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

 

“There’s Nothing Wrong”

I hope you all had a wonderful summer.  Although I took a blog break, I’ve still been stalking everyone else’s blogs this summer and commenting here and there. I guess this post means that I’m back… for now! 

Although I can point to a reason [endometriosis] for my thus-far lack of babies, my unexplained non-period bleeding persists. I’ve been blogging consistently about intermenstrual bleeding for two years now.  I know you’re all bored stiff by it.  So am I. I’ve visited umpteen docs in that time, none any better than the other, who’ve performed procedures (cauterization), run tests (biopsy), and cut me open (laparoscopy) to try fixing the issue.

No-go.  Still, I bleed.  Like clockwork, each doc unhelpfully informs me that, “It’s just your hormones,” “Nothing can be done,”  or, my personal favorite, “You’ll have to find a way to learn to live with it” (like, what do you think I’ve been doing these past two years?!).  None of these docs actually test my hormones, mind you.  They just give me the same old canned answers out of, I don’t know what…  noncommital laziness, perhaps?

This summer I visited my GP because my pelvic pain has been worsening and the bleeding is taking over my life.  My GP (Dr. Cooper for today’s pseudonym) is a totally awesome chick, and visiting her is like chatting with a girlfriend who also just happens to be a super smart doctor.  I had high hopes she could help.

After patiently listening to my side of things and asking well-thought questions, Dr. Cooper developed an attack plan: I’d have a much-needed updated pelvic ultrasound and my hormones thoroughly tested. After reviewing my results and some careful cogitation, she’d refer me to another doc worth their salt.  I liked her plan: simple, yet effective.  The prospect of answers and relief was very enticing.

Other than showing that I have a uterine fibroid, my ultrasound was unremarkable. Same with my  blood work. All was in order, save that my Sex Hormone Binding Globulin Serum (or “Sex Goblin” as Jake and I like to call it) was off the charts because of my still-uncontrolled thyroid.  Much as I’d like to blame him, my misbehaving Sex Goblin isn’t responsible for all this bleeding and pain.

To my dismay, Dr. Cooper referred me to Dr. B.  Yes, the very same Dr. B. whom I long-ago fired because he had the personality of a potato.  Aaaand the same Dr. B who also no longer practices medicine; I guess Dr. Cooper missed that part of the story.  Another dead end.

Still, I bleed.  Unresolved.  It’s slowly driving me crazy.  And isn’t that the worst way to go?

White. flag. waved.