Wednesday 26 June 2013

Feelings about diminished ovarian reserve

How do I feel about DOR/POF? (For the post with the facts and back story, see here)

In no particular order -

-I'm not sure how to feel. Somebody tell me what I'm supposed to feel.

-Broken. My ovaries don't work properly. They are supposed to work properly. At least till age 35, or 38, or 40, or 45, or whatever is the trendy number. I'm walking around with broken things in me. I can feel the sharp, poky edges of the broken things. At least I imagine I can. But no one can even tell.

-Stupid. Was I supposed to know that my ovaries would start to shut down? Was I supposed to have done something differently in my life?

-Confused and discouraged. Every time we think we've got infertility figured out, and form a plan for moving forward, we find out something that changes the game.

-Grateful. That  I can find out information. That I have people to  turn to. That there are medical professionals that can possibly help me and Mr. Turtle to have a child. Somehow. Although it seems to get more complicated all the time. I think I've finally stopped imagining natural conception and a baby in my life - even secretly.

-Shocked and surprised. I didn't expect this. Even when I considered it, even when I restrained myself from gloating over my perceived fertility, even when I wondered what the tests might show, I still didn't expect POF.

-Whatever emotion is the opposite of shocked and surprised.  Fatalistic? I look for and find patterns in my thoughts, experiences and imaginings that create a pattern where POF fits. Haven't I wondered about conceiving with donor gametes and concluded I would be OK with it? Haven't I wondered about adoption and decided that I could do it because I'm sure I would be able to bond with an adopted baby, or even older child? After all I know so-and-so who adopted, I read this blog, etc. That must mean I "knew" that we would have to walk this road. From one point of view I know this is silly. I imagined a natural conception and babies and family far more often than I tried to imagine anything different, at least until recently.

But still I find myself thinking on my life experiences and trying to pull messages from them, some of which are heartening and some of which are not. For example, I broke my foot two and half weeks before our wedding. Everything went ahead as scheduled though; I think the only thing we modified was I had some help to climb the steps.  I got married and went on a honeymoon with cast and crutches.  People would say how sorry they were for me, but I didn't and don't want anyone feeling sorry for me because I wasn't sorry for myself.  The truth is I had an amazing day and amazing holiday, and I have no regrets whatsoever. Didn't I learn then that the greatest joy and happiness are always within reach, even when things are broken? Perhaps, when things are broken, they are even closer.

-And then my feelings circle back back to one of the other points and repeat over and over.

We keep going forward, because really, where else is there to go?

And we will find a path in all of this. Somehow.

Monday 24 June 2013

Hello Premature Ovarian Failure, welcome to the party

Today we had our 2nd meeting with Dr. Cotter to go over the results of the numerous tests requisitioned in May.  My tests were "the surprise." Aaargh.  Not in a good way.


Mr. Turtle's 2nd semen analysis:
Similar numbers to before, very few sperm with normal morphology or motility after 3 hours

Now on  to me:

No tubal blockages, looks normal. I think that was the main  point.

Ultrasound of uterus and ovaries:
2 Fibroids, one bigger one smaller, but they are not considered significant.
Uterine lining is good
4 follicles on the left ovary (click for more on  antral follicle counts)
No follicles visible on the right ovary


Prolactin: OK

Day 20: Progesterone OK, somewhat low but looks like ovulation happened

1st Day 2 bloodwork:
FSH 3, Estrogen 751

2nd Day 2 bloodwork:
FSH 19, Estrogen 63  (click for more on FSH testing)

Not sure I completely processed Dr. Cotter's explanation of what those numbers mean, but the main point was this: it looks like my ovaries not functioning well. The low number of follicles observed on the ultrasound seems to confirm this hypothesis. Poor ovarian reserve (POR).  Premature ovarian failure (POF). I think I might be more "POR" than "POF"as I do still have a regular cycle, but it is short (average 25 days) and I suspect that I do have some anovulatory cycles.

IVF is still on the table, but the chances go up that I will not respond to stimulation, and therefore not produce enough eggs, or worst case,  not produce any eggs.  It's not hopeless, but it becomes more of a gamble. And more expensive, as I will be taking the higher doses of drugs.  We would do Flare Protocol.

Possibility of IVF with donor eggs was mentioned.

IUI is not recommended due to the sperm issues.

So, our newest homework is to consider whether we want to go ahead with the fresh IVF cycle with our gametes, and what what we will do if it doesn't work, or if we decide that it is not worth the gamble. We intended to make B and C plans in the case of unsuccessful IVF attempt(s) anyway; I will not even start an IVF cycle without a B or C plan.  But since IVF was the most likely path it was  kind of blocking the view of anything else. Now we have to look beyond IVF, and maybe that's a good thing, although the POF is not good news.

If we decide to go ahead with IVF, I will be taking DHEA and co-enzyme Q10 for some months before the cycle starts, to try to give the ovaries  some mojo.

But before any of that, I am having a karotype test to see if I'm a of carrier of Fragile X, which can be a cause of POF.  Should the genetic test come back positive for Fragile X, that would  pretty much preclude IVF and therefore genetically related children, as they would  have to scan the eggs for the gene and I likely wouldn't produce enough to scan.The possibility is low: I think Dr. Cotter said about 1% of POF cases have Fragile X. So it's unlikely, but statistics aren't much of a comfort anymore: it seems like we're on the wrong side of them often as not.

What a maze.

Saturday 15 June 2013

No more tests and bloodwork! (for now)

Today I showed up outside the locked door of Laboratory Services at 6:30am. I was 2nd in line. (First in line was a mom holding a spot for her 3 year old daughter. She arrived at 6am with a lawn chair, waiting an hour until dad showed up with the little girl at 7am when the doors opened.)  I waited half an hour sipping from my water bottle (but pacing it so that I didn't have go pee too bad before the lab opened) and reading The Best American Essays of 2012. (I've recently become a fan of the Best American Essays and I might start ordering back editions.)

When the doors opened, I got my appointment, offered up a vein in my left arm, and gave up some blood for Science. This test has something to do with the result of my first blood test (where I was a newbie and was 27th in line, didn't drink enough water, etc.) which showed high estradiol levels.

Anyway, what is significant about this appointment is that it is the Last of the bloodwork and tests requested by Dr. Cotter last month. My Fertility Binder has no more requisition forms in it! Of course, I know there will be plenty more for one reason or another and I will have many opportunities to utilize my new expertise on laboratories and giving blood and giving it up for Science. But still, in this long process of waiting, wondering, obsessing, and not really having insight into anything at all, I am going to celebrate The Last (for now) blood test as a sort of milestone.

Next week we go the  IVF information evening, and the Monday after that is the follow up appointment with Dr. Cotter to review all the test results. More blog entries will result.

In the meantime, I've done some Spring Cleaning on torthúil:

  • Under "Lifelines": Fertility Reading List is now posted: if you  have suggestions for it, please leave a comment! Also, summary of our TTC journey and diagnoses
  • New template! matches the rain we've been having ;-)

Sunday 9 June 2013

How do you feel about the future?

But before that, how I feel about the present.

The present is mostly OK. As noted in  the previous post, the calendar has been full of fertility-related tests and appointments. Most are done; I have a couple more blood tests to do. I took time off work for several tests and the sky did not fall (For the record: In the past 5 years I took maybe 1 day off work for a medical appointment, and 2.5 sick days. So having several appointments in the space of  a month to work into my schedule took some attitude adjustment.)

On another level, I'm a little disturbed. Do you know the  feeling in the air before a storm? It is often quiet, there's no wind or very little wind, but there's a heaviness in the  air. I grew  up on sailboats, so I experienced this many times out on the water, where the eeriness is magnified. Often, before a storm, the weather looks calm and un-threatening. It might be  cloudy or sunny, with little wind. But then you get signs that something is coming. There might be "dead waves." These are waves that appear when there is no  wind. They make it hard to move forward because they rock  the boat and make  it difficult for the sails  to catch a breeze. The air feels muggy.  Time seems to move too slowly.  Everything is quiet and yet feels ominous. When I was very young, I was sensitive to this  change in the weather and it made me sleepy. I would usually go into the cabin of our boat and sleep, and stay that way when the storm hit. It wasn't till I was older that storms started to frighten me.

That's a bit how I feel right now.  I have been pushing the feeling away because I can't find a rational reason for it. But it is still  there and comes out in ways I do not always expect. I have a heightened awareness of grief and mortality. Even though I am not grieving, I identify with people who are, and I find myself seeking them out, and reading their feelings and experiences, and feeling a bit ridiculous and voyeuristic for doing it. And grateful at the same time. I sometimes have to make a concerted  effort (or ask Mr. Turtle to make a concerted effort, which is often more  successful) to get my mind off this track. Mostly I/we are successful in cheering me up. But, I have to keep making the effort. I know death and mortality are a part of  life, and like everybody else I have to find some understanding and acceptance of the end of life. So perhaps this is appropriate and healthy. I'm not sure what the line is between understanding and acceptance and over-focus, however.

I am fearful for my health, and others. My parents have had more health issues  lately than they usually do, and this worries me. I worry about them starting to decline, no longer being able to enjoy the things they do. I worry that because of the infertility all I will experience is the death and decline side of life, not the part where new life is created and nurtured. I don't know if I could bear that.

All the medical tests are in a way contributing to my feelings. Not that they are bad in and of themselves - I am grateful for the opportunity to learn what is going on and I wouldn't have it any other way. But going for all the tests has had the effect of making me feel like a collection of parts rather than a whole. I start to lose faith in my own coherency. I feel like a shaky bag of bolts that is going to start losing screws and then wheels and then entire chunks of myself anytime.

But other than that, really, life is  good. The feelings I have described above have not taken over my mind, but they are like a background track.  The rest of the space is full of me and Mr. Turtle doing our thing, working, having fun, seeing friends and family, and yes, making plans for the future.

This weekend we were up at a cabin on a property that has  been in Mr. Turtle's family since early in the last century. It was just the two of us and his dad. We had a good, relaxing weekend. Over breakfast this morning, we started talking about whatever was in our minds. The talk  went to the economy, conspiracy theories, People Today (and yesterday..and future), being able to do math in your head, our consumer society, aliens, etc.  It was a good conversation. But it occurred to me, that when people talk about The Present, or The Future, it's so easy for the talk to turn negative. All the problems in our society, our politics, our economy, our seeming inability to do anything about them or change the course  of events. I have always believed that just by living a decent life as a decent human being, one affects the course of the future in a  positive way.  But it's very hard to present that as an argument. "I think  I have a decent life, and I know lots of other people that do, so that must mean life is pretty good!" How convincing is that??

And yet I sat there thinking, surely I don't believe the world is such a bad place, or I wouldn't be trying so hard to bring other people into it. And I don't believe it's a bad place. I think I was born in the  best possible place at the best possible time (not that it's really possible to know if anything else would be better, but whatever.). But why is it so easy to see the negative? When did I start looking for it? When I first met Mr. Turtle, and it seemed like He Was The One and This Was The Life I Wanted, everything looked beautiful and the ordinary had a shine to it. And I still love our ordinary life, and us. So why talk negatively of the future?

The point: The world is full of good people, and good things being done, and people who are making a positive difference. They need more air time!

What do you think, Occasional Readers? How do you feel about the future?