive OPK yet, and I started serial testing on day 8.  I haven’t taken a OPK in sooo long, that I wasn’t sure if I was doing something wrong or not.

The good news is that I wasn’t doing anything wrong.  The ultrasound showed that I have not ovulated yet, and I am producing a good amount of nicely sized follicles on my own (without any meds). As many of you know, I was really nervous I might not be able to do so after all the crap my body has been through the past year and a half.  In all honesty, I was scared to death to even get an ultrasound at all because of all the negativity we associate with them now. Let alone one in the same room I was in when I found out our baby had passed away. I was literally feeling sick from my nerves in the waiting room.

Thankfully, God answered our prayers & I still am good in the egg department.  My RE guesses I will get a positive OPK by this weekend, which is when my lining will be at its thickest. He also helped me conquer the fear of having an ultrasound done again.

As for my lining today, it measured 5mm.  Could be better, but could be a lot worse.  Remember, this measurement is un-medicated, after 4 procedures in the past 4 months, with no acupuncture or real exercise routine in place. Since the uterine lining is supposed to grow about 2mm each day, who knows, maybe by ovulation time it could actually be 6 or 7mm. I don’t plan to go back and check again this month though, I will just wait until my positive OPK in July.

Trust me, I know that 5, or even 6 or 7mm is still thin. That is not the point. Here is the point. Today gives us hope that we may be able to get my lining where it needs to be without an excessive amount of estrogen. And hope is a wonderful thing!

We discussed again at our appointment how Estrogen can cause masses in the uterus to grow, and we aren’t willing to risk that given our history. While I understand that many patients never grow a fibroid in response to estrogen, I also know many do. Everyone is different. And we have learned that I am not a by the book patient at all (if such a thing even exists).

When we were on a boat load of estrogen for IVF #1 my lining measured just 7 mm, and IVF #2, barely 6mm. And before any IVF’s, it measured it measured only 3mm at one point. Finally, for IVF #3 it got up to 11mm, but I firmly believe that was in response to how active I was and how much acupuncture I was receiving at the time compared to the other times, not because of the estrogen.

Our RE wholeheartedly agreed that we may not need to do all that estrogen again either. She really seems to believe that time will heal things up down there, and I am happy to hear her going in this direction, even though I wish we weren’t waiting so long. Our ultimate desire is to have things as natural as possible when pursuing our next pregnancy. And if that takes more time, so be it.  Prayers for even more growth next cycle please!

The Newest News

It’s been 2 weeks since the operative Hysteroscopy & we just got the results back from the lab on the mass that was removed & sent out.

Since this “mass” never showed up on any of my SIS’s before each IVF cycle, we had pretty much ruled out a fibroid or a polyp, as an SIS is done specifically to look for these types of masses. This led the doctor and us to believe that the mass was indeed an Adenomyoma, especially since I have formally been diagnosed with Adenomyosis.

Wrong. The pathology report showed a “submucosal fibroid with no major calcification.”  There are 3 major types of fibroid’s-submucosal, intramural, and subserosal.  Of the 3, submucosal fibroid’s are known to cause the most problems.  From the little research I have done since we got our results back, I have found that submucosal fibroid’s tend to grow in size when a pregnancy occurs, and they can cause miscarriage due to their location (looks pretty bad being right inside the cavity).  Our doctor confirmed both to be true as well.  

On one hand, yes, a fibroid is better than an Adenomyoma; there is less chance of recurrence, since it is not associated with the disease itself.  And supposedly, statistics show that once fibroid’s are removed, there is an 85% live birth rate as compared to when one is in the uterus.  Not saying I believe it or not-just sharing with you the information we received so far. On the other hand, it being a fibroid is extremely bothersome to us because none of our SIS’s ever showed it. I saw every one right there on the screen! And yes, I know what I am looking for, trust me. So, how is this possible?

The most logical explanation would be it formed after the last SIS we had done in October, before our December transfer. BUT, if this is the case, then we can’t blame our other 2 miscarriages on it, and I don’t like that. At all. We wanted to believe this is why each one happened.  How can we believe that if the fibroid never showed up until the hysteroscopy?  Fibroid’s are supposed to show up on SIS’s!!! And I have had 3 done…so incredibly frustrating.

Bottom line, we will never really know if it was there all along or not at this point. All we can do is choose what we want to believe now.  Here are our options:

Option 1: Blame all 3 losses on this fibroid, assuming the SIS’s could not pick up on it for some odd reason.

Option 2: Only the last loss was caused from this fibroid (which must have formed after the last SIS or was just too small to be seen by it) meaning we have no idea why the other 2 losses happened-chalk them up to all the other endless possibilities-thin lining, not being on a blood thinner, genetics, stress, etc. Going with this theory would mean we believe it grew rapidly,  most likely in response to all of the estrogen taken. Excessive estrogen=fibroids. 

Option 3-This fibroid had nothing to do with any of the losses at all. We still have no clue why any occurred.

So, let me ask, which one would you believe?