ICLW

For those who check this blog without knowing what ICLW means, head on over this-a-way.

For everyone else, hi and welcome to my parcel of virtual land. Many of you who have come here from ICLW’s neighborhood are probably wondering what my story is. Well, mine’s a little different.

My husband and I are NOT trying to conceive.

See, I told you. Different So why am I here? Because I already know that I am infertile. Irregular cycles? How about having them spaced 6-8 weeks and accompanied by severe cramps before disappearing for a quarter of the year and then slamming me all over again? And yes, that was on monthly birth control. And ovarian cysts – let’s say that I’m a gold medalist in growing them. Too bad I can’t earn a ribbon for it like herbalists do for their flowers. Oh well. And even though I dive into salads and whole-wheat, lean-meat meals and go walking every day and throw myself into Pilates every night, I’ve managed to gain 60 pounds in a year.

But the buzz words – endometriosis, PCOS, hypothyroidism, secondary amenorrhea  – started floating around in early 2008. I’d started experiencing upper right quadrant pain, nausea and severely depressed appetite. DH took me to the ER (he was concerned because of the amount of pain I’d been in), where I swore up and down during triage that it was my ovary (oh yeah – when my cysts had started up, I was told that I only had one ovary. That was a nice blow. The first ER visit for the URQ pain showed that my left ovary was adhered to the back of my uterus) growing another cyst. I was given good news – no cysts (heck, great news – my left ovary was found!) – but told that they couldn’t find the source of my pain and that I should find a GP. This pain took 8 months to diagnose as related to my gall bladder and during these 8 months is when doctors started dropping those aforementioned buzz words. One GP was convinced that I had both gall bladder disease AND endo, but all the GB scans came back normal and endo, of course, can’t be diagnosed under health insurance coverage until after a year of TTC. The GB was finally diagnosed and the doctor’s visits stopped.

The ovarian cysts continued to pop up. The weight gain started. My OBGYN, who knew of both my history and of my GP’s suspicions regarding endo or PCOS (heck, that’s why he referred me to her!) started throwing every BCP at me in the book. “You shouldn’t be getting cysts on BC. You’re obviously taking it wrong.” She would mumble after an appointment. “Stop being so worried. It’s ok to skip a period or two while on the pill”. Ugh. Whatever. I (most likely stupidly) continued taking BCPs. I continued being wracked with horrendous menstrual cramps. Because I was so exhausted from fighting for treatment for my gall bladder disease, I just accepted that my OBGYN knew what she was doing and kept swallowing the pills and waiting six – eight weeks for my period.

And then, December 2009, my period stopped altogether. Still the cramps. Still the bloating. Still the cysts. But no blood to show for it. That sounds so weird – I was pissed and worried because I wasn’t bleeding.  Kidney stones jumped in on the fun, too (in fact, one CT scan found a cyst in addition to my right kidney being basically a bag of stones. I shrugged off the cyst news, which freaked out my urologist – guess he forgot that I was used to dealing with them!). I spoke to my OBGYN again. She, again, told me to not be too concerned and changed my BCP again.

I’ve now got several blood tests and other tests in the works to check out my endocrine system. My endocrinologist suspects hypothyroidism + PCOS. I’ve learned, already, that the medical world is one big waiting/guessing game.

So, I’m here for support – giving and taking a little, too. I’m here because my heart has already shattered, multiple times, with the painful growth of each new cyst. I’m here because of the tears I’ve shed – first when the doctors weren’t sure if my cysts were cancerous or not, then when my left ovary played hide-and-seek for a year, and finally when my period stopped altogether. I’m here because I’m at the age where most of my friends are married and starting to glow with new life within. I’m here because I look at these friends, at their ultrasound portraits and their triumphant but weary faces in the delivery room, and wonder: what if I am infertile? What if nothing can be done?

So I am here, waiting on the doctors, waiting on my body, and waiting to hear from you. I’m surrounded by fertiles, ladies, and it’s not fun. I am bitter already and haven’t even started TTC. Am I going to be a miserable woman the rest of my life? I don’t know.

Random fact: The medical world is in no way precise. Most doctors only look for textbook symptoms and if you fall outside the normal range, you obviously don’t have that disease. It took so long to diagnose my gall bladder because all my tests were in the normal range (however, they were on the low end of the normal range, which I still say should have been a huge indicator that things were heading south). I had to beg for surgery, had to endure nurses telling me I was crazy, and finally had an emotional breakdown in a doctor’s office before I was finally cleared for surgery. Turns out there were diverticula on the back of my gall bladder, small enough to not be detected on CT scans.

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~ by aevorea on 2010/05/01.

5 Responses to “ICLW”

  1. Doctors can be so stupid. I had a sperm analysis before and after vasectomy. Volume was down 75%, and I tell the urologist, he says that is impossible. But I have the two lab results right here.

    You want to see a pompous doctor that is used to “educating” layman all day, get really angry, just say this: “Perhaps you don’t really understand the reproductive system like you think, and maybe you should go back to school before doing another vasectomy!”

  2. Ha. That would have been awesome to see his face. My urologist tried to tell me that urinating blood (when I was passing a huge kidney stone) was actually my menstrual cycle. He completely dismissed me and my medical records, which clearly reflects that I have secondary amenorrhea.

  3. Sorry you got a D+ in medical school, I sentence you to handle another mans penis day in day out for the rest of your career!

  4. So like you, I am not TTC. I was just diagnosed with a unicornate utuerus and it is painful. So far no one can explain why it is so painful. I am unmarried, and the only cure for my pain offered by the doctors seems to be a hysterectomy.

    I know that kick in the stomach feeling every time one of my friends gets pregnant or gets married. I keep hoping that someday it will be my turn, but someday never seems to come.

  5. Wow! You have been through a lot. Even though you are not TTC at the moment I see that you are still worried that you won’t ever be able to have children. I can relate so much to that feeling! We were TTC for 10 years and 5 months when I finally got my first BFP ever 2 weeks ago. I just want to say to you: do not give up hope, a lot of the time things seem impossible, and that it will not change, but that change can happen anytime, and often when you least expect it!

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