Starting over with guarded hope

Our second opinion visit was a week ago.  For now I'll try to move on from the frustration of not having seen him first and explain where we are now.  The short version is after reviewing my history and chart and imaging, our new physician said he thinks we actually haven't had much done.   Obviously there are no guarantees, but his opinion is that we have a few options/procedures left yet.  We might get into the normal sections, open the blockages, reconstitute a "normal" cavity, and still not be able to be pregnant.  The reality is live birth rates for Asherman's patients after treatment for severe cases are still only 30-40%,  but the potential medical complications do need to be addressed as well. We spent a lot of time with him going over all aspects of my case.  We went over all the questions I should have asked the first time around - and I didn't have to ask most of them because he volunteered the information.  He's done over 250 cases like mine (as opposed to the handfull our previous doc has seen).  The other recognized experts are on either coast, so they've basically trisected the country in terms of getting referals.  He was frustrated along with us that he was just down the road and didn't get a shot at us earlier & that he even had talked with our last doc between my first referral there and the last procedure!  He's had a lot of successes, but also had to tell patients he couldn't do anymore - and assures us he'll tell us when/if we get there.  So where does that put us now?  Basically with guarded hope.  At least now if we end up in the same position we can know we tried everything with the best options available.  After the heartache of the last events I'm not letting myself be overly optimistic - I can't face that let down again.  But I will welcome any miracle that might come our way so it is worth trying.  I'm so fortunate he is right here in town - we can actually schedule all this with ideal timing and not be constrained by airline travel or needing multiple days off work, or expense issues, or any of the other limitations so many of his other patients are under.   I will be going through another operative procedure in attempt to breakdown the scarring (but now in expert hands) and another round of crazy hormones, then a number of office procedures to try and keep the scarring from returning.  The difference is really in the details - the instruments, timing, doses, follow up procedures - that are all developed specifically from experience in treating other Asherman's cases.  One of my good friends said in her own difficult time that it actually made it a little easier to realize and accept not being able to control everything.  I'm working on that, and I think I'm making progress there.  So we're keeping our fingers crossed - but not holding our breath. We should know a lot more in the next couple of weeks, and will have some big decisions to make then.

Would it have been different?

Fortunately so far insurance is cooperating, which really is a result of our own efforts.  And its a small consolation since I should have been seeing this "2nd opinion" physician from the beginning.  It is so frustrating that business gets in the way.  Turns out our last physician hasn't really seen much of this condition, and therefore hasn't done many of these procedures...and by not many I mean I may have been the first one he did with ultrasound guidance.  I try not to be angry, because it doesn't do any good.  But I am angry.  I'm angry because you trust your physician to do what is best for you, and that should include the referrals that are best.  I realize that isn't how all referrals work, and if there are multiple experts available then fine - but come on - in Asherman's there just aren't that many experts around.  In fact the vast majority of people with Asherman's don't have any chance to see a real expert, or if they do it requires traveling not just across the state, but sometimes across the country.   Lucky for me one of the national top 3 experts is just across town.  Except we only have our own research to thank for that discovery since we were referred on it was to someone a couple hours away.  Since we didn't know Asherman's was going to be the diagnosis when it all started I had no reason to question seeing our in-network physician in the beginning - or what he was doing for that matter.  And the general concept of what he did seemed appropriate according to our research once we did know what we were dealing with.  However (and I fault myself for this) I never pressed him on his experience with Asherman's.  How many has he seen?  What severity has he dealt with? What procedures has he done?  How many?  What were his personal outcomes?  What was his comfort level with proceeding?  What made him change his approach slightly from consult visit #1 to the last procedure?  I don't know why I didn't ask any of it.  I don't know if I even thought of asking it then.  I don't know that it would have changed what we did anyway, especially since at the time this was the only option that insurance would cover.  And really at this point it doesn't matter, but I can't help wondering.  If my insurance provider didn't have to change we'd have seen this physician from the beginning; would we have been spared the heartache of an infertility diagnosis?  Of failed management?  Would we be still waiting on that news - and would it be the same?  Will it be the same anyway?  Fortunately in this process we at least haven't gone backwards or made things worse as far as we know, which has happened to many others across the country.  The important thing I keep reminding myself is that at least we are in expert hands now.

A second opinion

Right now we are anxiously awaiting the next steps.  We'll be having a second (and final) opinion on if anything else can be done to fix 'my broken uterus.'  There are two issues at stake here really - 1) potential medical complications down the line, and 2) our infertility.  We are going into this second opinion expecting confirmation of what we've already learned, I have to.  I'm not looking forward to it,  but I need this confirmation to feel confident we can move on to whatever is next.  I can then stop thinking about that little normal pocket I supposedly have.  I can refocus on exploring other options.  Knowing this next appointment is with an expert in Asherman's specifically is reassurring - I'd have no more reasons to second guess if there is anything else to try.  But what if he tells us there is?  I admit I find myself with unsettled feelings about that.  Why unsettled?  I haven't given the purely medical issues much thought, there is plenty of time to figure that out. But even if things can be "normalized" it doesn't mean my pregnancy outlook is much better. Because then the waiting and the hoping and the heartache start all over again.  An entire new subset of questions comes up.  Even if there is another procedure in my future, the little data out there on pregnancy after Asherman's is mainly for those with mild-moderate disease.  Once over 35, or having severe disease, actual live birth rates are still minimal; we're looking at both.  How much hope do we open ourselves back up to?  And with that question is where I have to stop - it is all what if again - until the second opinion.

The Insurance Game

So glad I don't have to deal with insurance companies on a regular basis!  I do as a provider often enough, and it's never straightforward.  Now I'm getting cozy with the details of being a patient in this maze of paperwork and phone calls.  It gives me a whole new perspective for my patients as well.  I already have some working understanding of it all, and its still a mess.  Some of that makes it more frustrating, having to explain to a medical reviewer why my preauthorization request should be granted.

The "second opinion" we've been referred to is out-of-network; basically we've already seen our in-network expert so anyone else will be out of network.  Talk about frustration, try the politics of referrals; I'm sure most people assume referrals are onto the next best expert.  I hate to break this news, but it is not that simple.  Need we forget healthcare is a business, and insurance is a bigger business?  Even within a group of specialists, not everyone has equal expertise further subspecialties.  It gets complicated.  But after doing a lot of research we've actually discovered one of the few IUA experts happens to be nearby.  In fact he is who my first OB/GYN wanted me to see but I couldn't then b/c of insurance; granted we didn't know at that time what the diagnosis would be, or how severe.  Ironic, sad, frustrating.  So in the meantime, we play the waiting game some more, this time with the Insurance company. 

Some things are not helpful

How do I say this - I know everyone means well. I've potentially even been the offender here to some friends and sooo wish I could take it back. But there are some things that are just not helpful. It is part of why we kept this private when we did. I KNOW things in life could be worse. I KNOW our daughter is a blessing. I KNOW we are lucky to have been pregnant once. I KNOW all these things. It doesn't change how I FEEL. Sorrow for the pregnancies we'll never know does not take away from the love and joy we get from the one we did. And in the mess of emotions, I don't need to feel guilty about our grief. I don't particularly want advice, or a pep talk, or for my friends/family to "fix it" - you can't. Real support is sometimes just a hug, a smile, a prayer.

There are a few compilations of advice for family/friends of those experiencing infertility issues out there. I've put together some suggestions, and they are on the Suggestions page on this blog.  They are summarized from our own feelings and experiences, other blog sites & support groups, and the National Infertility Association. Some apply to us personally and some don't, but I feel it is better to put it out there for everyone to think about. You never know if someone close is dealing with this, and they'll let you in when they are ready. Hopefully this can help when that happens.

Sorting through the emotions

I cannot get pregnant again.  It hurts beyond words, my heart aches.  When this evaluation started I knew that it happens to some people.  I had a range of feelings about the situation, including frustration and a lot of impatience.  It felt like I was surrounded by babies and pregnancies.  It was hard to have one thing after another not come out right.  To have time keep going by, endure more referrals and tests and procedures.   Sure, I was prepared for things to not be straight forward.  After knowing for a decade already that I had PCOS, on some level I expected "problems."  However I didn't really think this would be the conclusion for us.  Sure I could need medication & procedures, but that I'd never be pregnant again?  Once we heard this, I spent days a sobbing mess and being a very angry, tired, depressed person.  Initially all I could do was cry and sleep; then I couldn't turn my thoughts off long enough to get any rest.  I played the "what if" game constantly - what if I asked more questions post-partum?  What if I opted for meds instead of the D&C?  What if I didn't pump so much to stock our freezer?  What if I weaned earlier?  Is there someone to blame? Is that person me?  Why did this happen to us, am I not a good mom?  But we are good parents.  We've planned for more children.  They are supposed to be running all over, filling the house and the yard and emptying our bank accounts and refrigerator. On a rational level I know this thinking is not helpful, but that doesn't stop it.  Then throw in the guilt - as I realize how lucky we are to have our little girl, how our complications could have been much more severe.  I felt guilty because we do have her, maybe I'm just being greedy.  I feel guilty that I'm mourning future pregnancies when some couples don't have a first.  But still I find it hard to be around babies and pregnant women; it feels like they are suddenly everywhere.  I try not to cry at their showers, or when seeing their newborns or pictures.  Then I feel guilty again, like a terrible person, because our sorrow should take nothing from those joys.  And I really understand the blessing each of those little one's is for their families, just as ours is and I'm joyful.  Until I see pictures of my own pregnancy and newborn , and it hurts again.  A few people have asked how we are doing; I can only say it depends on the moment for now.

No words to explain

Why a blog? I've been thinking about starting a blog for years.  Thought in planning our wedding would be a good time, but I never did.  Our pregnancy and birth of our daughter would be a good time, but again, I didn't get around to it.  So why now?  Ironically, no words can explain it.  We are in the midst of a "never thought it would happen to us" kind of event.  We have what the experts call secondary infertility; for us it is a result of Asherman's Syndrome.  For now this blog is starting as a way to share these difficlut events, to explain what is going on without having to explain it.  My hope and intent is that this blog will evolve into more than a recounting of our struggles.  It will evolve as our family does, we just aren't sure yet how that will be.