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PCOS is messing with my head

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It has been one full week since I got my positive pee stick. Each day this past week has felt like a freaking eternity. I’m doing all right…if doing all right means only squeezing my boobs and pinching my nipples around 30 times a day to make sure that they are still sufficiently hurting and tender. The boobs are pretty much my one lone symptom right now. Earlier in the week my abdomen was feeling very full and crampy, which I was grateful for, but the last few days, the cramps haven’t been very strong, and only come very occasionally.  I suppose I’m a bit more tired than usual, but then again, I love napping in general, and did so even before pregnancy, so it’s pretty normal for me to curl up in bed at around 2PM on the weekend for a little R&R.

There’s only one other “symptom” of my pregnancy that I have…

Yep, you guessed it!

I still haven’t gotten my period.

This is a terrific indicator of pregnancy for everyone who menstruates like clockwork, but for me and my broken body, pregnancy is feeling a lot like… the entire year I just spent without a period. My head is having a very hard time believing that I’m pregnant, even though all signs point to “Of course you are, dumb ass.” It’s just that…well…I was always the one that rolled her eyes at the part in the movie where the accidentally pregnant chick realizes she’s “late” after one week. After my first ovulatory cycle off the pill in September of 2011, I was twelve months “late” until Clomid finally kicked in in September of 2012.

Not that I’m complaining about this whole lack of period thing AT ALL right now (I want that bitch GONE for the next 9 months), it’s just a bummer that the PCOS and anovulation has seriously messed with my head. It made me wonder if anyone else who has struggled with PCOS has ever felt this sort of surreal feeling around pregnancy. Or maybe everyone feels a bit surreal about it the first week? I’m trying to relax and get into this, but the year I spent feeling barren and menstruation-less is hard to shake.  I got so used to not having a period, it started to become my “normal state” versus anything remotely indicative of pregnancy.

Has anyone with anovulation had a hard time synching their brain with their body during pregnancy? I’m hoping that the ultrasound on Tuesday will help me connect a bit more to the little tadpole inside of me. Keep growing in there, little one!

 

What if I’m that girl?

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This thought crossed my mind this morning: What if I’m “that girl”–the one who gets pregnant on her second round of Clomid? Let’s not kid ourselves here: the odds are not “ever in my favor” on this one, but we all know “that girl”, and I have to say that although I want so badly to be happy for “that girl”, if I read a blog entry written by “that girl” I’d probably grumble, “Oooh, wow…so you’re pregnant after two ovulatory cycles…you’re soooo infertile.” all the while beating myself up for being such a jealous ninny. I know in my heart that the year of “trying” that was spent unsuccessfully praying to the Gods of Whole Foods and all things “acupuncture and herbal” to make me ovulate naturally still counts for something. There was a lot of pain in that year…those of us with PCOS or other anovulatory disorders can attest that not cycling, never knowing when to plan for sex, or whether your body will ever produce another egg is a level of stress that is absolutely horrible to deal with on a day in, day out basis.

But this brings me to another question:  why should we ever have to justify our infertility?  This “logic” that if you get pregnant quickly with fertility drugs, you’re not “really” infertile makes absolutely no sense. Would pregnancy after two medicated cycles and a whole year of anovulation make me “less infertile” than someone who gets their period every month and has had 15 BFNs? Or someone who has had to go through a miscarriage? Or repeated pregnancy loss? Is there a sliding scale of infertility? Or is it all just painful as shit?

I remember reading one blogger a while ago, who was confronted with angry anonymous comments about her BFP. After suffering from very unpredictable cycles/PCOS  for a long time, she was pregnant after a couple of rounds of Clomid. But according to this commenter she wasn’t “really” infertile–even though she suffered a miscarriage during one of those rounds of Clomid. She “easily” got pregnant after the miscarriage, and so she had no claim to infertility anymore. Logically, this doesn’t make any sense, I know…but that comment really opened my eyes to the level of pain that others feel about being left behind. Why does Clomid work for some and not for others? Why does Sally get pregnant on Femara, but Suzy only achieve pregnancy through IVF? It all seems like a big crap shoot to me. Some people get lucky and walk away quickly with their winnings, and some have to keep sitting at the table till the coked up club kids stumble back into the casino at 4AM. I feel like there is a part of everyone who is still struggling every day with countless needles, RE appointments, and baseline ultrasounds who wants so badly to be happy for those who make it out of this shit storm alive, and yet still feels sad for themselves that they couldn’t be the lucky one who got the lifeboat.
Katie, at The Cornfed Feminist wrote an amazing post a while back. It has stuck in my head ever since she posted it. My worry about survivor’s guilt has been coming up for me a lot lately, even though I am still in this shitty situation. She sums up my feelings so perfectly: “Part of me is always relieved when I get a period.  Not because I’m scared of pregnancy and parenthood and constant worrying, although all of that is true. No, I’m relieved because once I start to bleed, I don’t feel like an infertility fraud.  I can continue writing my “infertility sucks” blog posts and I don’t have to experience the dreaded PIF “survivor’s guilt.” 

Yes. Exactly. Survivor’s Guilt. Not only does IF make you feel like shit during the time you can’t get pregnant, it damages your unbridled joy at getting the fuck OFF the crazy train, and being elated about your pregnancy.

Katie wrote an amazing pledge at the end of this post, and I have decided that damnit, whatever happens this month, next month, or whenever I’m lucky enough to get off the crazy train, I’m taking this pledge here and now.

I, Sunny (insert your name in place of mine), do solemnly swear not to feel survivor’s guilt if I ever get pregnant.  I promise that I will be happy for myself and will accept all congratulatory comments with graceful guiltlessness.  I know that I will remain an “infertile” til the day I die and pledge that I will not feel like a fraud when I read and comment on ALI blogs.  I pledge to minimize my feelings of relief when I get my period and allow myself to be pissed and have a crazy moment or two before getting back on the horse. 

Today is Friday, November 2, 2012. I am 5DPO on my second ovulatory cycle in over a year. I am still infertile, and I always will be.

Who’s your Famous Lookalike?

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Day 21 blood test results in:

Estradiol: 33

Progesterone: 0.4

No chance I ovulated (duh) and now it’s on to 100mg Clomid. I’ll first pick up some Provera today to induce a bleed (or, most likely, spotting, as my gyno said my uterine lining was probably too thin to have a full bleed. Thanks, low estrogen!). I have many other questions about estrogen levels (like, why the *f* is my body not producing any?), the use of estrogen patches, and Clomid’s effects on estrogen, but I will save that for another post.

I was thinking yesterday about all of the virtual friends I’ve made through the blogging process. I see the way we hold each other up in times of crisis, support our wins and our losses, and are just….you know…there for each other. For lack of more adjectives, this community is amazing. If I had to go through this with only myself and Hubs at the helm, I would feel so lost. So thank you to everyone who reads my ramblings. After one failed round of Clomid, I can tell that the further I go down this road with meds, the higher my hopes for each cycle  will get, and the more disappointed I will be if it doesn’t work out.

So, as I was thinking fondly about you yesterday, I realized that I may not get to meet many of you in person, ever. The anonymity that many of us keep on the blogs (myself included!) also keeps me from ever knowing what you look like!

Then, this morning, I came across a famous lookalikes site. Holy shit. This one may be my most favorite pic ever!!!

Millard Fillmore? Or Jack Donaghy?

So, my question is, who is your celebrity look-alike? I have a few I get pretty consistently.

As a girl, I would get: “You look like that girl from My Girl” at least a few times a month. Turns out, I still highly resemble Anna Chlumsky. And did I mention I love Veep?

Coming in a close second is, for some odd reason, Nicole Kidman. I have no clue why, but I think it’s simply the shape of my eyebrows.

Who is your lookalike?

 

See spot.

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See Spot say, WTF.

I woke up this morning to thick brown spotting discharge. The stuff dreams are made of. Ortho Tri Cyclen Lo, you have failed me. I had a feeling that the low amounts of estrogen in this pill would not be good for someone like me whose estrogen levels are already crap. (From what I understand, spotting occurs on the pill mainly due to a lack of estradiol). Of course, when I logically brought this up to my gyno as he was giving me the free sample he “poo-pooed” it, and said it would be fine and that many patients like the new “low estrogen” pills. Too much estrogen leads to cancer, yadda yadda… Yes. Yes, I’m sure it does. But it’s because most bodies ALREADY MAKE ENOUGH ESTROGEN.  Can someone tell me why it is that doctors always seem to look at patients as a collection of statistics rather than individual cases? It’s making my menstrual blood boil. Because if my gyno took one look at my labs, he’d see that after 4 months of nary a period, my estradiol levels were basically undetectable. I mean, seriously. I’m not trying to be a pain, I’m not trying to be “special”–it’s just that, well, my case IS fucking special. I’m not like the 90% of women out there who wander in and out of the gyno aimlessly with a huge shit eating grin on her face and blindly take pills prescribed to me. I need a bit more analysis than, “Well, this should work for you because so many women respond well to it.”

Guess what other drug he said this about?

Wait for it…wait for it…

If you guessed Clomid, you’d be correct! As soon as I did my homework on Clomid, I discovered that many women w/ PCOS don’t respond well to it due to the fact that it screws with estrogen levels and lowers them, thus making the uterine lining too thin for implantation. Hot flashes and dry CM are also another indicator of screwy estrogen levels. Many women are even given estrogen supplements along with Clomid to help with these issues. Of course, when I brought this up with him, he gave me the “so many women respond really well to Clomid. You should give it a try” response. Just like he did with this birth control that I had reservations about.

Yes, I know I’m over reacting a bit…spotting isn’t the end of the world, and hopefully it will lead to a full bleed as soon as I stop the pill pack on Sunday. It’s more the feeling that I am not being listened to by my doctor. That I’m being treated like every other one of his fertile patients.

Also: word to the wise. If you’re Googling: “spotting on ortho tri cyclen lo” DON’T go on a run of the mill birth control message board. You’ll get questions like this:

“I already have too kidz, and I’m having brown blood. Does this mean I won ever be able to have more kidzz??!!!?”

Or this gem:

“I’m on ortho lo and I’m 6DPO, but I’m spotting! Does this mean I’m pregnant? CAN SOMEONE PLEASE HELP???”

Really. You’re 6DPO. On birth control? It was all I could do to not hit a “reply” button with a really snarky response. I feel like if you’re taking birth control, you should be forced to know how it works. Like I said, these women just smile, nod, and take these magic birth control pills their doctors shove at them by the fist-fulls, and they don’t have a goddamn clue what is going on in their bodies.

Ugh, it’s so tiring to be up here on this soapbox!

So now, assuming I get a full bleed at some point soon, I might be starting Clomid early next week. We’ll see if my theories on my estrogen levels prove correct this time around. I anticipate lots of night sweats, and thin uterine lining in my future. I’m trying to maintain a positive attitude about it all…but this whole thing feels sucky right now.

Endocrinologist Day Is Here!

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Yahoo!!

Today is my first consultation with Dr. Good Eggs. Although my first appointment was scheduled for October 3, he had a miracle appointment open up this week and I snagged it like a crazy woman at 3AM on a Black Friday wedding dress sale.

The doctor has all of my files to date, and I received no less than 3 calls and one letter confirming that I am keeping my appointment today. Clearly this guy is in crazy demand–liquid gold for the ovaries, me hopes!

Although he is not a reproductive endocrinologist specifically, he does specialize in PCOS related hormonal disorders. I’m hoping that he can decipher some of my blood work done to date, order some new tests, and give me some hope that pinpoints the root cause of my severe PCOS.

Questions I am going to ask him:

1. Looking at my ultrasounds and the fact that my ovaries are covered in cysts, how will that effect ovulation moving forward. Will my cysts block future ovulation?

2. Most of my results are in the borderline “normal” range–this means they are often one or two points off from being too high or too low (my A1c test that measures my blood glucose levels over 3 months is one point away from being too high). My question is: is a borderline “normal” number the same as a low high number? My thyroid, Vitamin D, and DHEA numbers are also borderline.

3. Has he seen women with this severity of PCOS get pregnant with Clomid or other fertility injectables, or is it generally through IVF. What has been the most effective form of treatment that he has seen for infertility in people with similar cases to mine.

4. Does his course of examination/ treatment of thin women with PCOS differ from obese women? How so?

5. Has he noticed a correlation between frequent yeast infections and PCOS? If so, why is that?

6. Are FSH levels that are not taken on Day 3 still accurate? Meaning, do they accurately reflect my fertility? I have been concerned because my FSH levels have gone steadily upward over the last 2 years, but none of my FSH levels were ever drawn on Day 3.

7. Why did I have one ovulatory cycle after birth control? What did the hormone in the pill do to trigger my natural ovulation the month after I was off the pill?

8. My estrogen levels were very low after 4 months of not ovulating, and my uterine lining was basically non existant. What does this indicate? Has my body stopped producing natural estrogen? Are signals crossed? Are the receptors on my cells blocked by pill hormones? Will estrogen pills help build my lining? Would he recommend estrogen supplements if I were to go on Clomid?

9. Would it be wise to do a scan of my pituitary gland to see if there is a tumor?

10. What about my thyroid? My numbers there are borderline. Could there be an issue?

11. Does he have an RE he trusts to refer me to?

12. What are the blood tests he finds the most imformative when dealing with PCOS. Is there any that I am missing?

I feel like I’m forgetting about 10 billion questions, but I think this is a good start for Good Eggs. Any other glaring questions I’m missing?

I suck at dieting

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My birthday “get out of cardboard tasting food” free day turned into a weekend. I tried as best I could to be “good” about eliminating wheat, dairy, caffeine, etc, but I was hungry, having fun, and just said fuck it. Belle, I’m sorry, but I sucked at this challenge this time around 😦

Here’s the problem(s)

1. I really like to eat wheat products sometimes. Giving them up entirely is completely daunting, and makes me really really sad.

2. I love caffeine, and really enjoy my morning coffee. This is the only time I have caffeine. Not drinking it makes me irritable and sad. I’m sure I could get over it eventually, but damnit, I love looking forward to it in the mornings.

3.When I set these strict guidelines for myself, I mentally abuse myself if I so much as taste some yogurt or cheese based products. This is not a fun way to live and also makes me sad.

Basically, what I’m discovering is that when I completely restrict myself, I end up falling off the wagon even worse than I do if I mentally say that I will allow myself to have a bagel occasionally. Rather than have a couple bites of bagel, I’ll eat 3 of them if I feel restricted. Then comes the remorse, which causes me to eat more bagels.

I hit a wall this weekend where I finally came to some sort of acceptance that changing my diet drastically will not fix everything. It is not the magic solution to my PCOS. If someone told me that I could cure my PCOS completely if I spent the next 2 years eating a strict elimination diet with no exceptions, I honestly don’t think I could do it. It doesn’t mean I don’t want to fix my PCOS badly enough, it just means that I have to think about my quality of life and value that as well. I did not start this journey in this place, but I’m here now. I need medication.

Hubs and I have been doing a lot better, and had a discussion this weekend about dipping our toes into “trying” again. I am going to start on my birth control, get a period, and then see if the BCP helps me to ovulate for the first month I’m off it (I ovulated the first month off BCP the last time). We will try to “catch” the ovulation next month. If that doesn’t happen, it’s back on BCP and then on to Clomid.

During this time, I will try to eat as much gluten free/wheat free/ dairy free/ caffeine free/ alcohol free things, but I will not beat myself up if I slip a bit.

As for the exercise, I am continuing to do this just about every day. The weight loss has been extremely slow, and mostly non-existent which leads me to believe that my metabolism is fucked, I’m getting older, or my insulin resistance is making it much more difficult to loose weight. I’m thinking of getting back on 1,000mg of Metformin just to see if it can help me with the stubborn belly fat that will not go away.

Thus concludes my Monday update!

Will you get better?

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It occurred to me today that I haven’t accepted that I may never recover from this. I know that it seems irrational, like I should know by now that PCOS can’t be “cured”, but no matter what the facts of my situation are (FACT: I have not ovulated in 9 months) I still hold on to this hope that one day, I will wake up, and my body will somehow magically decide to work perfectly. I have never managed to move past the stage of grief that is “anger and denial”. I cannot accept that my body is broken, and will never work properly. I cannot accept that it has never worked properly. I have never had regular cycles ever. Today, I got so angry at every single woman out there with perfectly predictable cycles. It was a completely irrational anger, I know…I am angry at both my sisters, my best friend, my old college roommate, basically, every woman I know. Aside from the blog community, I have not met one other woman who does not get predictable cycles. It enrages me that I was dealt this hand, and then I feel guilty because in the crap shoot of things you can be dealt with in life, irregular periods is certainly no where near as bad as some other things.

Today, I cried because I am angry that after years as a teenager telling my mom and doctors that something was wrong with my cycles, I was told that this was just my body “adjusting”. Irregular periods were “normal” because my mom had them, and my grandmother had them, and THEY had kids. I feel angry because there wasn’t one doctor who thought to test me further. Instead, I was just told to go on the pill.

There are some days when I feel so strong about this, and other days like today where the sadness I carry around about it completely overwhelms me.

So my question is: Do any of you still carry a belief that one day, you will get better? Do any of you who have PCOS feel like you have truly accepted the fact that you may never ovulate “normally”? Do any of you cling to the hope that one day you will find that magic bullet–that one recipe or supplement or exercise that kicks you into gear? Or that you will eliminate that one food that has been the cause of all of your problems without even knowing it?

Do you hold hope that one day, you will get better? That your ovaries will be as clear as a baby’s bottom? That you will have regular cycles?