Endometriosis Awareness Month

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How has half of March slipped past without my even mentioning that it’s Endometriosis Awareness Month?! I know, I know: Endometriosis Awareness Week has long since passed us by with no mention by yours truly… what can I say? I’m kind of a slacker. But surely I won’t let a whole month go by without mentioning it!

Since there’s still a decent amount of March left, check out endometriosis.org’s list of worldwide endo events taking place this month by clicking here. Those of you in other countries can click to find an upcoming event near you (or hopefully near you!). I have no affiliation with endometriosis.org; it’s just a website that I think is very informative about endometriosis.

You won’t find any lists of endo facts or stats on my blog: I leave that task to more qualified sources, like the site I just mentioned. In fact, I don’t really talk much about endo on The Endo Zone… shame on me! This blog is more about how endometriosis has affected my fertility and follows my quest to not allow this disease to rob me of having children. I’m not an endo proponent or advocate by any means. Instead, what you will find here is one woman’s account of living with endometriosis and, in many ways, living around endometriosis.

But since it is Endometriosis Awareness Month and since this blog is called The Endo Zone, I thought I’d take a minute to tell my readers how endometriosis has affected my life. So here we go!

Topping the list would be my endo surgeries, but they only happen every few years; that still leaves my day-to-day life with endometriosis. In that sense, I’m one of the fortunate ones. It’s so true that one’s stage of endometriosis doesn’t correlate to her pain level: for instance, I have severe stage 4 endo. Yet I don’t suffer from the daily debilitating pain that another endo sister with stage 1 or 2 might live with. Instead, endo affects my daily life in the form of heavy menstrual cramps, mega big period clots, and daily ovarian pain. Oh, and 60 months’ worth of infertility… lest I forget. Blocked fallopian tubes, adhesions, and adenmyosis are all parts of my endo experience, but I can’t actually feel those things. So while they might affect my life, if it weren’t for surgeries then I’d probably never even know these things existed in my body.

And that’s what endo is: an invisible illness. A real predator, but an unseen one. It lurks and steals, and is—incredulously enough—often misdiagnosed.

While endo awareness and research are definitely important, I don’t define myself by having endometriosis. That’s part of the reason I’ve never before posted about Endo Awareness Month. True, I suffer from endometriosis. But it’s such a small part of who I am.  I believe that God is a Big God. So I try not to get caught up in the diagnosis and, instead, I like to focus on His promises of restoration and healing. Now I don’t discredit all the hard work and effort that others have made in getting this disease onto people’s radar… And I hope that I don’t come across as unrelatable… It’s just that I believe this diagnosis is something which, in the long run, will not conquer me.

Or any of us.


Finally, I can’t finish this post without mentioning my BFF of the blogging world and fellow endo warrior, the fabulous Lisa of Bloomin’ Uterus. If you have even a speck of endometriosis in your body and aren’t already following Lisa’s site, run—don’t walk—on over there by clicking here.

In keeping to my promise to Lisa, here I am wearing my Bloomin’ Uterus t-shirt in honor of Endometriosis Awareness Month.

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The pic
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the words

Since I didn’t have anyone to take my pic, I had to use the bathroom mirror and the writing is backward! It says, “Endometriosis Awareness and Support,” followed by the site name. Good shirt for a good cause!

Happy Endometriosis Awareness Month to you all!

 

Conceiving to Conceive

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It’s so strange to be having a normal cycle: I almost don’t know what to do with myself. What is this for-real cycle that I seem to be in? The real test will be when (well, if) I ovulate this cycle—which is scheduled to happen this weekend—because ovulation has been so hit or miss for me this past year. What else is a girl to do, except to order another 50-pack of cheap Wondfo OPKs and continue temping for a temperature spike? The concept of no intermenstrual bleeding, on-time ovulation (without weird luteal phase lengths), and the same 20% chance of pregnancy as the Fertiles have is kind of mind-blowing. And exciting!

My first period post-op arrived right on time, and I ended my surgery cycle on a much-needed positive note of a normal 27-day cycle. My period itself was not so normal, as it came in fits and starts and lasted less than three days. I experienced far less cramping than usual (hooray!); in its place though I had scary insane uterine pains. It was as if someone were mercilessly jabbing at my uterus with an ice-pick and it lasted all day long for several days. The ice-pick stabs began to retreat on cycle day 3 and I haven’t had to take any narcotic pain meds since then.

As for recovery, all continues to be well (stabbing uterine pains aside). I ended up being allergic to the surgical glue which was used to close my incisions.  I’m basically allergic to nothing, so I was totally not expecting this. The allergic reaction is ongoing and unrelenting: think raised, angry red bumps, swollen skin, and ceaseless itching. Hydrocortisone cream has been my newest BFF; we go everywhere together these days. Although I’ve removed all of the surgical glue, only the passage of time will clear up the allergic reaction… which cannot happen fast enough.

So yes, it’s an unfamiliar feeling—in a good way!—to be entering into a cycle right now knowing that I could conceive this month as a fact. Not as a slim chance or as a shot in a dark: an actual, bona fide chance! No more ambiguity, no more wondering. No more trying to ignore the deep down sinking feeling that something, somewhere is physically very wrong and my efforts are probably for naught. I’m still adjusting to the idea that my pregnancy chances are now normal… It’s been a long time coming.

Normal chances or not, a pregnancy now would be still a miracle of sorts in my book, since there remains the matter of my somewhat inhospitable uterus for an embryo to contend with: (1) I have a moderately arcuate uterus, which increases the risk of a second trimester miscarriage; and (2) Dr. Din is pretty positive that I have adenmyosis going on in my uterus, in addition to the endometriosis outside of my uterus (I’m not sure what this means for me going forward?). Oh yeah: and the risk for ectopic pregnancy is much higher following procedures that unblock the fallopian tubes, so I’m not yet out of the woods. I don’t mean this to sound pessimistic. These are just real hurdles I may encounter, and I have to be aware of them, both feet in.

In the meantime, I’m back on the bandwagon full steam ahead:

  • Stocked up on Brazil nuts… a whole 2 pounds of them
  • Daily red raspberry leaf tea (during follicular phase only)
  • Basal body temping
  • Timed intercourse
  • Ovulation prediction strips
  • Pre-Seed lubricant
  • And so on and so forth

I’ve also added these guys to my already extensive supplement list (prenatal vitamins, Vitamin D, Vitamin C/Ester C, CoQ10, DHEA, L-Arginine, and baby aspirin), which is probably a post for another day:

  • Serrapeptase
  • Mineral supplement
  • Migravent (unrelated to fertility; this is a mineral supplement that’s supposed to help reduce the frequency of migraines. I average 1 migraine every 2 weeks, which usually puts me out of commission for an average of three days. We’ll see how this does…)

 

It feels good to feel normal. I’ll take it for as long as it lasts.

Peace.

Surgery Recap: Part 2 of 2

The other day I posted here about my experience with my most recent surgery for endometriosis. Here’s the second half of how things went:

For background, I was diagnosed with severe stage four endometriosis during my two surgeries that preceded this month’s surgery (these were surgeries # 3 and 4). In both of those prior surgeries, the operating doctors each separately told me that I had the worse case of endo they’d ever seen. That’s not exactly bragging rights… who wants to hear that they have the worst case of [fill-in-the-blank medical thing]? During surgery #3 my severe endo, along with several chocolate cysts, were all removed. Thirteen months later, during surgery #4, all the endo had returned, and then some. Organs that weren’t even adjacent to one another were adhered together. Bad stuff.

Surgery #4 took place five years ago, which is the longest I’ve gone between surgeries. Since then, I have been TTC and have experienced near-constant ovary pain. Jake and I have not achieved any [natural] pregnancies in the five and a half years that we’ve been trying for a baby, nor has my ovarian pain ceased in that time. Then, for several months in 2016, I was having unexplained intermenstrual bleeding. Sex has also been quite painful for me these last few months, mainly around my cervix.


This time around, during surgery #5, Dr. Din and I were prepared to find lots of endometrial implants (i.e. endometriosis), some burst cysts, multiple adhesions, and maybe even some uterine polyps or fibroids thrown in for good measure that might explain my mystery bleeding. But not so!

Here’s what Dr. Din did NOT find:

  • No burst (or whole) cysts
  • No fibroids
  • No polyps
  • No endometrial implants

Take a look at that last one again: no endometrial implants. That means I had NO ENDOMETRIOSIS!!!!!!!!!!!!! None. Dr. Din said that possibly there’s some microscopic endometriosis going on, but nothing severe enough that it’s visible.

How does one go from severe stage four, rapidly recurring endometriosis to no endometriosis? There’s just not an explanation. The endo should’ve returned with a vengeance in these five years, just like it returned with a vengeance in the thirteen months between surgeries #3 and #4. My only explanation is prayer. I cannot be convinced otherwise. I believe that God has kept my endometriosis from returning, and I am so very thankful.

Here’s what Dr. Din did find:

  • Pelvic Adhesive Disease: Adhesions had stuck my colon to my uterus. The colo-rectal surgeon who was en suite during my procedure removed these adhesions. Dr  Din explained that my pain during sex was as follows: Penetration was hitting my cervix, which was then pushing on the adhesions, which were then pushing against my uterus and colon, causing a big messy ball of pain. Yikes! This also explains why I’ve had painful bowel movements for, like, a year.
  • Ovarian Adhesions:  My ovary was encased on all sides by adhesions. Dr. Din described it as being wrapped in layers of Saran wrap. These were all removed.
  • Fallopian Tube Blockage: Here’s the biggie: My fallopian tube (I only have one tube and one ovary) was completely blocked by adhesions where the tube meets my ovary (distal); it was not blocked where the tube meets my uterus (proximal). This explains why I haven’t gotten pregnant: my body was literally unable to become pregnant. Although I’ve been somewhat regularly ovulating, the egg couldn’t penetrate through the dense adhesions. Meaning the egg couldn’t even get into my fallopian tube for a chance at fertilization. This was a total surprise, and there’s no telling how long it’s been blocked. Dr. Din used a procedure called chromotubation during my surgery—which is like an HSG, only better—to verify that I have no further blockages. My 2015 HSG showed that my tube was clear, but Dr. Din chalked that up to a false positive. I’m not so sure about that, and plan to investigate it further.

At least as of this moment, I am fully fertile! That is what I choose to focus on. There is absolutely no reason why I cannot get pregnant on my own for the time being. Yes, there is a very distinct medical possibility that the adhesions/blockages will return in time. Will it be a few months? or a year? No telling. Removal of distal fallopian tube blockage unfortunately has a pretty poor success rate when it comes to keeping the tube open in the long run. But I’m believing for the best; God is on my side! And in the meantime, I’m studying up on different methods and success rates of FT blockage removal.

Besides, it’s not like I can’t have another surgery in the future. In all seriousness. Part of me has already begun prepping for that possibility. I will do whatever it takes to keep my remaining reproductive organs inside my body where they belong.


As far as recovery goes, I have no complaints. I had surgery on a Wednesday and went back to work on Monday. The five days in between I took it very easy.

Pain has been minimal. Sometimes I feel a deep, organ-y pain in my uterus and tube that no medication can touch. And my ovary still hurts exactly like it did before; I’m hoping that will go away once I’ve healed more.

I ended up with four incisions instead of the three that Dr. Din promised; three of these incisions were made over my existing scars, and the fourth is new. The new incision is above where my belly button used to be. Dr. Din took a peek under the hood at my umbilical area and reported back to me that the umbilical mesh which I had installed during my 2008 surgery (surgery #2) is holding up well. I’ve been having umbilical pain the past few days—probably from that area being messed with—but it’s quieting down now. One of my incisions is a bit weepy and sometimes bleeds, so I’ve been keeping it covered lately. Otherwise, all’s been well.

Here’s some pics of the progress I’ve made, from days 1 – 6:

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Oh, and I finally pooped today! That only took a week. Ugh. Surgery really backs up the pipes. It still hurts some to go, but that’s because human colons don’t much enjoy being handled and prodded. My pooping pain shouldn’t last long. Aren’t you so pleased that you read down this far?! If WordPress had emojis, I’d absolutely insert a poop emoji right about now.

On surgery day I forgot to remind Dr. Din to remove the epidermal inclusion cysts on one of my scars. Grrrr… That might be something a dermatologist can take care of for me in the future, so no real worries.


My post-op appointment isn’t for another six days. Hopefully I’ll take home some gory surgical pics from the appointment to share with you all.

Peace.

 

 

 

 

Operation: Operation = Success!

Just a really quick update for now, since my typing skills are currently crap (hello, pain meds!) and it’s hard to keep coherent thoughts in order.

I had my laparoscopy/D&C/hysteroscopy/biopsy yesterday. Everything went very, very well. Like, stellar. Superb. Dr. Din found exactly what we’d expected to find, and then some that we weren’t expecting.

I’ll write an actual post soon, when I’m not loaded on pain killers and after the anesthesia’s completely worn off.

In the meantime I’m recovering at home, where Jake’s been taking excellent care of me. Unfortunately, he’s in nursing clinical rotation right now and can’t take any time off during the day to stay with me. My sister is with me today instead to help me out. Our house has loads of stairs and I can’t manage them or care for the pets in my current state, so I’m very grateful for her being here with me.

 

Here’s where I’m at right now. Don’t worry: it looks worse than it actually feels!

Thank you all for your prayers and well wishes. By far this has been my best surgery yet, and I’m so thankful to God for showing up in a big way.

Update to follow.

 

 

 

 

Pre-Op: Check (plus a Blogging Milestone)

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This morning I went to the hospital for my pre-op formalities for my upcoming laparoscopy. It was all very routine: blood work drawn, insurance paperwork reviewed and copay for the surgery itself paid, plus a brief meeting with a nurse to go over the other detail that I won’t bore you with.

The first phlebotomist who drew my blood did a terrible job! She stuck me twice, both times with no luck. She was fumbling around for so long that my arm was turning purple from the tourniquet. Now I’m no newbie to having blood drawn and it normally doesn’t faze me, but I found myself getting frustrated with her. Fortunately, a more experienced phlebotomist stepped in and saved the day by finishing the job! My arm is quite sore from the first phlebotomist’s missteps, but I figured no biggie. But then the hospital called me two hours after I’d left to let me know they’d “forgotten” to draw an extra vial of blood that was needed, and would I mind coming back in for another “quick draw” (which is an hour drive each way for me)? Yes, I do mind! But I’ve little choice in the matter. So back I go tomorrow! Hmmph.

Only 6 more days until surgery day! *Gulp.* My nerves are starting to amp up a bit… Not a lot, just the usual amount of butterflies that happen when reality starts to sink in and time draws closer to an event.

Here’s what I’m not looking forward to:

  • Anesthesia. I’m just not a fan of those moments right before going under: The cold metal table beneath my thin hospital gown. Staring up at the bright, spaceship-like lights of a sterile operating room. The deep burn of the anesthesia as it courses through my veins. But it’ll be okay in the end. Because God’s got this! Couldn’t be in better hands than His!
  • The initial wake up. The pain that strikes when the nurses awaken me from a surgery is like nothing else I know to describe. It starts as a dim awareness of just having had surgery, followed by nervousness that the doc had to slice me open after all, then concludes with the actual surgical site pain itself and intense craving for ice chips.
  • IV. Okay, maybe this sounds crazy, but in my opinion, the IV that the nurse oh-so-sadistically plunges into my hand pre-surgery hurts almost as much as the surgery itself! I plan to ask that my IV be inserted into my arm instead. I had an arm IV during my 2012 surgery (after three—yes three—failed attempts into my hand. Oy.) and it was so much comfier! Want proof? This is what my hand looked like a full week after the IV was removed from my hand following my 2015 egg retrieval. It also took that nurse multiple attempts to correctly insert the huge, scary needle into my hand, and each merciless jab of her needle had me writhing in pain:
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Ouch!

What I am looking forward to:

  • Pain relief (well, after I’ve healed from the surgery pain!) from years of near-constant ovarian and uterine pain. Goodbye, relentless pain and damaging adhesions. Time to go away. And stay away!
  • A restored fertility window of six months to a year, which gives me the same chances of conception as any woman my age who doesn’t have endometriosis. Yippee!
  • The end of intermenstrual bleeds. Umm, yeah. Won’t miss those.

 

Finally, I got a happy little notice from WordPress last week that The Endo Zone has reached 100 followers! (And, since then, up to 103.) A huge shout out and ginormous Thank You to all 103 of you lovely, awesome people for following along! Much love <3.

(abdominal) Battle Scars

Dermoid cysts. Ovary removal. Chocolate cysts. Complex cysts. Abdominal hernias. Abdominal keloids. Laparotomies. Laparoscopies.

These are my history.

And this is what a history like mine (well, really mine, because these are pics of my actual abs) looks like:

abs

Not pictured: my seven laparoscopy scars (bad lighting) and only a partial picture on the left of my low transverse incision (6-inch horizontal cut, which is the same as a C-section incision).

I’m quite used to the appearance of my abdomen, even though I realize that it doesn’t look normal. As a caveat, I recently lost 18 pounds, so I’m not actually not “used” to right now, since I’m still relishing just being able to fit back into my size 8 jeans! Sorry, just had to throw that in there, as I’m thrilled to be only eight pounds away from my goal weight! Hooray:)

My original scar—which is the vertical one extending from what was once my belly button—became infected post-surgery back in 2004. Like, bad infected. Think smelly pus, antibiotics, and frequent bandage changes. Ick. The result of that infection is that the bottom of that scar is now permanently indented like a miniature frowning face. During my 2012 surgery, my surgeon/RE attempted to fix the scar site, but only so much could be done. It seems I’m stuck with the frowny face for the time being.

My low transverse scar also didn’t heal correctly. This is what I’ve asked Dr. Din to fix during my upcoming surgery:

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See those little black dots? They lie on my incision site and are buried into the skin. After examining them, Dr. Din told me they are a type of surface cyst known as epidermal inclusion cysts. Epidermal inclusion cysts are not painful or dangerous in any way. But mine bother me simply because I’m a picker, and it takes a lot of restraint for me to not pick them out of my skin. Gross, huh? For that reason alone I want them out. They’re a nuisance. It will be nice to see them gone.

As for my upcoming surgery, it will change my scar landscape like this:

beforeafter

Basically, I’m only adding one new incision. The bottom two blue circles are where Dr. Din will go in with his laparoscope over top of my existing scars.

Here’s some tips I’ve picked up when it comes to abdominal surgical scars:

  • Drug store creams meant to reduce scar visibility, such as Mederma, don’t work. Seriously. Save your money. They don’t do a thing, and are very expensive for the amount of actual product that comes in the tube. Plus, who has time to rub ointments made of questionable chemicals onto their skin thrice daily?!
  • Rest! Especially sleep! Even if you feel ready to be up and running a few days post-op, staying rested anyway will help scar healing. Our skin repairs itself while we sleep, so getting lots and lots (and lots…) of sleep will promote quicker healing.
  • Do.Not.Pick! Scabs. Loose hanging sutures. Crust. Blood. Whatever it is, don’t pick it. It doesn’t help scars heal and can lead to…
  • infection. See your doc at the first sign of scar infection. Don’t wait like I did.
  • In the meantime for infection, hydrogen peroxide is your new BFF.
  • Keep your surgical area very clean with gentle (geeeeeeentle) washing and frequent bandage changes.
  • Eventually you may be tempted to allow the skin under the incision site to “breathe,” but resist! If the scar is in a place where clothing will rub against it (like your abdomen), uncovering it will only serve to irritate the surgical site. Keep that bad boy covered up until it’s healed.

There you have it. I hope this helps someone facing an abdominal surgery in the future.

And if not, well, you got some stellar views of why you don’t want to have endometriosis.

 

Would You Like a Hysteroscopy With That?

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Not having to be conscious during unpleasant medical procedures makes me deliciously happy. Why, yes, I would in fact enjoy a nice dose of anesthesia while having my lady bits poked and prodded with frightening medical instruments, thankyouverymuch! So, in that sense, it’s a dream come true for my pain threshold. Confused? Read on: this is a quicky post.

I don’t actually expect my readers of this lil’ blog (all 98 of you awesome people…still shocked that nearly 100 people find this stuff remotely interesting. Mwuah!) to remember what I’m talking about. I’m kind of an infrequent blogger, although one my new year’s resolutions is to fix that.

So, quick recap: I was supposed to have a combination hysteroscopy/D&C/uterine biopsy with my RE, Dr. C, earlier this month to investigate my last six months of continuous unexplained bleeding. After that procedure, I was supposed to have a laparoscopy cleanup surgery for endometriosis with my other doctor, Dr. Din, in early February. Pleasant ways to start off a new year, eh?  j/k. I’m actually grateful to be in the hands of such good doctors and to have God’s blessings of finances to pay for this medical care.

After I’d already scheduled my hysteroscopy/D&C/biopsy with his clinic, Dr. C suggested that, instead, Dr. Din could do these procedures while he was already operating on me… Which came down to a real “duh” moment for me: Why would I want to have two unpleasant procedures spaced out over the course of a month when I could just have them both done at once (and—bonus— while not having to feel the actual procedures while they were happening!)?

I saw Dr. Din again last week. He was extremely cool about adding these extras to my surgery.

We also scheduled my surgery while I was at his office. I picked the first available date. It all goes down on Wednesday, February 1, 2017:

  • Laparoscopy for endometriosis removal. This includes checking my bowels, abdomen, uterus, ovary, fallopian tube, cervix, pelvic cavity, and bladder for endo and/or adhesions.
  • Hysteropscopy to see why the heck I keep on bleeding and bleeding (including as I type this on cycle day 24) like a crazy woman between periods.
  • D&C to empty out whatever mystery intruders might have taken up residency in my uterus, possibly causing the bleeding.
  • Uterine biopsy to make sure nothing more sinister is lurking in my cells.
  • Correction of one of my previous surgical scars (post to follow) that looks….well…not like it should.

I’m pretty chill about the surgery itself. This is not my first rodeo, so I’m fully aware of what to expect afterward.

It seems like I’ve been writing on this blog for months now about having another surgery. Literally, months. You must all be bored to tears reading about something that never seems to actually happen! It’s a great feeling to finally have a set date, rather than just a looming possibility hanging in perpetuity in the general future.

Next up: all about surgical scars. I promise it will be nice and gory.

Peace. 🙂