Calling Time Of Death

May 18, 2013

We’re calling time of death on my uterus.

Well… I suppose it won’t truly be dead until it comes out. So let’s call it… unrecoverable coma.

I’ve known (or at least suspected) that the H word – hysterectomy – was going to come up sooner or later. And it has. I thought I was prepared for that. Guess not.

It hasn’t been decided yet. NewRE2 wants me to go to a regular GYN (he’s breaking up with me!) to get an opinion on whether to try and manage my pain, endometriosis and adenomyosis (mostly the latter) with medication or surgery. He’s not in the business of taking out uteruses (uteri? Will I ever know what the correct plural form is?) so he prefers to leave that decision to someone who actually does it for a living. But given the state it’s in and all my weird history I’m pretty sure it’s coming out. Maybe not right away. But eventually.

Here’s what has happened recently.

After my recent saline infused sonogram showed the same weirdness as last summer’s HSG (drawing no longer accurate) – even after lots of lupron – NewRE2 decided to go sleuthing. I had the old clinic send all my MRIs from the first ectopic. From the time of diagnosis to almost a year after IVF I had FOUR MRIs and while NewRE2 had seen the reports, he’d never seen the images. It seems he may have also been missing some other medical records but I’ll get to that later.

So when the disc with the 4 MRIs arrived, he grabbed two radiologists (and possibly some popcorn) and had a two hour party looking at all my imaging, and super-imposing images on top of one another, on a big screen while sitting in comfy recliners.

Nope, not kidding. Apparently radiologists have their own mini theaters. Who knew?

His opinion is that my uterus has been FUBARed from the start. Or at least since the IVF. Unbeknownst to me, he had had a notion of trying to repair that weird spot surgically. But it seems that spot is just one of many. It’s claim to fame is being the largest so it shows up on nonMri imaging. He fumbled a lot trying to explain it. But ultimately he chose this analogy:

The most politically correct way I can describe your uterus is… well, it kind of looks like… swiss cheese.

SwissCheese

The point is this – there are a ton of tiny holes in my uterus. Right Guy prefers the analogy of a sponge (but with a rip in one section of it). Most of the holes lead into the muscle wall and when AF shows up I bleed into the muscle and the blood gets trapped (eventually reabsorbed) and causes pain. But then there’s that bigger hole. The theory there is that it probably (can’t be sure) goes all the way through the uterine wall and leads to the pelvic cavity. So I probably bleed there too. And that’s probably why the endometriosis is back.

I have suspected this retrograde menstruation for awhile since my periods are super light. If you google “adenomyosis” everything you see will describes very heavy periods. I buy the lite tampons they market to teenagers and a box of them (if you can even find them sold on their own) will last me months. And I don’t buy pads – I buy liners for when the light tampons are too much. [My apologies for the TMI about my shopping habits]

So. Mystery explained. It would seem that ALL of this is caused by adenomyosis. Even the endometriosis is likely caused by the adenomyosis. This was actually OldRE’s theory (well not the endo part, I didn’t have it last time I saw her). But last summer she thought a FET was still somewhat reasonable.

Lots of people ask me about getting a second opinion. First off, with regards to treatment and hysterectomy, I will get one when I go see a regular GYN. Secondly… since my first ectopic was discovered, no RE has EVER advised me on future pregnancies without consulting with other REs and other specialists. They meet in groups to discuss my case. They’ve sent me to an MFM who told me I’d need a c-section at 36 wks (or as soon as the baby’s lungs were developed enough) if I managed to carry a viable pregnancy. And now I’m being bounced down to a regular GYN. There have been multiple specialists, from multiple specialties, involved in my care at virtually every step along the way. On two coasts.

Also? I’ve seen my images. My uterus is a scary place. I’m confident this diagnosis is correct.

If I went back to OldRE, or to another one, would she agree to do a FET? Maybe. I can’t see that much has changed since I saw her last and she was willing then. But she also acknowledged all the risks. No one disputes the risks. NewRE2 had apparently NOT seen ALL my previous medical records until recently. After reading the full account of the first ectopic he said I was lucky to be alive and that he would have just taken out the uterus. Clearly he’s more conservative than OldRE. So it’s entirely possible that she’d still be willing to do a FET with me. It’s also possible she wouldn’t. I remember how nervous I made her during that recovery and I’m sure she second guessed the decision to leave the uterus in more than once.

I don’t think either opinion is wrong or that one or the other is a better/worse doctor. NewRE2 also reiterated that he’d NEVER SEEN ANYTHING LIKE THIS. So… of course doctors are going to vary in their opinions about something neither have experience with. My uterus is uncharted territory.

Short of calling in a miniature Lewis & Clark team, I don’t think there’s any more to be done here.

Historical-Lewis-and-Clark-Expedition-Historical-Map

So, yeah, MAYBE another RE would do a FET.

But if you had a hole in your uterus… would YOU put an embryo in it?

I won’t. Even if I could find an RE willing to do it, it is folly at this point.

In related news… I finally bought a lottery ticket.

For anyone who might be new to this blog and/or the story of my first ectopic you can start reading here:
The Beginning. Or pretty much any post from September 2010 through February 2011 will be about ectopic #1.

4 Responses to “Calling Time Of Death”

  1. Missy Says:

    I don’t know if you are that kind of person or not but (hugs!!).

  2. stupidstork Says:

    Oh dear, I’m sorry.. That’s a lot to deal with.

    Whatever you decide to do is going to be.. I was gonna say awesome but I suppose that’s the wrong word… The right thing to do.

  3. Dipitie Says:

    I’m so sorry. What crap news, although failed IVF/FET’s are crap news in themselves. I’m thinking of you as you process all of this


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