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.

Surgery, FET, or Adopt?

I wish I just had a crystal ball sometimes... like I could just see into the future, have confidence knowing all will work out. I guess that's what faith is supposed to be, but I'm running low on that these days.

See every decision I make leaves me with a plethora of what-ifs. What if I had of held off transfer because I was sick last cycle? What if I hadn't of been sick? What if I had of done PGS? What if I had of pushed for immune protocol? What if we had done more testing? What if we had of put back in 3? What if we had only have put in 1? What if, what if, what if.....

It's hard to not look backwards, when you can't look forwards. When there is so much uncertainty in your future. When you have too many options... too many paths to choose from. For me, these days, those options are the big 3.

1. Surgery to treat endometriosis and hopefully increase odds of success following recovery.

2. FET with 2-3 of our remaining frozen embryos with a full immune protocol in place.

3. Adopt a newborn that is biologically not our own.

Within each of those there are more options.
Surgery:
- do we try right away after, or do we allow time to heal?
- do we try naturally following?
- do we follow this with IVF? or IUI?

FET:
- do I do intralipids even though I have a reaction to egg?
- do I do 6 months of lupron before trying? or just a few weeks like RE advised?
- do we put back in 1 to not muddle, 2 which we've done every other time, or risk doing 3?
- do we wait to do FET until I've been super good on my diet for 6 months?
- do we undergo any additional testing to get more answers?

Adoption:
- do we consider open adoption?
- what ethnicities are we open to?
- how does this work for Canadians living in US? Do we go to Canada?
- do we adopt internationally?
- do we accept twins/triplets?
- do we accept disabilities?

There's a lot to consider, and unfortunately I DON'T have a crystal ball, and unfortunately no one can tell us what is best for us at this time. But we don't know for ourselves anymore either.

Serious Conversations

How far are you willing to go to have a family? It's an important question to discuss with your partner when you start infertility treatments. It's important to be on the same page. Homme InFertile and I had that discussion... we were responsible in that regard, but it turns out... he forgot.

He forgot we had drawn a line in the sand... he forgot that we initially said 3 IVF transfers, which changed to 4 once our first retrieval had a low yield. He forgot that our next transfer would be our last.

So it's no surprise that me mentioning our last kick at the can and moving on came as a bit of a blow to him. It felt out of the blue... but it wasn't.

This whole discussion came out of our planning for our next FET (frozen embryo transfer). Since we are moving to Houston in a few short weeks, we have to put our TTC journey on hold for a moment before re-convening. First we'll have to get settled in our new hometown, then I go on a girls trip to Europe (lucky me), and then finally when I'm back we can re-group and re-focus.

But I'm naturally a planner, and I wanted to discuss now what our path will look like. I am half tempted to go see Dr. Braverman to get a full immune panel done. But this comes at a price. After looking into it, and going back and forth quite unsuccessfully via email with an intake coordinator, I was feeling a little apprehensive about the 3k price tag... and that doesn't even include out of pocket test costs. Ugh. Plus I'm fortunate my RE is willing to do an immune protocol without the tests to warrant it. So that's a lot of money that we prefer not to spend if we don't have to. Plus, it's money we don't exactly have at the moment with Homme InFertile having been unemployed the last few months.

So anyways, I wanted Homme InFertile and I to be on the same page with deciding whether to get all this information prior to our last transfer or not in the interest of giving ourselves the absolute best possible chance of a positive result. So it was within this discussion that are misunderstanding blossomed into an emotional and heartbreaking discussion about when to give up. When to admit defeat. When to walk away and turn our backs on our unborn biological children.

We had to let that sink in. We may never have our own biological children. The odds seem to be not in our favour. And that's a hard pill to swallow.

So we talked about a lot of things. My feelings of inadequacy, my fears of him turning his back on me, my fear of him resenting me, his fear that he's not enough for me, his feelings of being stuck - unable to move forward, my fear that I'd resent him if he weren't ready to adopt... the list goes on and on. As you can imagine. These aren't easy topics. We were emotionally and mentally drained, but it was a very positive discussion. Being on the same page is so incredibly important to coping with the stresses of infertility.

Anyways, I'm now looking in to Dr. Kwak-Kim who takes more insurance, while at the same time seeing if my current RE can send us for DQ-Alpha matching tests. We'll likely go on prednisone regardless, but part of me just really wants to understand why this is all happening. Plus, if we're a double match nothing we do will necessarily help us get pregnant other than surrogacy or donor sperm who doesn't match me DQ-Alpha wise....

Food for thought...