July 22, 2010

I was reading someone else’s blog and came across her reasons for starting her blog anonymously. She has since ‘come out of the closet’ and the blog is no longer anonymous. She stated that one of the reasons she started her blog and shared it with real life friends and family so that they would know what she she was going though. That makes sense. But she was protecting her identity and not revealing any identifying info so others – presumably strangers – couldn’t figure out who she is. That struck me as a bit odd. Mostly because that’s not my reason for maintaining my anonymity.

I remain anonymous for different reasons. I don’t share this blog with friends and family. If I did I wouldn’t be able to use it the way I do – as an emotional outlet and a place to vent about people I know IRL. It’s really more of a journal. Which likely means it will never become popular or make it on anyone’s list of Must Read Infertility Blogs. And I’m OK with that. It serves my purposes. It acts as a journal for me and it’s also a way to share my experience with others who may be having similar experiences. Through blogging, and twitter, I’ve discovered other women who are going through the same things. It makes me feel less alone. So maybe this blog can do that for someone else.

As for identifying information… there are about a zillion clues to my real identity contained in this blog (although I suppose you wouldn’t pick up on some of them if you don’t already know me). I don’t work that hard at remaining anonymous. I don’t use real names so that all our identities are somewhat protected (I really don’t want to out Right Guy – that’s not my place and he’s a private person). But if someone were to try and figure out my real name, I don’t think it would be that difficult and I don’t think I’d care that much. I think I’d have more trouble with friends and family reading this blog than ‘strangers’ finding out my real name.

I wrote those paragraphs a few months ago and have had this post saved as a draft ever since. At the time, I had an original feeling of needing to explain my choice in remaining anonymous. But after some reflection, that feeling passed and just didn’t quite resonate with me. So the post has been sitting in the ether, waiting to be either deleted or expanded. Well, today, after reading Keiko Zoll’s first installment of A Belly Full Of Fire I decided I needed to finally revisit this topic. Because I’m torn.

I would really like to Take The Pledge issued by Resolve. I am open to my friends and family about my infertility (although I can’t say I’ve shouted it from the rooftops). And I have no problem using my real name to advocate for infertility issues. But I DO have a problem with using my real name on this blog. And I feel that if I’m going to do it, I should do it ALL THE WAY. Dilemma.

What to do?

  • I could start another blog/twitter account under my real name and use it for advocacy and this one for venting. But that seems silly. And if I’m going to be a health advocate I would have to do it for not just infertility but also lung cancer and other senior/caregiving issues. And who has the time?
  • I could remain silent but that seems irresponsible. Although, there is also a part of me that feels like I’m too old. I feel like the ladies with POF in their 20s have a much better and bigger soapbox to stand on. I suppose I’m still dealing with feelings of guilt that I simply waited too long. Which is really not rational given that my symptoms, masked for who knows how long by birth control, started at age 34. It is also not rational given that I did TTC with my ex-husband when I was 28. Back then I had endometriosis and it turned out he had an abysmal sperm count. But somehow I still feel ‘judged.’ I still feel like everyone thinks I just put off having kids to further my career or something. And that wasn’t it AT ALL.
  • I could start using my real name on this blog/twitter. SCARY.

I guess I need to deal with all the aforementioned guilt first. Ooh, what fun. ::sigh::
I suspect this guilt runs much deeper than I’m even aware of. Even the name of this blog, Fox In The Henhouse, is a (not so) subtle nod to the guilt I feel that I somehow caused this. Because I am the Fox. So I’m essentially accusing myself of stealing my eggs. Boy, am I a piece of work. ūüėČ Again, good thing I have a therapy appt in a few hours.

Anyone got any advice on overcoming all this crap and just going public?


The Bitch Is Back

July 3, 2010

Aunt Flow showed up on my doorstep yesterday quite unexpectedly. With a suitcase full of giant cramps. I thought it was 10-11 DPO. I had thought the spotting the night before was implantation bleeding. I stupidly allowed myself to hope a little more than usual. When will I learn?

Let’s recap Cycle 2:
First of all I can’t believe this is only Cycle 2. It feels like forever. In fact it has been 8 months now since my diagnosis. We waited a few months on HRT to see what my body might do on its own. Right Guy and I were officially “trying” but my my body wasn’t cooperating. So I eventually tried Clomid not thinking I would get much response. POF/POIers don’t typically respond well to Clomid. My response was beautiful for Cycle 1. I got a BFN but I was ecstatic that a $10 drug worked. Until it gave me a cyst. So I had to wait for Cycle 2.

Nothing about Cycle 2 has gone right. When I went in for my CD12 ultrasound I had 2 follicles – neither mature. I was kind of expecting that news since I had been fairly crampy the first time around and this time not. So we canceled the plan for the Ovidrel trigger shot and just waited to see if my body would finish the job on its own. Meanwhile, my morning temperatures were a little erratic. Which was another clue that things weren’t going right. When I started to feel crampy I told Right Guy we should go for it even thought the OPKs were saying no. So we did for a few days. Then I sort of gave up when the OPKs kept coming back negative. My temps were just a wee bit higher but still not high enough to indicate I had ovulated. Or so I thought. Then the OPKs started coming up positive. So we went back to trying. And a couple of days later the temps went up – but again, only slightly. But it was technically up enough to indicate ovulation. I still wasn’t sure so I went in and got my progesterone tested. 14.4. An outstanding progesterone level. I thought things were looking up.

Since the Clomid hadn’t worked as planned, the new plan was to make sure I primed with estrogen before each cycle – no matter what protocol we use (Clomid or injectibles). So I had put my estrogen patch back on as soon as I thought I had probably ovulated. I reasoned that the Estrogen was the reason my temps were low. They never went above 98. This whole cycle my temps were in the 97s (with one dip to 96.9). But I chose to ignore the temps. I was trying to focus on the positive – I had ovulated!
Aunt Flo
So now that Aunt Flo has shown up I’m wondering whether she is indeed early. Or did she show up right on time? Did I ovulate before the + OPKs? If that’s the case my body is screwed up. Or did I ovulate when I think I did and she’s early? In which case my body is screwed up. Why am I surprised that my body would be screwed up? We already knew that. I guess I was just hoping that it was only screwed up in the one way we already know about.

And what’s with Aunt Flo’s suitcase full of cramps? Do I have another cyst? Is it the endometriosis? All I know is that it is not fun. I’m not doubled over in pain just yet. But I don’t feel too far from that point.

Infertility Poseur?

May 15, 2010

Sometimes I feel like an infertility poseur. Despite the fact that I have Primary Ovarian Insufficiency (POI). There are a couple of reasons I feel this way. Firstly, I don’t (yet) meet the medical definition.

Infertility is the failure of a couple to conceive a pregnancy after trying to do so for at least one full year.

I haven’t been trying to conceive for a year. Many of the women I’ve ‘met’ in this infertile corner of the web have been battling infertility for many YEARS. I’ve only just started. I started because of the diagnosis. I didn’t get the diagnosis because I started trying. Sometimes it just all seems backwards.
Despite the fact that I haven’t been trying to get pregnant for a full year I claim the title ‘infertile.’ Considering I don’t ovulate regularly and often not at all I am essentially infertile. And headed towards barren on a fast train. Considering that people with my condition have a 5-10% of conceiving I’m not likely to get pregnant within a year – or at all. So I AM infertile. Except sometimes I feel like a poseur. Sometimes I feel like I don’t deserve the title – which is just silly because no one really deserves it. No one wants to be infertile. But have I earned it yet?
The other reason is my age. I’m now 36. I was diagnosed at 35. Since I was on birth control there’s no telling how long the symptoms were masked but they definitely started by age 34 if not before. 34 is definitely too young to essentially be starting the process of menopause (even though it’s not technically menopause that’s the easiest way to describe it). But, now, at age 36 I should expect my fertility to be diminished. Not in the toilet, but diminished. And I’ve ‘met’ several women, some, like me, also suffering from POI, who are much younger. They somehow seem more ‘worthy’ of the infertility badge than I do. They’ve earned it. Have I? It must be much more devastating to receive this diagnosis at 25 than 35. I can only imagine. And for that reason alone they’ve earned the title.

POI is not as rare as you might think. It’s not common, but 1% of women in their 30s have it. That’s not rare. But no one knows about it. Even my GYN didn’t think I had it – but she did the tests. Some GYNs wouldn’t have. Some women don’t get diagnosed so quickly. I often feel myself wanting to become a vocal advocate for awareness. Awareness of POI as well as infertility in general. But feeling like a poseur prevents me from doing it. I feel like I’m simultaneously too old and too new to fight the fight. I wouldn’t make a good posterchild for this campaign – I’m too old. And I don’t have the experience – I haven’t been through all the treatments.

But even if I can’t get past feeling like a poseur to become an advocate I was ecstatic to see that Keiko Zoll has done it. I just read her first post on Your Great Life where she is featured as a ‘Person With Passion.’ Her blog, Hannah Wept, Sarah Laughed (also amongst the links on the right) is well written and thought provoking. If I can’t feel comfortable being an advocate for infertility awareness then the least I can do is help her do it. Go Keiko!

One last thought: As I’ve been writing this I’ve been trying to figure out why I feel like such a poseur due to my age. I’m too young to have run out of eggs. My age shouldn’t make me feel like a poseur. But somehow I feel like I should expect to be infertile because I’m 36. Is that rational? Probably not. I’m a pretty rational person. So what’s going on? I think, on some level, I haven’t moved past the stage of blaming myself. I must still be blaming myself for this diagnosis. I haven’t moved past the What Ifs of the past. I’m still wondering What If things in the past had been different, if I had done things differently, I might not be facing this now. Did I do something to cause my egg supply to plummet? What if I had managed to have kids before? Then it wouldn’t matter so much now. I need to find a way to move forward and put the past behind me. Any suggestions? Anyone else out there feel like a poseur? Or is it just me?

More info on POF/POI

May 7, 2010

I ‚̧ Twitter. I have found the most amazing people and resources on Twitter recently. Before I started this blog and Twitter account (@StolenEggs) I frequented a message board specific to this issue. I still post on that board occasionally. It's a great resource for specific info relating to Primary Ovarian Insufficiency and high FSH. But somehow I just don't get as many positive vibes there as I do from the Infertile Twitter community. Even though many of these women (and a few men) are not dealing with the same condition, we all still help each other and share info about #infertility in general. I'm just as likely to find someone who tweeted, or re-tweeted, about POI as I am to learn more about PCOS or other fertility issues. And that's exactly how I found out about Project Vital Sign sponsored by Rachel’s Well. Which led me to a Washington Post article from 2 years ago.

The more I find, the more I realize how incredibly LUCKY I am. Obviously I’m not lucky to have this condition. But I am extremely lucky that my GYN knew to look for it – even though she fully expected me NOT to have it. It didn’t take me 2 long years to get a diagnosis like the woman in the Washington Post article. At least she (my GYN) was aware enough of POI to order the correct tests (one of which is a fairly new one – AMH). She then conferred with a specialist before giving me the diagnosis and then encouraged me to follow up with a reproductive endocrinologist. Not only are most women unaware of it, many doctors are as well (or only minimally aware of it). Education is key.

Education is key. Enter Project Vital Sign sponsored by Rachel’s Well. Every woman and every doctor should be aware of what their cycles are trying to tell them. My diagnosis was delayed not because I had a bad doctor, but because I was on birth control. The birth control masked the symptoms for who knows how long. Some of those symptoms eventually broke through but I suspect I would have been alerted much earlier had I not been on birth control. Or if there were a screening test.

I went religiously for my annual exam and pap smear. You really have to if you’re on any kind of birth control. They could easily have incorporated some standard bloodwork in my annual exam to check for this problem. But they didn’t. And that’s one thing Project Vital Sign hopes to change. This condition is not just about my fertility (or rather my INfertility). Like many other conditions that affect your fertility (e.g. PCOS) it can also affect your overall health and put you at higher risk for ugly things like osteoperosis and heart disease. If it continues to go undiagnosed there are other health concerns that will be missed and which could otherwise be prevented.

So, if you’re in the U.S. hop on over to Project Vital Sign and send a letter to Congress to raise awareness and advocate for more screening.

And BONUS! Apparently there IS a ribbon for POI! And thanks again to my Tweeps who share all this info! The Interwebz ROCK!

I <3 NPR

May 5, 2010

I’m so happy to see this little known condition getting some press. Perhaps if women are diagnosed earlier more will be able to have children. More press == more research == treatment.
NPR: The Story – Primary Ovarian Insufficiency

The Treatment

April 20, 2010

I think one of the more devastating things originally about this diagnosis was that I went from feeling young and vibrant to feeling… OLD. ¬†Suddenly I had to worry about osteoperosis – and not in that ‘Oh I’d better take a multivitamin today so my bones are healthy when I’m 70’ sort of way. ¬†It was more of an ‘Oh shit! ¬†I could be that hunched over grandma by age 50’ – except I wouldn’t be an actual grandma because I wouldn’t be a mother. ¬†OK, so maybe I exaggerate a bit. ¬†But it was rough to hear that I had to worry about that sort of thing in my 30s. ¬†Unless, of course, I go on HRT (hormone replacement therapy). ¬†Then my hot flashes go away along with the increased risk of osteoperosis. ¬†And I officially join the ranks of the menopausal. ¬†Well, semi-officially. ¬†Really it’s ¬†more like peri-menopause. ¬†But emotionally it felt the same.

After many sleepless and sweaty nights, the HRT was like heaven.  Having to change my estrogen patch every 3.5 days was kind of a pain but a small price to pay for being able to sleep through the night.  It felt wonderful.  After just two days on the patch, I actually ovulated, much to the surprise of my RE.  She tweaked my diagnosis from premature ovarian failure (POF) to ovarian insufficiency (POI) aka Dimished Ovarian Reserve (DOR).  It seems my body like being off birth control and on estrogen.  I had always avoided birth control with lots of estrogen due to my endometriosis (which my RE tells me is no longer a concern due to the POI).

Yay! ¬†My ovaries are not in a coma! ¬†Yet. It’s celebration time. ¬†Maybe I can get pregnant. ¬†Quick – convince Right Guy we have to go for it. ¬†He’s had months to think it over now. ¬†OK. ¬†Whew! ¬†He’s on board. ¬†Let’s go for it!

Oh wait.  Maybe those ovaires ARE in a coma.  The next 3 months of HRT allowed me to catch up on sleep.  But so did my ovaries.  I think they decided to play Sleeping Beauty.  Where, oh where is Prince Charming to come and wake them up?