Saturday, December 8, 2012

It's Ectopic...Slight Change of Plans

Nothing like a shot of chemo in your ass to start the weekend off right! Really, can this week take any more turns?  I better not say that out loud and test fate, because Lord knows it will the moment I even mutter the words.

A week ago I found out my hCG levels were dropping and that this was turning out to be a non-viable pregnancy. We met with our RE, talked about a plan going forward, and felt that although things were not ideal, at least we had a plan.  I became a toilet paper detective and just kept waiting for the miscarriage to take it course.

Well fast forward to a few days later, and upon another follow-up hCG blood draw, they realized that my hCG was increasing, and not in a good way.  It went back up to 205 from 185. It's supposed to be dropping! When this happens, it's an indication that the pregnancy is not taking care of itself naturally on it's own. I did a repeat test the next day and it was 207. They asked me to come in for an ultrasound to see if they could locate the embryo in my uterus, and they could not. The reason they could not see an embryo in the uterus could be one of two reasons...

1) My hCG never reached 1000, which is when you can usually see an embryo via ultrasound.
2) The embryo had implanted inside of the fallopian tube, rather than the uterus, where it's supposed to.

With the recent findings that my hCG is being wacky, I've been spotting for over a week now, and there is no embryo detectable in the uterus, it was determined that this is very likely an ectopic pregnancy. I was not shocked to be honest. All week I have been worried that something wasn't going as planned. I've had an early miscarriage before, and something here was very different. There was no real cramping, bleeding, and it had been a week already since receiving word I should be expecting to miscarry any day. I just knew something was off, and call me psychic, but I had a feeling they were going to say that the hCG wasn't dropping. I had even told my husband every day of the week, something is not right here!  I think he finally believes me now.

Apparently only 1% of the population has 2 or more miscarriages and only 2% of pregnancies are ectopic. I feel like I have won some sort of twisted lottery.  Ectopic pregnancy can be VERY dangerous, so I'm glad I was being monitored so closely and realized this somewhat early. What I'm not as thrilled about is that this means there was something that caused the embryo to implant there. By something, I mean disease, damage or blockages in my fallopian tube(s). That is really the only reason an embryo would implant in the tube versus traveling into the uterus to implant correctly.  I had an HSG (hysterosalpingogram) in Sept. 2011, which showed the dye used in the procedure traveled through both tubes into the uterus. However, it's still possible that I could have endometriosis inside the tubes not quite detectable via the HSG and/or there has been new damage that could have formed over the past 1yr+.  Really the only way to truly know what the inside of your fallopian tubes look like is to do laparoscopic surgery, something I haven't done because we've felt the risks outweighed the benefits thus far.

Finding another piece to this puzzle is a major game changer. Why? Well, it explains a lot. It could explain why we've been trying so long without a successful pregnancy. In fact, my RE said that my first miscarriage could have even been ectopic, but that we were lucky and it took care of itself naturally that time. It could have also just been a genetic defect. There is no way to ever know now if that was the case with #1, but it's certainly plausible given the recent development with this pregnancy. It's also a game changer, because it totally changes our RE's recommendations for treatment going forward.

Our initial plan was to hope that hCG dropped to zero on it's own and proceed with another Femara/IUI cycle....pretty easy right. However, since it didn't, I was given two shots of a chemotherapy drug called methotrexate to make sure the embryonic cells stop diving, and that the embryo doesn't continue growing. If we did nothing, the pregnancy could continue to linger, possibly grow a little more inside of the fallopian tube, and could cause tubal rupture and could be life threatening. The only other option to end the pregnancy would be to do surgery to physically go in and remove it. No way I am going to choose surgery over a simple shot, especially when surgery has it's own risks. Hubby and I asked A LOT of questions about the methotrexate, and all parties determined this is the easiest and best option for us to make this end as quickly and safely as possible. It's pretty standard protocol for ectopic pregnancies actually.

The other big game changer is finding out that obviously something is obstructing at least one of my tubes that we know of at this point. People who experience ectopic pregnancy have more trouble getting pregnant AND are more likely to have another ectopic pregnancy in the future. Because of that, our doctor's recommendations going forward have also changed. Yep, you guessed it....IVF. I never thought we'd get to this point, and I really hoped we wouldn't, but now it is looking like the smartest course of action.

In Vitro Fertilization was actually invented as a sole treatment for people with blocked fallopian tubes, but it's now used for many more infertility related diagnoses including:

-sperm production, number, or function
-endometriosis
-pelvic adhesions
-tubal blockage
-diminished ovarian reserve
-abnormalities involving the uterine cavity or cervix
-ovulation disorders
-unexplained infertility
-recurrent miscarriage


Obviously, we have been trying everything we possibly can to avoid doing IVF. It's invasive, difficult emotionally and physically, and as we all know COSTLY! However, looking at everything we have been through over the past 18 months (and really starting in 2008 when I became anovulatory for 2.5 yrs straight) I think it's safe to say I fit the description for someone who may need IVF if I ever want to have a family. Out of the list above I have been diagnosed by a reproductive endocrinologist with 6 out of 9 of those listed diagnoses above, 7 if you count the possible endometriosis my RE suspects is in my tubes. I think I had an "aha!" moment reading that list yesterday, realizing that IVF is likely our best option considering the circumstances.

Sure, plenty of women might choose to give it one more shot with IUI, but if I do that and do become pregnant, I'm still more likely to have another ectopic. I honestly don't know I would be able to endure another pregnancy loss, and it doesn't seem smart to continue putting myself at risk when we know the possiblity is pretty high that could happen. I could choose to have laparosopic surgery to go in and definitively diagnose and remove endometriosis or whatever is blocking my tube(s), but anytime surgery is done on the female reproductive system, there is high risk of scarring, which would just end up causing more blockages in the future. Surgery would also require quite a bit of recovery before even being able to try again, and then who knows how long it would take to become pregnant again. Even with injectables and IUI (my best case scenario outside of IVF) we'd only have about a 20% chance at conception each month we tried. Furthermore, if it's endometriosis blocking my tubes, and we remove it via laparoscopy, it can just return again rather quickly within months. Laparoscopy is many times more of a bandaid than it is a permanent solution. We are really analzying our options from all angles, and continuing to discuss things, but as of now it's really looking like we may proceed onto using IVF.

I am still continuing to do recurrent miscarriage testing in the meantime. My RE did a few tests, and I tested positive for cardiolipin antibody. This antibody is found in those with antiphospholipid syndrome, and can also be a cause for miscarriage (usually late term miscarriage). We don't think this could have caused any of my issues, but it's good we are testing for things across the board. In light of finding that I carry this anti-body, I will most likely begin taking a prescription blood thinner when I become pregnant again. This will help reduce any risk of a later miscarriage ever occurring.

I'm also being referred to a top notch hematologist/oncologist, Dr. Dudley Youman, for further testing. He was actually Lance Armstrong's oncologist, so I think I will be in good hands. I will call Monday to make an appointment for a consult and complete blood work-up. Even though he's not a fertility specialist, my RE has worked with him for years and is referring me to Dr. Youman because he is simply the best when it comes to hematology. We want to make sure I am uncovering any auto-immune or blood disorders that could cause issues that we haven't thought of. I love that my RE is so thorough and entertains every last concern I have....I am one of those people who asks a bazillion questions, and he makes sure they are ALL answered to my satisfaction. I am happy to make the visit to Dr. Youman if it means dotting more i's and crossing more t's. We want to make sure that if and when we choose to do IVF, that we are not missing any other pieces to the puzzle first.

Over the next couple of weeks, we'll continue to monitor my hCG and pray that the methotrexate works accordingly. I've been given a list of things I can't eat or drink while on this drug, and unfortunately alcohol is one of them. Kick me while I'm down why dontcha?! In spite of all the ups and downs this past week, we are still thankful for a lot. I don't know if I am truly becoming numb to it all at this point, but I haven't cried in a couple days. I am really just thankful that I didn't have a tubal rupture. I'm thankful that I have an amazing husband, and that he is healthy. I am thankful I have a specialist I completely trust who can guide us. We are thankful for more things than I can even write here, and it's those things that are keeping us going.

40 comments:

  1. So, so sorry about the Ectopic. OMG that's terrible. On the other hand it sounds like it's given you some answers and a plan. I'm sorry you will likely have to do IVF. I have heard (from one woman I know who did it, and read from others online) that's it's one of the hardest things you'll do. However, you've already been through so much and if this is your best chance for a take home baby (or two) then go for it! It sounds like you have a great doctor and supportive husband. I wish you the best of luck.
    ~Emily

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    1. Thanks Emily! I am definitely trying to remember that even though this plain sucks, it has given us some answers. It's definitely introduced a new piece to this crazy puzzle, and if nothing else, we're thankful for that. Learning this may end up saving us more heartache and time wasted than there would have been without knowing this tidbit of info.

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    2. I agree. Yes, it does plain suck... and I hate that people have to go through such a difficult journey to conceive. I look forward to following your story. I agree that getting pregnant again you'd worry so much about another ectopic. So it's a double edged sword. GL

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  2. I am so so sorry....that sucks!! I am with ya...13 losses consecutively, and two ectopics in a row...My RE said i was some kind of medical anomaly...bleh! ask for a HSG first, to see how your tubes are before rushing into IVF- a LOT of RE's are just IVF happy now cause it puts more $$ in their pocket...Just do some looking, and searching before rushing into anything...some women have ectopics, and there is no obstruction, it can just happen...I had the two ectopics back to bac, and had a HSG after the second one, and both tubes are still open and clear as a bell, and a HSG is a piece of cake compared to IVF....xxxx's and lots of prayers....try to rest, metho is NO fun, and makes ya feel like POOP for a few days...you may even lose some hair next couple of weeks...here is hoping your HCG hits 0 soon!

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    1. Totally agree Megz. My RE already suggested we do an HSG once the ectopic is gone. Believe me, I will be the first person to distrust any recommendation I feel is rushed or unwarranted. My RE has never pushed IVF on us. In fact, even knowing we've done 2 rounds of Clomid, 4 round of Femara and 2 IUI's, as of Monday he was still recommending we go right back to Femara/IUI for at least 2 more cycles before even moving onto injectables. It was only after things changed and this turned into an ectopic pregnancy that his recommendation for treatment did also. I'm not naive to the fact this is certainly a business like any other, but I don't get the feeling at all that his recommendation for IVF now is based on that. I truly believe he's got our best interests at heart and is just trying to give us the best chances to have a viable pregnancy and also reduce the risks for further damage to my reproductive system...and also our sanity.

      There is definitely nothing set in stone, and things change fast in this infertility whirlwind, as you know. We are waiting on the rest of my recurrent miscarriage testing first, and are taking it one step at a time, analyzing it completely to death before we decide anything for sure. So far no side effects from the metho, so keeping my fingers crossed it stays that way!

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  3. Wow, glad you and your doctor caught this before it became life threatening! Your positive attitude is contagious and inspiring. You'll get your family. This just put you one step closer by understanding just a little bit more about your body. I am thankful you are safe!

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    1. Me too! Thank you so much! I have heard many worse stories coming from ectopic pregnancies, so we are grateful indeed!

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  4. Oh Emily, I'm so sorry about the ectopic! That was the hardest thing I ever had to go through...but then again, mine wasn't caught until I was 7 weeks along, and by that time, my tube had ruptured and I was bleeding internally. You are so lucky (seems weird to use that word in this context) that you are being monitored closely and they caught it early enough for the metho shot. Due to my rupture, I ended up losing both tubes. Something that I am so glad you won't have to face.

    As for IVF, it was quite a shock for us when we learned that this would be our only option for having a baby. It took me a while to come to terms with it. But after a while it just became what we had to do and we went into survival mode, determined to do whatever we had to do to get to our baby. You still have options...but as your RE said...IVF may be the best one at this point.

    I had an HSG done after my second tube was removed and the results came back as quite a shock. It showed that one of my tubes was still open? Huh, how can that happen when they had both been removed? My surgeon said that sometimes the cut and burned portion can fall away (kinda like a scab) and fuse back togehter. She said it was not very common, and more like a miracle...but that may have been what happened. When we first found out this news, we wondered if we should hold off on IVF and TTC naturally with this new development. Was this God giving us a sign? Telling us to trust him and he would provide? We were so tirn on what to do next. However, once we thought more about it, we wondered if TTC was really the smartest move. As you said, once you have an ectopic once, you are likey to have one again. And being that my tube was surely damaged from the surgery...we just knew that another ectopic was something we weren't going to risk. The first one was extremely hard on my body and mind. The surgeon said I was lucky to be alive. That is why we moved forward with IVF. It was the safest option for us and gave us the best chance of having our baby. It seemed like a no-brainer once we really looked at all our options.

    You and DH have to make the best decision for you and your body. And I know that with lots of prayer and consideration you guys will.

    I think of you daily. I will pray that the metho shot will do like it's supposed to do and take care of the ectopic so that you guys can move forward with whatever the next step will be.

    Lots of hugs,
    Kara
    www.waitingonbabyb.wordpress.com

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    1. No doubt I'm lucky Kara. I was 6 1/2 weeks yesterday when I found out, so no telling what a few more days could have done. I'm hoping the methotrexate is doing it's job ok in there!

      I think you really made the best decision in your situation too. I can imagine how hard that must have been, especially knowing this miraculous thing happened with your tube, but you're right...the risk was still higher for you for another ectopic no matter what. It sounds like yours was a really close call, and you are smart not to risk your own life in order to create life if you have another safer option. The last thing your husband needs is no child and then no wife! I'm sure he loves you waaaaay too much to risk that even a little bit. Thanks for your prayers! Keep 'em coming please!

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    2. Emily, my HCG at 7 weeks with my Ectopic was over 5,700 when my tube ruptured so metho wasn't even an option for us. So thankful for you that it was caught in time so that this is an option for you. Praying that it will do as it should so that you can pick yourself up and move forward again, like you always do. Your courage, faith and positive attitude always inspire me. Thank you for this!

      Hugs,
      Kara
      www.waitingonbabyb.wordpress.com

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  5. Ugh. I'm so sorry about the ectopic and that you are having to deal with the metrotrexate. On the other hand, I'm extremely relieved that your doctor was on it and was able to get you on a new plan of action before it became a surgical necessity. My ectopic numbers were similar to yours and the metrotrexate did it's thing. (Though I'm quite certain I still had a few cocktails...oops?!) I'm sorry that you're going to have the financial and emotional burden of IVF, but at the same time, I'm very excited for you because I know this is going to all work out for you. Sounds like you have a great doctor. Can't wait to hear how things go, I have a feeling we're right behind you with IVF.

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    1. You had cocktails? I'm tellin!!! haha! I'm sorry to hear you are right behind us with IVF. We're not rushing into it quickly at all. Still a lot of tests to be run on other things that could cause recurrent misarriage (just to be safe) and then best case scenario we're looking at egg retrieval in February. I would love to have you as an IVF buddy though if you do it!

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  6. How horrible! I'm so sorry about the mtx injection, I was on it for three years for RA and I hated it! I felt just awful and coincidentally it felt like clomid to me which is why we did the femara route. I hope this is over for you quickly and that the side effects aren't too bad. I'll be continuing to pray for you as you are going through this that you will find peace and comfort.

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    1. Thanks Elizabeth. Still no side effects, other than being tired, sleeping really well, and having some crazy ass dreams the past couple nights. Not sure if that's a side effects, but my dreams have never been so crazy and I haven't slept this well in weeks!

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  7. Emily, you have no idea how sorry I am that not only you had to deal with one miscarriage, followed by a one year struggle to conceive, then to face a second miscarriage, and finally discover that it's probably ectopic. There are no words for how unfair or horrible all of this is, yet there you are looking at the silver lining and planning for where to go from here. You always keep going, you have no idea what a strong and amazing person you are. I am so glad you have such an amazing RE and I have no doubt that you are following the best course of action. Third time's the charm, I know it! *so many hugs*

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    1. Thank you for saying that Amber. I sure don't feel so strong many days, but I appreciate you saying and thinking that! I pray that third time will be the charm as well. XO

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  8. I just so happened across your blog today. I am so sorry you are going through this. I am no stranger to multiple losses, with a miscarriage and back to back ectopics (right tube, then left tube) under my belt. The first one was treated successfully with mtx, the second resulted in my tube being removed. The mtx wasn't too terrible, just made me feel blah for a couple days. I agree that a hsg is a good idea. And I too am just not ready to give into if, even though my ob and re think it's the way to go. I am actually in my first tww since January, after convincing the 're to let me try again, knowing the odds were against us. I can't justify ivf not knowing if the next time would work. Don't let anyone bully you into some procedure you aren't ready for. Only you will know when it is time to try something else. Wishing you a speedy recovery. :)

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    1. No worries. This girl can't be bullied into anything. I am way to controlling for that. lol ;)

      Thank you for the well wishes. I really hope you do not ever have to go through another ectopic either!

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  9. *not ready to give into IVF, stupid tablet chooses words for me...

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  10. Oh Emily, its always something isn't it?! I'm so sorry about the ectopic. I know how scary those are! I'm praying the methotrexate does the trick. But I'm so sorry.

    Wishing you the best as you move forward with more testing. I know IVF sounds so overwhelming and scary, and really it is the most stressful thing I've ever put myself through, BUT you'll get through it if and when you're ready! I'm here if you have any questions and I'm rooting you on!

    (((HUGS))))

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    1. Thanks Katharine. Following your blog has given me at least an idea of what it might be like. I've never even done injectables, so moving to IVF is quite a leap if/when we do it. It's so great to see what others have done...especially those who have had success like you!

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  11. I'm so sorry it was ectopic! But glad that was discovered before it became a bigger danger to your health. Wishing you all the best - if IVF is indeed your next step, I have no doubt you have the positivity and strength to get through it!

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    1. Thanks Alie! I figure if I've made it this far, I can handle IVF if that's the course we take! I am really becoming more ready for it already the more and more I think about it.

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  12. It sounds like your RE is doing a great job being thorough. I'm so glad to hear that. I'm glad you are on board with IVF! It took me a loooong time to come around but once I did I was like, ok, I can totally do this. At this point I'm so excited to have a real shot at getting pregnant that IVF seems awesome. I think it will work for you! I'm KMFX!

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    1. I kind of agree. If IVF will give us the best chances for a child WITHOUT risking another ectopic, then it's worth it. Of course there are never any guarantees, but still worth it in our book.

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  13. Wow...I just found your blog and read through your posts. First of all, your blog is beautifully written and I feel like I was following your journey with you step by step. Secondly, I am so sorry for what you are going through right now. I have a friend who just went through her first IVF cycle and I am amazed by her strength and I see the same strength in you in all that you are going through. Best wishes....

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    1. Thanks so much for the compliments and sympathies. I'm glad you found me here. Thanks for reading! :)

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  14. I'm so sorry you are having to go through all this, but so glad your doctor is on top of things and taking care of this before it could've gotten much, much worse. Your outlook is so optimistic and I'm glad your RE is doing everything to possible to help you obtain the family you so desire. Much love and prayer going your way!

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    1. Thanks M. I'm learning all kinds of stuff in this process. Had more testing today for anti-clotting factors and auto immune issues which tend to cause later term miscarriages. We are leaving no stone unturned before going at this again!

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  15. I'm so sorry that it sounds like it was ectopic but I am glad it was caught early enough that it didn't cause you to be hospitalized or worse. I am continuing to pray for you, and I am so confident that IVF will be a great solution, even if it wasn't your first choice. I'm also so glad you are seeing such capable doctors. I know they will take good care of you and do all they can to help you.

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    1. Thank so much Farra. I hope your little bean is growing bigger and stronger by the day! Miss you girlie!

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  16. HI there - I'm SOOOO glad I stumbled upon your blog. I was just diagnosed with some of the same things as you - hypothalamic amenorrhea (anovulation due to weight/stress) and DOR - I'm 30y/o.

    You have had quite the journey thus far and I'm so sorry for your loses. I'm glad that you are seeing specialists that can get you to where you need to be.

    Sending loads of positive thoughts your way.

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    1. Yeah, when this whole journey started I thought I just needed to stop exercising so much and gain some weight...which DID help me start ovulating again, after being anovulatory for 2.5 years. However, I never imagined uncovering the other issues I've experienced along the way. I would never wish this journey on anyone, but in some ways it's good I'm finally finding out what the problems at hand really are. Best of luck to you Katie! :)

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  17. Emily, sounds like you have a caring RE. Most doctors would just dismiss this info because they really dont have answers as to why it happens. I am glad your RE is taking the initiatitve to help you ease your mind and give u a new form of direction. Keeping you in my prayers that IVF will bring you, your bundle of joy.

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    1. Thank you! Thank you! We appreciate the support!

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  18. Hey Emily -- I'm so sorry to hear you're going through all this. I'm also a survivor of an ectopic, but I wanted to throw in my two cents here. My RE really stressed that ectopics aren't always the result of a problem with your tubes. In fact, if you've had an HSG give the "all clear", he said it's usually due to a bad egg. If the egg is growing at the wrong speed, it becomes "sticky" at the wrong time and implants itself into the tube instead of the uterus. And while women who've had ectopics do have a higher risk of having one again, that still only gives you a 1 in 50 chance of having another... most simply go on to have a normal pregnancy.

    Anyway -- I went on to have another four IUIs after my ectopic and never had a second one, but I'm now planning on doing IVF in the new year (thanks to BFN after BFN). So definitely just do what's right for you, and whatever you feel good about. Hang in there during this lousy time, and try to look forward to new beginnings in 2013!

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    1. Thank you so much for the input. Yes, I realize it isn't 100% due to a blocked tube, but only likely that is the case. It could have been a bad egg. All I know is that ectopic is more likely to occur a second time when conceiving in the traditional way and I don't want to go through this again. From what I've researched, it's about 15% likelihood that if I try again via timed intercourse or IUI and that IVF will drop those odds to only 1 or 2%.

      I think our choice to move onto IVF isn't just based on the ectopic, but rather the ectopic in addition to the fact I have DOR, possibly endometriosis (we're not sure because we've never done a lap), ovulation disorder, uterine septum, etc. etc. I'm turning 35 this year and time isn't exactly on my side with DOR, so just trying to be proactive. We still haven't signed on the dotted line though, so will definitely consider all angles. Thank you so much for giving me something to think about! I hope that your IVF works the first time and that you can end this journey and replace it with more fun memories very soon too!

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  19. I am so sorry! I had an ectopic pregnancy spring/summer 2011! It took a total of 10 weeks to get through it all! I wish you all the best. Take care of yourself, it can be dangerous. I wasn't allowed to lift anythign or even drive to work! Score for me, I worked from home, under doctor's orders, all summer! Since then, we have been having issues TTC. I just had my first IUI 2 weeks ago...still waiting to see if it worked, but my hopes are not high :(.

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    1. Oh Lord, I hope this doesn't take 10 weeks. I am already going a bit batty. Thank you for the well wishes. I hope your IUI is successful and that you can be done with the TTC process very soon. I know it's supposed to be this joyous occasion to create another life, but as you probably can attest, things kind of change when you go through experiences like these. Wishing you nothing but the very best!

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    2. My progress was slow in getting my hcg levels down! I hope that you heal faster than I do and get all the answers that you need too! I really sucks to have these kinds of "experiences" in common with people, but I will keep you in my thoughts and prayers and hope for the best for you!My experiences while my hcg levels were coming down seem to mirror yours somewhat, and I must warn you - it gets worse before it gets better! But the good news, it gets better! Hang in there and take it easy! I pray that yours heals itself and no surgery is necessary :)

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