RESOLVE to Give Voice

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In the lead up to Giving Tuesday this year, RESOLVE has invited bloggers to write about a specific topic each month prior to December 1, 2015. October’s is RESOLVE to Give Voice. If you would like to participate, you can find more information at the RESOLVE Giving Tuesday blogger information page.


Giving Voice to my Infertility Story

My story is like that of many others. Since I was a small child I dreamed of growing up, getting married and having a family. I tried for three years with my ex-fiance to no effect- he suspected he had issues, but it turned out he doesn’t. After we broke up, I met the man I was actually going to marry. We decided to throw caution to the wind and to not try, but not prevent. A couple of years went by with nothing happening. I knew something was amiss, but at the time I lacked the coverage needed to see an RE, so we were on our own. A couple of years after that, having finally secured coverage, I got to see an RE, and we started the treatment process.

I got in to see an RE quickly, went over family history, my health history, and my sexual history, had about a dozen blood panels, ultrasounds, HSG, etc. I’d just quit smoking again using Chantix, so my RE recommended I come back in 3 months to finalize a treatment plan. During this time, I got a call from my RE that my husband and I both look great on paper, and he set my followup appointment for May.

When May rolled around, I went to my appointment to get the ball rolling. Upon talking to the RE, he wanted to do an ultrasound, and during the ultrasound he found a large cyst on my right ovary. The cyst was actually so large he wanted me to start birth control with my period which was due any day. He also took several more blood samples to run yet more tests. Later that day I got a call from his office telling me I wouldn’t need the birth control, that I was actually pregnant, and that I needed to come in the day after tomorrow for another blood test. I went in for a second blood test, and that was when things went sideways. Two weeks after that date I was in surgery for an ectopic pregnancy. It turns out the HSG had opened my severely scarred left fallopian tube, which ended up causing an ectopic pregnancy. During surgery I had my cyst drained, and my tube and baby removed.

Three months after that I was back on the horse, ready to go. The plan over the next several months was to use clomid or letrozol to try and force my right ovary to ovulate, then to have an IUI. Several months went by however with only my left ovary responding to the medications. During this time frame I also switched RE’s twice, trying to find the doctor with the best bedside manner for my needs.

I was finally able to do an IUI in February of 2014, resulting in a negative test. At this point my RE told me that my best option was really going to be IVF. So, I stepped back and began saving the $$$ needed to attempt a round of IVF.

‘Insurance’, throughout all of this, has only ever covered appointments, bloodwork and ultrasounds for me. My IVF, IUI, and all medications related to those cycles are all paid 100% out of pocket by my husband and I.

To afford IVF, I started with research and outreach, and through a friend on Twitter I found a clinic in Syracuse, NY that has affordable IVF plans, which also do not require credit. You pay half upfront, and the other half over the next 12 months. My husband and I saved, did odd jobs, held garage sales, and had a GoFundMe page, and in the fall of last year I had my first round of IVF.

Luckily, I respond well to the medications, so low doses work well for me. At retrieval I had 17 eggs, 10 of which were mature and 9 fertilized. We had 2 for a 5 days transfer and 2 to freeze. Sadly my fresh transfer resulted in a negative, just as the IUI had. A month and a half later, I had my frozen embryo transfer, which resulted in a negative as well.

At that point I went back to my RE and we pored over everything. We decided at the time that I would consult with a local endometriosis specialist, as I had symptoms and a family history of endo. We decided to schedule excision surgery before I did a second round of IVF. I had my laproscopy in June of 2015. During my lap, instead of endo they found several serous cystadenoma with borderline malignancy, in other words, tumors. Luckily they were not cancerous, but they were irregular- they were tumors normally found on your ovaries, that were instead on my pelvic wall.

What this now means for me is that it is recommended that I undergo a full radical hysterectomy as soon as I can. These tumors will grow back over time, and have a 30% risk of being cancerous when they do grow back. The only way to prevent regrowth is for my uterus, both ovaries, and my cervix to be removed. Seeing as how I am still trying for children, I have been cleared to continue trying for the time being, so long as I have CA125 bloodwork and an MRI every 6 months.

This leads me to today. Nine long years have passed since I first started trying. Time is not my friend. Even more than with ‘normal’ infertiles, it is my mortal enemy. Whereas most are racing against the standard loss of fertility that comes with getting older, I am racing for my very life. The biggest struggle in my infertility journey is dealing with knowing just how much time each step takes. It would be bad enough even if it didn’t take a year to save enough to afford the cost of treatment. Mentally, it is crippling. Each round still costs anywhere from $10-15,000 (a full year of in-state tuition for the child I might have!) out of pocket including medications and travel. I am now in a financial race to beat the clock, and I’m still losing.

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Recognizing My Cancer Risk

3b07eafbcd6f2f44884562b9af736d91One thing I think I have skirted around since my surgery in June is the reality of my situation. That reality being I am currently at a 30% risk for ovarian cancer. It’s easy for me to ignore in day to day and to downplay the very serious nature of that risk.

Then I go to a doctors appointment and the discussion of what my plan is happens again. I get the stern face when I tell them I have a plan, but that plan still involves IVF. For right now, I know all of my doctors are okay with my every 6 months CA125 bloodwork and MRI. I also know at some point that will no longer deter them. I know that if I were done having children (which counting from when I started trying I should be!) I would have had surgery for a radical hysterectomy months ago.

But I’m simply not ready to give up. I want to experience pregnancy, I want to have the family I envision.

The other sad part in this equation is the fact that there is only one thing standing between me and my next round of IVF, my lack of insurance coverage. Right now $2500 worth of medication is what stands between me and doing another round of IVF.

So at the end of the day, the fact that my insurance company does not cover my current disease gets a large portion of the blame. If they covered IVF, we would have been through all of this YEARS ago and been done by now most likely. But instead I have to wait years between each try, extending the risk further and costing them more in screening me for cancer. Makes a lot of sense, eh?

On Being a Woman in Tech

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The above .gif has become my mantra in my professional life. A lot of people constantly wonder what it’s like to be a woman in tech, and it boils down to 1 of 2 things:

  • Be nice and be a doormat

OR

  • Be assertive and be a “bitch”

And I mean this in the kindest fashion. If that’s possible. Being a woman in a male dominated field, those are essentially your choices. Or at least your choices as I see them. It’s been my personal experience that any time I assert myself, I am initially viewed as being bitchy. But I refuse to be taken advantage of, or to back down. Because of this, I end up being viewed as bitchy. That’s okay.

How do we fix this? I’m honestly not sure. I just know that’s been my experience working in a male dominated environment, and coming to terms with it has been freeing. They might think I’m being a bitch, but they also respect me, and that’s okay by me.

Ask Me Things!

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In my attempt to blog more frequently, I am enlisting my readers help. The biggest struggle I have, given this is basically a lifestyle blog, and I am a very boring person, is what to blog about? So what do you, dear readers, want to hear about from me? Topic ideas, questions, or even where you find inspiration from. Any and all ideas are welcome!

 

How and Why Your OBGYN is an Idiot

Most women should be familiar with who and what an OBGYN is. They’re that obnoxious doctor we have to see once a year for our annual women’s exam. What does this entail? An internal and external exam, as well as a swabbing. We go to verify we’re still STD free, our cervix and uterus look normal and there’s nothing hinky lurking in our girl parts.

They’re also the doctor you will see once you are pregnant. They’ll do your ultrasounds, run your bloodwork, check your blood pressure and screen you for gestational diabetes, and once your bun is cooked, deliver your baby either naturally or through a c-section.

null (1)So there you have it. Your OBGYN is good at swabbing and catching babies. They aren’t, however, good at helping you get pregnant.

This is something we see time and again in the infertility community. You go to your OB and talk about starting your family. They counsel you that all you need do is ditch your birth control and they’ll see you in a couple months! You try and try and you might eventually call them back. If it’s been less then a year, and you are under 35, they will likely counsel you to stay the path, as it is normal to take up to a year to conceive (If you are over 35, 6 months is when you should seek help). And they’re correct. 95% of couples will achieve a pregnancy within a year of trying to conceive.

The problem arises when it’s been a year and you make that call. A lot of OB’s want to “help” and will claim to be “infertility specialists”. Keep in mind what I stated above. OBs are good at swabbing and catching babies. That’s it. That’s what they do. A good OB upon a year of trying with no success should give you a referral to a reproductive endocrinologist.

A bad OB will try and help. They will give you clomid without monitoring, not properly check if you have ovulated, or if the clomid is causing excess cysts or thinning your lining. They will claim you have no need to worry, as your young and have time, etc. Just keep taking the clomid and you’ll be pregnant in no time!

All in all they will just waste your time. The sad part is that this is something you see and hear frequently. Because you trust your Dr. You expect your OB to be compassionate and know that you need guidance. Reality is you have to be your own advocate, especially when it comes to your fertility. Whether they are being sincere in trying to help or not, they aren’t doing you any favors by not passing you on to a reproductive endocrinologist.

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