The Verdict is In 

We will start the Lupron depot intramuscular injections December 1, immediately following our Thanksgiving vacation. The 2nd injection will be a month later, around December 30th, and the 3rd, another month later, around January 27th. 

Our H/S and SIS combo will take place towards the end of February after the Lupron has had a full 3 months to work its magic. 

If all goes *well* and the mass is gone, our FET will be right in the beginning of April 2016. And of course if all goes *well* then, we will finally be bringing home our Christmas miracle.  Can you even imagine that?!?

Thanks for the feedback on my prior post about when we should start the injections. You all had some amazing points and ideas, and I dont know what I would do without you all. 

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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.  

Always Room for Improvement

Right off the bat, I should say that I know no person is perfect, and no IF clinic is perfect either. Perfection should never be the expectation. However, in any profession, if you aren’t reflecting and trying to improve or do better, that could be a problem. Experience only makes you wiser if you learn from it and apply it to future situations. I know this from being a teacher the past 5 years.

This being said, we have made a list of things we think could be improved upon at our current clinic, or any clinic for that matter.  Here is what we have so far:

  1. The most advanced uterine tests should be performed on all patients before IVF. This means a Hysteroscopy should be done on every patient prior to IVF.  You heard me right.  That is our opinion after the hell we have gone through. We are proof in the pudding that an SIS and HSG aren’t always enough.  If we had done this procedure from the start, there would be no questions in our minds or our RE’s if that fibroid had truly been around for all 3 losses or not.  
  2. PGD should be offered to all patients before they begin IVF.  Looking back, we were never informed of this option & I wish we had been. We cannot do PGD testing now with our remaining frozen embryos, as it can only be done in the days following the retrieval.  We never knew about this option until we miscarried and started searching the web. Suddenly, we started seeing all of these women who did PGD before transferring.  I mentioned it to my doctor at that point, and found out it was too late to genetically test our embryos.  Since we looked good on paper (under 35, appropriate weight, etc), perhaps it was assumed we would succeed & not need this expensive option added on. If we were to miscarry again, I do not know if I could go through another transfer. Instead we have discussed a surrogate. How much more confident we would feel knowing we were transferring a genetically normal embryo into a surrogate than not! While I get that PGD is not 100% accurate, it should be offered to the patients if it is a service the clinic provides.
  3. RE’s should discuss the worst case scenarios upfront with their patients before they begin IVF.  When we began IVF, we were so set on it actually “working” that we didn’t think of anything before that point or after that point. We didn’t discuss that only embryos making it to day 5 or 6 would be kept.  We never talked about the chances of chemical pregnancies, miscarriage, or RPL.  We had no idea we would go through the torture of beta testing and what would need to happen with all that if we ended up pregnant.
  4. The RN’s should not do all of the ultrasound monitoring during an IVF cycle.  This is probably common at most clinics simply due to the amount of patients undergoing treatment.  It was never an issue to us before we miscarried either as we do trust our RN.  However, our nurse ended up missing something early on in one of our cycles that our RE probably wouldn’t have if she had been the one doing the ultrasounds to begin with. Moving forward, we have told our RE we will not be monitored by anyone other than her and she has agreed this is best.  If our RE would like to have the nurse with her for another set of eyes, great! Bottom line…I want the person who will be transferring those embryos into my uterus monitoring it before hand. No exceptions.
  5. All viable embryos should be considered for transfer.  At our clinic, only embryos that make it to day 5 or 6 are transferred.  On the day of the retrieval you are handed a piece of paper that says “be here on day 6 at _____ am for embryo transfer.”  I know several women who have had successful day 3 or 4 transfers, so I do not think it is fair to limit to just a day 5 or 6 transfer. Thankfully, our 8 embryos made it to day 6, but what if they hadn’t?
  6. After retrieval, the embryologist should provide daily updates on how the embryos are doing.  I never once talked to the embryologist for an update. I received a voicemail the day after retrieval with a brief summary, but that was it. Those days after the retrieval are sooo stressful as it is, and remember we had to wait until day 6 not knowing anything. In my opinion, not knowing anything until you show up for the transfer is adding a lot of unnecessary stress to the situation.
  7. Get input from the patient about their IVF treatment plan.  Sit down and show patients all of the different “protocols” available for an IVF cycle. Short, mini-stim, antagonist, un-medicated, etc. Tell them the success rates with each. Explain what type of patients you have seen do well on each type of protocol.  Understand that this should not be a “one-size-fits-all” approach.  Ask them questions about their bodies, and act like they are educated. Through this process, I have learned that I know my body better than anyone. Just because Susie did well off all of the drugs you gave her, doesn’t mean I will. Show me what is available, whether it is your preferred method of treatment or not.
  8. Clinics should disclose what will happen if you do get a positive beta post IVF.  We never talked about the cost to continue a pregnancy if we achieved one.  We had no clue we would be spending thousands more on medications after the actual IVF cycle itself ended.  Medications are only paid for up until the beta test in case you get a negative.  If you get a positive, you will need meds for 6 more weeks, at least.  That adds up to thousands more.
  9. Designate clear roles within the practice.  Since it is so easy to communicate with everyone at the practice (listed as a perk yesterday!), you never know exactly who to talk to about things. For example, we have had prescriptions not called in, called in twice by different staff members, etc. It would be great if each person had a clearly designated role or each patient had a clearly designated go to person.
  10. Wellness services should be provided at clinics. Everyone goes into treatment hoping it will work the first time.  But, that is not always the case.  Actually, majority of the time it is not the case.  After all of the emotional and physical trauma, we wished that our clinic offered things like acupuncture, counseling, etc.  Don’t get me wrong, when asked, they provide recommendations, but we have ended up finding our own specialists in these areas.  It would be great if clinics started including these in their treatment packages.

Hind sight is always 20/20. But we hope this list is helpful to those searching for a clinic to call home!

Here We Go Again

Can’t say I am looking forward to yet another Hysteroscopy later this week.  This will make Hysteroscopy number 3, and I’m sure it won’t be the last.  In the future, should we choose to transfer one of our frosties, we will undergo another before our cycle begins.  

No more SIS’s for me like a typical IVF patient.  The Hysteroscopy shouldn’t miss a uterine mass, and it appears in our case, one of our SIS’s most likely did.  The Hysteroscopy is capable of doing everything the SIS should, plus more.  The main difference between the two is the Hysteroscopy is guided by a small camera placed inside the uterine cavity, whereas the SIS is guided by ultrasound only. This being said, the Hysteroscopy will pick up on even the smallest abnormality in the cavity that an ultrasound might miss.

I am hoping to wake up from the anesthesia and receive some positive news. The images my RE gives us after will hopefully provide that reassurance & we can compare them to the images from Hysteroscopy 1 & 2 for progress.  Positive news at this point would mean 3 things:

  1. No masses found
  2. No placental tissue found
  3. No scar tissue has formed

It’s now been 4 months since our 3rd loss.  However, we have been dealing with procedures surrounding pregnancy #3 since October; for a total of 8 months now.  In October we got our pre-IVF SIS, in November we started our meds, in December we transferred & got our BFP, in February we miscarried & had a D & C, we had Beta’s every week from February until April (8 weeks to drop from over 100,000 to 0), Hysteroscopy #1 in April, Hysteroscopy #2 in May, & now, (we pray the last), Hysteroscopy #3 in June.

This is not to mention that during these 8 months we have passed up Baby 1’s due date on December 24th, and Baby 2’s due date most recently on May 3rd.  So, as you can see, the road has been long and quite hard at times.  We are praying it is time for a new chapter 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? 

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.”  

Hysteroscopy

Despite everything we have been through, I must admit, I am still extremely nervous to get this hysteroscopy done today.  I suppose it’s been a while since I have had a “first” so to speak.  I know what to expect when I get a HSG, or a SIS, egg retrieval, transfer, or even a D & C unfortunately. However, I do not know what to expect with this hysteroscopy/biopsy business. Reading about it, or hearing how it was for someone else, isn’t the same.  At least from my experience, it always seems to differ.

I’ve spent some time trying to put my finger on what else could be making me so nervous, other than it being a “first.”  I know it can’t be the fact that I will only be in a twilight state, rather than completely knocked out.  I was in a twilight for our first d & c and I survived (although being asleep is definitely preferred).  Of course, I pray not to remember anything or feel any pain, just like any normal person would.

Perhaps, it’s the biopsy part that is freaking me out.  Whenever I think of a biopsy, I think of someone who is being tested for cancer.  I picture the doctor slicing off a piece of you, almost like a piece of meat.  Sorry to be so graphic, but it’s the truth.  

Or maybe I am just frightened because this is a last resort for us.  There are no more tests to be done.  This could be the missing piece to the puzzle, or so we hope. Honestly, my fear is probably a combination of all of the above.  So, today, I will keep trying to remind myself of what my mom has always told me, “there is nothing to fear except fear itself.”  

Fear-is-nothing-more-than-an-obstacle