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. ❤

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.

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. ❤

Pre-op Festivities

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In keeping with my tradition of being a Bad Blogger, I never did blog my promised update for surgery #6.  Oops.  I’ve been meaning to update here for awhile, but: life.  You know how it is.

My next surgery is set for March 12.  Four-plus weeks sounds like a long time, but I’m sure it’ll whiz by.  My pain level and symptoms from endo have amped up during the last few months, so I’m really hoping that after this surgery will provide much-needed relief.

Surgery will be laparoscopy accompanied by D&C, hysteroscopy, and chromtubation.  Dr. Lee is also going to cauterize my cervix (again) in an attempt to stop my intermenstrual bleeding. I do not have high hopes that cauterization will work this time, because it did nothing to stop or even slow my bleeding last time. Time will tell though, and I’d be relieved to be wrong. A colo-rectal surgeon will assist Dr. Lee, if needed. I really hope s/he is not needed. Recovering from partial bowel resection is no joke, and not something I wish to repeat, like, EVER.

Pre-op this time around is pretty breezy: I’ll have some blood work done—including an updated AMH, just for kicks—and the day before surgery I’ll do a bowel prep. Bowel preps are some nasty business. This will be my third bowel prep, and I don’t expect it to be any funner than the other two were (which were so unfun I can’t even say …). Even so, I don’t have much in the way of pre-op testing, which I’m pleased about.

Dr. Lee suspects that I have endo either on my urethra or attached to one of the nerves that runs near it in my groin area. Lately I’ve been suffering from weird pubic/groin/whatever pain that shoots through my body and causes abdominal spasms. And I mean spasms, like spasm spasms, where my whole body jerks uncontrollably for minutes on end. It has had Jake and I completely freaked out, but according to Dr. Lee, patients with severe endo often have it on their urethra or nearby nerves, so that was (sort of?) reassuring.

In addition, I’ve been having ongoing stabbing uterine pain throughout my whole cycle that jars me and doubles me over. Clearly, something bad is going on in my uterus. My pelvic MRI didn’t show much, but in my opinion it was kind of a waste, because what can MRI really show when it comes to endometriosis?  I’m still not clear why Dr. Lee orderd my MRI in the first place, but, hey, I’m not the doctor here.

Otherwise, I’m prepared for my next surgery.  I fully know what to expect, how to prepare, and what recovery is like, so I feel little-to-no nerves in that department. I’m just glad it’s scheduled and am looking forward to maybe having relief this time around.

Peace.

 

 

 

Upcoming Surgery #6

Hello, all—if anyone’s still out there! My blogging has been slowly, s-l-o-w-l-y crawling toward the point of nonexistence, and I’m so sorry for being such a terrible blogger! But, life happens.

Alas, here I am. Still sometimes blogging and always still walking among the infertility trenches. But I’m beginning to climb out: I see a definite end in sight—even if that end involves bidding adieu my unproductive reproductive parts.

Blogging

In big news, part of my blogging absence is because Jake and I bought a house! Long story short, we bought  a townhouse, moved to the burbs, and are currently adjusting to the massive shock of our lives being completely uprooted.

The other reason for my blogging absence is because fertility/infertility hasn’t been much on my radar. For awhile I believe infertility became an idol in my life. It was all-consuming. As time passes, it slips further and further down my Top Ten list. Lately, at best I’m halfway interested in infertility’s role in my life. Mostly, I’m trying to move away from it, rather than digging in deeper. I want to move on.

Endometriosis Surgery

Back in October while scouring the internet for an endo specialist, I found a contender, right in my own backyard! Jake and I had a surgery consult with the doc, Dr. Lee, last week. Dr. Lee is an endometriosis wizard (wizardess?) and I think I’ll be in good hands with her for an excision surgery. She’s head of gynecology at a hospital in the city and know a lot about endo. Despite that her beside manner struck me as clinical and slightly cold, I still liked her because she plans to do a thorough endo cleanup on me.

Dr. Lee’s surgical plan is more involved than my last cleanup. Because I had a partial bowel resection during one of my prior endo surgeries, I have to meet with a colo-rectal surgeon. A pre-op bowel prep will also be involved (yech). Next week I’m having a pre-op pelvic MRI, which Dr. Lee also ordered. Then some other x-ray or specialist or… something… is involved. I basically forgot at this point what she was saying. I got hung up on the whole, “It’ll be a big surgery” part, and the rest was kind of a haze. There’s also a good chance I’ll spend a night or two in the hospital if my colon is involved again.

Surgery will be excision of endometriosis, removal of adhesions and any cysts, and cauterizing my cervix (again…) to try stopping its endless bleeding. Unlike my last two surgeries, this won’t be a daVinci robotic surgery.

Hysterectomy

Like every doctor before her, Dr. Lee reviewed my previous surgical reports and was all gloom-and-doom about my prospects for fertility and for long-term endo relief. She kept emphasizing my need to have a hysterectomy, and for the first time in many years I actually heard her out about it. Normally I tune out the docs when they start yammering on about the virtues of hysterectomy (although never the downsides… hmm), but I’m starting to wonder if maybe—just maybe—the docs are right.

It mostly comes down to quality of life: Do I want to keep a modicum of fertility, but live with ceaseless pain and bleeding? Or do I want to say goodbye to that sliver of hope/fertility, but finally have pain relief (and, dare I say, closure)?

I’ve reached a point where I can’t 100% confidently say that I want a baby badly enough to continue suffering physically and emotionally with pain from endo, pain and bleeding from a super-friable and inflamed cervix, pain from fibroids, endless ovary pain, pain from breast cysts (yeah, that’s a new thing…), painful intercourse, mega monster incapacitating cramps, and the icing on the cake: infertility. I just want it all gone… even if that means I can never be a mama. It’s a bitter pill to swallow. We’re praying for God’s leading on this. For now, I wait quietly.