Wednesday, June 6, 2012

i should probably be expecting the unexpected by this point

I had my follow-up appointment to have another ultrasound of the cyst from hell yesterday. This was supposed to be the appointment where they said "it's all cleared up, you're good to go, see ya lata alligata!" and I'd be out the door in five minutes.

It didn't really go that way.

I thank my awesome sense of intuition and reading people for tipping me off early. The ultrasound tech (whom I love) was all friendly and chatty at first, joking and talking. She confirmed my expectations: "we're just going to take a look and make sure it's all cleared up and then you'll go talk to Dr. L before you go, okay? I'm sure it will be great!" And then a minute later, she gets all quiet and nervous and keeps changing the subject...and asks if I remember when my last ultrasounds (not the ones from April, but from back when I was having treatments/monitoring) were so that she can make some comparisons. That was my first clue. And then they decided to put Matt and I in an empty exam room for 30 minutes before Dr. L would see me in his office...while he and Ultrasound Girl looked over some things.

Dr. L calls us in and shoots straight with us. Like I'm about to do with you. I will put my own thoughts/comments/editorializing in red so that you know what's really up.

There are a lot of kinds of cysts. Apparently I have all of them. They should put me in a museum. The cyst on your left ovary is still there and it's growing (shows me a really sad, empty-womb ultrasound picture with a big blob on it that is supposed to mean something to me). It's about 5.5 centimeters long. (Holds out his fingers 18 inches apart from each other or so, to demonstrate) It's actually an endometrioma. There are a lot of similarities in the symptoms of endometrioma complications and hemorrhagic cysts, and they are often confused. On your ultrasounds in April, there was so much fluid/swelling/etc it was difficult to tell what the issue really was, which is why we needed to follow up. Unfortunately, now we can see that it's an endometrioma. It will not resolve and will continue to grow. I asked if it was present on my ultrasounds from late 2010. He said yes, it was present then but only 4.2 cm. Those ultrasounds were done as part of a follicle study (I was on Clomid, doing an IUI cycle) and so I had LOTS of follicles/cysts at the time...this one was one of many, but was to be expected due to the Clomid. And after that cycle, I basically stopped doing IF treatment and never had another follow-up baseline ultrasound. So this guy's been hanging out for a long time (probably since long before I did Clomid), just...growing. And now, apparently, starting to cause me some problems. I asked him point-blank: "You're telling me this is an endometrioma... does that mean I have endometriosis?"

Yes.

I have endometriosis.

We talked for awhile longer. Of course, this could be yet another reason why we can't get pregnant...but probably (in my opinion) not the major reason. Remember, having sperm is considered really helpful when one is trying to become pregnant. We don't really have a lot of sperm to speak of. So I'm not pegging 3.5 years of infertility on this. But I can certainly see it as a major contributing factor. I guess it's only fair that we should have EVERYTHING IMAGINABLE WRONG WITH US. But I've digressed.

I will need surgery to remove the endometrioma AND to give them an opportunity to see whether there are other ones lurking in places the ultrasound can't see (behind organs, etc). Because I have very few of the other typical symptoms of endo, I am hopeful that this is the only one and that I'm a very early Stage 1-er. My doctor sort of poked holes in my optimism, though, when he told me 8 different times that although he could do the surgery himself, he really would feel much better about me going to the specialists in Atlanta. Something about the size, the placement, and the 'intricacy' of this particular growth that he just didn't feel qualified to deal with. I appreciate his honesty, but also thanks for making me feel like a medical freak. He repeated multiple times that this should definitely give us a better chance of getting pregnant. I kindly reminded him multiple times that this doesn't fix our sperm issues, but thanks. I also asked whether my insurance would even cover the surgery, since infertility stuff is all excluded. He stated that he considered the surgery to be "medically necessary" completely regardless of infertility. I'm not sure if that made me feel better or worse.

So he's going to have a consultation with the surgeons in Atlanta and make a game plan for us. He will get back to me later this week and let us know what's up. Surgery will be in my near future. Yippee. Awesome.

Of course, hindsight being 20/20 and all, I now do recognize some of the symptoms of endo developing over the last year or so. And although nothing has been unbearable up to now (April's experience excluded, of course)...I can extrapolate what the future might be like if the endometrioma(s?) keep growing, and that's not a future I would want to experience if I can prevent it. So I guess I'm glad they figured it out. But honestly, since pregnancy is really not something I even have any expectation of anymore...this really just feels like a giant waste of emotional time and energy. Like, it's needlessly emotional because of the geography of the area involved and the ties to infertility and fertility treatment. I don't know how to explain it. I'm tired. Maybe I'll have better words later.

I just wanted to update. Sorry if I'm fresh out of optimism, but...yeah. It is what it is. My life certainly hasn't gone according to (my) plan up to now, so I should probably have expected that it would continue to veer off course, just in new and exciting ways, right? Or something. I'm trying desperately to hold onto some hope that SOMEONE (hint, hint, GOD) has things under control, but...some days that's harder to cling to than others.

At least I'm going on vacation soon, right? There's always that. 

Thanks for listening. And clinging to Hope on our behalf. I really appreciate it.  

23 comments:

  1. Hugs girlie! Getting news (the unwanted kind) is never easy. This is all part of your story, once which is special even when is seems as if it's not! Hang in there and keep us posted so we can keep you in our prayers during your surgery.

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  2. Boo hiss. That's all I have to say :o/

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  3. Yesterday I felt like I didn't know what to say, and I still don't. I'm so sorry and I still cling to hope for you. And I hope you at least got some sweet new plants (and candy) out of this yucky day.

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  4. Ugh, I'm sorry :( Just really sorry :(

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  5. Ugh. Sorry about the new info. I have the same kind of cysts (endometrioma) on BOTH of my ovaries. Although not comforting to you right now, I think it is a good sign that your doctor wants you to see a specialist for the surgery. I mean, this surgery is WHAT THEY DO and they are really good at it. And even for these annoying bumps in the road, you deserve the best, Erika! Depending on what they find (I'll be praying for early Stage 1) I have lots of endo resources I can e-mail you about. There is an online "guide to laparoscopy" that really calmed me down when I found out I'd be facing surgery (this woman talks you through EVERYTHING to expect and makes it not scarey). I know it sucks, but you'll get through this! Thinking of you!!

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  6. Big hugs to you and Matt. We are praying for you.

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  7. I am so, so sorry friend. I don't really know what else to say...praying for you!

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  8. When it rains, it pours....I'm so sorry. You have every right to be discouraged. I hope that this diagnosis brings you one step closer to your baby. Hang in there, God has a plan for your family!

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  9. Sending hugs and prayers. Hopefully this will allow you guys to go in the right direction of achieving the baby goal :) I can't wait to get there! Knowing if half the battle, I always say.

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  10. So sorry Erika. This really stinks. Please keep us updated.

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  11. I have a sweet friend that has endometriosis. After battling infertility, she adopted three children and then has given birth to three more...

    I also wanted to tell you that I saw a zillion of your favorite flowers out today and I had lots of prayer time between houses we saw today. Your friends will hope for you when you are too tired. ((HUGS))

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  12. Well this sucks.
    I read this the other day, "God doesn't waste pain." believing that for you, friend.
    Love you.

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  13. Praying for you! I'm so sorry to hear this, but am thankful that they are catching it now before it is a major problem. I also can't tell you how many people I know who have endo and end up surprisingly pregnant after they had either tried every IF treatment, exploratory surgery, or just plain given up hope. God still is in control, He still loves you, He will never let you go. Draw near to Him even when you don't feel like it and the rest of us will pray you through. love you.

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  14. Ohhh I am so sorry to hear this. =( I had endometriosis and had laprascopic surgery in December to help correct things. It's definitely not a walk in the park, but hopefully it will help. I'll keep holding onto some hope on your behalf, I know this is a hard journey. Hang in there girl!

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  15. You've got to be kidding me. This seems like the cruelest joke. Your sad news has been heavy on my heart today. Know that you're not alone and are surrounded by prayers.

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  16. You are frequently on my mind and in my prayers...this does seem so cruel and ironic but I know God has a plan for all this pain! Beauty from ashes!

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  17. Hey friend, I'm finally getting back into the blog world and this post has weighed heavily on my heart! I am so sorry to hear this news, and the only encouragement I know to offer is prayers and a listening ear if you ever need to vent! You are such a strong and brave person... hang in there and know that God is good and He truly does give us only what we can handle. What blessings you will reap from this trial! I know it!

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  18. Thinking and praying for you much.

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  19. I don't know the reasons why things happen, but I know there is a reason. This sounds like a completely awful thing to endure, but you never know where the path may lead you. Sending blessings your way

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  20. UGH! Infertility sucks. Hugs to you girl!!

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  21. I am praying and praying and praying some more. Know that you are surrounded by prayers.

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