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