Tearful

I have been feeling tearful today.  The trigger?  My last phone consultation with an RE.

I had scheduled this phone consultation a month ago.  It was scheduled for July 8th at 1:45pm.  In anticipation of it, I called the 2pm client’s mom and scheduled them for 2:15pm.

Yesterday I scheduled an phone conversation with the precycle coordinator at UCSF to go over the checklist of things that I need to get done.  It was to take place  today at 10am.  I figured that I could do one phone call in the morning and one phone call in the afternoon.  No problem.

A little later in the afternoon, I stared at the appointment reminder email for the phone consultation and realized that the time of the phone call was supposed to be 1:45 pm, but EASTERN TIME.  The RE is in New York so of course the phone call is 1:45 pm his time, which translated to 10:45 am my time.  DUH.

Good thing I caught this mental mistake the day before the appointment.  I was confident that I could finish the UCSF phone call by the time I call the New York RE.

Fast forward to today.  The phone call with UCSF was 40 minutes.  My head was spinning writing down all the previous lab work and procedure that I have to check and all the new lab work that will be ordered.  When the phone call ended, I quickly went and got ready for my 11am client.  At 10:45 am, I called the clinic of the New York RE.

Very nice guy on the phone.  Very obviously did not read my history that I took a lot of time to fill out.  He asked me a few pertinent questions.  Then his conclusion:

1) There are usually three causes of high FSH: familial, autoimmune problems, and endometriosis.  It looks like mine could be endometriosis (a small patch of endometriosis was removed during my surgery to remove fibroids back in 2011).

2) He suggests doing an immune testing panel with him, which will cost $3000.

3) He suggests doing laparoscopy to remove all the endometriosis that exists inside me.  Usually he will have to accurately diagnose it.  But since endometriosis has already been discovered in my system, we can skip that part.  He predicts that since the surgery was three years ago, the endo may have worsened at this point.  He recommended going to a doctor that specializes in stripping away the endometriosis rather than just lasering it away.

4) I should go see him for a workup and he can talk about the next steps.  He can work with local doctors if we decide not to do IVF again.  If we do IVF, we have to do it there.  He thinks that for my age, I should continue to pursue IVF because I don’t have a lot of time to waste.

5) He thinks that my high FSH, poor responses to stimulation, and egg quality all have to do with endometriosis.  After treatment, my response should be better.

All this information was gathered in a 10-minute phone conversation.

I was feeling very overwhelmed.  This is a brand new suggestion.  I have asked Dr. E, my previous RE, and Dr. No Nonsense about the cause of my high FSH.  They both said that it is difficult to know the cause.  I asked Dr. E if it could be because of immune issues, and she said that it could well be, but there is no treatment for it.  Dr. Y from Southern California is the only doctor who has ever said that my endometriosis is a factor in my response to stimulation.  However, he never suggested a surgery to remove it.

My head felt overstuffed with ten thousand pieces of information.  Where do I go?  Do I do a surgery?  Do I just go with the local doctor and try a few more cycles?  Do I try to remove the endometriosis to see if my response is better?  Am I not trying my best if I don’t do what this doctor suggested?  Am I not giving it my all if I don’t go the difficult route of traveling out of town for treatment?

I am going to turn 40 in two days.  A year ago, we started our first IVF cycle and had the retrieval on my birthday.  I played in my mind many scenarios last year.  Will I be pregnant in a year?  Will we already have a baby by then?  What will the next year bring?  Will my 40th be a happy occasion, celebrating with a new baby or one growing inside me?  Or will it be the same as last year, only a little grimmer, a little less hopeful, a little more fear-filled?

I am usually pretty good at being hopeful.  But today, I allow this fear to set in.  In a year, will I be still in the same situation?  At a crossroad?  No baby?  No pregnancy?  No clue what to do?

I know it’s hard to predict what is going to happen around the corner.  But when we first embarked on this journey, I really didn’t anticipate myself in this situation: 40 years old.  No baby.  No pregnancy.  I never thought that I will still be childless at this point.

I have been holding back tears all afternoon long.  I had kids I had to work with.  I had coworkers around me and I couldn’t show this weakness on my face.  Deep down I feel like hiding under the cover and having a good cry.  But I had to put on a happy front for my clients.

This huge sense of unfairness came upon me today.  Why in the world do some of us have to make such difficult decisions all the time?  Why can’t we have a break?  Why do we have to wait so long and have to do so much just to have a baby?  Why do some people have it so easily?

Of course there will not be an answer to any of my questions.  They are rhetorical.  But I have to ask them anyways.

In order to make myself feel better, I made a detour on my way home and got this:

hot chocolate

 

It is making me feel a little better.  We’ll see how I do on my actual birthday.  I may just break down and cry like a baby.  Stay tuned.

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22 thoughts on “Tearful

  1. Thinking and praying for you to have wisdom to know which direction to take. I am glad you made this post because if anything, this is all information for me to pray for and against. I am praying for complete healing of your entire body and that SOON you will be expecting. God is BIGGER than any problem you are facing and He can fix all of this for you in a moment. I keep hearing the verse exodus 14;14 in my head….”The Lord will fight for you, be still” Some translations change the word “still” for “calm” which is another word for patience. I am believing awesome things for you girl! The Lord will fight for you 😉 He IS fighting for you! xo

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  2. What an incredible amount of information to take in. It’s so hard to know who to trust in all of that. I hope that the right path will reveal itself to you soon. Looks like we’re (almost) birthday twins. Mine is the 11th. Happy Early Birthday!

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  3. I’m sorry today is so hard on you. More opinions don’t make things easier…
    There’s some research suggesting that removing stage I and II endometriosis helps with treatment success rates, though not for more advanced cases. My RE, who seems to know all the relevant research by heart (she’s an MD/PhD), suggested to skip surgery (I have/had stage IV endo). Maybe get one of your other experts to weigh in on this?

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  4. My initial response is a bit skeptical. I always feel a little leary of anyone who seems to implicates the same process, particularly his association of endometriosis and a high FSH. I would also be curious to know his indication for doing the immune testing, especially as there is a lot of controversy regarding the validity of these methods. The fact that he didn’t review your history and wrapped up the conversation in 10 minutes wouldn’t sit too well with me.

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  5. Oh Isabelle, this is a hard day. I’m so sorry. I kind of agree with Jane, when I first read your description of the conversation, I was a bit skeptical of his assertions and annoyed that he didn’t read your history (although that seems all too common these days). He just didn’t sound like he was the right fit for you. I think with this infertility process, it’s a balance between time, money, and heartbreak. How much do you have and how much can you tolerate. It’s a tough, tough balancing act. I’m sorry that this isn’t easier for you.

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  6. I’m with Jane too. This guy sounds like he thinks he can neatly wrap all of your problems up in one little “endo” box which he then thinks he can fix. Also, in all my research I don’t recall ever reading anything equating endo with high FSH; I know endo can affect implantation but everything I saw said DOR is either hereditary or autoimmune. I’m not saying he’s wrong (maybe there’s new research?) but maybe you could ask for some academic support for this position that you could read yourself before subjecting your body to surgery for minor endo? I would just be put off by him not being prepared for the phone call and as a result skeptical of his conclusions. Sorry you are having such a crap time figuring this out. It isn’t fair that we have to go through this when others have it so easy.

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  7. Indulge in a good cry. It isn’t fun but I always feel better afterwards. I think it helps to get those feelings out whereas if you try to bottle them up, they fester and grow.

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  8. Oh girl! Sometimes we all need a good cry. None of us know what is around the corner. We are all in this together. Hugs for you. I wish I could be with you in person, but in the mean time I’ll pray for comfort!

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  9. It’s incredibly unfair that you have to try to process all this conflicting information and make a decision. For what it’s worth, I’m another vote to avoid endo surgery, if you think you’re headed toward IVF. I had mine removed, but that was only because he was already in there for diagnostic purposes. I was hopeful that I would get pregnant without IVF soon after that, but I didn’t. I also didn’t get pregnant with Femara/timed intercourse or Femara/IUI. It’s impossible to say for sure, but I’m convinced that my problem was damaged eggs due to the endo. Even though most of it was removed, it’s impossible to get it all, and it doesn’t take much to make a toxic environment. Plus, it just starts accumulating again right after surgery. IVF bypasses endo completely. Indeed, our first IVF cycle was successful. I know it’s a lot of information, but give it time to sink in. Eventually, whatever route is right for you will start to become clear.

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  10. This is all so tough… but you’re doing such a great job compiling all this information and staying on top of things. I know how hard it feels right now but I’m praying that the path reveals itself to you very, very soon. Big hugs.

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  11. It is hard to look at where you are and not be where you expected after giving it your all and doing every single thing you can! It is so unfair and I’m so so sorry! I pray that you will be guided and directed to know what path to take and hope your baby is here before your 41st birthday!! Sending you a big huge hug and wishing you a happy birthday! You are AMAZING and you should celebrate that!!!

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  12. I’m sorry you have to make all these tough decisions.
    I sort of agree with the others who are skeptical of the doctor who wants you to have surgery for the endo. I have stage 2 endo (or it was a year & a half ago), and my RE said he didn’t recommend surgery for it or Lupron. Basically he felt the research didn’t support it and it was better to “move things along.” My FSH was normal for my age, but since I had two early miscarriages I can’t say I don’t suspect the endo played a role.
    I’m not sure what the best answer is for you, but always go with your gut. I hope you enjoy your birthday!!!

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  13. Makes my head spin—I can’t even imagine what it’s doing to your poor heart. Sending my support. It’s insane the details we have to wade through to get to baby. But you’ll get there. You have that tenacity.

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  14. I have endo too which I had lasered a few years before our IVFs. Neither of my REs thought it was a big cause for concern as far as getting pregnant but they did think that I should have it removed again after doing 2 IVFs if I didn’t get pregnant just so it wouldn’t build up too much or something like that. I would definitely get the immune panel though! Just my 2 cents.

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  15. Wow, that’s an awful lot they threw at you during the telephone consult. It sounds like they are suggesting a lot of (expensive) tests that weren’t necessarily recommended for you in the past, correct? It’s so hard when we are forced to balance our health with our financial resources. Seriously unfair if you ask me, but no one asked me!

    Out of curiosity, and this is going to sound really forward and perhaps rude, but… Do any of the physicians you’ve seen provide care based on salary, rather than a fee per procedure? I ask because I work in finance at a state hospital, our physicians are salary based, although with my husband being a provider and he knowing lots of fee per procedure doctors, well, just seems as if those who are fee based are so much more willing to suggest unnecessary tests. I’m not saying yours are, just thinking… I feel like those who are salary are far more willing to determine which portions of care are truly needed and best each patient.

    I wish you the best of luck in your decisions going forward. None of this is easy and I wouldn’t wish these challenges on my worst enemy.

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    • So I have only done my cycles with one doctor. And she charges things by a package. So regardless of how many monitoring appointments or blood draws I may have, I still pay the same amount of money. These other doctors that I have been consulting with, I suspect that the UCSF doctors are paid by salary. The doctor who did my 10 minute consult charges $3000 consultation…. so of course he’d like me to go see him and do the immune testing panel… so I’ll pay him that much. You’re not at all rude though. Thank you for your well wishes and I wish the same for you too!

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