3 More Sleeps

Until my (hopefully last) Hysteroscopy. It may seem almost pointless to some to even do it at this point; I have already started the suppression part of my cycle with Lupron injections, ordered all my other meds, and paid for the FET itself. Why bother putting me into a drug induced state again to see what my cavity looks like? 

Simple-we just want to know what we are dealing with. Thats it. We all have already agreed we are moving forward regardless of if the mass is completely gone or not, so its not about that. Although it would be nice to know that the treatment the past several months did work if it did. I cant imagine not finding that much out.

Anyways, I have my outfit (socks & lucky fertility bracelet included) all picked out for my procedure…how sad is this that Im now into infertility fashion? I guess a girls gotta do what a girls gotta do. Lol. Will post some pics of this attire after the procedure to bring you a few smiles. 

Oh, and is it pathetic that Im looking forward to the day off and the loopiness that comes along with all the poking and proding? No nervousness at all, Im ready for the twilight. This aint my first rodeo… Bring it on! 

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Annual OB Appointment & More

Today I had my annual OB appointment. The last time I saw my OB was right after our 1st FET loss last September and right before our 2nd FET last December. 

I have been seeing my OB since 2003, and I highly value her opinion. When she came in the room, she had that “I’m so sorry” look on her face when she asked me how I was doing. You see, I was just 2 weeks shy of my first OB appt with her before we lost our last baby at 10 weeks.  

We caught up on all that went down since, and debriefed on where we are at now in this process. As she called it “limbo.” She informed me that she will send over my results from today to my RE so she has the up to date info in her files.  They are strict about having these every year when it comes to transfers. 

On her way out she said, “It’s been such a long time, I dont really know what to say to make things any better.” I told her not to worry, we are keeping the faith, and our time is coming soon. She agreed and we wished each other happy holidays. 

I did get to ask her some really important questions since our most recent classification as recurrent miscarriers, which we did not have the title at our visit last November.  Here is a summary-

  • Since I had the LEEP procedure done with her back in 2003, and I have a history of RPL, my cervical length will be measured every 2 weeks between weeks 14-24 to ensure it is where it needs to be. So glad to hear I will be monitored super close through the second trimester. This eases a lot of my fears about my cervix shortening without any warning. 
  • I will also see a perinatologist (high-risk dr) throughout any future pregnancy I have. 
  • She does not feel I need to be on Lovenox during any future FET’s. Why? I miscarried BOTH with it and without it. It obviously isn’t the issue, plus I am only heterogeneous for Prothrombin, not homogeneous. 
  • She doesnt feel I should give up because of this Adenomyoma. If it shrinks, even a little, she said to do the transfer. She reminded me that plenty of women can go on to have successful pregnancies with fibroids/adenomyomas. She feels my RE just wants things as optimal as possible based on our history. 

I also hit up my family Dr. today. She has prescribed me a medication that will balance me out while on the Lupron Depot (a.k.a. Stop me from being completely crazy).  

This anti-anxiety medication is used frequently to treat women in menopausal states, which is ideal for my situation since that is exactly what the Lupron will be putting me in. Of course, it has absolutely 0 estrogen in it.  It will take about 3 weeks for it to fully kick in, and is not meant to be used longer than a few months at a time. I plan to use it throughout the duration of the Lupron (3 months), and go off it before another FET. My RE is good with this too, as there are no counteracting agents between the 2 medications. 

Overall today was a very good day! I saw 2 doctors, both of which are looking out for my overall well being, physically and mentally. I had some fears about my future, and they have been put to rest. Here’s to new beginnings! 

Lupron Update 

Last week, we decided we would be moving forward with ordering the Lupron Depot intramuscular injections. These will be given once per month for 3 months in hopes of shrinking the Adenomyoma in my uterus.
My nurse originally informed me that this particular dosage of Lupron would be rather expensive, and that it is usually a battle with insurance for any coverage of it.  She also mentioned that there were coupons out there that may be able to bring down the cost a little. I used coupons like this with my Crinone and Mini-velle in previous FET cycles so I am familiar with them. 

To be honest, I was pretty annoyed that it would be costly, especially since the regular dose of the subcutaneous Lupron is not expensive at all (like 120 bucks for a bottle that lasts about 3 months).  Also, the idea of spending a lot on medications that arent directly linked to a transfer is tough to swallow. 

Anyways, I heard back today on the final cost… 

  
God is good my friends! I was floored by this good news. Keep the positive vibes coming! 

Will update when the goods arrive…

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.  


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? 

“I’ll Take an All-Natural FET, Please”

What causes Adenomyosis? After we discussed how we plan to get rid of it, that was the next “big” question on my mind.

Here’s what we got:

  • Damage to the uterine lining
  • Excessive estrogen
  • Pre-menopause
  • Unknown reasons

Damage to the uterine lining is a possibility for us.  We have had d & c’s done, and every time you do, the lining of the uterus is scraped.  I have also had a history of thin lining which goes hand in hand with this.

Estrogen.  Too much freaking estrogen.  I have been taking synthetic estrogen for 8 out of the past 12 months (1 fresh and 2 frozen cycles).  And of course, since I have thin lining, I am prescribed even more estrogen than the average woman in an IVF cycle. This is because estrogen is what causes the uterine lining to thicken.  As you can see, it’s totally a catch 22 here. I need estrogen for a thick uterine lining, but excessive estrogen can not only cause Adenomyosis, but feed it.

adenomyosis

The last FET we did my estrogen levels were through the roof.  I felt like I was on speed the week before the transfer.  It was horrible (don’t worry you can’t hyperstimulate like you would with levels like that on a fresh cycle).  During a FET, a woman’s estrogen levels are supposed to be close to that of a woman who conceives naturally…mine were quadrupled, but hey, I had my lining of an 11 or 12!  And, remember, at the time we didn’t know we were feeding a monster either. So, the question becomes how can we even consider pumping more estrogen into my body during a future cycle, now that we are aware of this new diagnosis? We have two options.  Do a “super quick” FET, with estrogen, supposedly not allowing much time for Adenomyoma growth, or do a natural FET with no hormones (aka non-medicated FET). We are all about the latter, therefore I brought it up to our RE.   She said she would be willing to try an all natural FET with us. No estrogen patches and pills, no shoving progesterone up my who-ha 3x a day.  Just taking our sweet little embryo and transferring into my uterus at the right time.  Amen! She warned us that pregnancy rates are not as good for a natural FET, and that a lot more monitoring (blood and ultras) is involved.  Pregnancy rates are not as good because your body is not as controlled (more specific details about how a natural FET works coming soon in another post).  She said she has had a “few” pregnancies result from a natural FET.  I didnt ask for a percentage, because I really dont care what it is anyway. Any success stories from my TTC sisters is welcomed here!!

Let me tell you, I will go in there everyday for an ultrasound and blood if I can stay away from all the damn hormones.  And again, we have gotten pregnant every single time we transfer, so the “pregnancy rates aren’t as good” part doesn’t necessarily apply to our situation.  We want to stay pregnant.

Another reason this sounds appealing is because I have never had an issue with my progesterone either, in fact, it is always high (ruled out as a cause for our RPL). As far as growing my lining, I feel it can happen without the synthetic estrogen, with God’s help of course (and some yoga, acupuncture, and super foods).

At this point, we just feel like it’s at least worth a shot. 

  

Finding the Rainbow After a Storm

Today was our post-op appointment after the hysteroscopy done last week.

The pathology results from the biopsy came back with 2 findings: 1.) chronic inflammation, & 2). placental plaque, or tissues.

The chronic inflammation is probably due to all of the zillion procedures that have been done.  The placental plaque or tissue, on the other hand, was not what we were expecting. Somehow, someway, there is still placenta left in my uterus from a pregnancy. Don’t ask me how.  In fact, it was not even able to be seen on the hysteroscopy, it was only detected through the biopsy.  If something “rare” were to happen, you already knew it would.

So, the plan is to remove, or try to remove this “invisible” placenta when we try to remove the Adenomyoma in a few weeks. Removing the Adenomyoma will go something like this: Under general anesthesia, the doctor will once again enter my uterus with a camera through the cervix, locate the mass, and “shave” it down with a special tool, that she called a “wand” at one point. A wand! Ha! Like this is a fairy tale or something.

After she shaves the mass down enough to where it appears flush with my uterine wall, she will inject Vasopressin into my uterus to make it contract.  The Vasopressin will force any “hidden” Adenomyoma to seep out.  Sounds disgusting, I know.  I guess entire Adenomyomas are not always fully visible, which brings us to the next point.  Our doctor said, and I quote, “there is a chance I may not be able to safely remove the entire Adenomyoma” or that “the cavity will appear normalized at the time of the surgery, but there will be residual tissue left that can grow back.”

She will take get out as much as she can safely, without damaging my uterus, and send it out to pathology to confirm that it was indeed an Adenomyoma.  She will also insert a balloon in the place where the mass previously was (in order to prevent scar tissue from forming). The balloon will stay in my uterus for about a week as it heals (maybe I’ll fly away). Of course, she said I won’t even feel it, but I doubt she ever walked around with a balloon in her va-jay-jay.

About a month after all this jazz (in June sometime), we will have to do another diagnostic hysteroscopy/biopsy, just like the one last week.  This will confirm that the Adenomyoma is fully gone, along with the placental tissue.  It’s hard for me to think about not being able to fully remove it.  I guess because we know it has to come out entirely, or we cant even consider getting pregnant.  And even if it is fully removed, there is always the chance another one will grow back.  And there is not timeline as to when, or how quickly.  This is very frustrating to say the least, especially since there is a pretty good chance this caused us to miscarry the last time.  You know I don’t believe in percentages, but if I had to give you one on whether this mass caused the loss or not, I’d say I’m 90% sure it did.

The doctor thinks that this Adenomyoma has probably been festering for a little while now (at least before the last transfer). In fact, the “fluid” that popped up back in December, that almost cancelled our transfer, we can most likely thank Mr. Adenomyoma for.  Fluid can be related  to many things, among them, less commonly, an Adenomyoma. Of course there was no way in knowing this was the relationship then-I saw every single ultrasound, SIS, and HSG with my own eyes, and this mass was not visible. So how can we not help but ask why, God? Back in December, we prayed and prayed for that transfer to be cancelled if it wasn’t right.  Maybe we didn’t see the signs.  I don’t know.  I’m not sure if we will ever know.  But, we can’t keep looking back, we can only look forward and hope.  Looking back hurts.  And getting angry doesn’t help either.  I know God never wastes a hurt.  My mom reminds me of this frequently.  If we can help one person, or couple out there, then at least some good can come out of this loss.

We received this card not too long ago, when we least expected it, from someone we do not know on a close basis at all.  It made me cry.  Tonight, when nothing seems to make sense, this card makes me remember how God is using us through this journey to touch other people’s lives.  Knowing that makes me feel better about “why.”