Five days ago my heart shattered into a million pieces.
It’s amazing how quickly you can go from being so hopeful to beyond devastated.
I wish I could say over the past few days I have been feeling the slightest bit better.
I don’t.
I feel worse.
Much, much worse.
Leaving well enough alone is not my strong point.
Remember, I am a Type A planner that has to know.
In my desperation to figure out what went wrong, I started researching.
The first stop was reviewing lab values.
Not a good idea.
Turns out there are a few little red flags.
Red flags Dr. RE should have caught and discussed with me.
Red flags that should have put me on a completely different protocol.
Red flags I should have caught myself if I hadn’t been so naïve then.
My FSH is 11. Diminished. Ovarian. Reserve.
…….just……..breathe…….
Our clinic is rather small. We go there because it's the only one within a reasonable radius and our insurance will cover us there.
Without insurance we wouldn’t even be able to pursue infertility treatments.
Unfortunately, their track record for diminished ovarian reserve is beyond horrible (as in 0 for the five years of statistics I could find). And they’re not much better with endometriosis patients (success rates in the 20% range).
If there is any hope at all of us conceiving a child with both of our genetic material, we need a highly personalized protocol. One I don’t think our current clinic is going to be able to provide.
During my research I have also found it may be a good idea for endometriosis patients with failed IVF cycles to have immune testing done. I’m thinking with everything else I’m working against right now, I should look into this. But again, I’m not sure this is something my clinic would be able to provide.
I am waiting for my next menstrual cycle to kick in and when it does, I’m supposed to go in and have a meeting with Dr. RE. I will bring copies of what I have found and hope and pray he will work with me.
If the next cycle doesn’t work I’m afraid we’re done. Our insurance will be close to maxed out and it would be up to five years before we could afford an IVF cycle at a better clinic.
With my FSH we don’t have time to waste.
It’s now or never.
…….just……..breathe……..
9 comments:
I am sending big love. FSH is only - I know - 'only' - one step above 10 - and I have known FSH results to fluctuate - maybe do some research on 'how to bring FSH levels down'? - I am sure I have read about people doing this with herbs/chinese medicine. Certainly if this is an issue you can ask about doing a shorter protocol with no down-regging - the idea is that sometimes, if the ovaries are tired, the down-regging is too severe for them to kick-back into gear again under stims. Under a short protocol you go straight into stims - is much shorter, and would be cheaper except normally you need more meds...swings and round abouts. Has your AMH been checked - and antral follicle count? Most docs see these as a more reliable indication of ovarian reserve and would certainly be worth doing. Sending love - and keep breathing - the fat lady aint sung yet xxxxxxxxxx
*HUGS*
I would second having you AMH tested. It is far more reliable than FSH and doesn't fluctuate throughout the month so you can test it at any time. Don't give up hope.
By the way, thank you for the info on the Circle and Bloom meditations. I downloaded them myself and have been using them and find it really helps with my pre-IVF jitters.
I'll 3rd the AMH testing.
Going off of what I've read, the microdose lupron flare protocol seems to be a miracle-worker for DOR patients.
I really hope things work out for you!!
As for immune testing -
They're probably going to say no unless you've had recurrent miscarriages. Especially where you have not yet failed an IVF cycle (cancellation isn't failure, and I think you have to fail 2-3 fresh transfers). Why? Because it's expensive. And it's not entirely proven, and there's not terribly much to do. Baby aspirin can help. More folic acid. Sometimes they can do corticosteroids, but that has a flip side of other problems. And IVIG is prohibitively expensive and experimental at best so you'd be paying out of pocket for it.
It can't hurt to ask, it can't hurt to do the tests if they agree - but they never would for me, and my endo is the "holy CRAP" variety. (Though, they've also said my endo is clearly so bad my immune system gave up a long time ago. Ha ha ha?)
Everyone's rates for endo patients are awful, sadly. Even the best clinics. But it can happen.
Do your homework, know your other protocol options, don't move forward if you're not comfortable with their plan. (My AMH is sucksville and my antral count was 3, and I jumped right into stims and added ganirelix, no lupron at all - and got a lot of eggs. Also, generic hcg is better than Ovidrel for diminished reserve.)
Good luck!
thinking of you. All Ill say. You will get better
I'm so sorry about all of it - the DOR, the canceled cycle... oh sweetie. Sending positive thoughts your way.
These ups and downs.... are never fun. Try to take comfort in the fact that you are not alone. I know you can feel so empty and lost, please have faith! It's what gets me by too! <3 Prayers and hope.
So sorry to hear about all this - You definitely have to advocate for yourself pretty strongly and see what they will do for you. It sounds like you have some difficult decisions to make about your clinic and whether to continue treatment there.
Oh man.
Sounds like you'll be prepared for your Doctor's appointment. Demand answers - and a plan.
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