Wednesday, July 8, 2009

Not what I expected

So surgery is off the table right now. Or at least postponed for a couple months.

I was very surprised by this. Quite shocked, actually.

Yesterday, at my appointment, Dr. L looked at my pictures of my pelvic region taken during my first surgery (which was just diagnostic, so they were "before" pictures) and thought it didn't look all that bad. While my ovaries were enlarged due to big endometriomas, she thought the amount of endo everywhere else was small and mainly superficial and the cul de sac didn't have any endo on it, which was good (umm.. I was very surprised by all of this since I've been thinking for the last two years that my abdomen was ravaged by endometriosis. Dr. Hi.lgers definitely led me to believe it was pretty bad. Heck, I needed an open surgery!). Then she asked what dose of Tamoxifen I'd been taking and apparently it was a pretty low dose, so she wrote me a prescription for 40 mgs and said she wanted me to take that for two months and then if I wasn't pregnant, we'd look more into a surgery.

WHAT?! I was so surprised as she left the office to write the prescription that I didn't know what to say. Ryan asked more questions when she returned, but nothing she said helped me to understand any more. I just got the feeling that she wanted to take a conservative approach because surgery is always a risk.

I'm still not quite sure how I feel about this. I was all prepared for a surgery. Not that I wanted to have surgery, but I had accepted that it was a necessary evil, and even more, it might have been the answer I'd been searching for. I was expecting to leave her office with a surgery date and my parents were making plans to come down to visit as I recovered.

And let's not forget that I have pain on my left side, near where my ovary probably is, and right now there is no known reason for it. The pain is nothing like my endo pain prior to my surgery. And it happens at very different times than the endo pain did. I could possibly have an endometrioma again on the left ovary (that was the really bad ovary, which was five times the normal size due to an endometrioma), but Dr. L said that would have shown up in the ultrasound I had last month.

I just believe all of that points to one possibility - adhesions. And if they are there, then I'd like to attempt to have them removed.

I mean, clearly something is keeping me from conceiving.

Two more rounds of Tamoxifen, just basically to rule out the effectiveness of a higher dose, seems like a lot more waiting when all I've done is wait for the past five years. I guess two months isn't a long time though, in the whole scheme of things.

Honestly, I'd probably be more upset about this if it weren't for the fact that I have an appointment with Dr. B next Thursday to discuss my low adrenal levels. At least I will be able to discuss this with him and get his opinion on putting off surgery. After all, he was the one who suggested it.

Oh, and Dr. L also suggested having an HSG done in the meantime just to make sure my tubes are okay. I dread having that done outside of surgery again, but one thing about that procedure actually piqued my interest, and that was when she said it might also let her see if things were moving freely in there. I guess that would at least give us some idea of whether there are adhesions.

I also asked her about my low adrenal test results - just to get more information of course! - and she looked at the test results and said they were depressed all day. She didn't really have much to say about that and when I asked if that could be affecting my fertility she wasn't really sure. But at least I found out more details. And GIMH did me a favor yesterday and asked Dr. B about low adrenals (isn't she sweet?) and he told her that there isn't really anything you can do for it. Of course, I know from many of you that there are treatments, but I'm assuming he doesn't believe they are really effective. I am going to ask him about treating it next week, so any information any of you can give me on treatment plans ahead of time would be greatly appreciated.

In cycle news, I think I am on day 16. As far as I know at this point, yesterday was most likely my peak day. This has actually been my most normal cycle in basically forever, so I guess that is good. For the first time in years I didn't go straight from red stickers to white stickers. I actually had some green stickers in there! Not sure what that means, if anything, but all I know is it looks more textbook, that's for sure.

And although I'm on no Tamoxifen or B6, I still had normal mucus. The quality became increasingly more peak-like over a span of five or six days, and then on both days 14 and 15 I saw 10KL x2.

When I told Dr. L this she was not surprised. She said it happens sometimes that women have their best cycles after discontinuing medication or just taking a break, since the medication has built up in your system and is still having an effect on you.

Well I guess I'll just look forward to my appointment a week from tomorrow and hopefully I'll have more of a plan in place after that. It's just so frustrating - we've been trying for nearly five years, tackled multiple problems, and we're still no closer to a pregnancy than when we started. Such is the life of an infertile woman, I guess.

14 comments:

  1. Yeah, I hate when I go in with one expectation and get something else thrown at me. But, wow. To be told what you thought for the past couple of years might not be the case . . . just crazy.

    Are both Dr. B. & Dr. L ob/gyns? or is one a different specialist? Did Dr. H ever tell you what stage? Every thing I've read with endo. is that the Dr. evaluating the severity has to have a lot of experience in that particular area; but that's all I know.

    I hope others chime in and give you good info. on the adrenals. I'm interested, too.

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  2. Dr. Hilgers called it "stage 3.5 to 4". I still believe that to be true, and so does Dr. L, but apparently it got that high of a number due to the endometriomas on my ovaries. I guess it would have been lower if not for them. I just didn't know until the past couple days that the actual endo every where else wasn't as severe as it could have been, and I guess that cul-de-sac thing not being effected makes it a less severe case. I'm assuming that if it weren't for the endometriomas, it would have been stage 3. Of course, that's all good news I guess.

    Both Dr. B and L are ob/gyns and are considered to be the two doctor at the practice who deal with infertility. Dr. L is also a surgeon who was trained by Dr. Hilgers.

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  3. I know there is some greater purpose in why you aren't going to have surgery now. I just pray that God will give you some guidance to know what to do next. Also, I'm sure you'll get a better understanding of your action plan at your next appt. with Dr. B! :)
    Was Sophie glad to see you now that you are home? I bet she missed her momma!

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  4. I totally understand your frustration about preparing yourself for a certain thing just to learn that it won't be happening. I, too, recently had a setback of two months. Everyone keeps saying that in the grand scheme of how long we've been trying (6 years), two months is a drop in the bucket. While that is true, I don't think we infertiles are ever okay with waiting to move forward. It makes one feel so idle. Know that you're not alone in your TTC journey.

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  5. Oh, okay. It escaped me that they were apart of the same practice. I looked at their website when you or GIMH posted a link a while back, but I just didn't make the connection.

    I hate all the confusion and uncertainty you're going through. I'm glad you've got another appointment coming soon.

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  6. By the way, don't you think our husbands look eerily similar?

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  7. I know that having your expected treatment be changed or put off can be annoying, but I hope that everything will work out for you. I hope you get some relief regarding your adrenal issues and that your appointment with Dr. B goes well.

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  8. Gina - Oh my gosh.. they really do!!

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  9. K,
    I would be so frustrated aout the surgery. Only because once I get my heart and thoughts set on something it is hard to change hte plans. I mean I feel like I probably would have been mentally preparing myself for that option so I can see why you're frustrated. Maybe that is what you need ( a higher dose of T.) I hope this really works for you!!! I'll definitely be praying. If not, two months will really fly by then you can have the surery done. (well, hopefully fly by). It sounds like Dr. L is really nice. I would think that by addressing your addressing fatigue that that would help put with IF. Have you gone to this website? http://www.adrenalfatigue.org/

    It has some interesting stuff about the subject. I know Dr. H.ilgers is into this information.

    By the way, yes we just got back from Syracuse on Tues. morning and we're leaving again this Thurs. night late. We're taking my sister's brand new car. Woo-hoo, no car worries there ;)

    Praying for you!!!
    Amber

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  10. Wow, you are really burning up I-95 recently! Sorry your appt. didn't go as planned - seems like a frustrating one. But at least you are doing something different in the two months of waiting and maybe you will see some positive changes. I hope the appt. with Dr. B next week goes well.

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  11. I really do feel like I haven't checked in with you in so very long. It makes me sad! Things are pretty crazy over here.
    First of all, you look overwhelmingly stunning in your sister's wedding pictures. You're a tiny little peanut! Seriously! (Oh, and the bra looked very good if you don't mind me saying!). Purses were also very lovely. AND, I thought your mom looked fabulous! Her hair and makeup... wow!

    Just know I'll say a prayer for you tonight. Sounds like there's just SO much waiting going on. God's got you so close. Sorry you have to wait so long for your little ones. Oh, the pain.

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  12. I'm not familiar with your meds, but I did have this thought re: your situation. On a past visit to my RE, he wanted to increase my dosage - I'm on pills + injection meds - eventhough I had been ovulating on the current dose. His reasoning: (1) to see if my pre-ov estrogen would improve - it's was good but not stellar; and (2) most importantly, wanted me to have 2 follicles mature (but no more) in a cycle instead of 1 to increase my odds of pregnancy. Maybe one of those is the reasoning behind your dosage increase. I don't see why she would do that for you if they don't know how many mature follicles you have per cycle, but blogs are great for these random theories.

    2 months when you've been trying a long time seems like forever!!! They wanted me to hold off for 3 months to get a chicken pox vaccination and I refused. That was 6 months ago. Still no bfp AND I could get chicken pox to boot :)

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  13. Isn't this the way of IF? We get prepared for one route and then it gets changed. Regardless of if it's a better route or not, it always throws me for a loop. At least she wants to up the meds.

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  14. I really understand your disappointment with no surgery. I would be okay with cyclical laps!

    What would a quick look hurt? ;) hahahaha I know I don't need to get you beefed up! :) hahaha

    At least you got something out of it, that is upping the dose of the Tamox. I wonder what it would be like to not live off of new treatment excitement! ;)

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