Tuesday, 19 July 2016

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

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)

  • Do nothing
  • Pain management
  • Lupron
  • Mirena iud

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)

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.

Thursday, 14 July 2016

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.
- 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?

- 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?

- 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.

Wednesday, 13 July 2016

Infertile Contradictions

I'm in pain. I'm excited. I'm hurt and angry. But I'm also so grateful.

Odd... yes. Sometimes living with the pain of infertility lends itself to moments of contradiction. My brother got married last November and him and his wife are already 9 weeks expecting. I'm sure pregnant on their first try, though I wouldn't want to ask or know.
Now anyone who has battled with infertility can only imagine how hard an announcement like this is to bear. My husband and I have been married 6 years, and been trying to start a family for 5 of them. Every announcement is another dagger to the heart and another couple leaving us in their dust. And family isn't any easier. I wish it were. I wish he could share this news with me and that all I felt in that precious moment (that I can't get back) was excitement and happiness for them. But while I did feel those things, my heart also broke a bit. I hung up the phone and broke down, only strong enough in the fleeting moments on the call. Had we been Facetime'ing or had he told me in person, he would likely have seen the anguish in my eyes, the struggle in my smile. But I'm sure he heard it in my voice.

What followed was not resentment, but a selfless act of compassion and understanding. He wrote me this:

"We just wanted to follow up on our chat because even though you might have been expecting this news, we can only imagine it was a little hard to hear, given what you and Homme Infertile have endured with everything. That said, we wanted you to know we are incredibly empathic to your situation and understand having any mixed emotions about it. Although this is obviously really exciting, we are still sensitive to what you’re going through. Please just know that we love and care about you deeply, and want only the best for you. We will always be here for you, even if it’s just to listen.

Much love"

Never have I ever been showed that level of understanding... from anyone, at any point on this journey. And to come from him meant the world to me, making me feel so incredibly grateful to have him in my life. So grateful for him and his ability to show empathy. Grateful for his words and kindness. I don't think you can understand how much an act of selflessness and understanding like this can mean to someone dealing with infertility unless you have walked in their shoes. So often people are frustrated with us 'infertiles' not being able to show/express happiness, or attend a baby shower, or whatever it may be. They are too closed off to the pain to understand just how hard every moment of every day is, let alone moments and interactions such as those.

It sucks. There is no way around it. But life goes on, and people have to live their lives. I am so excited to be an aunt, and can't wait to see my brother be a father. I am genuinely looking forward to that day. But the 9 months leading up to the birth are hard. There is no child to love yet, only jealousy over what is to come. But once they arrive, a lot of that pain and jealousy falls away. Not all...

What is also interesting is the effect these announcements can have on an infertile. I have not been ready to pursue another round of IVF, but the feelings of jealousy (and perhaps my competitive spirit) sparked a renewed motivation to go again. I can't explain it, and I judge myself for it. But it's my truth. The conversations between Homme InFertile and myself following this particular announcement were not easy. We both felt pain and fear. Fear that we wouldn't be able to give his child a cousin. Pain that we'd have to watch them become parents and never experience it ourselves. Confusion over how to resolve our broken path.

So we talked. And we cried. And we argued. And we exhausted ourselves running in circles over where to go from here. A relationship can only take so much grief, and we have been so strong for so long that I think we are tired of clawing our way through it all. My response is to fight harder. His is to give up, and those are at odds with each other. And that brews resentment.

These are hard things to face, and I feel grateful I have a husband who is willing to communicate through these struggles. Grateful he is someone who I can speak my truths to and him not fire back angrily, but instead try to understand where I'm coming from. Try to support me, even when it's not in the way I need.

So with that we've talked about counselling. Mostly for Homme InFertile, but I will attend, work, and support when needed. This tele-seminar also serendipitously appeared in my email inbox today so we've registered. If anyone else is struggling with the relationship aspect of coping with and navigating through infertility, check check it out. It's free, and it's this coming Saturday July 16th!

Also, this showed up on my news feed (okay universe... I hear you!) and it resonated completely and absolutely. Sometimes I feel resentful that no one asks how I am... but yet I also don't have the words or strength to be truthful if they did. This summed it up.

And finally to help me with the words I did a little googling and stumbled upon this gem. My fav (and what resonated most with me today) was the following:

6. Angry. Unfair is the password that gets you into the infertility club. Mary tells a story of a friend asking her if she was angry with God.“No!” she blurted. “I’m angry at pregnant women!” She knew this was irrational, but she also knew that it was good for her soul to be honest in safe places. You actually may be angry with God, and you may need to find some safe places to be honest about that.

The complete article here: http://www.stevewiens.com/2013/03/26/ten-words-that-describe-infertility/

And with that I'll sign off for today.
Love and light to you all on this journey!

Monday, 11 July 2016

Update and Adoption Considerations

It's been a while. I've taken a break to heal emotionally as well as physically. I recently went on a girls trip to Europe. Went all over in two weeks including Prague, Vienna, Venice, Rome, Malta, Aberdeen and Frankfurt. Quite the adventure and so so good for my soul and happiness.

Now that I'm back, of course I return to my family planning. I actually went and did a past life regression with Melanie Harrell who was trained by Brian Weiss. If you don't know who that is, he has a fabulous book called Many Lives, Many Masters. Anyway, she took me back to a few past lives, the second of which had an impact on my fertility. *trigger warning* I was supposedly raped by my father in that life which may have been leading to some blockages in my 2nd Sacral Chakra. If you don't know anything about Chakras, a quick google on the Sacral Chakra will explain that it all has to do with sexuality and creative forces.... so reproductive organs beware ;)

Anyways, was all very interesting and therapeutic regardless of whether you believe in it or not. I felt much lighter and got some much needed emotional healing from this.

I'm not sure I'm quite ready to dive into trying to conceive again (naturally or otherwise) but I have been in contact with Dr. Dulemba's office in Denton, Tx and scheduled a phone consultation regarding a laparoscopy etc. Apparently he's one of the best!

On another note, I've been heavily researching our adoption options. We are scheduled to attend an open adoption seminar to learn about the process. I've also put in a preliminary application with an agency to see if they'd be willing to work with us since we're Canadians living in the US but no green cards or citizenship. So we'll see what they have to say. I anticipate there being many a hurdle on that front. Hence "you can always just adopt" being a really annoying invalid statement (as well-intentioned as it often is). It's also absurd how much it all costs. Ugh... maybe we won't be buying a home next year. Boo.

So that's my quick update... where things are at with me right now. I've been enjoying not being so strict on a diet, and just relaxing into living life. It's important to take care of ourselves throughout this journey and that has certainly been my focus these last few months.

I'll keep ya'll posted!