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Sunday, December 15, 2013

Diagnosis


Thank you all for your kind comments and words the past couple weeks. It has meant so much to me during a time of true fear, nervousness, and uncertainty. I am so grateful to have people in my life, some who I have never ever met 'in real life,' who care enough about me to check on how I am doing.

Thank you.

So I'm writing this entry to help me remember what my reproductive endocrinologist ("RE") has explained to me, and I will likely ramble on about how it makes me feel, etc. On Wednesday I had my appointment with the RE. And he is 95% sure I have PCOS. (The remaining 5% would be definite if a gene test for PCOS existed). We now have an answer, and we have some goals & plans. My Testosterone levels were not just elevated, my "RE" was able to conclude that my "T levels" are 3x that of an average woman. So, not good when thinking about fertility. Other test results revealed my insulin resistance, among other things.

The most immediate plans are for me to start one medication (diuretic/anti-androgen Spironolactone) and continue my birth control, visit a dietitian to confirm my current diet being fine (I obviously don't have the obese profile of PCOS, but my weight has plateaued for months even though my glycemic index and everything looks exceptional for my profile), seeing my RE for 30 minute appointments to weigh and measure me all over my body every 3 months, and just wrapping my head around it all. He may add or tweak medicines as time goes on.

When we are ready to have children, I will need to meet with my RE to take me off of one med, and put me on a different one (he is one of the RE's who has done numerous, successful studies using Metformin throughout pregnancy, but Spironolactone can cause deformities in children while pregnant). So, we will need to meet up about 3-4 months before trying to conceive, and then see him regularly until the 2nd trimester or so to be sure I am carrying the child fine.

Essentially, if I don't follow his plan and take the recommended drugs regularly (which put me at the hormone/insulin levels of an average woman) then I have a 1 in 2 chance of miscarrying a child late term, let alone making it through the first trimester with any child (due to luteinizing hormones and insulin levels). That straightened M and I out quickly. This disorder is not something to take lightly. Maybe some have less-severe cases than ours, I don't know, but that's when I got scared. My mother miscarried several times, and my RE plans on preventing that for me!

I have had a lot of people making light of this scenario for me. Saying to not let it occupy me, to not let it weigh me down, or how 5% of women having it is so normal. Stop. First of all, if 5% is so normal, then it would be a higher number, and it isn't. Of course it is going to occupy my mind and weigh me down... it is sad to know that for two decades I was anxious and depressed and medicated for something that could have been diagnosed if my family and I had known about this disorder. Let alone the psychological and emotional trauma from the physical characteristics of this disorder. I have been shaving my legs since FOURTH grade. My Gaga used to ask me if instead of private vocal lessons, did I want to have electrolysis for my arms? I always said no, convinced the awkward hairiness was just a phase, and maybe it'd even end up blonde like so many of my cousins. Nope. Still horribly embarrassing and very much a visible dark brown. Think about how that makes a girl feel when her friends are "normal." I was bullied and teased my entire childhood.

When I am ready (and my husband and I together are prepared) to carry a child, there are all kinds of risks I never knew about. Yes, yay I can get pregnant now that I'd been diagnosed. But it's been less than a week since my diagnosis so I am still informing myself, reading peer-reviewed articles. Possible complications for me are extensive. Miscarriage, gestational diabetes, pre-eclampsia, pregnancy-induced high blood pressure, preterm birth, and likelihood of C-section. When I see people like Victoria Beckham or Jamie Oliver's wife, who have PCOS with multiple healthy children, I do perk up knowing with the right resources a healthy pregnancy can happen.

My biggest concern currently is how to prepare for any of these scenarios. Firstly: the nest egg for my maternity leave needs to be MUCH bigger than I planned as I will have so many more specialist appointments, possibly insurance-not-fully-covered tests, and the like. So that's a big thing. Secondly: maternity leave. Natural birth is 6 weeks of short term disability, 60% of my pay covered through work. Then I can use my annual leave and sick leave at full pay after that. C-section is 8 weeks of short term disability, 60% of my pay. Then I can again, use AL and SL at full pay. If we wait until after Jan 2017 to get pregnant, then some of that short term disability is at 80% and 100% of my pay as I will have been within the Commonwealth of Virginia system for 5 years. And I would also earn leave faster, too.

A classmate of mine from undergrad works for Northwestern Mutual and I got a great disability insurance plan outside of work to supplement my disability through work. Incredibly inexpensive and great to reassure me that bills will be paid and the savings won't be depleted. Since last year, I have been taking less leave when possible, and so I have a carryover of 1 week of leave this year. I hope to continue to do this the next two-three years so I can really enjoy maternity leave without any stress. My goal is to be able to stay home with our baby until he/she is at 12 weeks. (I earn 5 weeks of vacation a year and 14 holidays currently). Being a grownup is so complicated!

Post-baby, I have an increased risk of diabetes, high blood pressure, high cholesterol, and endometrial cancer. I am not all anti-drugs, but knowing I have to take medication for the rest of my life is such a bummer. I hate the idea of needing drugs to be chemically 'normal.' I think that really is what pisses me off the most. I have been going between angry at having drawn this card and being reflective knowing how complicated this disorder is for women globally. It'd be nice if for a few years I just had some normal, medication-less, uncomplicated and easy-peasy days/weeks/months. Normal wouldn't be boring after the life I've had so far! I'd love to have some boring in my life.

4 comments:

  1. A lot to bear.

    Let me just add, from the West Coast, that I have heard of great results, including babies, from acupuncture. This may of course not be applicable to your case.

    So sending hugs as backup.

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  2. How did I miss that you were going through this? It's scary, and anying that effects your health in a negative way is not "normal." Sending prayers.

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  3. Hi Whitney,
    I am sorry to hear of your PCOS diagnosis. I know there is nothing I can say that can immediately make the diagnosis easier to bare. I have been on my own infertility journey for 6 years. After 3 we were lucky enough with medicine to conceive Caroline and carry her to term (I did have a miscarriage in 2009). We have an unexplained infertility diagnosis and this time we have not been successful. I am on the long road of increasing medical interventions and costs. We are looking at IVF next year.
    I can say this. If you and your husband really do want children, do not wait too long. Get healthy and take the meds (I have read great things about them). There will never be an ideal time to have a child. You can always have more money, more security, more resources, but unfortunately you can never make more time. It sucks that our fertility declines so rapidly (believe me, my biological clock is LOUD). When you two are ready, go for it. You will not regret it. Parenthood is a wonderful journey and I have no doubt in my mind that you will be successful in becoming parents if that is what you decide. I wish you all the best and good luck on your journey. Know that you are not alone.

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  4. Thank you so much for sharing, Whitney. When you said you've been shaving your legs since 4th grade, I thought "Wait that's not normal?" and then I started reading. I've read about PCOS in the past, but never really researched it and the more I read, the more I feel like maybe this is the answer to my problems.

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