Today...

I'm loving everyone's 'Little Happies.' I'm feeling pretty down today so don't read any further if you're not up for a little melancholy.

I had my peak+4 ultrasound today. While I was in the waiting room, I let myself imagine the possibility that I ovulated and that I'd be returning in a month or so for an ultrasound of baby. I let myself imagine what it would feel like. Why the heck did I let myself go there? Well, I really thought I could have ovulated this month. My typical LUF pain didn't seem as bad as it normally does, but sure enough I had another LUF.

I let myself cry on the drive into work. I grieved the loss of another month gone by without the little one we long for. And now I just feel numb. I feel so cut off from the world. I feel so disinterested in everything. I don't like this.

This was my 3rd cycle using Neupogen and I'm hoping they'll adjust the treatment plan since I don't seem to be responding. Last month they though I "might" have ovulated but I'm thinking I didn't. Why would it work one month and not the next?

I called our adoption agency today to see where we are on the waiting list to do our home study. We our still 4th on the list. We were 4th on the list in November and they told us they thought it'd be 3 months but we haven't moved up at all!

They said they're seeing very few birth moms who don't already have an adoptive family identified. They're encouraging people to do an independent home study and identify their own birth mom. I do not feel up to this. I just can't imagine spending that much time thinking about it. I feel like I would lose my mind. I'm supposed to be talking to a social worker about it tomorrow to get a better idea about what it would involve. Anyone have any thoughts?

And then well, maybe it doesn't matter because the DH is still not going to mass. And I really don't want to move forward until he's got some faith. We're arguing because he says I 'pressure' him. I rarely bring it up but when we do talk about it I do emphasize that I believe faith is a choice. He says he's waiting until he "feels called," which infuriates me. He's cut himself off from the grace of the sacraments. He isn't going to feel called. Of course God can work miracles but he usually works within the natural order of things and he's made himself available to us. Ultimately, we have to choose him. Any feedback? Obviously, I'm praying for him and trying to be a good example and I swear I usually don't bring it up...

What I need you to know about infertility: Part 1

Dear loved one, I know you want to be helpful and infertility is hard to understand. If you can forgive my sometimes cynical tone, I think you'll find this helpful. 

1) I am as relaxed as I can possibly be. Infertility is a full-time job all it's own. I miss work at least 4 times a month for last minute appointments that are based on my dysfunctional body's cues. I am using nearly my entire salary to pay for medications that my Cadillac Insurance plan (read super expensive) doesn't cover (while they quite happily pay for abortions and birth control). I don't have the option to "not think about" my infertility because I have to constantly monitor my body for "signs" to determine when to take a given medication and to write up charts for my doctors to read at the end of the month (When I skip this step because I just can't bear to focus that much on infertility the doctors refuse to adjust my treatment plan without that information). I've had to leave work in the middle of the day on more than one occasion because my doctor's office called and said I needed to give myself a shot an hour ago.

When you tell me to relax you imply that my infertility is somehow my own doing. Telling me to relax only stresses me out more. I am already spending more than I can afford to "relax." I have a detailed self-care plan developed with the help of a mental health professional. Your advice to relax makes me question myself more. It makes me bewildered and frustrated that the extensive steps I've already taken to "relax" apparently aren't working. It highlights another thing I'm not doing right.

If you think I need to relax then help me relax. Send me a gift card for a massage. Call me and ask me to go for a walk. Take me to get my nails done. Pray with me. Make us dinner. Better yet take me to a comedy club. I could use a good laugh. Whatever you do, don't tell me to relax. I'm doing the best I can given very un-relaxing circumstances.

2) I need to talk. Infertility is so isolating. People don't want to ask about it because they don't know how to handle the answer. They don't want to "pry." Please don't avoid asking me how I'm doing because you're afraid I'm not doing well. If I'm not doing well that's even more of a reason I need to talk. Talking helps me process things. It helps me connect with you. I don't expect you to have the answers. In fact, I really don't want you to try to give me answers. There are none. Infertility isn't fair. There's no good reason I've been dealt this hand. Infertility is now a part of who I am and I need to be able to share that with you. I need to give voice to my pain. Being able to share my story reminds me that people do care. It reminds me that even though I may feel a crushing sense of sorrow and isolation that I am still alive. That other people want to know me. That I am worth knowing. That I am worth something. That I am still bearable to be with.

When you don't ask- no matter how I try to rationalize it- I'm left feeling like you don't care. Oh and if you really don't care, then don't ask. I'll know by the way you listen or don't. 


3) I am in a constant state of limbo. I had an awful headache the other night. I knew an Ibuprofen would help but I couldn't take an Ibuprofen because Ibuprofen can inhibit ovulation. Well, I never ovulate anyway so I might as well just fix my headache, right? Well, no because what if this is the month where all the expensive medication is finally going to work and I mess it up because I took an Ibuprofen?

I am tempted to throw myself totally into my career. It seems like a good way to distract myself from the pain of my shattered dreams for my family and future. If I can't have the life I dreamed, at least I can accomplish other great things in the world. Right? Well, if I accept the career building opportunities that come my way then I won't be able to miss all the work I normally miss. I won't be able to attend all the doctor's appointments and ultrasounds. I won't be able to scurry off in the middle of the day because I forgot the injection I need right now. 

If I accept all those career building opportunities, I'll be taking time away from relaxing which I'm told is pretty important (see #1). So go for balance you say? Well, that's what I'm doing. But balance leaves me feeling pretty mediocre. My body has failed me and I want to feel like I'm worth something. Career success seems like a healthy enough Plan B, but I don't want to sacrifice my dream for a family for my career. So I don't. But then again there's no guarantee that all this balance will result in the family I so desperately long for. How will I know when to give up on balance and focus more fully on my career? How will I know when I have no other choice than to make my career my consolation prize?

I can't go all in. I'm constantly hovering above two worlds- one I'd quite happily leave in an instant if I could but as things stand, it offers my only chance at feeling somewhat competent and worthwhile- the other I desperately long for but can do little more to attain. I stay- an unwilling visitor- in the first world- not knowing if I should make my home here or not. All the while, my efforts to earn my place in the second world take away from my worth in the first.

Hormonal Meltdown

Does this resonate with anyone else? I know I shared this before on the FB group but we watched this episode again last night and DH just loves this scene. He says I should apologize to him because this is how I am and I think he should apologize to me because this is how awful fertility treatments make the woman feel!

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!!!

Nearing the end?

DH and I have been discussing how to handle the situation with his family, namely the lack of connection and support I've felt the past 6 months. Of course I have the option to just change my expectations but I've come to rely on MIL for so many things. I value our relationship so much and I simply cannot resign myself to the fact that we're going to have a merely polite relationship.

I've compiled a list - a combination of various articles and blog posts- that touches on the key things I think would be helpful for DH and I. I'm terrified to pass it along because I don't want to be criticized for it. I'd be making myself very vulnerable by sharing it. And the scariest possible outcome is that it goes completely unacknowledged.

During our discussion on how this might be best handled DH said, "we're nearing the end of trying to conceive..." He's never said that before and now I feel a whole new wave of grief and hopelessness wash over me. It breaks my heart into a million pieces to think this journey really might end without a pregnancy and the birth of our baby.

I feel like a failure as wife. I feel forgotten by my loved ones. I feel a crushing, paralyzing sense of sorrow...

"Worn"

Tenth Avenue North 

I’m Tired I’m worn

My heart is heavy

From the work it takes

To keep on breathing

I’ve made mistakes

I’ve let my hope fail

My soul feels crushed

By the weight of this world

And I know that you can give me rest

So I cry out with all that I have left

Let me see redemption win

Let me know the struggle ends

That you can mend a heart

That’s frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that’s dead inside can be reborn

Cause I’m worn

I know I need to lift my eyes up

But I'm too weak

Life just won’t let up

And I know that you can give me rest

So I cry out with all that I have left

Let me see redemption win

Let me know the struggle ends

That you can mend a heart

That’s frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that’s dead inside can be reborn

Cause I’m worn

My prayers are wearing thin

Yeah, I’m worn

Even before the day begins

Yeah, I’m worn

I’ve lost my will to fight

I’m worn

So, heaven come and flood my eyes

Let me see redemption win

Let me know the struggle ends

That you can mend a heart

That’s frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that’s dead inside can be reborn

Cause all that’s dead inside will be reborn

Though I’m worn

Yeah I’m worn

Stress Reduction?!?!

If one more doctor tells me I need to reduce my stress....!!!!! What in the world I am supposed to do? I already take the best care of myself I can. I make time for prayer. I go to spiritual direction, therapy, take care of my physical health, I avoid over-committing myself, I have a job that I love that is rewarding and gives me a reason to look forward to tomorrow, I spend time with friends, do things I enjoy, etc, etc, etc.

My life is pretty un-stressful in the grand scheme of things- except of course the issue of infertility which I have little control over. I do everything in my power to handle it the best I can- reaching out to you-this amazing blogging community, prayer, talking to friends, therapy.

I am all for self-improvement, for responding the best you can to the cards you've been dealt. I honestly have no idea what I'm supposed to do to de-stress anymore. 

Does anyone else feel perpetually annoyed by this suggestion???? Am I crazy???

And just FYI so this post doesn't seem totally pointless and annoying- the doc did shed some light on my high Reverse T3. She said R T3 is like the breaks on a car. It's telling my body to stop doing things that aren't essential for survival because I'm in chronic stress overload or fight-or-flight. She said that's why I'm responding with such extreme anxiety to the T3 supplement, because my body's trying to tell me to focus on something else. But what? 

Luteinized Unruptured Follicle Syndrome (LUFS)

April 2014 Update: I ovulated with the help of Cytotec prescribed by PPVI. See my timeline for more information. 

I took my HCG trigger shot about 48 hours ago, 36 hours following my 2nd Neupogen injection. I won't be able to have an ultrasound until Thursday since we're out of town. It is becoming glaringly obvious that I have yet another LUF. The pain and discomfort are unmistakable.

I was first diagnosed with an LUF in October 2011, only a few months after we started TTC. My family practice doctor ordered an US and shockingly the radiologist identified the cyst on my ovary as an LUF (shocking because most medical professionals don't know what they are). My family practice doctor didn't have much input to offer (she'd never heard of them).

I did hours of research online and found very little information. I found a handful of medical journal articles but they were from as far back as the 1980s which told me not much research was being done on this issue anymore.

In December of 2011, we went to an Reproductive Endocrinologist for evaluation. I assumed they would easily be able to tell me whether or not I ovulated based on ultrasounds and blood work. Boy was I wrong. Apparently only the Napro ultrasound series does this. The RE was just making sure my hormones rose as they should and checking to see how many follicles I had in a given cycle. The trouble with LUFS is that hormones and ultrasounds usually look pretty normal- the problem doesn't occur until after the time of assumed ovulation so it commonly goes undetected.

When we met with RE to review our test results, she told me nothing was wrong. I showed her the stack of medical journal articles I had printed out. They talked about LUFS and said 80% of women with LUFS have endometriosis. She told me LUFS wasn't real.

I look back on that experience and I feel infuriated for the many women who seek this doctor's care (and so many other's like her) who don't know there are other options, who have to tolerate the status quo and never have the actual cause of their infertility identified.

I have never felt tempted to even consider IVF but my understanding is that IVF wouldn't even be an option for us since my eggs are never released. For some reason, I find that incredibly depressing that even using illicit means we'd never be able to have biological children. It just feels like a new level of hopelessness. Of course, the other way of looking at it is that we are beyond blessed by Napro- maybe even more than the average couple. Napro is literally the only means of treating this problem. No one else has a clue what to do.

During my research the most helpful page I found happened to be a fellow Catholic IF blogger's post. I have her permission to share it with you here:

Thursday, March 17, 2011

(LUFS) Luteinized Unruptured Follicle Syndrome


Dr. Hilgers is now using Neupogen to treat LUFS and is having success.

Anovulation in Disguise:
LUFS (Lutenized Unruptured Follicle Syndrome)
Trapped Egg Syndrome
Hemorrhagic Anovulatory Follicle Syndrome".

When I check my blog stats, I get many search hits for LUFS. The other day one of my readers asked me for more information on it so I decided to post it here. It took me two years before I was diagnosed with LUFS It is very tricky get a diagnosis because all the usual tests could come back normal. Most REs do not even look for it becuase they think they can bypass everything with IVF.


======================================================================


What is it?


In Luteinized Unruptured Follicle Syndrome, the egg develops within the follicle quite normally and then the follicle turns into the corpus luteum. Even though all hormonal changes take place reasonably normally, the follicle never ruptures and the egg is never released from the ovary. The LH surge is responsible for "leuteinization." Failure to rupture does not mean failure make the transition from an estrogen producing follicle to a progesterone producing unruptured follicle (LUF).

Ovulation and luteinization can be mutually exclusive events. For example, drugs that suppress activity of cyclooxygenase prevent ovulation without affecting luteinization of the follicular wall or circulatory profiles of progesterone characteristic of an otherwise normal luteal phase; The "luteinized unruptured follicle syndrome" is due to a chronic follicular inflammatory response (ie., failure of PGF2a to terminate the preovulatory hyperemic reaction induced by proinflammatory agents, such as histamine).


Taken from http://www.uwyo.edu/wjm/repro/ovarian.htm


What about tests for ovulation?


Most drs check ovulation by measuring the hormones that are being produced during the menstrual cycle. They do not determine whether the actual release of the egg from the ovary has taken place. They make the assumption that if the hormones are being produced in proper amounts then ovulation has occurred. The hormones and the physical release are two separate acts. Since the hormones are being produced, the basal body temperature chart will show a rise; measurement of blood hormone levels will be "normal"; and if an endometrial biopsy is done, it will show that "ovulation" has taken place. However, the follicle will not rupture and there will not be any significant increase in fluid in the pelvis when an ultrasound is done.


======================================================================


My personal experience:


I had a regular 28 cycle, with a positive opk every month that matched up with basal body temp charts. As far as I could tell I was ovulating every month. All my other tests came back normal. The RE labeled me as having unexplained infertility. I tried ovulation drugs for months and then moved on to the shots. I used ovidrel as a trigger. I always had a cyst the next cycle after. One of the nurses said that maybe I was not ovulating. I asked the RE. He said he was 100% sure I was ovulating because I was taking a trigger. I asked him to do an US after the trigger to prove it and he refused. I asked him why I had a cysts every single month and he said my cysts were due to POF.


Then I started Napro. When my dr looked at my Creighton charts and due to continued CM he said it is possible that I have LUFS. My napro Dr tracked my follicle growth with an US. I could see that follicle did not rupture. It would continue to grow past 20mm after I get my LH surge. I tried HCG triggers but they never worked. After I took the trigger, my follicle would actually grow larger. If I got blood work done, or use an OPK it still appeared that I ovulated, even though I know I did not.

I spent a year trying to find something to cure my LUFS. The only treatment available was to use a HCG trigger. I did this and it never made them rupture. When I realized that my only treatment option was not working, I spent hours on the internet researching and came across an article from Japan that uses G-CSF to treat LUFS. I tried to get my dr to give it to me. He was not comfortable since it raises your white blood cells. I went back to the internet and tried to find a dr who would. I came across a specialty known as Reproductive Immunology. I found a dr who uses G-csf in his practice. He ran some immune tests on me and found out that I have elevated natural killer cells. He said this can cause implantation failure and unruptured follicles. He told me to take fish oil and pycnogenol. He suggested I take Lupron as a trigger.


The first time I used the Lupron trigger it worked!!!! I could not believe it. The next month, I went in for my US and saw that my follicle had ruptured on its own before I even took the trigger.


It is frustrating becuase there has not been a lot of research on LUFS so most doctors are not aware. Of all the research I have done, I mostly found articles on horses. The only main article I found on humans was from Japan. Most Drs do not take the time to properly diagnose ovulation disorders and many women are labeled as unexplained. REs just want to bypass every problem with IVF. There seems to be a connection between LUFS and endometriosis. There is now some new research on treating both of these with immune treatments. Napro Technology Drs are also trained to identify and treat LUFS.

LUFS- Simone's Journey

Adopt-a-Blogger: Thank you!

 

February was an interesting month. I cannot thank you all enough for your prayers! It was so humbling to be chosen for such a HUGE gift. Thank you again, Stephanie, for supporting me so much in this blogging world and allowing the Holy Spirit to guide your heart as he did.  I look forward to praying for this month's Adopted blogger, though I think I should wait for Amy to announce her.

Allow me to share some of the blessings from the past month:

- DH and I are making some tremendous breakthroughs in our relationship. He actually asked me to think about how my actions support our connection or hurt it! Hello?! This is exactly how I've been trying to get him to think and the fact that he's using that language is great sign!

- I wrote My letter to baby post, which was very healing for both DH and I. DH never reads my blog but I read that post to him through many many tears. He listened attentively and said it was "good." And later he said he wished he knew how to respond better because he really wanted to connect with me in that moment. Again. This is not the way my DH talks. This is huge!!!

- I can feel the Lord working on my heart, helping me to see what I can change and can actually feel myself reacting differently when I get upset with my DH. (Can you say miracle?)

- We're on a trip with my husband's family (some of his cousins too). This morning all of the young adults (except me) opted not to go to mass with the parents but DH decided totally on his own to come with. He hasn't been with me to mass in over a year. I think he was just trying to be kind to me, but nonetheless, it's a huge step! He has avoided mass like the plague for so long now. I'm confident God is working on his heart. Oh, and the readings and homily could not have been more perfect! The priest talked for 15 minutes about the importance of confession and what a gift it is and how merciful our God is. Amen!

- We are now on our 2nd cycle using Neupogen and an HCG trigger. We won't know for a few days whether or not I ovulated but I'm hopeful. I was beyond worried about having to bring the medicine with me on this family trip since it has to be refrigerated and I had no idea what I'd do if I needed an ultrasound while we were away. But... I ovulated freakishly early this month and so didn't need to bring the refrigerated meds with me. Wohoo!

- I connected with Sew and she's given me a ton of help/direction about my thyroid issues. She did research for me and connected me with doctors in my area that she hopes will be able to better address my thyroid since T3 hasn't been working out so well lately.

I can't say enough how big of a miracle these little changes with my husband are. I know they are a result of all of your prayers. I am beyond grateful to you all. Praying for you now and always. <3

Update: March's Adopted Blogger is Amanda at truegoodandbeautiful.net