Tuesday, August 3, 2010

Our story

I've been meaning to write out the story of our infertility and now seems to be the right time. I've tried before, but there are hard bits to disclose in there, so I've had to gather up the courage before putting it out there. So, here our story starts.

The story of our infertility is the story of my infertility. Mr. August has no problems with his swimmers. They're all happy, fast and abounding little guys, with motility to spare. If only they could meet an egg, they would know what to do and they would do it.

I have primary amenorrhea, which is to say, I have never had menstrual periods without the lovely assistance of drugs. I was that girl in high school who kept waiting for puberty to show up. It never came. I finally started taking the birth control pill at age 18, and a puberty of sorts occurred, complete with a monthly bcp-induced period (which I refuse to call withdrawal bleeding, because for goodness' sake, it's as close as I can get to a period and I therefore call it a period).

In the different medical consultations I have had about this problem, there has never been a compelling explanation given to me about why this happened. I don't have turner's syndrome. I don't have a pituitary cyst or tumor. I don't have PCOS. But there is another piece of my medical history that muddies the waters BIG TIME.

At around age 17, I started to struggle a great deal with eating and I developed a full blown eating disorder. From the age of 11 on, there had been a number of significant stressors in my life, and the culmination was the eating disorder. At the time of my hospitalization, my BMI was down to 12.9, which was terrifying to those around me (and to myself, retrospectively). At age 20, I spent close to 6 months on a specialized ED hospital unit and it helped me to recover. I kicked the eating disorder out of my life, and today, I'm just a regular, normal weight woman with rosy cheeks and shiny hair.

Most doctors I've consulted with just chalked the amenorrhea to the ED and got me on my way with a bcp prescription. My bones took a beating with the anorexia and the lack of estrogen, so there was never any other option presented than taking the bcp because of the risk to my bones. When I asked about having children, the answer I got from different MDs was that it would be possible with the appropriate fertility treatments. They didn't seem to think it would be a problem. I worried about it, but I didn't know what else to do at that point in time, since I wasn't ready to have children yet.

In winter of 2006, I consulted with an endocrinologist in my town. It's not a very big town, about 100 000 people, and he is the sole endocrinologist here. I went through 8 weeks of blood tests to determine what kinds of hormones my body produced on its own. Ahem...ya, not very much. Not very much at all. He gave me a very grim prognosis, but still referred me to a RE in the big city near lake Ontario. Mr. August and I decided to go, even if we weren't entirely ready to start a family, because I was 32, turning 33 and time was of the essence. We wanted to know what was possible.

Oh gosh! It was a disaster. The RE was so, so arrogant. He said something like "I'll get you pregnant because my reputation depends on it". A big ego is a very strong Augusta repellent. This RE pressured us into starting diagnostic tests on the spot, that very day, when we had clearly said we were coming to gather information in order to make informed decisions. We left that clinic and never called them back.

In January 2009, I saw my family physician and asked her to refer us to the fertility clinic in the large hospital centre where I was completing my residency. It's 90 minutes from where we live, but I was there until August 2009, so I figured it would work out well for a little while. Mr. August's parents also live in that city, which meant that we could stay at their place for early morning appointments.

We liked our RE so much more there. Orders of magnitude more. He is a calm, no-nonsense kind of man who has been in this business for years. He is the director of the clinic. He talked to us about cautious optimism, which is something I could deal with. We liked the other team members as well, and felt like we were in good hands.

After all tests were completed, they conveyed the diagnosis of hypothalamic amenorrhea. Not a big surprise. But at least it gave me something to bring to Dr. Google.

We started our first IUI cycle in June 2009 with injectable gonadotropins (Me.no.pur). 10 days later, nothing. Nothing at all. No eggs, no lining, nothing. It was very disappointing, but as I walked out of the hospital the day it got canceled, I thought to myself, 'some women came here this morning and got a cancer diagnosis'.

Our RE seemed calm, as always, and fairly confident. He had another trick up his sleeve, he said (well, maybe not in those words. He is a very proper eastern European man). I took increasing doses of es.trace throughout summer 2009 so that I could build a good lining. And that seemed to work well. The lining got all nice and thick, and let me tell you, I was feeling fan-freaking-tastic on all that estrogen. In September, another IUI cycle was set up and I started injecting the gonadotropins again, but this time, we started at the dose we had stopped last time. And the dose was increased. And increased again, but to no avail. My ovaries stayed small and devoid of any follicles.

It was October 1st and I had gone for blood work in the city where the hospital is and I was waiting for the nurse to call our answering machine so I could pick up more meds before going back home. The message on the machine said the cycle was canceled and to call her back as soon as I could. I was at Starbucks with a friend, calling from a pay phone (because of course, being a Luddite, I don't have a cell phone). I'm not sure how I got home, but I know my friend was trying to get me to stay with her.

I did call the nurse when I got home, but I already knew what she would say. There was nothing more they could do for us beyond egg donation. My ovaries were just not responding.

I've been searching and wondering and constructing all kinds of stories in my mind about this. I wonder about whether there was a critical period for the development of LH and FSH receptors on the ovaries and, having missed it, they can never be used. I wonder if I lived in the US and had lots of money and could afford pulsatile GnRH whether that would do it. Those are the more logical questions I entertain. The more illogical ones go backwards in time and try to undo what was done.

There are other bits about my HPA (hypothalimic-pituitary-adrenal) axis I wanted to write about, but I'll put it in a follow-up post.

Thank you so much for reading and sharing this very hard IF road with me. I have felt so much less isolated since finding this rich online community. Thank you for your warm and sweet comments. They mean so much.

6 comments:

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  2. I am sorry for your story. Mine has similar elements. I don't ovulate naturally...ever. I do get periods (lucky me) so it was always deceiving. It also made it SO much harder to convince dh about IF and treatments.

    One thing you can do that doesn't cost a lot of money (around $250 US) is have a phone consult with a top clinic. You send them your file and medical records ahead of time and then have a phone conversation about what they think. They may recommend DE or other testing or coming to their clinic, either way you get a second opinion. (CCRM, Cornell and SIRM all do this). You do not have to be a patient or plan to go there to do this.

    I did it twice, once with Cornell (I didn't like the approach) and once with CCRM (where I am now a patient). Being in Canada, I felt that that the drs in the US see a higher number of patients so they maybe they would have seen more of my issue. That was my thinking.

    Anyway, again, I am so so sorry for all you have gone through. As you know I am doing DE in the US, but did look into it in Canada both with in house donors from a clinic and agencies if you ever want to chat. Oh and I'm in the Toronto area so that is where the clinics are.

    Take care.

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  3. (Augusta (I'm something of an idiot...I wrote "Georgia" before and the only possible explanation I can give is that "Augusta" is in the state of "Georgia"). Ahem.)

    I'm so sorry for this rough, rough road you've had to walk. There's one thing that really got me in the above, and that's the fact that when you walked out of that hospital you thought about people who'd received a cancer diagnosis that day. You are clearly a thoughtful person, and someone who doesn't allow herself to get so wrapped up in her own difficulties that she loses sight of everything/everyone else. But that doesn't mean that it doesn't hurt like hell.

    I don't know that much about Hypothalamic Amenorrhea but (in my ignorance) I would like to hope that it was a matter of timing, and that if the right protocol coincides with the right time, that they could tease a beautiful eggie out. I also think that donor eggs are a brilliant resource (though I understand that it's one thing to choose that and another to have it chosen for you).

    And, as far as the wanting to go back and undo things, I understand you. But at the age you went through the anorexia you were simply not equipped (no one would be) with that forward thinking. This stuff so often makes us blame ourselves, examine our lives and what we could have done differently. But I strongly believe that the first rule of life is mere survival. And you did that. You got through it and made it to the other side. Not everyone would have had the strength to do that.

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  4. You are such an amazing, strong, compassionate person. I was struck by how even though you were saddened when your IUI was cancelled you were able to think about those that were receiving even more difficult news.

    We all have things we wish we could go back and undo, but unfortunately we can't. We need to keep moving forward the best that we can. You have overcome some difficult things and I admire you for that. I guess one thing you could look into is whether or not there is a correlation between anorexia and infertility. But regardless of whether or not there is, I would hope you wouldn't spend time blaming yourself for what happened.

    Thank you for sharing your story.

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  5. You are amazingly brave for sharing your story, Augusta. My sister had an eating disorder as a teenager, as well as two of my friends. So, I have lots of empathy for the effects it plays on your life. I know 2 out of 3 of those people have had hormonal disturbances of one type or another. But, 2 out of 3 of them also conceived. (The other hasn't tried yet.) It's hard to know if there is a direct correlation, but it's possible there is not, and you didn't KNOW when that was going on... An eating disorder was about pain, and you had to take care of yourself to live at that point. Even though it was hard to share that story, I am so glad that you did as you never know who it might help.

    It's true, a diagnosis of cancer may feel worse, but don't sell yourself short of your pain. Your diagnosis hurts. It sounds very scary and isolating, but I think it's amazing you want to try and move forward with something. We are here for you, whatever you decide to do.

    Thank you so much for sharing your story!

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  6. What strength and perseverence you have. To have overcome the infamously tenacious diseases of anorexia is no small feat and is proof of your commitment to yourself and your health and to your LIFE. You should be proud of yourself in my opinion to have muscled through so many challenges as a young person - not regretful that you reacted as you did. Self destruction is so often a reaction to mental anguish, and you expressed that anguish through anorexia (I assume, but I mean no offense if I am jumping to conclusions) BUT you moved past it.

    I'm proud of you for that. Really.

    Thanks for sharing this very intimate story.

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