Tuesday, April 21, 2009

Infertility, my cross to bear....(continued)

For the first part of this story, read In the Beginning....

The phone rang and I immediately recognized my ob/gyn's number on my caller ID. She must have received the results from my cycle day 3 bloodwork. She had said she'd get in touch with me once she had the results but I was expecting a letter in the mail....not a personal phone call. My heart felt like it was going to jump out of my chest....my hands were shaking. The fact that she was calling me...well, I just knew it had to be bad news.

For a minute, I almost considered not answering the phone. Maybe I didn't really want to know the results. I think this was the moment I realized that my brain and my heart were in two different places.

I grabbed the phone and she said, "Hi, it's Dr G....I have your lab results. I was hoping you'd have a few minutes to discuss it". I let out a huge breath and said, "Of course, I do". Then she broke it down for me....my FSH level was borderline high. Most doctors consider a normal FSH on day 3 to be anything under 10. My level was 11.3. FSH stands for follicle stimulating hormone. Essentially, this hormone is produced by the pituitary gland, which stimulates the ovaries to develop a follicle (which holds the developing egg) each month. As women age, it becomes more difficult for the ovaries to ovulate as the supply of eggs gets reduced and so the level of FSH rises over time. This condition is also referred to as "diminished ovarian reserve" (DOR).

I let out a sigh of relief and said, "well, 11.3 doesn't seem THAT high if you're considering 10 the cut off for normal." She replied, "Yes, while that's true, I'm taking your age into consideration and you know that fertility starts to drastically decline after the age of 29. So I'd like you to do the Clomid Challenge (CCCT)....that will give us a better picture of what we're actually dealing with".

She explained what the "challenge" involved....I would wait for my next cycle and on day 3, I'd come in and have my FSH, estrogen and LH levels checked. Then on days 5-9, I'd take 100 mg of Clomid and return for another series of bloodwork on day 10. Typically, in order to "pass" the challenge, I would need an FSH level lower than 10 on both the 3-day and, especially, the 10-day bloodwork.
I can't say I was thrilled about doing this "challenge", figuring it was yet another test for me to fail. Part of me was hoping I'd get pregnant on the 50 mg of Clomid I had already taken for my current cycle so I'd be done with all of this....wishful thinking on my part but I just so desperately wanted it to be that easy.

When my beloved ovulation monitor told me I was getting close to ovulating, I began my ritual of cozying up to Tim. He could always tell when it was "that time" because I would suddenly become nicer to him, catering to his every need and desire and then I'd seal the deal with, "Hey, it's baby-making time....let's get to it". At first, like most men, he really enjoyed the whole process. I was eagerly initiating sex and the amount of sex that went into conceiving a baby was a dream come true for him. But, soon within time, he started to figure out that I viewed sex completely differently than he did.

I remember this one time, at band camp (trying to throw some humor in here), he tried to initiate sex with me and I looked at him with all seriousness and said, “but I’m not ovulating yet and you need to save up your sperm for when I do ovulate”. Eventually, when he finally did give up trying to initiate any type of non-baby-making sex, he would actually roll his eyes, groan and look completely depressed when I would say those dreaded words, “I’m ovulating…where would you like to...um...do the deed....will it be the kitchen table this time or back to the bedroom?" I didn't care where "the deed" happened, as long as it happened....

But I didn’t always make sex sound as dreadful and as boring as a board meeting with the boss. Sometimes I’d throw some humor in, with the hopes that Tim would be more inclined to have sex with me, by saying “hey, what are you doing for the next 10 minutes? Wanna try to impregnate me?” I think he was starting to dread the whole process as much as I was. Sex was now about making a baby…it was no longer for enjoyment or to share a close intimacy with one another.

When that cycle failed miserably (again), I tried my best to have a positive outlook for the next cycle, where I would do the CCCT. So day 3 came....did the bloodwork, took 100 mg of Clomid on cycle days 5-9 and then went in for the day 10 bloodwork. I was still faithfully charting my ovulation cycle and when my fertility monitor indicated that it was "time", I hit Tim up for some "baby- dancing" for the next 4 days and then turned the cold shoulder on him as I awaited for my CCCT results.

I'll never forget the day I got "the news". I was working from home writing up some staff evaluations and the phone rang. As always, my heart skipped a beat as I noticed my ob/gyn's number on our caller ID. I looked up towards the heavens and whispered outloud to God, "Please....if this is bad news....please give me the strength to deal with this...."

I picked up the phone and quietly asked, "Hello?" and Dr G said, "Hi, Helene...I'm afraid I'm not calling with positive news. I got your CCCT results back and your day 3 FSH was 18.3 and your day 10 FSH was 23.5. As you know, these are not the results we're looking for with this challenge. I had hoped your levels would be below 10 on both days but the fact that your FSH was already 18.3 on day 3 and then it continued to go up, instead of down, on day 10....well, I think you were right to listen to that gut instinct that urged you to ask for the bloodwork in the first place. I know this isn't what you wanted to hear but ultimately what this means is that you have diminished ovarian reserve....."

I didn't say anything....I was afraid to open my mouth, out of fear that I'd start crying and never be able to stop. I just sat there, listening to the silence...not quite sure what to say. Dr G said, "Helene, are you still there? I'm sorry that it's turned out this way..." and I said, "I'm still here....I just don't know what to say....where do I go from here?". Just as I suspected, the minute I opened my mouth, my voice started to crack, my chin started to quiver and I felt tears stinging my eyes. She asked if I still wanted to continue talking....if not, she was willing to call me back later or I could make an appointment to come see her the next day.

I still wanted to continue to the conversation so she said, "Where do you go from here? Well, it depends on how you feel about more aggressive measures, such as IVF....have you given that any thought?". I asked, "Why IVF? Isn't that, like, the last measure....what about continuing on Clomid or combining injectibles with an IUI....why are you suggesting we go straight to IVF?"

She was quiet for a few seconds and then she said, "Can I be frank with you?". I sat down on the sofa and answered, "yes, of course....just come right out and tell me what your professional opinion is...at this point, there's obviously no going back, I can't change things so I need to know where to go from this point and I don't want to waste any more time".

Dr G explained, "I believe that both Clomid and IUI's are a waste of your time. When I take into account your FSH levels, as well as your age, I think IVF is your best bet at this point. My advice would be to not walk, but run, to a highly reputable clinic that does IVF." I started to laugh at how dramatic she seemed to be. She continued, "With high FSH, time is of the essence....FSH is not like other hormones. You can't take a pill for a quick fix, it's not one of those hormones where you can just wait around to see if it gets lower...it never will get lower....I'm afraid the condition only gets worse as time passes...that's why I feel like you really need to get moving on IVF."

I suppose I was still in denial and I asked, "So, really....you don't think injectibles with IUI would even work?" and she said, "You could try IUI and I can even recommend a doctor friend of mine who's an RE (reproductive endicrinologist) within this HMO but I have a feeling he will give you the same advice, but with one more additional suggestion and I'm not sure if you're ready to hear that just yet". I quickly asked, "what.....what do you mean by additional suggestion?".

Dr G said, "Sometimes, women with high FSH can't conceive with their own eggs....and that's when you may have to consider the use of donor eggs. I think that's probably what you'll hear from Dr S if and when you talk with him".

My head was spinning right about then. How could I have gone from one state to another so quickly? How could we have been talking about my ovulation charts at one appointment to then having some bloodwork done, which would finally end up here.....needing IVF to conceive?? And maybe not even being able to conceive with my own eggs? It felt like a nightmare....yes, I had a gut instinct that something wasn't right but, never in my wildest imagination, did I think this is how it would end up. I asked Dr G if she would speak to her friend who was an RE and get back to me on what his opinion was. She agreed to call him and said she'd be back in touch with me as soon as she could.

After I hung up the phone, I just sat there on the sofa staring into space. I had a million thoughts running through my head.....what do I do now? Will our insurance even cover IVF? How do I find an IVF clinic? What do I tell Tim? Tim....the minute I started to think of how I was going to tell him all this, that's when I started sobbing. What would he think? Would he be willing to do IVF?

Once I regained composure, I called him at work and tried to explain everything the best I could without crying again. He became upset upon hearing me so upset and he assured me that we'd work this out, one way or another. I prayed with all my heart that he would be able to accept whatever path we were supposed to take to become parents.

A few days later, Dr G called me and said she had spoken with her friend, Dr S. Just as she had suspected, he didn't feel that IUI was a good call. He felt that IVF was my best bet and he strongly urged me to consider donor eggs. I asked Dr G if she would give me his phone number so I could speak with him directly. She gave me his number and I called him immediately after hanging up with her. I left a voicemail and he called me back the next morning.

Dr S was friendly but cut straight to the point. He was able to access my medical record on his computer and he read me the results of my CCCT, as if I hadn't already heard them. Then he said, "So what is it exactly that you want to know?" and I replied, "I'm not so sure I want to just jump in with both feet and do IVF....I'd really like to consider doing an IUI with injectibles first and see how that turns out". He said, "I'm assuming Dr G already told you my feelings on that?" and I answered, "Yes, she did but IVF just seems so....I don't know, aggressive".

He listened and then spoke up, "Well, with high FSH, you have to be aggressive. From what Dr G has told me, you don't want to waste any more time doing things that won't work and so I believe that IVF is the best way for you to go achieve motherhood. In fact, I'd even strongly urge you to consider donor eggs, if you really don't want to waste any more valuable time."

"I just can't accept that at this point", I said, "I feel like I need to explore all my options with my own eggs first and then I'm willing to consider other avenues. What are my chances of conceiving with my own eggs?" He replied, "With your own eggs, you have about a 1-3% chance of conceiving a take-home baby". I asked, "Take-home baby? What do you mean by that?" and he quietly said, "A baby that you safely deliver, ALIVE, at the end of your pregnancy that you take home from the hospital, when all is said and done".

I didn't know how to respond to that. It wasn't quite what I expected to hear. My brain was trying so quickly to process everything. As if he could read my mind, Dr S continued, "And if you are lucky enough to fall into that 1-3% chance, you have a 75% chance of miscarriage. With high FSH, not only are we talking about diminished ovarian reserve, we're also talking about poor egg quality as well. Most of those pregnancies that are conceived will be chromosomally abnormal and that's why the miscarriage rate is so high. That's why I'm saying that if you really want to get straight to the point and be done with all the trying....donor eggs with IVF is almost a sure-fire way to go".

Once again, I questioned him about an IUI and he replied, "Look, if you twist my arm here, I'd be willing to do an IUI but I honestly think it'll be a waste of your time and your money....I'm afraid it will only end in further heartbreak for you. Tell you what, you give this some thought and then call my office and let me know what you've decided to do. If it's IVF, then I can help you find an RE outside of our network...."

After our conversation, I got angry....who is he to tell me what's possible and what's not possible?! How does he know IUI wouldn't work for me?! Maybe I'd be the one to beat all the odds....maybe I'd fall into that 1-3% chance of conceiving with my own eggs and be lucky enough to be part of that 25% who don't miscarry. I then sat down at my computer and began searching for articles on high FSH....unfortunately, almost everything I read mentioned the same statistics and the recommendation was donor eggs.

Later that day, I looked online for infertility clinics in the nearby area. One of the clinics that came up in my search was ironically a clinic where I had almost donated my own eggs to an infertile couple several years earlier. The couple had chosen me anonymously and I began the donor cycle, only to end up being cancelled due to poor response. Back then, I had no clue what that could mean for me in the future.....I wish to God I had known back then what I knew now.

I called that clinic and made an appointment with the RE, only to have the head nurse call me back later that day to tell me that, for the most part, they didn't accept patients with an FSH level over 13, unless that patient was willing to use donor eggs. I was stunned....I was being turned away before I could even get in to see the RE! The nurse rattled off some statistics and once again, I heard the same "1-3% chance" speech all over again.

I called another clinic and made an appointment with that RE. Amazingly, that clinic kept the appointment; however, I was disappointed upon meeting him that his clinic, too, had the same standards for accepting high FSH patients. He said that sometimes they made acceptions for patients with FSH levels up to 15 and I said, "But my level is pretty close to that....can't you make an acception for that?" and he said, "No, not based on your age...if you were in your late 20's, I'd say perhaps but being in your mid-3o's....I just don't think there would be a positive outcome for you" and then he went on to tell me that if I used donor eggs, they'd happily accept me as a patient. Just to amuse myself, I asked him what the statistics were if I did IVF using my own eggs and he said, "oh, about 1-3% chance of conceiving a take-home baby". I laughed all the way home, thinking all these RE's must be in the same club or something. God forbid, they accept a patient who might skew their success rates listed with the CDC.

Once I was home, though, I found myself in tears again. I cried until I had no more tears left. I asked God, "WHY ME?" Hadn't I played all my cards right? Why was God punishing me like this? Why did I have to be facing this decision? What would Tim decide? I'm ashamed to admit that I even wondered if he'd want to leave me if conceiving a child with me was going to be this difficult. This was my cross to bear, not his. Would he ever be able to forgive me? As it turned out, Tim wasn't exactly "on board" with the idea of IVF...so yet another hurdle to get over.

And then as I sat on the floor, completely drained of all tears and emotion, I decided that there was no point in being angry with God. It doesn't change the facts....it doesn't give me back my fertility....it won't make things easier. If anything, it will just make things that much harder. I decided I had to move forward....pick my head up and keep focusing on that strong urge that kept telling me I was meant to be a mother. That urge never went away, oddly enough....if anything, the urge only got stronger. I believe that is what kept me going in my darkest hours....when I would question if motherhood was meant to be for me, I'd get a feeling deep down in my gut that pulled me forward and kept me going.

The next day, I went to my computer and searched "high FSH support" and that's when I was lead to an amazing group of women on a support board who were also diagnosed with this same condition. As I grasped for courage, I wrote my first post on the board, introducing myself and explaining where I was at in my journey to motherhood, including my latest FSH levels and what was recommended to me by Dr S, as well as the other two clinics.

I was surprised to receive a number of responses almost immediately, encouraging me and offering me hope. Two women, in particular, were especially supportive and told me about an infertility clinic in Las Vegas run by Dr Geoffrey Sher.....The Sher Institute of Reproductive Medicine (SIRM). They were both beginning an IVF cycle with him in the next couple of months and they strongly recommended I get in touch with him, saying that he was one of the most well-known, most successful RE's in the country AND he never turned down a patient based on any kind of diagnosis. Furthermore, he specialized in women with high FSH. I was intrigued.....

They say that once you've hit rock bottom, the only way to go is up.....and let me just say how true that phrase is. Within a few weeks, I had my phone consultation with Dr Sher himself and it was an answer to prayer.....

To be continued.....


Meg said...

Ahhhhh, don't stop now....... dang it!!!!!

I cannot even imagine the emotions you went through when getting all that info. Some doctors just will not even try at least once. they just assume you will be another statistic.

Hurry and post the next part!!! :)

Mother of Multiples said...

Ok stop leaving me hangin...You are an amazing writer..i was there with you. I did the clomid thing and ended up with 6 kids..crazy how each women is different. Keep writing

Semi-Slacker Mom said...

The only thing that's getting me through these stories is that I know the end result!

Sassy was a Clomid baby. I had 2 IUIs, 1st-nothing & 2nd- ectopic. After treatment & D&C for the ectopic, I got pg with Bo.

Baby Girl (like your babies) was a surprise with no medical intervention.

Jen said...

Wow what a story. I so remember that scheduled sex. ;) i can't wait to read more.

Kim said...

Your story is fascinating! Can't wait for the next installment . . .

Kathy B! said...

I had no idea what you'd gone through! I'm so glad that it's worked out well, but I'm dying to hear the end!

Shawn said...

Amazing story! Will have to come back for the sequel.

I'm over visiting from SITS! My daughter has one set of twins, so I was amazed at your ability to have two!!

You go, girl----great blog!

Kristina P. said...

You have the ability to convey so much heartache and emotion in your words. It's so hopeful, knowing that you have such beautiful children!

Debbie said...

You are dragging me down my emotional past with these posts, you know that don't you? I wonder how many of us on here with multiples have been through this journey.

Tracy said...

Your story leaves me with mixed emotions. While I want to know what happens next, your sharing of so many conversations that sound exactly like the ones I had with my RE reminds me that the scab is still a little fresh. I wonder if I'll ever get over it? I mean, I have two healthy babies, so why does it still sting?

Missy said...

Wow! Two sets of twins!!! How cool!

Thanks for stopping by my blog! I can not wait to sit down tonight and read your blog. Your children are beautiful!
My prenatalogist told me I have a 30% chance of twins again (I still can inherit the gene that runs in my family!)

Hajar Zamzam Ismail said...

I'm so glad for you that you kept on trying to find a solution to your obstacles. I don't know what I would have done... It takes guts to go through so much and keep smiling, when you don't know what the outcome is going to be. The souls of your children just kept whispering to your heart...and you listened.

Anonymous said...

So beautifully written, and I don't imagine it was easy to write. You're very brave and generous to share.

bonnieearly said...

Yeah, we gotta finish the book. Your post brings me back to those days. It seems like a distant dream now.

Amy W said...

Quite a story, Helene. Can't wait to hear the rest. You are a natural storyteller, and you remember things in amazing detail.

kel said...

I can't wait to hear the rest of the story. You're a great storyteller. I can't imagine what you've gone through.

Savvy Little Women - Kate said...

Thanks for sharing this! Looking forward to reading more...

wife.mom.nurse said...

oh my gosh, you have been through sooooooo much!

Looking forward to reading on...

MommyAmy said...

Wow! Thank you so much for sharing your story with us. I too struggled with infertility, but not nearly to the extent that you have. God Blessed you greatly for sticking with it and following "that still small voice" that told you to continue!

Anonymous said...

I can't wait to read more, and more! I love how you write so freely about all this, and I can only imagine how difficult this was for you. But we all know you have an extremely happy ending!

Karen said...

I'm not even married yet and I already freak out about this happening to me (since I'm 32). Honestly, if I didn't already know how this story turns out, I don't know if I could keep reading!

Thank you for sharing this very personal experience. I have no doubt that you are giving a lot of people hope by putting this out there.

Christian Housewife said...

I can definitely understand that feeling when you see the phone number and it is your reproductive endocrinolgist calling.

The Lane Family said...

Thank your for posting about your infertility. My husband and I were in the same boat and so many of the thngs you share such as feeling and medical items I have been through and heard. After 5 pregnancies, burying a daughter soon after birth and very complicated pregnancies we have a 3 year old and 11 month old twin girls. Thanks again for your wonderful blogs. If you would like to see our blog you can contact me at wendelton@gmail.com

twinmama said...

Wow...this post had me on the edge of my seat even though we all know how this turns out! Seriously good details which will be so helpful for others on that TTC journey.

Tami said...

I copied an pasted your blog into my email to read while I sat at my lonely desk and did nothing.. ugh.
Helene you had me in tears. My heart went out to you.

Your an amazing woman!

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I figure that if the children are alive when my husband gets home at the end of the day, I've done my job.

----Roseanne Barr

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