Wednesday, March 26, 2014

Luteinized Unruptured Follicle Syndrome (LUFS) Continued...

Yesterday I had my CD 8 ultrasound. I had 2 follicles measuring about 1.6 cm. Based on the doctors past instructions this meant I should take my Neupogen injection ASAP but they still like me to wait for the go-ahead from the doctor. The Neupogen needs to be refrigerated and I didn't want to have to bring it to work so I decided to stop at home after my ultrasound and just do the shot even though the doctor hadn't called me back. Well, boy am I glad I did that because they were closed yesterday! I wish they would have somehow notified their patients in advance! IF treatments require timely answers.

The interesting thing about my LUFS is that the follicular phase of my cycle seems to be very healthy (at least from what I can deduce). I grow health sized follicles without the help of any medications. In fact, when I was on (a sub-therapeutic dose) the doctor's said I was hyper-responsive and took me off of it.

My ultrasounds look great until after peak when the damn follicle fails to rupture and I develop a giant LUF. Blood draws usually indicate normal hormone levels for women with LUF. When I saw an RE she told me I was ovulating based on my bloodwork. She was wrong.

I don't know how LUFS affects mood and hormones that aren't typically tested for... my mood and energy level have been awful lately. I'm waiting on results from my adrenal labs. I hope if you've found this site via google and you have LUFS, you'll comment. There is so little known about the issue. I hope we can all connect and compare notes!!!

14 comments:

  1. Right here with you, girl. With my 2 Fatty LUFS. =)

    I read a little bit about synthroid online. Of course I got varied answers BUT one article said that it can help prevent ovulation disorders. I am hoping and praying that between the new synthroid and cytotec next cycle, I will successfully ovulate. I honestly think with LUFS that we haven't ovulated ever since TTC. I heard that Dr. Hilgers has been spending a lot of time on infection and TEBB the past couple years with the hope to dive further into ovulation defects in the future. You and I are paving the way by trying these meds and getting our scans oh so frequently.

    Hang in there...I'll try and take my own encouragement! It's just so discouraging sometimes to think at how seamlessly other women ovulate. Lord, have mercy!!!

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    1. Amanda, so I haven't gotten to reply to your response about your meds yet. Awhile back when I was trying to get your email (which I still need!) I was going to tell you about Cytotec. A woman in the FB group struggled with IF with 11 years and Dr. Boyle in Ireland used that med to treat LUF and she's pregnant!!! I wasn't sure about the cost- I know you mentioned Neupogen was out of the question price wise- but I assumed it was cheaper (or insurance would pay for it) because it's most commonly used as an abortion drug and sadly they love paying for those. Can I ask how much it was? We are only doing Neupogen because DM & AM so generously gave us their left-over meds. It was an act of the Divine to say the least. Once the meds they gave us run out we will have to look for another option as well since our insurance won't pay for any infertility treatment (!). Seriously. so ridiculous. And we are lab rats! I wish we could get free meds since they are all experimental!!!

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    2. Also praying the Syntrhoid does the trick for you!!

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    3. Thanks for this reply! That news of the woman in Ireland gives me GREAT hope. :) I have found like 2-3 references to cytotec use online. Some women it worked some it didn't. Here'e hoping I am the one who it works on!!! It only cost like $30 for 20-30 pills, which is enough for MANY cycles. I'm hoping we only need one round but thought it wise to buy many months worth, since my body tends to take the round a bout way, as you can relate.

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  2. I wish I had something helpful to say. All I've got are prayers and hugs!! Both you and Amanda (and everyone else facing LUFS) are strong women, to say the least!

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  3. How frustrating that the doctor's office was closed without notice! That was the one thing I loved about my RE - they were open 363 days a year, and they would call people back with information very quickly.

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    1. Wow! Stephanie, that sounds amazing!!! It really is puzzling how Omaha runs their office. I think when I'm feeling motivated I'll write them a letter with some gentle feedback. It seems so obvious they need someone there 365.

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  4. LUFs seems like a really difficult and frustrating diagnosis. I'm sorry you're facing it. :( I really hope the Neupogen works for you! Dr. Hilgers talked a little bit about LUFs at the annual NaPro conference last summer. He has had very limited success in treating it, unfortunately.

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    1. Thanks for your comment, polkadot! The information about the NaPro conference is interesting. I'm glad they're at least talking about it! It's discouraging to here they've had such limited success in treating it, but good to know so I can better prepare myself emotionally.

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  5. I cannot tell you how thrilled I am to find another Catholic with LUFS! Not that I'm happy you have it of course! I'm just starting down this really awful, frustrating road and am already so exhausted and hopeless. Sub fertility is nothing new to me, ut

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  6. Sorry I had trouble above. Can you tell me the Facebook group you refer to throughout the blog? Also, is there a better way I might be able to contact you? I'm in the Twin Cities and go to AALFA (I noticed you list them as

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    1. Agh, sorry. Serious technical challenges here. Anyway, before it freezes on me again, you get the gist. I'd love to be able to chat more. Thanks!

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    2. Glad you found me! Email me your Facebook name and I'll add you to the group. And we can talk more:-) infertilemn@gmail.com

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