Kicking DOR Out The D-O-O-R

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The results are in from my most recent AMH test, and they’re certainly not what I or my doctor was expecting.

If you didn’t catch my last post, I’d had an AMH blood test drawn the other week during a visit with Dr. C. This test was to follow up from my June 2015 test. At that time my AMH score was 0.62, which is pretty low. My clinic doesn’t like to see results less than 1.2 for women my age.

If you’re not familiar with AMH, it’s basically just a blood test that doctors use to measure a hormone called anti-Mullerian hormone (AMH) in a woman’s body. The test is still somewhat new-ish. The results give your doctor an idea of how many eggs are left in your ovaries. As with most things in life, more eggs are better than less eggs. Low results are also called/diagnosed as diminished ovarian reserve, or DOR. (I’m really trying to be better with the whole acronym overuse thing. I realize that not everyone speaks the language of the fertility-challenged).

I found an online chart here that was pretty helpful in explaining results:

Interpretation

AMH Blood Level

High (often PCOS) Over  3.0 ng/ml
Normal Over  1.0 ng/ml
Low Normal Range 0.7 – 0.9 ng/ml
Low 0.3 – 0.6 ng/ml
Very Low Less than 0.3 ng/ml

My gloom-and-doom consult with Dr. C the other week didn’t really add a whole lot of hope for the results I was awaiting, especially his prediction that my AMH would be even lower than last year’s.

So when this year’s reading came back at 1.39 we were all pretty stunned! My number had more than doubled since last year! To the normal range. Normal! The nurse who gave me my results over the whole was noticeably surprised when she compared my new results to last year’s. When I asked her if they saw this kind of thing a lot, she was like, “Umm, weeeeell, not often. But every once in awhile we’ll see this happen.”

How has it doubled? I don’t know. Some studies suggest that low vitamin D levels contribute to lower AMH results. Supplementing with DHEA and CoQ10 is also thought to help improve results. All these vitamins I’ve been taking this year must be making a difference.

And, prayer. We’ve been regularly praying over my ovary, and I believe that our (and others’) prayers have made this tremendous difference. Thank you, Lord. I mean, c’mon, vitamins can only do so much.

I don’t understand all the science behind these tests, or even what exactly our new normal means for us going forward. I just know that it is a tremendous feeling to, for once, celebrate by sharing some good fertility news.

Here’s to ever upward in this baby-making quest.

 

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The Meeting (and the due date)

About six weeks ago, Dr. C left me a voicemail: “I’m really disappointed to hear about how things went this cycle. Let’s chat,” he said. I’m pretty sure this was code for the fertility blogger’s infamous “WTH meeting” I read about from time to time (and that’s “What-The-Heck” in case you’re wondering. No swearing here!). I never wanted to go to one of those. So I did what I do best and put it off.

After several weeks of dragging my feet, I finally I got around to calling the clinic back. Even then I took my sweet time, scheduling the meeting out weeks in advance. I wasn’t alone in not wanting to go: Jake sure didn’t, either. He saw no point in meeting with Dr. C, and I understood his feelings. I had this mental image of us walking the walk of shame down the hallway to Dr. C’s office, passing by all the staff who would give us pitying looks because they knew why we were there.

Of course, it went nothing at all like that. Jake eventually warmed up too, and in the end he told me the meeting was actually worth having.

Even though we covered a lot of ground during our 30 minutes, it also felt like we didn’t really get anywhere. I asked Dr. C every single question I’d had during the past nine months. He graciously took the time to answer each and every one. Toward the end of the meeting Dr. C said that, even though I’d given him quite a workout, he appreciated patients like me who come in armed and ready. He also half-jokingly offered me a job in his practice.

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Stock photos lie. This is not how a WTH meeting looks.

Since you guys know how much I love lists, here’s the highlights:

AMH/DOR/Egg Quantity: My AMH was 0.62 a year ago. I had another AMH panel drawn during my WTH visit. The results will take several days to come in.  Last year, Dr. C conservatively figured that my low AMH could’ve been due to my having one ovary. This year he changed his opinion and said that my score wouldn’t have made a difference, because whether I had one, two, or three ovaries (who has 3 ovaries????), DOR is DOR is DOR.

Egg Quality: Besides my low egg reserve, there’s also a quality issue of my remaining eggs. I again declined Dr. C’s suggestion of using donor eggs. It’s important to me to be biologically related to our child, and using donor gametes goes against my beliefs. After the meeting, this whole egg quality thing had me feeling pretty bad about myself: Did my “bad eggs” make me directly responsible for all our losses? I’m only 34. Aren’t donor eggs something for older women? Why is this even something a doctor is talking to me about?

Pelvic Adhesive Disease: Dr. C kept throwing this term into my diagnoses until finally I had to ask what exactly pelvic adhesive disease is. Here’s the lowdown: Endo adheres your insides together. After surgery to remove the endo adhesions, new scar tissue forms from removal of the endo adhesions themselves. This new scar tissue adheres your insides together yet again, resulting in PAD. It’s like an ever-spinning wheel of adhesive insanity! Of course Dr. C couldn’t prove it diagnostically at our meeting, but the fact that my ovary hurts, oh I don’t know, ALL THE FREAKING TIME makes him think PAD is a culprit, along with recurring endo. Hooray.

Laparoscopy: It makes sense to me—and I said so, too, bluntly—that all this IVF/ART business is like putting a band-aid on a gunshot wound. As long we ignore the endometriosis factor then we’re not really treating my fertility issues, we’re just trying sneaky backdoor methods to get me knocked up. Since IVF is tabled for now (donations welcome!), Dr. C gave me a referral to a local gyn surgeon he highly recommended. This would be my fifth surgery and third laparoscopy. It might seem counterintuitive to have surgery because of the whole PAD thing, but surgery is the option I’m most in favor of. Jake and I have a lot of discussing to do before I make the final decision, since there’s a few things going on in our personal lives with work, school, moving, etc. that might make having a lap a bit tricky right now. We will see. And, of course, I’ll let you guys know!

IUI: I’d always been told that IUI for endo patients is a total waste of time and money. However, Dr. C feels that that’s not necessarily true if the IUI is done soon after a lap. In that case, the endo is gone so it’s no longer a factor. Until we’re able to do another IVF, Dr. C suggested Clomid IUIs with injectables following the lap. It seems like we’d be going backward to move from IUI to IVF back to IUI.  I’m 50/50 about this option, but leaning more toward “no.”

Implantation Issues: This one’s a biggie. Since no one can see implantation happening (or not happening), it remains this mysterious, elusive, intangible thing for doctors. I  walked away from the meeting feeling like I didn’t get a lot of answers about possible implantation issues, as Dr. C couldn’t offer any real solutions. After three losses, Dr. C feels that implantation is definitely a factor to investigate… somehow. But there’s not much to be done diagnostically that I haven’t already done. Basically, the implantation issue went nowhere and I’m not thrilled about that. To be revisited.

MTHFR: Along those lines, we reviewed my RPL panel and Dr. C espoused how unremarkable it was. Here’s where I could use some serious input from you guys: When I asked Dr. C why he didn’t include testing for MTHFR on the panel, his response was (literally), “It doesn’t really make a difference.” This didn’t sit well with me. That can’t be true, right?! Anyone? I mean, there’s entire websites dedicated to MTHFR. I really, really wish that REs took RI more seriously. It’s to their patients’ detriment that they don’t.

Scratching the Itch: Last year I had asked for an endometrial scratch prior to starting IVF. Science is iffy about whether ES helps prime the uterus for an embryo, but it certainly doesn’t hurt (scratch that, it does hurt, physically, a lot. Pun intended) to have the procedure done anyway. He wasn’t opposed to it last year, but Dr. C eventually talked me out of having it done. During our meeting, though, he recommended I have an ES done prior to doing IVF again… You can’t even begin to know the depths of my frustration when I reminded him that I’d asked for an ES last year and we didn’t do one!

The Miscarriages/RPL:  All Dr. C could tell us was that m/c #2 was likely due to an abnormal embryo, and that m/c #3 could have been another abnormal embryo or an implantation issue alone or both. We did ICSI last time around, but not PGS. Dr. C recommends PGS for any future IVFs. I have reservations about the reliability of PGS and I don’t believe it doesn’t harm embryos (science says so, too!), plus I have moral issues about destroying embryos that don’t pass the PGS test. This is one thing I’m really firm on. Since I never had any miscarried embryos to biopsy, there’s no telling. Again, a more thorough RPL panel might have helped here… Maybe one that included MTHFR.

Okay, wow, now that I’ve written it all out it seems pretty clear to me that we need to get a second opinion (or a fourth, really). Dr. C is the third reproductive endocrinologist that I’ve treated with, but I’m not so dedicated to the practice that I won’t get another opinion. REs don’t know how a patient will respond to IVF the first time, and it can take a few cycles to get the right protocol down; I totally get that. I guess the whole purpose of a WTH meeting is to go over things, try to come up with what went wrong, and make plans to change what needs to be changed the next time around.

With that said, I’ve looked into RI treatment with Dr. Braverman. I even went so far as to start dialing his number for the free consultation. I mean, logistically it’s somewhat doable: Braverman’s office is only 2 hours away. Boss would even work with me for all the time I’d need to miss from work. There’s a semi-local clinic where I could be seen for non-NY appointments. But, it’s all so stupidly expensive and my insurance covers none of it. Another door closes.

With no real solutions, I feel I’ve basically said nothing this entire post up ’til now… except for a whole lot of “maybe’s” and “I don’t know.” Which is pretty much how I feel about things too: maybe this, maybe that, and I just don’t know.


 

Finally, it wouldn’t be right for me to end this post without making mention of my due date… well, one of them anyway. I’ve added the due date to all the other tough moments of being in the fertility trenches. I like to think of them as a collection of battle scars. As scars become layered on top of each other, they form a thick skin. And a thick skins helps us toughen up and soldier on, even when our insides are all soft and battle-weary.

June 9, 2016 would’ve should’ve been my due date for pregnancy #2. Instead of a baby on June 9, I got my period. Seriously. Jake sent me a beautiful bouquet of flowers at work that day to let me know he didn’t forget either, which meant so much to my heart. I think about it every single day and I will always hold a special place in my heart for the little person who should be here with us now, but is in Heaven instead. I love you, S.W., and You Are Missed.

In S.W.’s memory, this charm hangs from my rearview mirror, for when I look back while still moving forward.

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  Peace.