Endo, adeno and I

Amid moving, taking care of the trio, unpacking, and now a kitchen renovation (yay, but holy crap that's stress*&^#!!), I have been dealing with immense pain. The kind of debilitating pain that has me doubled over just to catch my breath.

I have a high pain threshold, but I'm telling you, if I didn't have kids to take care of, I'd have made several trips to the ER these past few months. I suspect a cyst ruptured the one night, because I was in even more pain than usual.

The pain comes on when I'm upright for more than 5 minutes, and I can only describe it as feeling like I'm in active labor. It literally feels as if my insides will fall out if I don't crouch down or lay down. Then, after being seated or stretching/twisting my body, it subsides long enough that I can function again, but the pain never goes away completely.

After decades of living in pain and just thinking it was completely normal, I was diagnosed with Endo in 2008 during a routine fertility workup. The RE who performed the surgery was shocked that it was actually stage 4. (There isn't always a correlation between pain level and the stage of Endo.) I consider myself very fortunate to have been pregnant and carried a triplet pregnancy.

Naïvely, I bought into the false hope that pregnancy would stall the growth of endo, and therefore ease the pain. It did go well for a while there, but the relief of the operative laparoscopy and pregnancy only lasted until a few months after the C-Section. It's been downhill ever since, with each month being more excruciating than the one that went before. Mostly, I've been too busy to take care of myself. Until I could ignore it no more.

I have pain from hip to hip, and from my ribs to my pubic bone. Sciatica-type pain in my legs from time to time, back pain, and constant nausea. The pain and nausea is very similar to what I dealt with prior to the laparoscopic surgery, which leads me to believe that I may have bilateral complex cysts and additional adhesions again. But this time, there's also an additional layer of pain I have never felt before.

On the day that we moved (crazyness!), I went to see a specialist. Just imagine, for a moment, the logistics that entailed. Me being able to sneak away while my husband and best friends continued loading the moving truck and took care of our kids.

The surgeon suspects that I have both endo and adenomyosis (that's when the lining of the uterus grows directly into the muscle wall of the uterus). I will be going for an MRI with contrast on Friday, and the surgery is scheduled for the end of the month. They wanted to do it a few days after my consult, but I needed to unpack and get the kids settled in our new house first.

I have no idea how I'm going to care for my kids after the surgery, but my kids' godmother (one of my closest friends in the world who should be considered for sainthood) has offered to care for them while I recover. She is an amazing parent and my children adore her and her family. They will have a blast, but I'm not quite sure how I'm going to remove myself from the party.

If the surgeon can't diagnose adenomyosis with the MRI, then I have the option of not undergoing a hysterectomy just yet, but having the adhesions resected again. If the MRI is positive for adenomyosis, then a hysterectomy is advised. Of course, I can choose to do nothing and continue the charade that I'm coping. I'm just really frustrated with the pain. It has worn me down to the point where I see no alternative.

I always enjoy reading every single comment, but if you struggle with endo or have had a hysterectomy, I'd definitely like to hear from you.

Why I hate Aetna

I'm so furious right now. I just found out Aetna will not cover the Mirena IUD. As you can probably ascertain from the fact that we have both male and female infertility and had to do IVF with ICSI twice, I've never needed birth control.

Now while I completely understand that birth control is not always covered by insurance plans, I find it incomprehensible that Aetna would not cover this simple in-office procedure when it is medically necessary for Endometriosis patients.

Aetna would rather fork over $30,000+ every few years for me to have an operative laparoscopy to remove bilateral complex cysts and endo adhesions than to pay less than $1,000 to curb the bleeding for 5+ years. They would rather pay for all the ultrasounds leading up to the surgery, reproductive endocrinologist's visit, the surgeon's time to perform the surgery, the time for a GI specialist to be on hand, the anesthesiologist, the surgery suite and related hospital costs, all of the nurses before, during and afterwards (in the PACU), the pharmaceutical expenses, etc. etc.

If I had to do the math, I'd say it's a questions of:
60,000+ every 5 years for surgery
1,000 every 5 years for the IUD

I'm dumbfounded by their stupidity and shortsightedness. It makes NO financial/business sense, no personal sense and it just infuriates me beyond reason.

Why is Endometriosis so misunderstood, and why does it have to be such a battle? As if dealing with the never-ending pain, infertility and emotional issues aren't enough.

Stim day 10 - discomfort is the name of the game

I had a really nice nurse for my u/s appointment this morning. She showed me the u/s pictures from Wednesday, and took the time to talk to me while she drew blood. Pretty follicles, but not many, unfortunately. About 6 on the left and 2 on the right - fewer than what I had hoped for. She was very encouraging, though, repeating the "quality over quantity" mantra.

The follicles are growing very slowly, which is good. I'm somewhat frustrated by the thought of having to inject Gon.al-F until Friday. This would mean 12 days-a-stimming... and a partridge in a pear tree. I'm pretty uncomfortable already, and can't imagine what Sunday will bring. Moan, moan, moan. How do you gals who have 20+ follicles handle it? Aside from the occasional twinge, there's no pain, thankfully. The "twinges" are nothing compared to the stabbing pain of Endo and cysts. But, I'm nauseous, with a stubborn, dull headache, and of course, the bloating. Oh, the bloating.

Looks like I'll be triggering Saturday, and heading to retrieval bright and early on Monday morning. I.can't.wait.

Heavy-handed nurses & other amusing u/s anecdotes

By now, I'm unfortunately intimately familiar with the affectionally nicknamed d.ild.oc.am, and although it's never pleasant to undress and park my feet in the stirrups, I've never had an experience like this Friday morning.

I'm a va.ginal ultrasound vet of sorts, having had several unpleasant encounters prior to laparoscopic surgery to remove bilateral endometriomas. My previous RE, a woman, wasn't the gentlest of di.ldo.cam operators, but despite severe Endo and cysts, the u/s itself was never painful, just well, rather uncomfortable. I'd be a hurting unit an hour or so afterwards, but nothing during the u/s. And she was nothing if not thorough.

At a follow-up Endo appointment at a local hospital, the female u/s tech allowed me to insert Mr. Dild o' Cam myself, which of course was weird, but also, well, empowering and even, dare I say it, more comfortable physically. Of course, there was the uncomfortable moment of having to ask how deep to insert it. But I digress.

My first ultrasound at the fertility clinic proved to be bizarre too. There I was, undressed from the wait down, with a new (male) RE I had met just minutes before, a female rep from an ultrasound company somewhere in the deep south, a nurse, and my husband. You see, the clinic was in the process of purchasing a dozen fancy new u/s machines that make your stimmed follicles light up like a christmas tree for fast and easy counting and measuring.

The RE respectfully - but excitedly - asked whether I would mind if the rep was in the room, because he might need help with all the new buttons. "I don't have much of a choice, now do I?" I said with a pathetic but understanding smile. "Oh no, you definitely DO have a choice. It's just that it will go faster if she's here. I'm sure you don't want the probe in you for 20 minutes while I try to find my way with the software," he said, laughing compassionately. So, I didn't in fact have much of a choice, but I relented, because I was already undressed. It went fine. He was gentle, and fast, and the tech kept her eyes on the monitor. The sweet nurse had her back to me, busy somewhere off in the corner. Hubby was trying his best to sit still, not fiddle, and not accidentally press the emergency button that was hanging next to him. Oh, the temptation.

Back to Friday's monitoring... You'd think women would be gentler. Yowser, did it hurt! There's something alarming about a mean-looking nurse on a timed mission, armed with a 6" magic wand and a condom, searching for your tonsils.

Prodding wildly left and right, she went on her follicle hunt, disregarding my exasperated exclamation, "Ouch!" and proceeding to point at the oddly-shaped black circles on the screen as if they were the most amusing thing she ever saw. Yes, poly-cystic-like ovaries, I know.

I tried to ask how many follies she counted, how big they were, you know, the important stuff. She just said it was too early to tell exactly. They'll probably up my stims, but that they need to wait for the blood test results. She'd give me more info about the follicles on Monday. I didn't push her, because you know, she might be armed and dangerous on Monday, and I sure as heck don't want to get on her bad side.

Lupron "flare" protocol - stim day 3

My RE has me on the regular dose Lupron "Flare" protocol. I jumped right in with stimming on CD2 with a combo of gonadotropin (Gonal-F) and a gonadotropin-releasing hormone (GnRH) agonist (Lupron).

Since I'm at a higher risk of developing OHSS, the doses are 150 iu Gonal-F and 0.05 ml or 5 units of Lupron every night. So far, I had a killer headache today and lingering nausea throughout the day, but no other discomfort. It was incredibly hard to focus on work today, but I gave it everything I had. Of course, I came home and crashed, and woke up at 9 p.m. to do the injections. Having to wake up from an early evening nap to inject myself is an entirely new experience, and one I do not wish to repeat often. Having said that, I'm already on autopilot with the injections. So far, it's real simple, fast, and much easier than I thought it would be.

I use the Gonal-F RFF Pen: http://www.fertilitylifelines.com/serono/products/gonalf/pen/instructions.jsp
http://www.youtube.com/watch?v=fADyj_nLKqs

and Lupron:
www.youtube.com/watch?v=7sKKDH9qCkE

In terms of the cycle, I'm hoping for quality over quantity, and since this is my first IVF go around, it's hard to know how my body will react to the stims.

In addition to severe Endometriosis, I've now heard three different REs say that I have many antral follicles and although I don't have classic PCOS, I have "polycystic-like ovaries" - whatever THAT means. I guess time will tell. At least my new RE listened to my concerns, and agreed that I may have greater success with lower doses. All in all, I'm okay with less meds.

To Cycle or Not to Cycle – IVF Is the Question

We have not arranged financing, called the nurse coordinator to make an IVF orientation appointment, or had my FSH levels tested to check my ovarian reserve. We’re in a holding pattern. All of this will need to happen in January, but for now I’m enjoying the “lull” after a year of intense pain, three months of blood tests, transvaginal ultrasounds, surgery, and post-op appointments. I’m reading to prepare for what lies ahead (can one ever really be prepared?) , healing from the Endo laparoscopy, and generally just trying to take a break to enjoy the holidays. We will need to wait until February to cycle. In the meantime, we are faced with the “Do we really want to put ourselves through this?”question and “Can we really afford it?” The answer to the first question is, “No, but we have an irrational, biological need to procreate and IVF/ICSI is the only way.” The answer to question 2 is, “No, but see answer to Q1.”

My clock is ticking louder every day. Birthdays and periods certainly don’t help to take one’s mind off the topic. I’m increasingly facing a deadline and realizing it’s “Now or Never.”

Hubby seems distant, sulking, disinterested. I suspect he’s in denial about it all and I’m getting angry because he is unwilling or unable to express his feelings. I know he’s having a hard time with the details, but he’s such a pragmatist that I can understand that he comes across as disinterested. To his mind, it’s “Let’s just do it. No point in procrastinating, or reading all there is to know. It is what it is.” I interpret his laissez faire approach to mean that he doesn’t care. Which I know isn’t true. It just bugs me that he’s not reading, asking questions, or being as “present” as I’d like him to be. Somewhere deep inside, I fear that this is a precursor to him being distant and disinterested in any future child(ren) we may have.

IF Makes Me Trilingual, and Counting

There’s much more to worry about than I ever knew. This journey, with its gutwrenching highs and lows, is well-documented by brave women across the globe. Contrary to what I thought, it’s not that hard to find someone cycling, dealing with insurmountable odds. (In our case, MFI and FFI – Endo Stage IV attempting IVF/ICSI.)

Despite all the emotional turmoil, learning to decipher infertility acronyms is just one more overwhelming obstacle in a road riddled with bumps, pitfalls, milestones and footsteps of those who have gone before. With every new term you discover, you realize you’re slowly entering a collective consciousness that you never chose to be part of. How to make the PIO shots easier, deal with the 2WW, to POAS or not. I still don’t know what 6dp3dt means, but I’m sure I’ll be enlightened soon…

It’s both comforting and disturbing to read everyone’s stories, heartaches, journeys and outcomes. I find myself anxiously awaiting the news from people I do not know, but care about. Every beta day, every BFN, could be my own and it helps to answer the “What if this were me?” question.

I catch myself playing “What if?” more frequently, as I try to come to terms with the infinite number of outcomes. “What if the cycle is canceled?” “What if no embies make it?” “What if I get a BFN?” “What if I m/c?” I resent fertile women who bypass “Go” and start their journey at the “What if I m/c?” phase. Of course, I realize that once you’re pregnant, and have a child or children, the “What ifs?” are infinite too.