Terms

So I saw a post on Facebook the other day... from the account "Simple Reminders" and it was a story about a pregnant woman wearing a t-shirt with a rainbow over her belly. The story illuminated the fact that this term has become widely more understood, and therefore certain strangers knew instantly that this woman was indeed carrying a "Rainbow Baby". Beautiful of course, and great that awareness of miscarriages and pregnancy after miscarriage is becoming more widely understood and all, but it left me feeling a little empty.

Why? Because, well, like many others, I simply have never been pregnant... at all. And should I fall pregnant, there is no "term" for that baby I would be carrying. It wouldn't be a rainbow baby, no, because I've never experienced a miscarriage. But I HAVE experienced 5 years of infertility, failed treatments and months upon months of disappointment, heartache and crushing of dreams. So why when I get pregnant do I fall under "Pregnant after Infertility"? Not really glamorous, and honestly... those "rainbow babies" also fall into that category too. Maybe "Miracle Baby"? I've heard this term thrown around, but truth be told many other things also fall into this category... premies, babies born with some kind of illness or disease, babies born to women after going through menopause.

I guess part of the question I ask myself, is why do I feel I need to be defined by a term? Why is this important to me. I like to self reflect when I'm feeling angry or upset and really delve into the deeper rooted issue at play. In this case, I think why I feel so frustrated I'm not given a term is that I don't feel validated for the pain I'm enduring. 

Women who go through a miscarriage are warriors. They deserve all the recognition and celebration in the world for their little Rainbow Babies. I don't EVER want to take away from that. But at the same time, I want that recognition and celebration too one day... and it just doesn't seem to be a thing. And I find that disheartening.

So I'm brainstorming a moment here... what kind of term could we coin for such a thing? For women who have repeated implantation failure (in this case we'll specify that to include at least 3 failed transfers).

One idea I have is based on the quote "It's always darkest before the dawn."

Dawn Baby
Sunrise Baby

Next idea is "Risen from the Ashes" because we women of repeated failure feel like we die inside each and every time.

Phoenix Baby

Based on the calm after the storm

Storm Baby

Final idea is based on the fact Hope is eternal, and that we never lost hope, never gave in to failure.

Hope Baby

I'd love to hear any and all ideas anyone has.... or if there already is a term out there, I'd really REALLY love to know about it ;)

Long Conversations

So yesterday I had my phone consultation with Dr. Dulemba regarding laparoscopic surgery for my endometriosis. He's a funny character, and has a quirky sense of humor, but he is also incredibly knowledgeable and forthcoming with his opinions and what others may think of him. I found that refreshing, and makes me respect and trust him.

We had a long conversation about endo and about hormones and ways to go about "treating" it. I put quotations because really the only true treatment seems to be surgery, but there are certainly options to manage the disease as well. Nothing cures it.

So anyways, it was quite a scientific discussion, and a lot of information was thrown my direction. First thing he said to me was, do you have a way to record this? So I did... though I'm not sure I could go back and listen to it all over again, it was a long thorough talk. He asked me some questions to get a sense of how long I've been living with symptoms, how I've coped, and he discovered I am trying to conceive.

This is where I got a little nervous. He is not, nor does he claim to be, an infertility specialist. He understands that he knows very little about endo and its effect specifically on fertility, and instead referred me back to my doctor. Logically though, we talked through some of my concerns and it was nice to hear from someone who specializes in endo that my gut instincts about having surgery before another attempted cycle weren't out of left field. But my RE put some concerns in my head about doing more damage than good, and discouraged me with the facts that there is no evidence to support that surgery increased fertility rates.

I knew before going into this that a surgeon is going to recommend surgery, and an RE is going to recommend IVF and meds. It's a well known fact in the immunological support community... but that doesn't help in terms of coming to any kind of decision.

I guess where my head is at now, is that I've done 3 rounds of IVF with no success. Sure, an immune protocol COULD be my winning ticket, but what if its not. What if I go through a whole other round to be unsuccessful and have used up 2 excellent embryos. What a waste. Why not give myself the best shot possible. At this point, I really do believe it would do more good than harm. But I'm no expert.

Why does no Endo Fertility doctor exist? Ugh. Way too specialized I suppose. I know that Dr. Braverman and Dr. KK definitely take endo into consideration for their patients, but they're expensive and far. This journey is expensive enough as it is, and with us looking into adoption, I don't want to be completely out of money to explore other options if I need to.

Anyways, so I'm thinking surgery at the end of August. Homme InFertile and I talked about it briefly last night but my head was spinning and I was running around like a chicken with my head cut off (no literally, I burned myself even because I was so all over the place). I think tonight we'll discuss it further and I will call the clinic to get information regarding insurance coverage etc. My plan of action is surgery mid/late August, 3 months of lupron, and then a FET. But a little wishful side of me wonders if maybe, just maybe I could get pregnant naturally after surgery. I don't know if that's a pipe dream though, so more to think about.

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In case anyone is interested, here is my very scattered note-taking from the call. It may require some deciphering haha ;) but feel free to ask me about it.

Colonoscopy ***

Endo - Immune System Disease  

Commonly also have Interstitial cystitis

http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/symptoms/con-20022439

http://endometriosis.org/resources/articles/interstitial-cystitis/

Women’s Health Initiative (WHI) - breast cancer and hormone outcomes (study)

Pelvic Floor Dysfunction - physical therapy (it is real, people do benefit, but it’s overused)

Options:

• Do nothing
• Pain management
• Lupron
• Mirena iud

ROBOT LAPAROSCOPY***

Sometimes they put a barrier in… but this is foreign tissue (which in some cases can create more scar tissue)

they use amniotic tissue to try and avoid this (it’s slippery and ideal) but is very expensive (a very small piece is like 2k) - even then it’s not perfect

Stitch up the ovaries (ovarian suspension) for the primary healing period (about a week and a half)

Second look laparoscopy (surgery a week apart)

Ultrasound

Pre-op visit (day before)

Surgery the next day

Wednesdays and Fridays for Surgery

15th-26th ish

Office manager - insurance - melinda

Amniotic tissue is NOT covered.

Follow Up Questions

These are the questions I asked our doc...

1) We'd love to know your personal gut reaction, thoughts, musings or otherwise. As the professional, we defer mostly to you to tell us in your opinion, why you think we've had 3 failed IVFs as a healthy young couple. What would your plan be moving forward. 

2) Endometriosis... given the fact that we have never gotten pregnant successfully, I am beginning to feel that perhaps it is time to pursue laparoscopy/surgery to discover how extensive the disease is. 

- Do you support this/think this is a good idea?

- Do you think it may aid with implantation?

- Do you think that the endo is a significant factor in our implantation failure?

- What are your opinions on other treatments in terms of FET protocol (lupron, prednisone, bcp prep, or otherwise)?

3) Immune Response

I've sort of felt from the get-go that my body rejects the embryos. I know we did Intralipid, but I'm just curious on your thoughts since they recommend blood thinners in a lot of these cases. I had asked about baby aspirin, but that was not recommended. Most of the immune related treatments would also likely be linked to the above endometriosis topic, but I am curious about the chance of a clotting disorder or what could be done to stop this immune response. 

- I believe I might have celiac (given my severe response to wheat along with confirmed lactose intolerance which often go hand in hand). Do you recommend I have a scope? What would this tell us in terms of treatment (I'm already GF/Dairy Free)?

- Is more testing needed?

- What tests/information is out there for immune related infertility?

4) Assisted Hatching - this is something I sort of had asked about prior to our transfer but was not recommended. 

- How did the zona pellucida on each embryo look before transfer? 

Is this something that may be a factor in our implantation failure? 

- Did any of our embryos begin to hatch before the freezing stage?

If not, could this be indicative of blastocyst arrest (I think that's the term at least)?

5) Male Factor

- How did the sperm sample look on retrieval day?

- Given my clear results (minus MTHFR), could there still be a reason to have Homme InFertile genetically screened (ie. if my eggs are not "strong enough" to compensate for poor dna (or repair it?)?

- Could this be a factor in why we are not getting pregnant?

- How were our PICSI results? Did a large number appear to be normal whilst using PICSI for sperm selection?

- Would you recommend we pursue the DNA fragmentation test at this point to get further insight to any or the extent of the fragmentation? 

- If so, and if Homme Infertile's results are highly fragmented, what would this mean in terms of our likelihood to conceive with his sperm? Would any course of treatment differ?

5) PGS - we had contemplated doing this, however financially were not fully in a position to do so, and in addition, were not certain at our age how necessary it would be. 

- Do you think there is a high likelihood genetic abnormality is the primary reason for our lack of success?

- How were our embryos frozen? 

- If they were vitrified, have you ever done a thaw, test, and re-freeze? What are the outcomes like? 

...I have also heard of thaw, 24 hr test turnaround and day 7 transfer, but not common - thoughts?

- Do you have any recommendations on this factor for us, given the position we are in?

6) Progesterone 

Because I spot during my luteal phase for many days every cycle, progesterone has always been a concern for me... I did NOT spot at all during use of suppositories this cycle which is encouraging.

- Have my progesterone levels been checked and HOW normal were they? (I know there is a normal range, but was I on the low end of normal? etc)

- Many women speak of PIO shots, would this be a stronger course of action for me in the future for FET?

- My progesterone was not monitored throughout my cycle, is this something you would consider moving forward?

7) Lining

I know we briefly touched on this this a.m...

- How was my lining on transfer day? (ie. thickness, evenness etc)

- Receptivity, I know we're both concerned about this, but what would be different in terms of protocol or prepping for transfer? 

- Uterine Scrape (I know this is mostly new, and more common in UK), what are your thoughts?

- Would this mostly be addressed through laparoscopy/hysteroscopy?

8) Further testing

- Thrombophilia ... especially with endo I was surpised you didn't recommend at least aspirin, but is there a chance I have a clotting disorder? Am I crazy to think there is a link?

- male or female karotyping defects (not even really sure what this is)?

- confirm my NK cells or elevated inflammatory cytokines levels? (relates to immune above)

- anti-sperm antibodies in Homme InFertile? I'm probably making tests up ;)

- anything else I'm missing/not thinking of?

9) Surrogacy 

- Given my endometriosis and repeated failure, is surrogacy a strong option for us if lap/surgery come up with no explanation?

- Do eggs/blastocysts conceived by a person with endometriosis have good results with surrogacy pregnancy and live birth rates?

- What are your general opinions/thoughts on this for our case? 

- Obviously this is really expensive, if I had a friend (doubtful but just covering bases) willing to do it for me, what is the testing process like?

Beta Day, Zero Expectations

I so don't want to go in to do my beta. This time around I swore I'd stay on progesterone until I had my beta, and I did... so AF still hasn't come (which is surprising actually) but good indication that I have good absorption of the progesterone suppositories at least. Part of me is curious to see if any level of implantation happened, sure, but I'm just so emotionally sensitive, I don't want to deal with it all right now. I want to just forget about it temporarily.

I'll update later on how that all goes. Hoping to get to chat to the doc today about it, but not holding out a huge hope or anything. We are going away for the week tomorrow and that'll be an excellent distraction.

When we come back it's straight into NIAW (National Infertility Awareness Week). I'll be blogging and entering the "Bloggers Unite Challenge" hosted by Resolve. I strongly encourage you to do the same! It's time to increase awareness, break down stigmas, and #StartAsking !!!

Direct link to details: http://www.resolve.org/national-infertility-awareness-week/bloggers-unite.html

Where to go from here...

Another negative this morning and I know it's really over. I'm technically 13dpo (or 8dp5dt) ... today was our initial test day plan for a reliable result and it's stark white (as expected).

So picking up the broken piece of another failed cycle and trying to move on. Or forward at least. Beta is still scheduled for Monday (though we know what the result will be), and our WTF appointment to follow directly.

I've made the decision to have surgery for my endometriosis before pursuing any further steps. I've found a great doc down in Houston, where we're moving next month or so. I'll have a consult, see what she has to say, do a laparoscopy or hysteroscopy depending on what she suggests and then see what she discovers. We're also considering PGS testing on our frozen embryos but we know that's not ideal/easy/or in some cases even possible since they're already frozen. Hindsight is always 20/20. It just felt so different this time, I guess we were just hopelessly optimistic.

I might be M.I.A for a while as we grieve, move cities (oh goodness), and get settled in our new life. Though doubtful I'll be able to stay away truly since this is such an outlet for me.

I hope to come back and finally finish my story with a happily ever after. One can dream.

CD Who The F*ck Cares

Glaring Stark White Big Fat In Yo Face NEGATIVE.

Ugh. Lots of processing going on right now. I am only 8dp5dt "ONLY" but let's be honest, that's equivalent of 13dpo and hence AF is due for me tomorrow based on my 13 day luteal phase.

Contrary to previous cycles, I'm not going off meds, and I AM planning to still go to Beta on Monday. Doc agreed to meet with us for our WTF appointment same day.

I refuse to break down and cry. I've been here too many times before. I don't want to be sad anymore. Chin up and moving forward.

F*CK

Why did I read this?

What I'm fearing to feel once again this cycle but hoping is not the case...
Cue the waterworks.
http://www.scarymommy.com/ivf-embryos/