Second Opinion #1

This week has been full of surprises! Right now, I am going to focus on the RE piece, and save the other stuff for later.

We had an appointment with another well-known RE for a 2nd opinion about our IVF and RPL situation this week.  Overall, it went extremely well!  He spent 3 hours (no joke) going through our records and discussing them. 

Before I get into detail, I should first start off by saying that according to ASRM, this clinics success rate for live IVF births is equivalent to the clinic we are at now (about 60% which is quite good if you research clinics across the US).

Here are some of the main points we covered at our consultation:

  • I need to be tested for Vitamin D deficiency as I have never been.  Went and got this done today.
  • I need to be tested for Celiac Disease.  Celiac disease can be linked to recurrent pregnancy loss, but is not on the usual RPL panel work-up & of course, I have not been tested for it yet either.  You would think since it is a simple blood test, why wouldn’t my current RE just order it? If I did end up having have Celiac disease, it would require a gluten-free diet. I also got this test done today.
  • Husband needs to get his testosterone, LH, FSH, Prolactin, etc. run again so we can see if Clomid would be of any use in upping his count.  It has been about 5 years since we tested these in him. They were all in normal range before, so using Clomid was not an option (it doesn’t assist with just a low count, there has to be a hormonal imbalance happening too).  Got this test done this a.m. as well.
  • This RE was very impressed with my husbands improvement from pre-varicocele surgery to now, 2 years post surgery.  He said our chances of conceiving on our own have gone from a measly 1% to about 15%.  And if we got him on Clomid, there would be an even higher chance on our own or via IUI, about 25%.  Hey, we will take what we can get here!
  • At this clinic, we can pick any day for our transfer, as we go along in our cycle.  It does not need to be done in advance.  This is HUGE to us.  Our current clinic only does transfers 1 week out of the month, and hence, they try to control everyone’s cycles with BC and Lupron, picking out the exact transfer date months in advance.  I despise this! This clinic does transfers 365 days a year if needed, depending on the woman’s individual body/cycle. Just call on day 1 of your period and off to the races you go!
  • He would only want to transfer 1 embryo in a future FET.  Great news!!!  Why do we need to transfer two if I get pregnant with twins every time we transfer two?  If we transferred just 1, we would most likely still get pregnant like we did the first time when we transferred 1! Obviously, I do not do very well with twins, and he felt that there is a chance that one twin vanishing could have affected the other making it.  Of course, there are lots of times where one vanishes and the other does perfectly fine, but not always.  There is no solid way to prove or disprove if losing one twin could have played a role in losing the other.  
  • He would do a non medicated FET like we have been pushing for.  Since my cycles are regular, & my lining looks well post surgeries, there is no reason not to.  This could involve the use of trigger or not, which we can decide down the road.
  • He wants to investigate my super high progesterone levels during each pregnancy. Our current RE said my levels are the highest she has ever seen, but also said it wasn’t an issue as far as loss goes; only low progesterone is a cause of RPL.  I know that low progesterone can cause loss, but there is something strange about how high these levels are when pregnant.  When this RE saw them, he also said they are also the highest he has ever seen.  He has been practicing for 30 years.  Hmmm…sounds fishy to me.  Our last pregnancy my progesterone level was around 300, and we are talking about with my first beta it was this high. First trimester progesterone levels are usually under 80!  They stayed consistently high like this too until every loss.  I was using Crinone for my progesterone supplementation during each cycle.  Obviously, I did not need to be doing the Crinone 2 times per day at $15 per insert for 10 weeks with a progesterone like that.  When I mentioned this concern to my current RE when pregnant, she said to keep doing them as I was regardless of how high the levels were.  Uh, OK.  The new RE said he would like to discuss the levels with his partners at the practice, which we really liked to hear.  Never once has my current doctor said she would like to consult with another person about us.  2 minds are better than 1, right??
  • He wants to perform a mock transfer if we choose to move forward at his clinic, and another Hysteroscopy to be sure my uterus is all clear.
  • Relocating our embryos will cost us $100 (dirt cheap in the IVF world), it’s a simple form to fill out, and takes about 2 weeks to get done start to finish (both clinics use the same transportation/storage facility which is good).  Also, the embryo medium is the same between clinics, they have had several patients transfer back and forth between the 2 before without issues.
  • He feels our chances of carrying to term are still quite good; I didn’t bother asking for a percentage.  He said he has had patients that have carried to term after 3 unexplained IVF losses with no prior children.  Hope!!!
  • He cannot definitively say that the submucosal fibroid caused our last loss.  Mainly because we do not even know with certainty that it was there during the pregnancy since the Hysteroscopy that identified it was not performed until 2 months after.  We figured this already.
  • We discussed anti-depressants, and post-partum depression, which due to my situation, I am at high risk for. You would think it would be the opposite, but its not. More to follow on this soon. 
  • Saving the best for last, his practice has a blood and ultrasound monitoring center literally 10 minutes from our house! Almost unreal, right? We are used to traveling about 70 miles per visit.

So, now what?  Well, we still have an appointment with another new RE set up for July 22nd.  However, we have started to ask ourselves if we should even go for another opinion??  Will it just confuse us even more?

In addition, we have an appointment back at our current RE August 6.  I feel like this appointment is almost a last-ditch effort; one last chance to tell us what we can do differently moving forward.  Each day though, I wonder if I even want to bother with it.  I guess the question is, if we like this new RE’s opinion & experience, should we just make the decision to go there and be done with it? Perhaps more information will just cloud our vision even further. 

  

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To IVF or Not to IVF?

After the sperm count showed little improvement well after a year of his Varicocele surgery, we decided we would go back to meet with a fertility specialist.  Don’t get me wrong, we kept busy from 2012 up until 2014…I got my master’s degree, we got a new dog, we remodeled our master bathroom, we put in new floors throughout our house, we traveled. We pretty much did everything we could to take our minds off trying to get pregnant. But deep down inside our minds were still there.

We ended up choosing a different fertility practice this time than where we had done our IUI’s.  Let me tell you why.  As I mentioned in a prior post, the previous office had numerous doctors with various locations.  During our short time at the practice, we drove up to 2 hours away for an appointment.  And we knew if we did IVF there, it would be even more driving (not done at all locations).  We also disliked the idea of a different doctor possibly performing the procedures each time. The more times the same doctor is examining your uterus, the better we thought. Getting a second opinion from another fertility practice was very important to us as well.

We found another practice about 30 minutes from home, with a woman doctor this time.  Both of us just felt more at ease when we went to our initial consultation with her.  She spent at least an hour with us. We would not have to drive to different locations or see different doctors either.  Of course, I had taken all of our records with all of the “test” results to this appointment.  By now, these tests were over a year old, so guess what? Yep, you guessed it…REPEAT all tests! This entailed: a pap, blood work & a sperm count, genetic testing for both of us (a must before IVF), another HSG and SIS, etc.

All was normal with 2 exceptions: the sperm count and the genetic testing done on me.  It came back that I was a carrier for Prothrombin Thrombophilia, Hemochromatosis, & Gaucher’s, and I had the MTHR deficiency condition.

After you do genetic testing, the genetic counselor calls you and reviews the results with you.   I was told that none of what I was a carrier for, nor had a condition for, would affect reproduction.  The new fertility specialist we were seeing confirmed this at our next meeting.  In the case I became pregnant, all I would need to do is take baby aspirin for the Prothrombin & folic acid for the MTHR.  Easy enough!

She went on to tell us what we prayed she wouldn’t; without IVF with ICSI there was no real chance of us conceiving on our own.  And she said she wouldn’t bother to do IUI again and waste our money.  OUCH.

So, we met with the financial coordinator to see what we would be in for if we decided to do IVF.  We had already heard how costly it was. There are about 1 million different packages to choose from.  Seriously!  Packages can range from (here comes the jargon) 1 fresh cycle with 3 frozen cycles, to 3 fresh cycles with 2 frozen cycles, or you can just pay for one cycle at a time. To give you an idea, the price for a single fresh cycle with meds was around $14,000, and a multi-cycle (both fresh and frozen) was about $28,000. YIKES! Talk about breaking the bank.  After talking with the financial coordinator, we both needed a stiff drink to say the least.  How could we ever afford to have our family? 😞

ivfcost

Taking the Next Step??

After 2 failed IUI’s it was time to re-evaluate.  Maybe we should have listened to the fertility specialist who told us we had no chance of it being successful with it?? Nah, we needed to know for ourselves.  So, now what?  We wanted to figure out why his count was so low.  We decided to see a urologist that specializes more in the male reproductive side of things. My hubs shared with me that when he was a teenager he was diagnosed with a large Varicocele vein.  However, he did not think it would be a problem as far as reproduction goes, since the doctor he saw back then told him it wouldn’t be.

When we saw the urologist for the first time in 2012, he said otherwise.  He wanted to do a “Varicocele repair.”  The vein was so large that it was blocking some of his sperm from being released. The surgery entailed undergoing anesthesia and tying off the vein using silk fibers.  The chance of it improving his count was only 30% and it could take up to 2 years to see the complete improvement. 2 YEARS?! It had already been 2 years since we started all of this. And such a small chance of it helping. But, we discussed it, went back for a 2nd visit, found out our insurance covered it, and decided to move forward with it (even though we knew 2 different couples who did the surgery and ended up still needing IVF after).  Again, we were hopeful it might be different for us.

anesthesia

We did his first count 6 months post surgery and it showed no improvement.  Then 1 year after the surgery, still nothing.  During this year we tried on our own every month.  I ordered so many things online like FertilAid Count Boost, FertilAid vitamins, Pre-Seed, FertilFocus (when you test your saliva to see when you are ovulating!), etc.  I took my temperature everyday.  I peed on ovulation sticks every month.  We started juicing everyday and eating super foods like Maca Root, Flax Seeds, Goji Berries, and Acai.  Each of us took at least 3 supplements a day that year.  After we did the deed, I wouldn’t go to the bathroom for hours.  Instead, I’d lay upside down in hopes of 1 making it.  Starting to sound pathetic, I know.

#FertilAid

Suddenly, I started to notice that we weren’t even us anymore.  We were barely talking about anything other than getting pregnant.  I was soooo sick of it, and come to find out, so was he.  I think what made it even harder was no one really knew what we were going through, except a few family members and close friends.  And by now, most of them had babies or were pregnant.  We hid it from everyone.  It was now late 2013, and we needed a break.  We decided to give it a year and see if it would just happen naturally when we stopped trying to make it happen (like people try to tell you all the time…so annoying!!). 

Well, that year came & went with no pregnancy.  We decided it was time to test his count again.  This time there was some improvement. Unfortunately, the improvement was so slight that we still fell into the terrible “1%.”

ivfjoke

Coping with Male Factor

Male Factor.  That was our official diagnosis as to why we were infertile back in 2011.  When they do a sperm analysis, they don’t just look at the count as many people think.  They look at about 7 other major factors too.  NOTE: I do not claim to be a doctor in anyway, all of this information is based purely on experience. Some of these factors are sperm volume, concentration, motility (IMPORTANT!), viscosity, PH, and morphology (ANOTHER BIGGIE!). When it comes down to it, the 3 most important factors are: count, motility, and morphology.  In other words, the amount of sperm, the rate at which they swim, and if they are shaped normal or not.  Don’t worry, I won’t get into all of the details and percentages like a doctor will and bore you to death, however feel free to ask if you are curious.

When we had our 2nd sit down with the fertility specialist after the 2nd count, he told us our only option was to do In Vitro Fertilization (IVF) with Intra-cytoplasmic Sperm Injection (ICSI).  WHOA! What? These are very common terms to the infertile couple even though they may sound foreign to a fertile myrtle (notice I emphasize may).  Basically, we figured out on our own that IVF meant retrieving my eggs and putting them with my husbands sperm in a dish in hopes they would form an embryo(s) that could be transferred into my uterus.  The ICSI part meant that instead of allowing the sperm and egg to join together on their own in the dish, the embryologist would pick the best sperm and inject them into the best eggs.

Initially, we wanted NOTHING to do with IVF.  It was so scary to even think about it.  We had friends that went through it and we knew what hell it was for them, whether they finally achieved the pregnancy or not.  Emotionally, physically, financially…we didn’t want anything to do with it.  So, we insisted that the doctor allow us to do an Intra Uterine Insemination (IUI) first. The doctor clearly told us there was no chance it would work as we only had a tenth of the sperm they recommend for this procedure.  We didn’t care.

Here’s why:  In my opinion, IUI is wayyyy easier than IVF.  The amount of hormones and monitoring by the doctor is significantly less.  Plus, it is much less evasive and significantly cheaper (IUI is only about $1,000 each round).  For us, IUI involved taking Clomid (sometimes referred to as the “gateway drug” for infertile couples) for a few weeks before ovulation, with ultrasounds in between to measure the size of my follicles, and when they were the right size, I would inject myself with a “trigger” shot (OUCH! This one was in the stomach though, not like the big daddy IVF one in the a** which is so much worse).  The trigger shot meant I would release my eggs (ovulate) within 36 hours. During that window of time, we would go into the doctor, Shane would do his part, and they would inject it into me.  It was definitely worth a shot to us.

Here’s the catch-the only way you can proceed with an IUI or an IVF is to have MORE tests done first.  Anyone embarking in the field of assisted reproduction should understand and accept that there will always be tests to be done on them. The two most common diagnostic uterine tests are the Hysterosalphigogram (HSG) and the Saline Infusion Sonohysterography (SIS).  Ask any woman who has had an IUI or IVF done and I bet she will know exactly what these are.  The HSG is an x-ray that checks your uterus to make sure your tubes aren’t blocked.  You go into the same type of room as you would for an x-ray, except you lay down and they inject a “dye” into your uterus through a catheter so they can see the uterus better.  I HATED this test the most of all tests (all 3 times I had it done).  It was uncomfortable and took about 20 minutes.  And there was an issue.  The doctor said my right tube appeared to be blocked and we would need to repeat the test to be absolutely sure (there was a chance I was just having a spasm that was causing it to appear blocked).

#HSG

So, I repeated the evil test and it came back normal, no tube blockage, just a spasm.  Next on the list was the SIS.  This one isn’t as bad.  I’ve had it done about 5 times.  Here a catheter is inserted and saline is injected into the uterus.  This test looks for things like polyps, fibroids, and scar tissue.  My first one came back normal and we were finally ready to give the IUI a go!  As you can see, it takes a while for anything in the fertility world to actually happen.  From the time we decided to do the first IUI until we actually did it, it was around 3 months later.

The day following my trigger, we went to the doctor for the insemination.  My husband did his job in the “secret room” while I was prepped in the room adjacent.  It took about 20 minutes because they have to wash, or spin out his sperm, finding only the moving ones with nice shapes.  There weren’t many they told us.  But, we were still hopeful.  Hey, it only takes 1 right?! I laid back and the doctor injected the sperm into my uterus through a tiny catheter.  Piece of cake! After I rested there for about 30 minutes while we talked. I took the day off work even though they said I could return to my normal activities. We went back in the following day & went through the same steps trying to make sure we timed the IUI perfectly right.  I took off another day to relax.  And then 2 week wait began (2WW).

In the world of infertility, this is one of the most dreaded times.  Seriously, Google it and you will see. During the 2WW, I tried to stay busy at work and at home, and so did my hubs.  We didn’t tell anyone we did the IUI, other than our fertility buddies at the time. The doctors tell you that you should never take a pregnancy test early, but we did anyways.  Negative.  We still thought it might have worked.

That’s the viscous cycle with infertility; you are always hopeful and sure THIS is the time.  But, the day my blood was to be drawn at the doctor, I got my period and it confirmed the BFN.  It was now 2012.

#negativepregnancytest

Our Story-part 2

The dreaded word in the world of infertility–“tests.”  At first, one might think “OK, I will get the test, rule out any problems, & we can move on,” or, “OK, we might find a minor issue, fix it, and voila, PREGGO”!  Not always the case.

Thinking back to 2010, after 2 years being off the pill, I remember my OB explaining to me that protocol was to do a work-up on the woman before looking at the man for any potential problems.  Seemed simple enough.  So I got some diagnostic blood work done- FSH, TSh, CBC, etc. (most might sound like jargon if not a fertility specialist).  We waited for the results & the phone call came, “Everything looks normal,” she stated.  “Maybe, we should take a look at your husband now,” followed. Taking a look at my husband meant him giving a sperm sample.  She made it sound so easy.  Yea right! What man wants to willingly give his sperm to a doctor to be analyzed?  Not mine for sure.  I recall those first few sperm counts turning into battles between us. Who did I think I was? Of course, nothing could be wrong with him!  Ladies reading this, please take note: No man thinks anything is wrong with him, let alone with his “soldiers”!

Well, eventually my husband consented because after all, he wanted a baby too. Oh, and another note: The sperm has to be dropped off within 30 minutes or it’s not a valid analysis.  Hence, it is mad rush to get it there once he’s all finished.  Then, when you take it in, trying to be discrete with the cup in a brown paper baggie, the receptionist is never discrete back.  She will loudly say something, trust me.  And you think that everyone in the room knows exactly what’s in that baggie too.  Don’t worry, the good part about all of this is that after a few counts, your husband won’t mind that he has to do it, and likewise you won’t care even enough to hide it in a baggie.

#sperm, sperm count, sperm analysis, fertility testing, semen analysis

If you ask me, generally it takes too long to get a count back.  Usually a week or so, depending on how high up the rank you are.  At an OB, you will be lucky to hear the results within 2 weeks, a fertility specialist 1 week, and if you are on their VIP list, maybe 3 days.  Since at this time we were low on the totem pole so to speak, it took a solid 2 weeks for that phone call.  TORTURE.  But what we heard next was worse…the count came back extremely low.  I can still hear the words, “The chance of you two conceiving naturally is about 1%.  I think it’s time we refer you to a Reproductive Endocrinologist” (fancy lingo for RE, or fertility doctor!).

The next thing that came into my mind wasn’t even about having a baby or how devastated I felt, it was about my husband.  How could I ever tell him this? How could I be the one to steal his manhood from him?  I didn’t tell him that day, because I couldn’t.  But the next day I did.  He actually took it pretty well and after a discussion, we convinced ourselves that it was probably just a fluke & the next one would surely be better (notice the “nexts” are already starting..a sickness in the world of infertility).

In early 2011, we met with the fertility specialist.  We were referred to this guy because, and I quote, “he was the best around & could get anyone pregnant.”  You get shuffled around and meet the staff, which includes the surgical coordinator, the financial coordinator, the medical assistant, the RN, the receptionist, and the sonographer (I am probably forgetting someone).  Finally, you will meet the doctor you came to see.  FYI: Most fertility clinics in Florida have several doctors at a practice, along with several locations. You will travel and you will most likely see various doctors (unless you start speaking up, that will come in a later post).

Anyways, this first meeting with the doctor is a whole lot of talking, with a whole lot of jargon.  You will NOT understand it.  But again, there is a bright side! Just think, one day you will know all of these processes and terms he described so well that you, yourself, could be the specialist without any schooling.  The one thing I actually do remember amidst all the jargon was that horrible percentage thrown out at us again of  “1%.”  UGH.  Additionally, he informed me that all of those tests that I did that came back normal didn’t count anymore.  They needed to do them again at their practice to be sure.  Insurance did cover these tests since they were considered “diagnostic.”  Another silver lining…I guess.

#infertility, testing, bloodwork

We did as we were told.  He repeated the count & I my tests.  My tests came back normal again, heck I even had a good number of follicles each month! The doctor called with his results about a week later.  It wasn’t a fluke like we prayed.  The extremely low number had just gotten lower. That’s when he requested to see us again to decide on how we would like to proceed. I cried myself to sleep that night.