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.

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!
http://www.frommaybetobaby.com/journeyproof/?mc_cid=3c39ad1e93&mc_eid=e7e27d73f9

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.
http://thoughtcatalog.com/heena-mak/2016/07/dont-ask-me-if-im-okay-because-i-dont-know-the-answer-anymore/

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!

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.

The Sad Truth About Infertility

NOTE: This was written about a week ago. I took some time to process it before posting to avoid any knee jerk reaction type scenarios. Funny how things work. This particular friend actually face-timed me AS I was writing this. If you believe in energetic connections like I do, this was definitely one of those moments. I believe she just knew I was feeling upset, and related to her... subconsciously of course. Anyways, enough of that mumbo jumbo. Feel free to read my emotional rant below. Take it with a grain of salt knowing I was just having a really crummy day all around.

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I'm not entirely sure what compelled me to write this today. I could pinpoint a moment scrolling through Facebook perhaps, but it's more likely a culmination of things, a build up to this moment in time. So with that, I want to share some thoughts on the sad truth about infertility.

First though, I want to acknowledge it's not all bad. There are good days too. Infertility can be something that makes us stronger, that tests us to our very limits, and breaks us down to little pieces, forcing us to build ourselves back up. We become warriors, and fearless. We learn perspective and grace. But we also carry a lot that is less than pretty... ugly at times, in fact. 

The sad truth is, infertility makes us jealous. It makes us resentful. It can even turn us into anti-social and closed-off individuals if we let it. Facebook for instance, a place of social interaction, sharing of pictures and our life adventures, becomes a place to fear for us infertiles. It becomes a place to avoid. Why? Because it bears so many reminders of the life we so desperately desire, and our inability to achieve it. It depresses at a time when we so desperately need to be lifted up. The irony is we log on to escape boredom or to be lifted, but it can have the opposite effect. Sure we can be happy for our friends and their beautiful children, but those images that they share so freely feel like a dagger to our hearts with each and every post. We love seeing the smiles on your face, and love in your eyes, but it simultaneously makes us sad. We don't have beautiful maternity photos of ourselves. We have no beautiful memories with our children to share. We lack, or feel our lives lack. 

As our friends and family move forward with their lives, we feel like we are being excluded from a very precious and prestigious (although I'll acknowledge, seemingly tiring and challenging) club. We aren't ignorant. We know motherhood is no walk in the park. Those warrior mothers deserve to share their triumph. I don't suggest we take away from their glory. But, unfortunately, their glory can make us feel like even more of a failure. See, infertility is something you can't really understand until you experience it. You might think you know the pain, or can imagine it, but it overwhelms. Life is filled with constant reminders of our ineptitude. I can't conceive, therefore I am not worthy. I am not worthy of bearing a child. I am not worthy of a family. I am not worthy of your precious mommy's club. 

You can't commiserate with me on your lack of sleep, because you know I will likely feel little sympathy, either feigning it unconvincingly, or instead telling you to be grateful for the precious gift of experiencing motherhood. You tell me I say this now, that I don't know or understand what's in store, and that is exactly the point. I don't know. I don't KNOW if I'll ever know. But at the same time, I know so much. 

I know the pain of years and years of sleepless nights wondering if this treatment finally worked. 

I know the exhaustion of self-administering needle after needle with nothing to show for it.

I know the emotional turmoil of feeling like I've let my husband down.

I know the sadness of a heart that aches for something I don't know that I'll ever experience.

I know the heartbreak of wanting so fully, and working so hard for it, to come up empty handed, month after month... year after year. 

I know I don't KNOW. And that hurts. 

We are no longer part of the same world, you and me. We are no longer sharing in the same human experience. Mine differs drastically from yours, and yours from mine. And that's okay. But you see, I am forced to accept and be comfortable with your over-sharing of baby pictures, while a small mention of my infertility is off-putting. It's taboo. It makes you and everyone else uncomfortable. You don't know what to say. You think I am trying to make you feel bad for me, or guilty for being happy, but that couldn't be further from the truth. I want you to be happy, and am glad you are. I want to be happy too. Some days I am! Some days I'm filled with so much joy that I forget about my struggles temporarily. Some days are harder. Society doesn't know how to handle us. We're the outliers, or are led to believe we are. But we infertiles are millions. It's just that society doesn't like talking about it. 

The sad truth is that today I feel ugly inside. I feel jealous and resentful. I feel like I've been dealt a crap hand deal after deal with no option to trade in, while those around me are handed royal flushes. I am sad for myself. And I judge myself for that. As if being infertile and dealing with all of this isn't enough, I feel bad, for feeling bad. 

I feel like I should be grateful for my health. 

I feel like I should be grateful for a roof over my head, and a healthy meal to eat. 

I feel like I should be grateful to have found the love of my life, and even be working towards a family.

I feel like I should forget about the pain and suffering I am experiencing because it could be worse.

Well of course it could be. Everyone has a story to tell. Everyone experiences pain and heartbreak. If you look for someone who has it worse, you're undoubtedly going to find them. The world is full of pain and misery. Maybe you are scrolling Facebook and sick of seeing pictures of me and my husband adorably traveling the world side by side with smiles on our faces, and that causes you pain because your relationship isn't strong, or maybe you are doing this solo. I get it. I'm blessed with a beautiful relationship I believe is 1 in a million. I AM grateful. I DO feel blessed. But that doesn't mean the pain I feel surrounding my inability to start a family is any less valid. 

I have friends afraid to come crying or complaining to me about trying for 3 months. DO it. COMPLAIN! It's okay, I'm not going to bite your head off so long as you do it with empathy in your heart. I've been there. I remember the psycho mess I was back then. I'll help guide you. Don't face this pain alone because you think mine is worse. Accept mine, and I'll accept yours. We're in this together! When you do get pregnant, don't just post it on Facebook and avoid me, that only wedges our worlds further apart. Instead build a bridge of understanding between us. Text me your news very lightly and allow me time to absorb it on my own. Don't Facetime me and put me on the spot, in a position to put a smile on my face to make you feel good. I don't ever want to take away from your glory, but understand it will be hard for me, just as I did for you. Continue to reach out to me, ask me how I am, how I'm doing. Don't stop asking because I don't bring it up. Since you've had a kid, I feel like maybe you don't care anymore... and I feel very alone. 

I know my mommy friends feel this way. They feel afraid to share their lives with me. Just above I told you I wasn't going to feel bad for you when you complain about the pains of motherhood. Don't misunderstand... I will serve as a reminder to why you did it. I will serve as a reminder to be grateful. And if you don't like that, maybe complain to your other mommy friends, and instead let me enjoy your company without the conversation always being about you and baby. It may be hard for me, but the truth it I never want to stop being part of your life. You feeling awkward about it makes me feel like the kid that got invited to the party that no one is friends with... they're just there because people felt bad discluding them. Don't include me just for the sake of it. Include me because you want me to be part of your life, and because you want to continue to be part of mine... even if it no longer matches yours, or isn't always rosy rainbows and sunshine. Because I love you, and cherish our friendship, even if our lives have veered in different directions. Hopefully it's only temporarily. But be patient with me as I am unbearably impatient with myself and my own circumstances.

Right now I need a friend. I need the comfort of feeling my battalion at my side. But yet I feel very, very alone.