A #NIAW Pelvic MRI

It’s now week five of quarantine life. At least I think it’s week five: it could be week 50, or even 500, for all it feels. So I’ll count this as week five-ish. The days and weeks are all starting to blur together lately. But I don’t want to write about quarantining or the likes today; those topics are for another day.

Let’s talk instead about the fact that I bled for my entire 35-day cycle last month. Well, that’s not entirely accurate: there were those two ‘free’ days when I barely bled… But the rest of them? Total nonstop bleeding… and pain… ad nauseam.

To investigate the bleeding, Dr. Ruby sent me for another ultrasound. You might remember that in March, ultrasound showed my scary cyst from January seemed to be resolving on its own. Turns out, that cyst actually didn’t resolve . Dr. Ruby’s explanation is that my bowel was obstructing the view during the March ultrasound (huh?), which means the complex cyst was still there—and growing—but couldn’t be seen on imaging. I don’t understand the ineptitude of technician, radiologist, and even Dr. Ruby in this regard, but I’m no medical expert.

In addition to the growing complex cyst, I also had two smaller cysts that are (were?) filled with blood. Maybe those cysts explained my 35-day bleed.

Anyway, I thought it very fitting to have a pelvic MRI during National Infertility Awareness Week!

My MRI results showed several simple cysts on my ovary, plus one endometrioma (which is the complex cyst previously seen on ultrasound). The pic below is taken from my report. My problem child cyst is most likely an endometrioma and not a hemorrhagic cyst. If you’re into science-y medical things, an article I found here discusses the difference between the two types of cysts by using the T2 Dark Spot Sign as an indicator.

Now, here’s the kicker of the whole Cyst Debacle. Verbatim, Dr. Ruby’s message to me this morning was this: “There are multiple cysts on the left ovary one appears to be endometriosis vs hemorrhagic cyst the others appear simple. if you are having any pain with the cysts we can consider a progesterone shot to help resolve the simple cysts.

That is it. I am left speechless, and certainly with more questions than answers. After everything: the pain, the bleeding, multiple imaging studies, hundreds of dollars spent… I am offered a progesterone shot?????? To say I’m disappointed in that so-called response is an understatement. I’ve left a message with Dr. Ruby this morning which is laden with my many questions. Hopefully, she’ll respond well.

But is it super pessimistic for me to not have high hopes for that outcome? To expect the usual runaround: “You have endometriosis. We know nothing about it. We can do nothing about it. Here is a useless band aid for your trouble”? Is it not completely uncool that that is the norm in the medical world’s attitude toward endo?

Sorry for the vent. I realize we’re in the midst of a pandemic and the woes of endo pale in comparison.

Update to follow. ❤

Five Year Blogoversary Musings

It’s time again for my annual Blogoversary post. Five years have slipped past in the blink of an eye. It’s been my honor since 2015 to share this tiny corner of the interweb with some of the bestest women I’ve had the privilege of “meeting” in the Blog Lands—and in some cases, meeting in real life too!

How to lament this past year since the last Blogoversary? As far as The Endo Zone goes, it’s been my quietest year yet for publishing posts. Real Life got in the way, and more pressing matters unfortunately took my attention from posting. But in 2020 I’ve made a decision to post here more often, and I’m trying to make good with that commitment as best I can. Already in less than three months I’ve nearly reached my total posts from last year! My aim is to move this space away from strictly endometriosis and/or infertility as cause/effect; I’ve still been brainstorming names for a new blog but haven’t found one yet that speaks to me.

Much has changed since the Endo Zone was born five years ago, the most significant (and surprising) of which has been Jake and my decision to resolve Childless Not By Choice (CNBC). If you’ve been around here for even a little while, you’ll know that CNBC wasn’t a one-time choice which Jake and I made and then moved on from. Instead, resolving without a child still sometimes rears its head and causes us uncertainty. It’s definitely not a linear course. This is a space to write about that.

A heartfelt Thank You to everyone who’s been at this site since the beginning, and Welcome to all those who’ve joined since! I have slightly more than 200 followers and I’m grateful for every one of you.

Last, a giant frowny face to WordPress for needlessly revamping the editor and making it even harder to use than usual; writing this post was no easy feat with the new settings!

Links below to previous Blogoversary Musings:

Year Two: 2017 Blogoversary Musings

Year Three: 2018 Blogoversary Musings

Year Four: 2019 Blogoversary Musings

The Weird New Normal and Other Updates

We’ve been on lockdown here in Philly for three days now. In the two weeks preceding that, all of the usual hysteria that’s been experienced around the globe due to COVID-19 happened here as well.  Like countless others, I’ve been working from home and regarding every person I encounter with a level of suspicion and a very wide berth (six feet, to be precise). Even though I’m not usually one to ‘document’ my life online, I’m making an exception with this post.

Today I had a tele-medicine appointment with Dr. Ruby. It was my first time meeting with a doctor electronically. I’m so thankful that God has provided humans with the know-how to create technology such as tele-medicine so that such things are even possible. Anyway, I’d contacted Dr. Ruby because I got my period 13 days ago and it still hasn’t stopped. I’ve been getting kinda worried (and inconvenienced) by the constant bleeding. Dr. Ruby believes my never-ending period is related to a new thyroid medication my endocrinologist prescribed me last month. I was prescribed this medication in an attempt to corral my uncontrolled Hashimotos.  I’ll update if the plan Dr Ruby suggested today actually works. I pray that it does.

As for whether the meds worked to control my thyroid, well I’m far too wary of going to LabCorp to have blood work done to find out. Jake is a nurse and works primarily with geriatric patients.  I can’t take any risks, such as going to the lab, which could potentially endanger him and his very vulnerable patients, unless absolutely necessary. In the scheme of things, my thyroid function is apples to the oranges that is coronavirus. So for now I’ll stay put and just have to trust that my new thyroid medication is doing what it’s supposed to do. Lord willing, I can find out later whether it actually did!

I’m just gonna pause here and lament that these are such weird times we suddenly find ourselves thrust into living in: today I met with my doctor via FaceTime. Tonight my infertility support group is meeting on Zoom. Tomorrow my bimonthly counseling appointment is being held via Skype. Last Sunday we “went” to church in our living room, also via Zoom. People keep throwing the word around, but it is unprecedented indeed.

As I continued to follow my fellow CNBC friends on Instagram, I feel a bit of relief that I’m not the only one who is oddly grateful to not have children at this moment in history. My family and friends with very young children incur the added difficulty of being cooped up together 24/7 while still having to provide entertainment, schooling, discipline, etc. around the clock. This all while trying to be “at work” at the same time… That’s been tough for some of my friends and family members. While I can’t emphasize, I can certainly sympathize with that situation being a really hard, frustrating, and map-less lifestyle.

And I’m a bit ashamed at those in the infertility community who are giving parents flack for ‘complaining’ for it being difficult to have their kids home right now. Parenting is hard stuff; parenting when you’re kids are 100% always home with no means of escape must be extra, extra hard stuff. When did it become martial law that, post-infertility, no one may ever complain about kids being tough to raise? Anyway, I am just grateful for my quiet home. As an introvert, staying home doesn’t bother me in the least; I actually prefer being home.  Jake is at work a lot because nurses are needed right now, so I find myself home alone often which can be kinda lonely, but overall I’m good with it.

I’ve set up my office in a separate space in the house, which helps to differentiate being ‘at home’ verses being ‘at work.’ Since my employer is deemed a ‘life-sustaining’ / vital function, I am still blessed to have a job, unlike many of my colleagues who’ve unfortunately been laid off this week. Boss has been understanding about my reluctance to return to our physical office next week, as he plans to do. For the foreseeable future, I’ll keep working remotely, even if Boss isn’t thrilled about it. We’ll manage.

Home is now also my new gym! It’s been a huge adjustment. I’m one of those people who goes to the gym at 6:30 every morning like clockwork. Suddenly life in that respect has been turned upside down! I tore my plantar fascia (ouch. like so much ouch I can’t even begin to say…), so running—which I love to do—is out of the question for the next twelve weeks. For the duration, I am wearing a really sexy gigantic walking boot while I heal, and modifying YouTube videos in my basement workout space so I don’t turn into a ball of fatty mush. Those workouts, coupled with taking Puppy on like 8,000 walks a day, is my new fitness regime.

And hey—if you’ve read this far, then kudos to you! This has been one of my most ramble-esque blog posts ever. Blame it on being cooped up and restless. I hope all of you are staying healthy and #covidfree. Know that you, all my (in)fertility friends, remain in my prayers.

Peace. ❤

Complex-icated

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A few weeks ago Dr. Ruby sent me for ultrasound to see why my pelvic pain has gotten so bad.

Ultrasound showed a large hemorrhagic complex cyst on my left (and only) ovary. The cyst itself was about the same size as my actual ovary. Dr. Ruby thinks that a second cyst may have ruptured and spilled, and likely explains my severe pelvic pain from January.

Dr. Ruby also tested my CA-125 (ovarian cancer antigen) levels. My levels are elevated. Fortunately, they’re not as elevated as last time I had them checked. The normal range is 0 – 38; my current level is 45. My prior levels—during my 2010 and 2012 surgeries—were in the 80s and 110s, so in comparison 45 isn’t so bad. It’s out of range, but not nearly as scarily out of range. Dr. Ruby suspects that my CA-125 is elevated because of return endometriosis, and possibly because the cyst is an endometrioma.

My follow-up ultrasound on CD7 showed the cyst has reduced by 75%. Excellent news, and I’m very relieved. My first ultrasound was taken on CD27, which of course means my lining was super thick, so Dr. Ruby wanted to recheck things post-menstruation with thinner lining. We’ll recheck it a third time in a few weeks.

Even though this is good news and literal prayers were answered, a larger problem still lurks, at least in my own mind. And it’s more than simply not seeing the silver lining in the storm clouds.

Let me explain.

I’ve spent the past three weeks wrestling with the unhappy prospective of another surgery. And even though another surgery is currently tabled, it might only be temporarily tabled. So while, through God’s grace, I’ve won this battle, I’ve not won the war.

I’m no doctor, but a large complex hemorrhagic cyst leaking/bursting/draining—or whatever it’s called when cysts “go away”—means that all of its yucky endometrial contents have spilled into my pelvic cavity, right? Which can mean more endometriosis legions. Which equal more pain + adhesions + endo, which = another inevitable surgery… this disease just cycles back on itself.

So I’m grateful. But long-term I’m only cautiously optimistic.

Jake’s very first words to me when I told him about the cyst were, “If you have to have surgery to take it out, then have them take everything else out with it.”  He doesn’t like to see me in pain, and he def hates seeing endometriosis’ tendrils near-constantly affecting my quality of life. And I can’t say that I disagree with him.

This big lesson this seemingly tiny episode is teaching me is that, emotionally, I’m not ready (yet?) for hysterectomy. During the really bad moments, I beg for hysterectomy like I imagine a laboring woman begs for an epidural: anything to stop the pain that seems to have no end. But no matter how appealing it can sometimes seem, when I’m faced with the reality of choosing hysterectomy, I’m not “there” yet. In the future if I’m faced with having to make the hyster decision—unless I had loads of time to prepare beforehand—I’d probably be a total mess and would wuss out.

Hysterectomy is NOT an easy choice to make, especially when I’m still ‘technically’ in my fertile years. So yeah, it’s complicated: I’ll be wrestling with this one for awhile.

Update on complex cyst to follow.

Peace.

The Infertility Support Group for Moms

I’ve been attending an infertility support group since last spring and every woman there has kids.

It’s such a contradiction in terms that I’ve decided to leave the group.

Here’s how it started: Last May-ish I was googling IF support groups and found a newly-formed group near me that meets twice a month. I was stoked because the other (legitimate) IF support group “near” me is like 20+ miles away and just… no. I’m not making that drive, not gonna happen. So I started attending this new, closer, unofficial group.

I say ‘unofficial’ because the group isn’t on resolve.  It was started by three women who attend the same church and all discovered, simultaneously, last Mother’s Day that they each suffer/suffered from infertility. So they banded together and decided to form a support group.

There’s no format or goal or anything to the group: basically, we just meet at Starbucks or a bar or some random place and hang out. Although guideline-less, I still appreciated the heart behind the women who formed the group. The group is open to the public, but I’ve slowly come to learn that no one else in the public, except me, stuck around very long.

Here’s the problem (aside from the fact that they’re all mamas): the three core group members all knew each other beforehand, whereas I just met them. So right out the gate I’m the outsider, and I’ve sometimes felt like one, too. Of those three women: #1 has adopted two bio siblings and is also currently fostering-to-adopt a third baby; #2 also adopted two bio siblings, then went on to not only have her own baby, but also was a surrogate for her sister and essentially birthed her own niece; and #3 is currently pregnant with her third (bio) baby.

Yeah. It’s like that.

Meanwhile, I’m at group like, “My dog is pretty awesome!” (which, incidentally, he totally is), while they almost constantly talk about their kids. It’s unsettling for me, and lately I’ve been wondering why I even go to group at all. It’s not like there’s much—if any—actual infertility support happening in this infertility “support” group. I usually leave feeling worse and more even infertile than I did when I arrived.

At this point, you’re probably thinking, “Marixsa, no blog post needed: just leave already!” And you’d be correct. The only reason I’ve stayed with the group is because there’s not another group near me.  But at this point, I kind of think that no group is better than this group.

It’s not that the ladies are mean or are purposefully overindulging in kid talk in front of me (I hope). They often encourage fostering and/or adopting to me and will listen if I speak up about my struggles. But foster/adopt isn’t something Jake and I feel any proclivity toward. Nor is it a fix.

And I get that: the fact that most of the group has resolved via adoption doesn’t change their struggles with infertility. Adoption didn’t fix or cure their infertility, nor did it take away the pain of their miscarriages, etc. (really, the group should advertise itself as some kind of quasi infertility-post-adoption meeting). However, their void of being non-mamas has now been filled.

But for me, the non-mama void is still ever-present. And I’m trying so hard to move past that void, but moving “past” it is hard. Nor is moving past it linear. The road is fraught with uncertainty—and that, right there, is not only where I need an infertility support group but where I could likewise offer some [fumbled] version of support to another person. Problem is, there’s no one in group for me to offer it to.

Just as I’ve learned to disregard when people aphorize “Never give up!” when referencing infertility, I’m also learning that quitting support might just me the best support I can offer to myself.

Today I sent a text to the group leader telling her a (gentler version) of this post. I feel a bit of loss for leaving, but overall I know it’s for the best.

 

***UPDATE:**** Right before publishing this post, I checked resolve’s website, aaaand guess what? There is a BRAND NEW infertility support group that meets 10 minutes from my new home! They’re meeting next in two weeks’ time, so please say a prayer for me that this group will be better than ^^.  I love when God meets a need and opens a new door.

Twentieth Time’s The Charm?

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Last week I visited a new gyno. She was, no exaggeration, probably the twentieth OB/GYN I’ve tried out in the past 22 years. She was absolutely lovely and I think I may have finally found a good doctor for my care! I left her office breathing a massive sigh of relief that maybe—just maybe—my search is finally over.

I have always had a realllllly hard time connecting with a gyno who I’ve felt was right for me. Sometimes I’ve wondered if the problem is me, and not that most gynos are inept at actually helping to FIX my lady-parts problems. But after having connecting with fellow Endo Warriors online over the years, I’ve learned that—amid the rare exception—most gynos really are just.that.bad when it comes to women with endo + infertility + unexplained pain. Most of them don’t want to investigate finding the answers: they usually recommend hysterectomy or that I see yet another RE, then instruct me to return in a year for my annual exam. Can anyone else relate to this?

There was that one time, nearly a decade ago, when I finally found The One of all gynos thus-far. But then I moved a thousand miles away from him, and had to restart the uphill process of finding a new match. In the seven years since moving away from The One, I’ve left every new-gyno appointment feeling unheard, feeling unhelped, and feeling defeated. Oh yeah: and usually in tears.

Such was the case last summer after leaving gyno # 19’s office. Upon a friend’s advice, I had visited this particular gyno and had my annual exam. As I exited his office—holding back tears of frustration and feeling totally defeated—I passed by a sign for the office of a female gyno practitioner named Dr. Ruby* who specializes in “natural women’s care.” I’d never heard of her before.

Intrigued, I researched Dr. Ruby and, to my delighted surprise, liked what I saw. It took me months to make an appointment with her though: visiting a new gyno is fun like walking on hot coals is fun, amiright? Finally, following my newest (and ongoing…) bout of mystery pelvic pain in mid-January, Jake prompted me to make an appointment with Dr. Ruby.

Dr. Ruby is different from any gyno I’ve ever treated with. She unashamedly incorporates her Christian faith into her practice of medicine, and, since she runs her own practice, no one can tell her not to. Never before has a doctor—especially a gyno—told me emphatically that my miscarried babies and failed-to-survive embryos were souls created in the image of God, not just blobs of cells. Never before has a doctor suggested I honor the anniversaries of their passings, and to always answer that I am a mama when someone asks me The Question (though I’m still kind of uncomfortable doing that TBH). It was refreshing, and I just may have cried a little lot when she said those things to me. 

Dr. Ruby was compassionate, listened to my issues, and took time to get to know me as a person before seeing me as merely another patient in her busy day. Basically, I felt heard. Humanized. Not hopeless, but encouraged.

I’m currently working with Dr. Ruby to figure out the source of my new mystery pains. She suspects I had a cyst (or cysts, plural) burst, and that the fluid/blood from it/them is pooling in my lower pelvic area, causing me this new pain. I should know more answers next week after ultrasound. She didn’t push me toward hysterectomy, which is a first for me when visiting the gyno. She also encouraged me to keep TTC. I didn’t discuss with her that I’m letting that part of my life go, because that’s just way too complicated to explain…

Here’s to hoping Dr. Ruby is The One!

 

*pseudonym

 

2020 So Far: A New Direction

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Courtesy of Pixabay

For months now, I’ve intended on joining the army of bloggers who faithfully post each week. It was even one of my 2020 resolutions!  But, one month into the new year, I haven’t been able to make it happen.

Until this week.

That’s my goal this year: to post weekly.

My blog has been dying a slow death the past couple of years, despite my earnest intentions to keep it updated. I’ve never been a huge social media poster to begin with (though I do stalk it on the regular). This blog feels different than social media in a way, but I’m not sure if it is indeed different. Throughout the course of my days something will often happen that causes me to think, “I should blog about that!”… but then I never do. Maybe it’s the effort required, since I’m not quickly posting a pic with a cute caption and moving along like most social media. Blogs take more thought, more intention, more planning. More work.

Through a long—and still continuing—process, I have moved on from the Trying to Conceive world to the Childless Not by Choice world. I’m still new to CNBC, and don’t yet have both feet firmly planted in it because I harbor some reluctance to completely let go of TTC. Is that due to stubbornness? Fear? Worry that I’ve given up too soon? Maybe it’s all three.  From what I can tell so far, the TTC world is a kind of subset of the general (fertile-aged) society. The CNBC world is a subset of that subset, and its defining lines are very blurry.

Since all of that is going on in my life, I’ll be making some changes to this blog in the coming months. So stay tuned! Among other things, I want to move to a new paid URL without losing content or subscribers, and also change the blog’s name. I plan to do more posting on exploring life CNBC and less with TTC, if anything at all. As for endometriosis, well I think I’ll always be blogging about that, because it’s the foundation of how I landed here in the first place! I do have a few upcoming posts in mind, so please, everyone, hold me to it to post weekly.

Until next time,

Peace. ❤