Endocrinologist Appointment: An Update

Worried about my liver. It's tender when the doc palpated it.

AST/ALT, plus lipid panel and iron/ferritin etc are all perfect. 

Endocrinologist told me I haven't reversed my NAFLD, despite weight loss and cutting my risk factors for diabetes etc. 

Now wondering if my (non-symptomatic) factor five leiden mutation (heterogenous) might be influencing/impacting the NAFLD, as well as my hypertension. To add to that constellation of fuckeduppedness, even despite my weight loss, I still have Syndrome X. 

As is my nature, my mind goes to the things I can control, like how to combat oxidative stress on my liver; yet, in conflict with that, I still want what I want. I want to be able to drink a glass of wine or cocktail a week or so. 

In the meantime, I am trying to hydrate more. Going to up my omega-3 to 2x a day. I'm already on alpha lipoic acid and milk thistle both 2x a day. Was investigating SAM-e, but endo said NO. So not sure what else I can do to hack this. 

I'll be scheduling an abdominal sonogram for the liver, and a pelvic U/S for the adenomyosis and PCOS sometime soon. So I guess I should anticipate being referred out to a liver specialist in 2015.

Man (or in this case, WOMAN) Makes Plans & God Says HAH!

Having PCOS + Adenomyosis + being well into my 40s = My uterus pretty much scoffing at the notion of a calendar. The month of May saw fit to have TWO onset days (May 6, and roughly May 28). Doing the rough math, and applying "Kentucky Windage" to my menses, according to my calculations, my onset day could very well be the 25th, the day I'm due to be in NYC for my 3.5 yr check up/weigh in with my bariatric guy, as well as possibly galavanting with a friend or two (or neither, as both haven't given me conclusive information I can depend upon that our plans are 100% a "go"). 

Opiate and pesudo opiate, and tryptan at the ready. Thermacare patch. Chewable ibuprofen just in case. And if all else fails, vodka tonic.

Maintaining

Nothing new to report. Or so I think.

The weight I gained while on the Cymbalta hasn't really seemed to come off, but no NEW weight gain, so I guess there's THAT. I just wish I could jump start the weight loss again. I'm trying to eat 1/2 a grapefruit a day, so hoping it helps burn fat, or boost metabolism or whatever.

I'm now about a month into the experiment known as physical therapy. I've been going once a week every week, though two weeks ago I had to skip a session and next week skip a session due to scheduling constraints. But for as little as I've done thus far, I feel different, physically. Perhaps in a few weeks I can explore a pilates class without harming myself in the process. 

Blood work drawn on Monday; accoutrements acquired for a 24 hour urine collection (good times). Perhaps sometime before my grand vacance I'll get around to doing the actual collection.

So, no new antidepressant or anti-anxiety medication. Been cold turkey off everything with the exception of an occasional cocktail for medicinal purposes.

And about that cocktail... 

Last Friday I hit my tipping point. I brought booze to my office, as I knew Friday would be a particularly horrible pain day (and it was, and it was also followed up by an even worse Saturday, which rendered me bed bound with a migraine). 

I think I'm ready to start thinking about a hysterectomy. According to my rough math, I'm losing 14-28 days a year due to the migraines, menses mess, and overall agonizing pain. Life is too short for this.

Of course, my mother is the poster child of ILL HEALTH, so I won't be using her as my case study for post-op hysterectomy progress. My mother-in-law, in stark contrast, is nothing short of awesome. Good overall health and lifestyle and mindset. So I'm hoping her recovery is a speedy one, and I hope she dispenses plenty of first hand knowledge of what her experience has been.

Bottom line is, pain sucks, life is short, and I don't want to be a burden to my husband or friends.

ETA: Six months later, and I am no closer to actually thinking about or considering a hysterectomy. And glad for it. I started taking B1 supplements, and it's helped quell some of the agonizing pain. Let's wait and see if it continues to diminish the pain over the long haul.

Onset to Onset: 23 Days

23 days since ablation & tubal ligation. 23 days of medium-to-light (and back to medium) flow. 23 days, onset day to onset day. Tradmadol ingested one hour ago. Fuck me running, status quo has been maintained (or one could argue that it's WORSE, given I've been bleeding nonstop for 23 days). But I guess bleeding = the blood is coming out and not building up in utero or in the fallopian tubes, so perhaps there's a chance I won't suffer from some post-ablation syndrome weight gain. Here's hoping. But still? I'm fucked no matter how you slice it.

Trifecta of Suck

Yesterday was a trifecta of doctor's appointments. Three. What was I thinking. (Well, I know what I was thinking, let's get this shit over with!).

First up was the renal guy, to follow up re: microalbumen in my urine, elevated cortisol in my blood, and find out about whether my bp Rx was the best for me, and also rule out any kidney damage from 40 years of being overweight and having insulin resistance issues. This ended up being more positive of the three appointments. (Looks like it might end up being nothing to worry about.)

Second up was the ReproEndoGuy. Still impressed w/my weight loss and my ability to fix the iron issues (I upped my Feosol to 3x a day during menses, w/2x a day the rest of the month). Told me to drop my D3 to 2000IU a day (too much could result in kidney stones). And looky there... yes. A nodule on my thyroid. Apparently it's been there all along, yet he never mentioned it, and only mentioned it to me (you guessed it!) because it's gotten larger. So I have to hurry up and wait. I see the doc again in four months, but three months from now, I need to schedule an ultrasound. So it'll be July before I have any idea on what's cooking in that department.

And the last of which was going to my gyno. Regular exam, coupled up with a discussion on my accepting I need to do the ablation to take care of the adenomyosis and endometriosis pain, and OH WHILE YOU ARE IN THERE, get my tubes tied at the same time. Because with my shitty luck, I'd be the 1 in 1000 who gets pregnant post-ablation. And given my age, other risk factors, and the ablation, well, it's come down to my survival vs the existence or survival of a metaphorical baby, and well... sorry baby, I'm looking out for #1.

This isn't glib or careless or even rash. I'm tired of living in pain, and being a prisoner to my period. I'm losing effectively 1/4-1/3 of my month to this beast. The pain is debilitating and damn near crippling; and the mess is substantial. But the long term effects of not having a kid, is the thing that's going to be a moment-by-moment thing for me to deal with.

As I've said before, I always thought motherhood would eventually find me. And only now am I realizing it was never out looking for me in the first place. Kind of sobering. Is this my destiny or my fate? While I never fawned over the kids of other folks, I always thought if I had my own, I'd feel differently (about them, not kids in general).

I've had a happy life the last 12 years, which I've been married to the husband. No kids, I feel, will mean just more of the same status quo. And yet, I'm sad. The only folks who truly "get" what I'm going thru are struggling with their own journey of non-motherhood. I'm equally glad and sad I have friends going thru the same struggle.

I think this for myself, and for all of us on the same journey: What is to become of us? What do we do now?

Dear Uterus

Dear Uterus,

You are now on WARNING. I am about to throw up the white flag of defeat. No, I'm not evicting you in entirety; however, be forewarned, our endometrium? Yeah that fucking piece of shit? Yeah, it's going to get straifed with a flame thrower. For realz.

I've lived 44 years of my life naively thinking that eventually motherhood would find me; I'm only realizing now that motherhood was never looking for me in the first place.

The time for valiant and diligent effort has passed. No tears are being shed. I've intellectualized myself OUT of thinking it'll ever happen. We're not trying. Too many risks, too many really to itemize herein.

So that all being said, since it's not going to happen, there's no need for me to worry about the permanence of permanently destroying my endometrium as a way to stave off the excessive pain (and not to mention the mess of what is essentially hemorraghing).

Yes, uterus. You're going to be burned. And while I'm at it, you might as well let your friends The Fallopian Twins, that they're on notice too. I"m going to get those fuckers tied up in square knots hopefully at the same time I burn the shit out of the endometrium.

Yes, it's come down to either it's you or me, and I don't know about you, uterus, but I've got a lot of shit to do, and even if I didn't, I don't want to live in excessive pain for the next ten years until I stop menstruating.

Fuckyouverymuch,
Signed,
Maven

Iron

My iron levels are still on the low side due to both, the WLS and my adenomyosis. The Feosol isn't cutting it, apparently. Bariatric NP put me on Corvite. I started taking it today. Heaven help my colon. I had impaction issues w/the Feosol. I'm wondering what a heavy duty, Rx iron supplement will do to my ass.

Tablet is big enough I need to split it, and of course, only after I swallowed both halves, did I get the idea that perhaps I should try taking 1/2 a dose at a time, coincidentally w/a chewable vitamin C.

Look Away

Run down.
Depressed (physically and emotionally).


However, on an "up note," if I can even call it that, I discovered that there is actual medicinal properties to eating Indian food containing banana blossom. It actually is good for menstrual cramps and other female stuff.

No vicodin has been consumed thus far today.

The Verdict Is In

... regarding the after effects of having the fibroid or polyp removed: Onset day is a bit murky... can't tell if the flow on Thurs leading into Friday was the "spotting" or what, but yesterday evening into today... hellacious cramps. Took a vicodin in the evening yesterday and contemplating doing the same right about now.

Went for lunch w/a friend, then lost myself in thought in shopping for a few hours. Home now. Puttered with the pantry some more. Undershot how many baskets I should have bought, and need to traipse back to Chrismas Tree Shoppes again to get a few more, so I can get the pantry organized. I figure if I have baskets for my supplements, his supplements, and a few baskets which are "task specific" (in this case, baking supplies or canning supplies), it might help things have an overall asthetic of being tidy.

One thing this whole pantry organizing thing has brought to my mind, is how very much I am now a food hoarder since my surgery. I really get off on that sense of abundance, even if I'm not eating everything every second of the day. Hell, half the time when I do my "big cook day" of the week, just being around the food and smelling it cook is sufficient for me. And by the time I'm done cooking, I'm so sick of seeing and smelling what I've cooked, that I end up having some cheese and crackers and just call it a day.

I've got my "mise" for a few dishes already for me, but all I want to do right now is pop a vicodin, and wait a half hour so I can have some ice coffee.

Off to either crochet or curl up into the fetal position, I go.

Feelin' Weird

As if feeling depressed weren't enough, I have this discomfort in the lower abdomen. Can't tell if it's bowel, uterine, or related to my bypass. An uncomfortable pressure weird fullness, with occasional twinges. Weird. Noting it here so when I do my follow up, I'll have a timeline. Breathing very slow, deliberate and shallow because of the discomfort.

No vicodin was ingested today.

Not much to report at the moment.

Hurry up and wait.

Haven't weighed myself. Not sure why. Not motivated to hop on the scale and see it not change, I suppose.

Given the stress of the last two weeks, the pain of the adenomyosis, the surgery to remove the polyp, the undue drama of the Great Unfriending of 2012, and having what I consider a high speed "near miss" on the GSP yesterday (someone was changing lanes, Helen Keller style, at about 80 mph, causing me to lose control of my car, and mercifully not be injured/killed, nor injure/kill someone else). Of course, the asshole in question who caused this chaos, continued on his merry way...

And despite taking my vitamins and staying hydrated and boosting myself with extra B12, I not only feel run down, but just depressed. I don't know if it's situational, chemical, or I'm PMSing or what. But I feel horrid, feel like crying, and workplace notwithstanding, I could easily see myself sobbing at my desk.

Follow up is scheduled for 4/2; however, I might try to change it to the week before, assuming Aunt Flow is out of town by then. So I suppose by then I'll get the low down of size/location of the fibroid/polyp, find out the pathology of it; and perhaps even get a chance to discuss the weird boob twinge thing I've had for the last month or so.

I'm just spent. And tonight I feel like eating something meaty. I might run to Whole Foods for a steak and some salad from the salad bar.

Ironic Twist

So, as I'm going thru what I'm going thru, and struggling with the grief that adenomyosis can bring, existential, fertility, and survival, my mother informs me, rather matter of factly, that my sister has changed her designation in her will. Which is to say, that should something unfortunate befall my sister and brother-in-law, I will not be the person who raises my niece.

It's just a hypothetical situation. I know. A situation tethered to the earthly demise of my sister, so I can't even be pissed off about it. Hell, it's so gauche to think of it in a logical sense, "Oh damn it, I don't get custody of my hypothetically dead sister."

But still it makes me wince a little. I might not have a kid of my own, PLUS, I won't get custody of my niece.

In an ironic twist, it makes me chuckle how all this stuff seems to be inter-related.

I know that the custody designation is in response to (and quite possibly, my punishment for) my emotional and physical pulling back from ALL family, not just my sister and my niece since my dad died in 2008. I've needed that time to regroup, deal with my grief, and (hell!), deal with all the other shit in my life, physical and emotional health.

But the reality is, granted, I have pulled back; however, if I did not text my sister or email her (of which she only replies 50% of the time, IF THAT), I'd never hear from her unless she wants something (i.e. my niece is begging/selling shit for a fund raiser for one of the many groups/activities she's in). To be honest, I don't know what I have done, beyond the pull back. And no, I don't send gifts anymore unless I'm present to present the present, because I never get an acknowledgement or a thank you (so why bother?). And I never hear from my sister or my niece. I never get a birthday card. Xmas time has been fucked in the ass for me too ("oh we're only giving gifts to the KIDS now").

Furthermore, I cannot and will not tell my sister about my situation. I never hear from her, so why would I share such a personal thing? She also has an ulcer, so why add to her stress? Also, I already have doctors, I don't need her to activate her LPN Superpowers for me. I already have the best doctors I can find working on my assorted health issues. I don't need her to be a nurse. I need her to be my sister. And sadly, she just can't do that. And yet, I am acutely aware that she bitches about me, my absence, etc, yet is too cowardly to confront me about it.

So why won't I confront her? Because I'm trying to conserve my energy FOR ME. I don't have anything else to give anyone else. And if she can't be my sister, I'd gladly just continue taking silence.

Reply From NewGyno(TM)

In regards to my concerns or interest in the artery embolization etc, and inquiring about the severity of my particular case of adenomyosis:

First off…embolization is out. Conceiving after that is not recommended. Adenomyosis, like every other entity in medicine, has varying degrees of severity. Many women with it have no issues and conceive and go through life never knowing….some can have it much worse… Treatment depends of symptoms. Again, many are not treated, some need bcps, severe cases end up needing surgery…it all depends. The severity is really related to symptoms. I’d say you have a mild case. *Note: Emphasis mine.

PCOS & Adenomyosis

Going to read up as much as I can, and of course ask my ReproEndoGuy (TM) as much as I can. I wonder about what percentage of PCOS "cysters" end up with this.

In the meantime, at least I have a good starting point for info and support. A person following me on Twitter provided this link. It is useful enough for me to ask about artery embolization.

http://www.adenomyosisadviceassociation.org

And on a related note: Not only was my sister diagnosed w/PCOS years before me and never mentioned it (so that I might, yanno, get tested and TREATED for it), she also allegedly has something "endometrial" going on, and again, no mention of it. I get diagnosed, I tell everyone to raise awareness. Keeping shit to yourself when it might help others is nothing more than a tacit fuck you, you're on your own.