The Next Chapter

Hi guys! I’ve been meaning to post for the last… erm… ten months…. but life got away from me. I even began working on a whole new blog to transition this one to, but haven’t quite gotten around to finishing it. Given my blogging history, it will probably languish in Unpublished Land indefinitely.

Many of you know that after infertility, I found myself in the childless-not-by-choice community. I’ve been hanging out in that world for the last couple of years, building new friendships and slowly adjusting to the likely permanency of my reproductive reality. During this time, I’ve continued my endless quest to find an endo specialist and have seen numerous doctors, all resulting in disappointment.

My endometriosis is still really bad. Severe stage 4— lots of pain, tons of ongoing symptoms, blah blah blah. Sometime in early 2021 I decided that enough is enough: I am weary of living with constant pain and missing out on countless events because of endo issues. And even though I know it’s not a cure (please, no lectures), I began seriously considering hysterectomy.

Docs have pushing me for more than a decade to have a hysterectomy, but I always adamantly refused. Instead, I tried anything and everything, prescription and natural, psychological and physical, to heal/improve my endo and increase my odds of conception. And you know what? None of it worked. It was like spitting in the ocean. After a very long road, I’ve accepted things and, frankly, I am desperate for my painful reproductive organs to be OUT of my body, once and for all.

The first step in my journey to hysterectomy led me to New York City to meet with the renowned (or should I say infamous?) Dr. Seckin. Dr. Seckin has been on my radar for a very long time, but financial and insurance reasons kept me from making a move. I finally took the plunge, and Jake and I took a day trip on a sunny spring day in March of this year to meet with him.

After a long and somewhat thorough consult, Dr. Seckin diagnosed me with a partially frozen pelvis, in addition to severe stage 4 endo. I had a fancy pelvic MRI done while I was in the city which showed adhesions everywhere in my pelvic area and numerous chocolate cysts and other cysts. Dr. Seckin agreed that excision surgery plus a complete hysterectomy was in order; I was relieved and anxious to move forward.

Just when I was ready to schedule surgery, Dr. Seckin’s office slipped me the news that it would cost me $15,000, not covered by insurance. I’d already spent more than a grand out of pocket. Where would I find $15k?? I considered every possibility before reluctantly (and I should add resentfully) deciding to scrap Dr. Seckin. It was a tough decision, and I went through several dark weeks of hopelessness and disappointment while wrestling through it.

I definitely would NOT recommend Dr. Seckin to anyone unless you’re loaded with cash and prepared to make lots of trips to NYC. I felt cheated by him. I believe he preys upon desperate women like me in order to line his pockets. The entire experience was very upsetting and I wouldn’t want anyone else to go through this same thing.

My journey’s next step(s) was a whirlwind series of appointments with four more doctors (!), each of which was a letdown. Finally last month, out of desperation and realizing that my quest for the perfect doc would never end, I returned to one of those four docs to go ahead with surgery. Next week I have a second consult with my new doctor (Dr. New, keep it simple), as well as with a colo-rectal surgeon because I always have a colo-rectal guy on hand for my long and complicated surgeries.

I’m hoping to schedule my hysterectomy for November/December. It will involve surgical removal of my remaining ovary and Fallopian tube, uterus, and cervix, as well as excision of all endometriosis. Because my bowel is involved, I’ll likely spend a night or two in the hospital.

I cannot WAIT to have my hysterectomy! The prospect of relief from pain is like a carrot dangling on a stick. And even if my endo and/or adhesions return, I won’t have a uterus throbbing away and an ovary that feels like it’s being smashed by a hammer repeatedly, or a super-friable cervix to bleed every time Jake and I do the deed. Possible adhesion pain I can deal with (I hope). Imagining a life pain-free of endometriosis is unimaginable. Being able to perform everyday activities unimpeded from pain and/or excessive bleeding is something I haven’t experienced since my first period at age twelve.

Of course, a full hysterectomy means permanency of childlessness and instant menopause. I’ve been struggling through those issues the past several months, and I believe God has given me peace to move forward.

I’ve thought and researched carefully over every possibility that comes with hysterectomy, but having the surgery— vs. having yet another endo excision surgery that inevitably fails to improve my quality of life— is the right decision. I’m almost forty years old; Jake and I have been married for eighteen years and are established in our life; being pregnant and bringing a baby into our lives at this stage isn’t something we’re into anymore. That season of life has passed.

That said, Jake and I have had a huge change in our life recently (nothing bad) which I’ll save for another post. And this time, I WILL actually post something and not wait months and months to publish it.

Peace.

After Infertility

I’ve dreaded writing this post for months. Even though in early 2020 I’d promised to keep this blog up to date, I’ve instead found myself straight up not wanting to post at all. But as we near the end of this very strange year, I’ve managed to guilt myself into posting something. So here it is.

I’ve come a long way in the nearly six years since starting The Endo Zone. The girl who was once so eager to “overcome” (huge air quotes there) infertility and have a baby is long gone. I’ve spent nearly all of my thirties trying to get (and stay) pregnant; barring an act of God, having a child likely isn’t in my future. After a very long and bumpy mental battle, I’m okay with that fact. And the girl who was once so adamant about “managing” (insert more air quotes) her endometriosis and find a doctor worth his salt has been replaced by a more realistic woman who realizes, after twenty-plus doctors, that it just ain’t gonna happen.

When it comes to infertility, my interest is waning. No, wait, it’s not just waning: it’s virtually gone. I’m barely concerned about all-things-fertility these days. I mean, I do care in a way, just not in the same way and to the same degree that I used to care. This applies only to myself: of course I still care about all my friends in Infertility Land! You guys (well, gals) are the reason this blog hasn’t totally died. Yet.

As to endometriosis, what haven’t I already said? I’m hoping for a full hysterectomy in the spring with the renowned Dr. Seckin. After my hysterectomy, the infertility will obviously no longer be an issue. And because Dr. Seckin is so, so very good, I’m hoping the endometriosis won’t be an issue anymore either. No one can say for certain— even the top endo doc in the country (and possibly the world; no joke)— but I have high hopes in him. I’m fortunate to live within a 90-minute drive of Dr. Seckin and to finally have insurance that’ll pay toward his insanely high fees. Otherwise, treating with him would remain one of my pipe dreams.

And isn’t that statement just so telling of the so-called “health care” system that, bewilderingly, continues to exist here in the USA? That a person must refinance her house, take out extensive loans, and take loads of time off of work, just for a chance to be able to be treated properly for endometriosis — all because evil health insurance corporations think endo as a minor ‘reproductive disorder’? It disgusts me on such a deep level. I could start an entire blog on that topic alone!

Instead, with many mixed emotions, I’m thinking about ending The Endo Zone. I feel that its purpose has been fulfilled. In a sense, keeping this blog is also keeping myself stuck in a world in which I no longer wish to remain. I don’t want to box myself into a black-and-white mindset of “Those Who Have Kids” vs. “Those Who Don’t Have Kids” and view my life through that narrow prism. With that said, starting a post-infertility, childless-not-by-choice blog isn’t something I’m motivated to do either. Should I change my mind, I’ll post a link to any new blog that I may create. No absolutes here.

Otherwise, I think this post may be my last The Endo Zone post ever. Or if not ever, at least the last one for awhile. If you don’t hear from me again on this space, find me on Instagram (link here).

It has been my absolute pleasure to have shared this space with you over the last nearly six years. Many of you have resolved with your child(ren) and have moved onto life post-infertility. Like me, a few of you have not and will not. Some of you are still trying for your child. Wherever you are on the spectrum of fertility-infertility and/or endometriosis management, I wish you the very best. I know the road is not for the faint of heart.

Peace.

~ Marixsa

My Story

endoadhesions

I realized recently that for a blog titled “The Endo Zone” I rarely, if ever, mention endometriosis on here. I blame that on my lack of creativity: I just simply could not think of a cute blog name last year when I set this thing up. In fact, the name of my blog before I changed it to the current one was even less creative! Maybe someday soon I’ll change it again… My decision to start blogging had less to do with endometriosis itself and more to do with infertility. Anyways, the point is that I should be true to this blog’s name at least once in awhile and talk about endometriosis on here. Starting now:

Have you ever taken the time to write out your story? I don’t mean your life story or anything (but hats off if you’ve done just that!), I mean the story of how you got to the point in your walk through infertility that you decided to share your journey with others and start a blog? You haven’t? Yeah… me neither. Maybe you’re like me and think you don’t really have much of a “story,” or that no one’s interested in the one you do have. I don’t mean a blurb on your About Me section either. Well, my friend, you couldn’t be more wrong! My good friend Lisa over at Bloomin’ Uterus—fellow endo warrior and blogger of all things scientific, emotional, educational, and inspirational about endometriosis—invites others to share their endo stories on her website, anonymously or in “real life.” If you’re a fellow endo sufferer and haven’t done so already, please take a moment to check it out and follow her posts here. And no, I am not being paid to endorse this site!

Why bother sharing your story? Good question. Let me tell you first off that taking the time to write out your story is, if nothing else, cathartic: it allows you to gain perspective on how far you’ve come, or maybe how far you have yet to go. But beyond that, it can help others. You never know who you may inspire. You never know who may feel a sense of kindridship by realizing she’s not alone, or that her personal endo story doesn’t make her some medical anomaly of freakish proportions.

Recently I decided to share my story alongside some other amazing endo warriors: you can find it here. Because sometimes along this road I forget how I got started on this crazy journey to begin with: it all started because of endo. A crappy incurable, silent, invisible, debilitating, fertility-snatching disease that affects so many women, many of whom don’t even realize they suffer from it. Lately I’ve felt that I should learn more about endo, because all the pineapple core, brazil nuts, and lying on my head after sex in the world won’t do much good if I don’t take the time to do whatever I can first to make sure I’m not doing anything that’s exacerbating this disease.

Again, starting now.

 

Luteinizing Unruptured Follicle Syndrome

^^ See that big fancy medical term above? ^^ Yeah. That’s me. That’s why I haven’t gotten pregnant.

Dr. B himself performed today’s u/s since the ultrasound tech was out of the office. That 21 mm follicle that I was so happy about on Tuesday? It should’ve ruptured by now, releasing the egg in its tiny grip of follicle-ness so the egg can travel into the fallopian tube to be ready for fertilization (Basically speaking; my medical expertise is pretty rudimentary). Instead, the follicle has grown to 35 mm and counting. 20 – 25 mm is the range they like to see for follicles: more or less than that is worrisome. So,,, there’s no egg being released, meaning all the work DH and I’ve done this week to fertilize the little sucker was for nada. Pretty freakin bummed right about now. It feels too unfair, too extraordinary, too unlikely, but nonetheless real…

Dr. B says LUFS (acronyms are my thing) is extremely uncommon in the general public, but is found in endometriosis patients. I return to his office again this Monday for another u/s and more blood work to definitely determine or rule out LUFS. Dr. B’s been an RE for a very long time, so I think his speculation is probably pretty accurate here. To “solve” LUFS, I need to be monitored again during OV next month, and if LUFS shows up again, then I have to give myself HCG injections to make the follicle rupture. Fun stuff.

endobreak

The other major thing from today’s visit is they LOST DH’s sperm sample that I brought in on Tuesday! Like totally forgot all about it! Now it’s un-testable and we’ll need to provide another one. I’m completely floored! I even called ahead to Dr. B’s office on Monday to let them know I’d be bringing it, handed it to reception with DH’s name, DOB, insurance info, and ID—the whole nine yards. Well, the girl in reception simply forgot all about it, nor did she remember to mention that we’d brought it in at all to the doctor. She didn’t apologize for it either; instead, I found out secondhand from another staff member who pulled me to the side and told me, then indicated that she’d take the blame for it. I’m trying very hard to be understanding about this, because accidents truly do happen, but at the same time I can’t help but be somewhat infuriated by total lack of medical professionalism on the reception peoples’ part. As in, IF is already stressful enough, visiting the RE is stressful enough, so having to provide a second sample when I went out of my way to get them the first sample is only stress piled upon stress. Grrrr….

I will make myself get over it though: God’s forgiven me for much worse. Remembering to count my blessings today. They far outweigh the little bit of trouble mentioned above.

Happy Thursday fellow TTC-ers!

fightendo

The Plan of Attack

Yesterday I had my second appointment with my RE, Dr. B. It was actually encouraging, and I feel SO MUCH better to now have a plan of attack. Although DH and I will continue our TTC the old-fashioned way, there is now a “Plan B” underway and I finally have a medical doctor monitoring my progress, so I feel very optimistic about things.

AF showed up last Friday morning and was gone by Sunday evening. Although it was another abnormally short period like I’ve been getting lately, the intensity of the pain more than made up for its length. I had to call out of work on Friday because the cramps were just too much to bear. I spent all of Thursday evening, all day Friday, and most of Saturday morning in bed with mind-blowing cramps.

The one time I did get out of bed Friday I experienced a “popping” sensation on my ovary, followed by a jolt of pain that was so severe it had me doubled over and crying. I think that was the cyst rupturing. I’ve no idea if that’s good or bad. See, endometriosis can cause these “chocolate cysts” that can rupture, causing the contents of old blood to release and, if there’s a lot of adhesion action going on in that area (which in my case is pretty much a certainty), that spilled blood has nowhere to go. Yikes.

Anyway, a few highlights from yesterday’s visit:

  1. The u/s showed that the cyst they found on my ovary 11 days ago is gone: AF took care of that. See above paragraph.
  2. Based on the blood work drawn at my initial visit, I am a carrier for cystic fibrosis. This was especially interesting because I’ve researched my family tree all the way back to my 6th great-grandparents, and there was no mention on either side of cystic fibrosis. As a result of this finding, DH’s blood was drawn yesterday so Dr. B can ensure he’s not also a carrier.
  3. I am Vitamin D deficient. I KNEW I needed more sunlight! Yes—an excuse to tan!
  4. My thyroid is out of whack. This point alone was worth all of yesterday’s visit. I’ve suspected for more than a year now that my thyroid was off. My mom had a thyroid disorder. My oldest brother has a thyroid disorder. My sister likely has a thyroid problem. Last year I had my thyroid tested twice. Both times my numbers were out of range, but my crappy, evil family doctor did nothing except tell me he wouldn’t do anything to correct it. Dr. B, on the other hand, immediately put me on Synthroid to get it corrected. An unbalanced thyroid can contribute to infertility. Hey—I’ll take all the help I can get.
  5. DH is getting his fertility tested too. Dr. B was surprised to learn yesterday when I told him DH had never been tested before, so off DH went for blood work and then Dr. B presented him with The Cup (“Fill it up and get it back to me ASAP” was about all the medical advice given there). Although DH is over 35, I’m pretty confident things are moving along swimmingly on his end (bad pun, I know). Even though, my feelings on it mean nothing without first making sure everything’s good in that department.

So I’m on what Dr. B’s office calls “tracking,” where I go in for weekly visits throughout this entire cycle and they check to be sure I’m ovulating, to have my egg fragility and age tested, and to continue monitoring my hormone levels. I return in one week from today for the ovulation test. I honestly don’t know what to expect from that.

Following my month of tracking, Dr. B plans to start me on three cycles of Clomid followed by IUI.

With all these upcoming doctor’s appointments, I had to tell Boss something. While reviewing our calendar for the rest of April, I told him I’d be in late next week for my next doctor visit. Boss has been concerned about me lately, asking if I’m okay and such, and I knew I couldn’t continue being vague about what’s going on here. I very uncomfortably, and without looking at Boss, said that “we’re seeing a fertility doctor, so I have to go there kinda often for now” and left it at that. Boss simply replied “Oh.” Later yesterday afternoon in the elevator, Boss said to me “I’ll be praying for you about what you told me earlier. And don’t worry, I won’t say anything to anyone about it.” I awkwardly thanked him and said something about how some things can’t be kept a secret forever. In an attempt at lightheartedness, Boss said if I was pregnant, that there’s no way I could keep that a secret forever. I murmured a reply that I wasn’t pregnant. As if I needed another reminder.

Topping off all of the above, I had another session with my therapist, Dee last night. It wasn’t as emotional for me as our usual sessions, and I didn’t even tear up once! We discussed my medical treatment with Dr. B, who Dee told me she’d once visited once herself.

We spent most of the session discussing my discomfort relating to DH about the spiritual side of this TTC. See, DH is a big proponent of faith healing, as he’s been brought up spiritually in a more Pentecostal, charismatic sector of Christianity than I was. On the other side of the coin, I was brought up in a very conservative Baptist church, and—while I don’t necessary adhere to a great deal of the denomination itself—there are some things that have stuck with me over the years, and I find the notion of “Name it, Claim it,” “Blab it, Grab it” to be unbiblical. The rift between DH and I on this issue is an entire blog topic in itself that I don’t have the time or inclination to get into today. I’ll think that one over some before I write much more about it.

So, end of post, there is now a plan of attack. And I’m ready to attack.

All-Consuming TTC is Too All-Consuming

Idk if it’s a matter of putting the cart before the horse, but I’ve been stressed lately from what feels like a life all-consumed with TTC and I wonder if this here little blog is contributing to it. Between the OPKs, BBT temping, documenting of every symptom into my Period Calendar, therapist visits, REI doctor visits, learning of two people’s pregnancies in a matter of four days, reading other peoples blogs, and writing my own blog, I feel like all I ever think about lately is this infertility “problem”—to the exclusion of everything else. I’ve slept terribly for the past three nights, and I’m usually a pretty sound sleeper. Lately my sleep is very light and accompanied by strange, ominous dreams, followed by waking up completely exhausted. The stress of waiting for my lab results from Dr. B and anticipating the imminent arrival of AF only add to my craziness of late.

I know I must make some decisions here. We simply cannot go on and on and on TTC with no help other than the BBTs and OPKs. Despite Dr. B’s suggestion, IVF is a huge, HUGE, gargantuan, step that I’m not prepared to enter into just yet. Maybe I need to test the waters some first before I’m ready to make that leap. Like Clomid. Or IUI. Or the like. And, absolutely NO MORE SURGERIES! I have four under my belt to date, and the idea of a fifth surgery to remove scar tissues, which ultimately only results in MORE scar tissue, is out. of. the. question. Period. But, I have to seriously get down on my knees and seek God here, because decisions must be made and I absolutely want to make the right ones.

What my mind keeps coming back to is work. There’s only me and Coworker here working for Boss. That’s it. It’s a very small office. So knowing that I just missed 2.5 hours of work on Thursday for a doctor’s appointment, and that I’ll likely have to give boss notice of a matter of hours on Monday for a subsequent doctor’s visit, might cause some red flags. This is such a personal topic that I’m certain male Boss doesn’t want the deets on, but I will eventually have to tell him something when it seems like I always have to leave for doctor appointments, and I’m totally not comfortable going into my personal life with a man old enough to be my father.

God has a plan here. He’s not making things difficult for me just for fun and to see how I respond. He knew this was coming. Therefore, He has to have made a way of escape. After all, the only way out of something is to go through it. Yeah, I know there’s the whole “say unto this mountain be removed and cast into the sea” part of the Christian life, but that doesn’t exempt everyone from ever experiencing a challenge. There are circumstances applicable to that scripture, but not all problems neatly fall into the “mountain-sea-removed” category. Victory is also obtained—and experience and empathy gained—by having overcome obstacles. And I am not taking this infertility lying down. It will not beat me. It may be trying to consume me, but it will NEVER get me to simply lie down and take it.

Dr. B Report

So, last Thursday was the Big Day, the day I went to see my new REI doctor for the first time, Dr. B. DH met me at the doctor’s office and off we marched into the unknown.

Dr. B’s office was very nice, clean, spacious, professional, and modern; his staff friendly, efficient, and quick; however,  he Dr. B. himself was a bit odd. Possibly the misunderstood genius type? He was very soft-spoken, so I struggled to hear him at times. They drew 8 vials of blood from me, he performed a physical exam (not comfy!), and ran a vag u/s. The u/s showed a 4 cm cyst on my ovary and that my uterus was tilted upward and pushed to the right, probably pushed over because the cyst was taking up space.

It was not an encouraging visit. Upon reviewing my 16-page patient history, Dr. B. looked up at us to say he “liked a challenge.” After all my exam and blood draw were finished, we went back into Dr. B’s office to talk. He bluntly told me that my insides were “a mess,” that it was very likely (after reviewing my prior surgery reports) that all the endo plus some was back, and that DH and I needed “closure.” He told me I should have another surgery to clear the endo up. I told him no more surgeries. He immediately recommended IVF. I told him I wanted to try less invasive techniques first. He told me the noninvasive techniques were shots in the dark, that I could try Clomid/IUI/etc. if I really wanted to, but it likely wouldn’t work. Ouch. I’m to call his office the first day of my period (due on Saturday; today’s Monday) and he’d see my the following day to get started on things; the problem is, I can’t remember what he said we’re getting started on! Considering the spotting, cramping, and ovary pain I’ve been having the past 2 days, it totally looks like—in the natural at least—that AF is on her way.

I’ve been kinda an emotional roller coaster since Thursday’s appointment. I cry often, and over seemingly nothing. I cry and sob and weep and generally have a tough time keeping myself together. Today has been better, as I haven’t cried or been moved to tears once yet.

Today I choose to thank God for all the many, many blessings He’s given me and that He is a good God who has plans to give me hope and a future. That this too shall pass. That I’m only in the very beginning of a journey into the unknown that, in the end, He has fully in His hands.

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Pleasant words are as a honeycomb: sweet to the soul and health to the bones. - Proverbs 16:24

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