Really???!!!

Ok, so when you have a 1% risk of having a disease, and you actually have it...every other medical statistic is pretty much lost on you.  May the odds be never in your favor...

So after waiting for results that take 7-10 business days, and on day 11 you've heard nothing... the number 1 and I got very acquainted.

One percent of women who have the endometrial receptivity assay are found to have a uterus that is incompatible with implantation.  That's it.  Game over on carrying a pregnancy.  At this point in time they have "no therapeutic solutions" to offer.

The fear of this may have attributed to my lack of sleeping. Also I can tell you more about bovine implantation failure, because infertile cows are a serious problem, apparently.  I know that mouse studies do not accurately reflect human endometrial studies (we thought this?). Also we share an equal receptivity window with the rhesus monkey...

So none of my extracurricular reading did anything to help me fight off the growing realization that I had a post-nuclear apocolyptic uterine environment incompatible with life.  I mean, I kept checking my patient portal for my fertility clinic and...nothing.

So being the ever practical person that I am, I quickly realized that they are putting off telling me that my uterus was comparable to the Sistan Basin for supporting life.  I mean that's not just something you just want to hear over the interwebs...

I texted my embryologist, trying to fish for answers...and they really didn't have my results back...

So a couple more days I finally get brave and ask my doctor's medical assistant if she had heard anything....

NOPE...

'Oh, God...My uterus IS Chernobyl.'

I walk around work the last few days contemplating which gynecologic oncologist I want to perform my hysterectomy, and if they'll have to wear hazmat suits while doing it...

So while, I'm getting to the point of despair, I get an innocent email asking me to inventory what meds I have left so she can order what I need for the next cycle...

'What's the point?'

Buried in that email was just an innocuous line of "your results came back and everything is normal...would do same protocol for transfer".

What?  Who me???  Normal???  Fertile???  Compatible with life???  I could get pregnant???

It takes several moments to process this.  I've read the short email at least 30 times...

It is literally the best news related to my fertility I have received.

It's been very strange today trying to wrap my mind around being normal.  Not only did this imply that my uterus was compatible life, but that it's not even really special and require a day more or less of medication to become receptive...I'm just standard, normal, run-of-the-mill receptive.

This could work!!!?

Peace, Love,  and Normal is the New Mindblowing,

Mary Katherine, Owner of Uterus InCompatible With Life

   

Damn Rabbits

Random history lesson...

So in this light, me hating Easter bunnies right now has nothing to do with Jesus...that's just a random name we stole to take attention away from the Pagans...Not having copyright laws at the time...

For all the people who like to tell others struggling with fertility to "just relax", "get drunk", "lose/gain weight", "go on vacation". I'd like to share this quote from a study...

Now I realize Dr. Domar is only a psych professor at Harvard, who also works at a fertility clinic in Boston, and just happened to write this quote in an academic study she performed, but that does not make it less true.  No, infertility can't kill me like cancer, but my chances of getting a reproductive cancer are statistically much higher with or without fertility treatments.  I'm probably not going to drop dead of infertility as would be a risk with heart disease, but if I was told I would never have a child through any means possible, dropping dead would be the least of my concerns.  The only terminal disease I have been diagnosed with thus far, is life.  But I'll tell you after nearly 5 years of living with a chronic disease in which I cannot bring life to the next generation, a disease that causes great emotional pain and turmoil, a disease which stems from other physically painful diseases, anything terminal would at least give me an idea as to when the pain would be over.

If you are not in my shoes, I know you are saying, "But you have so much to be thankful for."  That's easy for you to sit at home and say as you dye Easter eggs and try to remember where you put your children's baskets from last year.  I don't want cancer, heart disease, or HIV.  But I want you to stop belittling my pain or anyone else you know struggling with infertility because we don't have one of "those" diseases.

I have not lost my hair, but that doesn't mean I don't regularly have to take medicine that makes me feel awful.  I promise, the only thing worse than my cramps from endometriosis, are the ones I experience after a treatment cycle. I don't have to be pregnant or on chemo to suffer from nausea, I just need to go from less than normal hormone levels to higher than normal for a woman in her third trimester of pregnancy and back to less than normal in a matter of a month.  So while you may understand how we suffer from endless anguish, we physically hurt, too.  

We experience the same level of distress with the least amount of compassion from others.  I don't ask that you do my share of the work.  I don't ask that you make excuses for me.  I just ask that you treat me and others struggling with infertility with the same amount of deference you would if we told you we had cancer.  We face enough obstacles like no insurance coverage, difficulty accomodating work schedules to treatment cycles, enormous financial tolls, that remind us that no one really understands that infertility is a disease.  So next time you want to tell someone, "Just quit thinking about it," ask yourself  'Is this what I would tell someone with cancer?'

Peace, love, and ignoring the bunnies,

MK

Lab Rats

Well, I can say that's a wrap on that "Mock Cycle with Endometrial Receptivity Assay".  It has been an interesting learning experience taking on the "crazy shots" without the emotional turmoil of 'Will this work this time?'.

One, they really make me tired. Super-tired.  I feel sleep-starved all the time, but I also wake up all the time.  I have thought before that they did, but I also did not know if it was just a way for me to avoid emotional turmoil by sleeping all the time...although to sleep all the time, one would actually have to be able to sleep...

I don't particularly feel bitchy or irritable, and if I come off that way, I can't say it's not sleep-related. I feel crampy and crappy and premenstrual with or without an actual transfer procedure.  So, I guess, it's a nice baseline.  I don't feel different.  I did not feel particularly different this cycle, my last treatment cycle, or the one before that where I actually had implantation occur. So, I guess what they always told me is correct.  You just don't know until you know.

Emotionally, I'm not particularly anything.  I'm happy to have the biopsy over with, but a little anxious that my results are going to come back comparing my uterus to Chernobyl.  Logically, I am doubtful because of the aforementioned implantation...but then again...it's me.  I mean, on all counts thus far, I have fallen into the slimmest of statistics when it comes to infertility.

We did get BJ's results, and well, they tended back to the original SA he had 4 or more years ago...Not horrible, but definitely will still need to use intracytoplasmic sperm injection (ICSI).  Too many immature and some other smaller issues.  Dr. Donesky said we would still qualify for the guarantee program, so it's not that horrible, but he did suggest BJ up his vitamin and antioxidant game.

So we just wait. We wait and a few more days, and maybe a few more until we know something. Everyday my logical side has to fight my Debbie Downer side a little harder.  But trudge on I must, because life doesn't give me any other option at this point.

Peace, Love, and Happy Waiting,

MK

Every Sperm is Sacred...

So I'm playing lab tech, which I guess is a great experience since I would LOVE to work in a fertility clinic one day, but still...ew!

Droppers, test tubes, specimen cups and dry ice...this is supposed to be my day off, LOL...oh, and not to mention the stars of the show...

So this is BJ's fancy high dollar test, and next week will be mine if all the stars align. I will be taking progesterone starting tonight, just as I would for an embryo transfer, but I still take the delestrogen every 3rd day, too.  So that means up to 3 intramuscular shots in one day!  YEAH! I splurged and got the fancy designer Band-Aids that come in a black box...Nothing but the best for my ass... But's it's a good test run before May, hopefully, when we try our first possibly fresh cycle in 3 years.  

So all of this in the hopes that we will one day conceive our synthetic child... Really Dolce & Gabbana?  No, it's fine...I mean, your clothes are too runway and synthetic for real life, and I'll never buy Light Blue, again, so there you are.  Honestly, if you think IVF children are less loved and less appreciated because they were begotten by science, then there is just no hope for you.  Go crawl back to your cave... And if you want to adopt, that is amazing. Adoption is a wonderful option, it's just not for everyone or right for everyone at certain points in their lives.  

Well, I'm reaching hormone exhaustion levels. I went from 9 to 1007 in 10 days, but my lining only got to 8.2 which is kinda slim. Our goal is always 10. We shall see what happens in the next few days.

Peace, love, and ew!

Mary Katherine

This is 30...

To rip off one of my favorite Judd Apatow flicks...

So far, I've been told I have arthritis, gone into menopause, had a fibroid removed, gotten my first cortisone shot, and had a failed egg donor cycle.

Basically, 30s are my late forties...

Despite all that hoopla, BJ and I are moving on with our lives to the next venture in this struggle, which is this endometrial receptivity assay.  Speaking of high tech testing, BJ, too, gets to have another test done to make sure his swimmers, are indeed, as good as his last test said they were.

So I just took my third injection of delestrogen, which is similar to the progesterone in oil shots except they are given in smaller amounts.  We had to go this route because my body is so depleted of estrogen that I apparently metabolize all the estrogen from transdermal patches too quickly.  It will be interesting to see what my estrogen level gets up to next week.  My baseline was 9, which is low...but since we are using shots this time, it should shoot right up.

So once the tests come back, Dr. Donesky will be able to tell us if we are indeed candidates for a money-back guarantee program for egg-donation cycles.  Preliminarily, we are, and so we have started the egg-donation process again.

When people ask me, "have you though about adoption...", "Are you going to adopt?", or say, "You know you can just adopt"...when the black leaves my eyes, and I can see through the wall of rage that I immediately throw up in defense, I try to explain that I have been told many times, that my uterus looks fine. This ERA should give us a final answer confirming that, one way or another.  Egg donation is cheaper than adoption.  I get to experience pregnancy.  I get to carry my husband's genetic child.  I get to talk to my baby from the moment its little ears work.  I don't have to pay the egg donor's cost of living even if she drinks, does cocaine or meth, or otherwise partakes in harmful behavior and exposes our would be children, unlike adoption.  Nor can the egg donor say she wants her eggs back and keep all her money.  So please, tell me, tell me since you know so much more about my situation apparently, why I should "just adopt"?

With this money-back guarantee program, we pay a little more up-front, but if at the end of a determined amount of tries (potentially a lot), I do not end up with a live baby in my arms, we get our money back.  Money that we can put towards adoption, re-doing our house to make it cozier for just the two of us, or a really nice vacation.  Whichever, but my point is not that it costs more, it's that Dr. Donesky and his group are that confident we can conceive with egg donation.  He has told me from the beginning and numerous times since, that I am capable of carrying a pregnancy.

With my post-op appointment, we discussed how, in fairness to my uterus, it's only gotten one decent shot at conceiving all this time, and that was my last cycle.  So, I am excited to be moving forward, and getting the last of the answers we need.

Peace, Love, and JUST Not Killing You for Telling Me I Could "Just Adopt",

Mary Katherine

"Don't wish me happiness. I don't expect to be happy all the time... It's gotten beyond that somehow.  Wish me courage and strength and a sense of humor. I will need them all." 

~Anne Morrow Lindbergh 

Science, Setbacks, and Hurry Up and Wait...

UGH...

I am so amazed and encouraged by what is in store for us that I seriously can't wait for the next few weeks to go by, but wait we must...because, you know...4 years and 8 mos isn't quite long enough or something...

So in my spare time/relatively sleepless nights/time spent peeing (interstitial cystitis flare--I had to pee 38 times Tuesday...apparently I really do have it, dammit), I have read up on the endometrial receptivity array (ERA). This is the test that I will have performed on my lining hopefully here in the next 5/6/7 weeks depending on how quickly my elderly ovaries want to get up and play.

If you are an uber dork/geek like me, then here is a good start, or more reader friendly here.  Anyway, this seems pretty amazing/promising.  They will basically test for different kinds of  RNA being expressed in my endometrial cells to see if they are "in phase" or receptive to an embryo implanting. When your endometrium is in phase, it produces more of one type of RNA.  Some women, who have not had any success with healthy embryos implanting, have found out from this test that they need to tweak/personalize (I'm digging the slashes today) their protocol.  Credit this info to B.W. Donesky, MD.

Flashback to middle school health class- we base everything off a 28 day system for women.  If there is variation in the length of your cycle, the follicular side (from your period to when you ovulate) is what we blame the variation on. If a sperm does not meet an egg 2 weeks after you ovulate, you will have your period.  That part (luteal phase) is supposed to be relatively fixed.  This is what the calendar method of birth control is based on.  So basically count the days of your cycle - 14 = the day you ovulated.  Credit this info to M.E. Bullen, MD...and maybe whoever my middle school health teacher was that made this information way too humiliating to actually be useful and tainted it with getting pregnant from kissing stories and other lies...hmm...arguably it was all lies for me...

Anywho, some women's ovaries weren't necessarily paying attention to Ms. What's-her-name in middle school.  There are luteal phase defects which is controversial in fertility land because dammit, 14 days.  But according to relatively new research based off old research that inspired more research...it may actually be a thing.  Some women's uterine lining just doesn't sync up with the timing of their ovulation.  The ERA helps figure out if the endometrium is is too mature or immature to allow an embryo to implant.  It reminds me a lot of trying to find off campus housing...either the housing was ready for you to pay rent in July, or September, but never August when you actually started class... I digress...even better if not being in phase is your problem, it is modifiable.  You either start your progesterone earlier, or later.  FIXED! Pretty simple.  Usually the off track lining requires a follow up ERA  to ensure you have everything lined up correctly, so that takes more time...but totally worth it.  Repeat previous statement until belief occurs. Oh, and also credit Dr. Donesky with this information while realizing it is heavily paraphrased...actually all of this is...

So back to me...Yeah... recovery has been pretty smooth until my heavily into remission interstitial cystitis seemed to decide that now was an appropriate time to make my life a living hell.  Did I mention I had to pee 38 times Tuesday?  It honestly gets to a point that you don't even want to flush...or get off the toilet for that matter. Fortunately I was able to have a treatment yesterday, which has greatly, so far, decreased my field trips to the loo...When it rains, I pee...

Other than that, I am sailing right along, and BJ is my ever-ready, willing, and wonderful accomplice. Not to say all this waiting isn't frustrating. It totally is, but we don't have any options that don't require a wait.

I'm also fully aware that nothing is guaranteed. I could have this test and be totally in phase.  I don't think that really will be any more damning to our situation.  Yes we've possibly attempted to conceive 56 times, but honestly, that last FET, was probably the first time we had a real chance with what appeared to be a viable, healthy blastocyst.  So you could very easily argue, we've only had one real shot so far.  And just because you have a blastocyst, does not always mean they are perfect/healthy embryos.  In conclusion...

Peace, Love, and Never Forget What God and Science Can Do,

MK

Surgery #2.

I feel like a legit, infertility veteran now.  I mean half a decade, 2 surgeries, multiple treatment cycles. I think I should get another merit badge.

Anyway, I had surgery #2 yesterday and it was pretty easy.  Dr. Donesky removed some tissue from my cervical canal and uterus to help catheters pass through more easily.  Hopefully this will mean less uterine irritability after my next embryo transfer.  It also should make just having a period a little easier.  Apparently, I had a lot of tissue that was getting in the way of my internal cervical os.  I did not have any fibroids, which I was pleased with since my mother has a history of fibroids.  Dr. D told my husband that my uterus appeared healthy. Also my failing ovaries seem to have calmed my endometriosis, some.  There is some good with the bad.

In our next step we will be doing a mock cycle with an endometrial function test performed on the day that would have been my transfer day.  I have spent way too much time researching the wrong test and had myself all worked up into a frenzy about how I will never be able to carry a child.  There is an older, but still widely used E-tegrity test that tests for beta-3 integrins.  Beta-3 integrin is a protein that helps with tissue adhesion...so basically glue to hold the embryo to the wall of the uterus. Many women with mild endometriosis have little to none of this protein and so their results come back saying they need to use a surrogate.

So reading this, I was devastated.  I have mild endo, and I have been unable to conceive.  I was sure we would be told we would need a surrogate.  I have nothing to give a surrogate, so basically that means we would have to adopt.  And it would be all slapped on my face at one time.  I'm not ready. If we were ready, we would have turned in our adoption application instead of staring at it with hesitation, fear and ultimately devastation.

When Dr. Donesky came to pre-op he asked if I had any questions, and I ended up asking him about the biopsy. He told me he did not like the E-tegrity test, and that he's been able to help many women "without beta-3 integrins" conceive using donor eggs.  I don't think I'd ever been so happy about our fertility options in a long-while until I heard that.  He'll be doing a test with another acronym that's only a year old.  Miami and LA are the only places in the US that run the test. I've had too many drugs in the last 24 hours to remember what the acronym was.  Anywho, the answer will not be if I can or can't carry a pregnancy, but how many more or less days of progesterone I need to get my endometrium in the right phase.

Anyway...I'm supposed to heal for a few weeks, and hopefully we can begin the mock cycle.  I'm excited.  We've still got some time and options.  And I'm ready to use that time to take them!

Peace, love and hopefulness,
MK