Lupron Depot Injection #1

Today marks officially moving towards FET 3. My 1st of 3 monthly Lupron intramuscular injections is complete. For any new followers, this is hopefully going to shrink my Adenomyoma that an operation didnt get rid, which could be a culprit of my recurrent pregnancy loss.  

As I arrived at my RE’s office today with presents in hand, I couldnt help notice the pretty Christmas decorations all around me.  And as I sat in the waiting room, it dawned upon me that this is our 3rd Christmas in that office. Hard to believe. Last year, we sat there pregnant and the year before that, we were gearing up for our very 1st cycle there. I couldnt help but wonder what next Christmas will bring…will we finally have our baby home with us? I hope so. 

As I waited, I also noticed the very pregnant lady and her partner next to me. I overheard that they were there for an off-the-record gender scan. My RE does these for patients who have been through the IVF trenches around 15 weeks if they do not want to wait for the OB scan at 20 weeks. Its a really nice gesture in my opinion.  Anyways, you could see the delight on the couples faces.  For a moment or two, I was struck by grief.  Then I couldnt help be happy for them. God only knows what they have been through. I cant, and I wont judge. 

The injection in my a$$ was not too bad. My nurse did a fine job. I asked her to pose with the massive needle for a picture beforehand (gotta have some fun, right?) and she happily did.  

  
I jumped when the needle went in (ouch!) and felt (and am still feeling) warm sensations from the waist down on 1 side of my body. But thats it, no bleeding or any issues.  I still plan to just take it easy and lay around today regardless.  

I am pleased the injection went well, because I was a little nervous about it leading up until today.  Now that its done, I am more worried about the side effects. I guess only time will tell with those.  I did start my Aygestin today as well, which is a form of birth control known to minimize the menopausal state my body will now be in from the Lupron.  Please stay away menopause feelings! 

Upon getting dressed, I could hear the staffs excitement in the adjacent room. I knew immediately it was the gender scan taking place. When I exited my room, I was faced with my nurses in the hallway as they exited that room. It was a weird awkardness. One of them broke the silence and said, “its going to be you next,” as another chimed in, “and we will all be right there, gathered around you, hugging you!” and yet another, “oh yea, most definitely.”   I just smiled, hugged them, and wished them a Merry Christmas.  I dont say it often, but I am beyond thankful for their support.  

I set up my next injection for 1 month from now, and the 3rd for a month from that.  I also received the schedule of transfer weeks for each month of 2016. She printed one for me, which I guess they arent supposed to do (dont ask me why). Being a VIP does have its benefits! Lol. Looking at that schedule was not easy at all.  I realized I have been handed a transfer schedule 4 times now, everytime thinking I would never need to see it again.  

Hubs and I have kicked around the dates, and if all goes as planned with this current treatment, we would like to transfer in early April. This would mean I would do all of my monitoring over my spring break in March.  It would also be close enough to the end of the school year should another tragedy strike. And, it would mean our baby would be born before 2016 ends, our Christmas baby.  

I am glad to have the 1st injection under my belt. I have been putting it off since my hysteroscopy in September.  It was a hurdle that needed to be crossed.  Now lets pray that it does its job and shrinks that mass! 

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.  

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.  

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? 

Recovery in Progress

Where to begin? I have not posted since last week for a few reasons. One, I have been in bed pretty much since the surgery and two, I dont want to sound so pessimistic with what I post! But I missed writing, so I am back for a brief update. 

Thank God today is finally here because today is my post-op appointment. At my post-op I will get this horrendous, evil balloon taken out of my uterus. Hopefully, we will also get the pathology report on the mass, too. 

Overall, the surgery seems to have went really well. She only had to go in a few times to remove the large mass. Each time she went in she shaved it down, and then injected Vasopressin into my uterus, causing it to contract. Contracting spilled out any hidden adenomyomas or masses that needed to come out.  She gave us before & after photos that show just how much was removed. Wow, is all I can say. 

She then inserted the balloon into my uterus, so no scar tissue would form where the shaving took place.  Let me tell you, I have had a hell of alot of procedures done, but this balloon lurking around in my va-jay-jay for 5 long days takes the cake for being the absolute (physical) worst. 

The surgery took about an hour. When I woke up from the anesthesia, my cramps were similar to that of a d & c. They pumped me with some strong stuff to ease them which helped. I didnt get sick this time like the last time I went under which was nice. Not only did I have Zofran, I also had a patch placed behind my ear to ease any nausea. 

The doctor told me I would feel the balloon and that it would cause some cramping. Silly me thinking I would be back to work in a few days! Not. She gave me Vicodin, Motrin 600, & an antiobiotic to take. I started taking these Friday & havent stopped yet. 

It wasnt until the day after the surgery that I actually felt the balloon when I went pee. I freaked out. I thought it was coming out. I called my doctor and she told me its normal… I am feeling the plastic catheter that is attached to the balloon. She also told me to just shove it back up there if it starts to fall out. Seriously?

I learned pretty quickly that any movement makes the damn thing start to come out. Hence being bed ridden has become the best choice. Still in bed as we speak!  I attempted to use the bathroom this am, since I have not since Friday.  I thought it could be why I am having so much pain this morning. Literally, I was doubled over when I woke up. My cramps felt like miscarriage cramps. In my failed attempt to use the bathroom, the cord popped out of me, hanging all the way down to mid thigh.  

I screamed NO! NO! NO! I desperately tried to shove it all back up there and waddled back to bed. I put my heating pad on & have given up my battle with the balloon. I have accepted the fact the cord is hanging out of me. I will lay in bed until my appointment later today.

Exactly 6 hours until this monster is out!   

“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.

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. 

  

And the list goes on…More Results

I got some results back from my metabolic panel.  The nurse said it appears I have low blood sugar. This is all quite new and confusing to me, but I guess “normal” blood sugar is in the 70-100 range, and mine is dipping down into the 40’s.

At times, I have somewhat suspected something was up over the years.  For instance, if I don’t eat every few hours, I start to feel possessed and irate.  My stomach aches and growls, and I feel blood rushing to my head frequently.  I am super tired all the time, especially after I eat.  And when I was pregnant, it was even worse.  I literally NEVER stopped eating. I know many women say this, but it was truly out of control.  Hey, at least now we understand a little bit more why I’ve been acting this way.

The little research I have done so far tells me that high blood sugar is more common than what we have, low blood sugar. We really do not know if this could have played into our miscarriages.  However, we do know that according to the ASRM, “poorly controlled diabetes increases the risk of miscarriage.”  https://www.asrm.org/FACTSHEET_Recurrent_Pregnancy_Loss/

I also had my Antiphospholipid Syndrome panel repeated again last week, which I had done after our 2nd loss.  It came back normal after the 2nd loss, but this time my Lupus Anticoagulant PTT LA Screen came back slightly elevated (normal is less than <40 and mine was 43).  I have no clue what this means. Again, I just know we were having it tested because, “In women who have high levels of Antiphospholipid antibodies, pregnancy outcomes are improved by the use of aspirin and heparin.”  Well, I was on BOTH aspirin and Lovenox the past pregnancy and we still lost it.  So, regardless, there isn’t really much we can do with this one!

All this being said, we are meeting with the doctor later next week to discuss the plan of action for the sugar treatment, and of course the results of the biopsy too.  Heck, maybe I’ll even throw in all our questions about the Adenomyoma she plans to remove. Guess we better get our list of questions for her rolling again.

Results…Kinda

Well, I survived the hysteroscopy.  It wasn’t that bad at all physically.  For me, the emotional aspect of it was harder than the physical.  Going back into the same room we had all 3 of our transfers done at was tough.  I took 3 Valiums before the procedure, and was still shedding tears when the nurse came into the room to prep my IV.  Thankfully, Shane was there with me.  The doctor came in & they reassured me I wouldn’t feel anything, and I didn’t.  She also told me I wouldn’t remember much of what she would be telling us after the procedure, and she was right on that too.

The good news is that there is no: 1.) scar tissue, 2.) polyps, or 3.) fibroids.

The not so good news, or maybe it is good news, who knows at this point, is that she found a 2 cm mass in the uterus, which she believes to be an adenomyoma.  A what? Yea, exactly.  Here’s what I know so far on adenomyosis:

Obviously, this mass or adenomyoma, did not show up on my SIS back in November, before our December transfer.  These results leave us with many unanswered questions.  When did it form? What is it caused from? Will it come back (so far my research on adenomysosis shows it will; it’s a chronic disease)? How long until it comes back? What are the risks? Do I have to have it removed? Did it cause the miscarriage(s)? What exactly is this “mass” if it’s not a polyp or a fibroid??? And last but not least, what the f*** is wrong with me???!!

After the procedure yesterday, the doctor informed Shane that once the mass (she referred to it as a “boulder” in my uterus) is removed, there is an 80-85% chance of us having a successful pregnancy, and that it could definitely be causing me to miscarry. I know you think I should be thrilled with these numbers, but I’m not holding my breath.

Here’s why.  She said that this removal procedure (not even sure what it is called yet, there are several ways to try and attack an adenomyoma, & I do not know which approach she will take) involves her ordering a “special tool” since it is not performed very often, and that there is a chance of damaging the uterus when trying to remove the adenomyoma. Sometimes the adenomyoma is not even a true mass, it simply mimics one.  So it may be possible that it can’t even be removed at all.  I know that I need an uterine MRI before, and that I will get more details, and answers to all of our gazillion questions, at the pre-op appointment scheduled later this month.

For now, what it boils down to is that I will be getting the operative hysteroscopy done under general anesthesia at the hospital (aka place of death) on May 1st; exactly 1 year to the day that I started miscarrying our 1st pregnancy, and 5 days prior to the delivery of our second.

In the meantime, we will be awaiting the results of the biopsy taken during the procedure yesterday.  Those should come in sometime next week.  We are praying for only good things.  I keep asking God how much more he is going to give us.  I had to take a drive last night just to clear my mind.  I ended up sitting in the hospital parking lot.  Do not ask me why.  The place that I despise; the same place we rushed to for the 2nd miscarriage.

As I sat and cried, I started looking at all the hospital room windows from my car.  I began thinking about all the patients inside.  I realized it could be a lot worse.  Some of them are dying.  Someone out there is losing their mother or father.  I felt bad that I was worried about my “mass.”  I felt lousy for being such an emotional wreck.  I went back home soon after.

Before the hysteroscopy, our reproductive endocrinologist (who did the procedure), along with my regular OB both stated that it was highly unlikely that the procedure would show anything wrong with my uterus…in fact they told us only 15% of miscarriages are due to uterine abnormalities.  So once again, we defy the odds.  Just like they assumed our last pregnancy loss was due to genetics (because of the “stats”) and it wasn’t.

Maybe this will be an answer to our prayers.  I really do not know right now.  All I know is that I am so very tired.