Infertility Interview #2 - Meet Liz

I want to thank Liz for be willing to share her story, right in the midst of her struggle, and for sharing her hope with us.

How long have you been/were you trying to conceive and what issues are/were you facing?
We have been trying to conceive since 2008. I was 28 when we started and by 29 I had a positive pregnancy test. Found out that it was an ectopic pregnancy. I was having horrible abdominal pain with every menstrual cycle and with intercourse even up to 2 hours after. After I had a laparoscopy in 2009 it was determined that I had endometriosis. They had a large amount with adhesions, which explain the amount of pain include areas on the bowel. I had laparoscopies repeated in 2011 and 2013 to increase the chances of fertility and pain relief. After waiting over 6 months with no pregnancy we decided to harvest my eggs and start IVF. My husband sperm was grade A so there were no issue there. After a month of fertility drugs and hormone injections we were able to retrieve 13 eggs, only 7 survive the incubation stage. After 2 IUI and 2 IVF cycle failures we decided to take a break.

Where are you at in your journey today?

At this point we have 3 embryos in storage. Due to my pain of developing fibromyalgia we decided on pain control before continuing. We have discussed trying another IVF cycle next year after trying a ‘clean eating diet’ and as organic and hormone free as financially possible.

What is a common misconception (pardon the pun) you encounter the most about struggling with fertility?

I think the biggest misconception is that we are not trying enough. My husband and I both worked shift work and we would time everything so that would not be a factor. Then people started to say ‘its because your trying too hard’. At that point I don’t think we were stressed at all.

How do you and your husband cope differently? And how do you work at not letting it harm your marriage?

I think we cope very well together regarding this situation. There have been times where I have given him the option to continue on with someone else that could fulfill this ‘obligation’. He says he is in it for the long run and has accepted that this may never happen and he is okay with that. We have also discussed that option of a surrogate if all else fails. We talk openly about this issue so we are always on the same page.

What is one way society has made it difficult to feel ‘normal’ or like you don’t fit in?

My husband and I both have large groups of friends and family. Everyone pretty much has a child if not 3 by now. We feel very weird when we attend functions because everyone is talking about everything baby related, mile stones and school events. Some people makes us feel that we are not busy stressed or broke because we do not have anyone we care for but a dog. We get a lot of ‘it must be nice’…not to wake up early….have to clean up after a baby….sleep all night…and so on.

What is your biggest frustration with this struggle, other than of course the lack of pregnancy?

My frustration is not feeling like I can control my plan. Not sure if we should save more money for something that may never happen or take vacations and enjoy what we have. But also having to attend all the baby showers and birthday parties childless is pretty frustrating, especially when people ask why we don’t want to have kids or start giving advice when they don’t know what we’ve already been through.

What was the biggest surprise about this journey?

The biggest surprise about this journey was how understanding and supportive my husband and family have been.

How have you taken care of yourself physically, emotionally, and spiritually during your struggles?

I think I have let myself cry as much as I can to let the stress flow through helps. I found just going for a walk or bike ride with my dog have been very therapeutic. As a nurse I have witnessed many sad moments in peoples lives that I feel like things can be so much worse and sometimes you just tell yourself ‘it is what it is’. We cant control everything and just be grateful for what I already have. I try not to dwell and take one thing at a time.

What has been your lowest point and how did you survive it?

I don’t think I have hit my lowest point as of yet. I have always had a gut instinct that the first fertility trails where not going to turn out. I think my low will come when I am on my last embryo. I would not what to go through the injections and egg retrieval again. But I think I would if it came down to it.

What was the best and worst advice you received?

Best: ‘not to listen to anyone’s advice everyone’s body is different’

Worst: ‘it will happen when it happens’

Would you have done anything differently?

One thing I would have done differently was to try the IVF when I had found out in 2009 about the endometriosis issue. I had let my gyno talk me into waiting to see a fertility specialist thinking that the laparoscopies would have increased my chances of conceiving.

What is one thing you would want other women just beginning their struggle with their fertility to know?

I want every women struggling that they are not alone. It may take a few months or even years but don’t give up on your dream. Never let anyone talk you out of trying all your options that are available. Do what you have to do to make your dream come true.

Infertility Interview #1 - Meet Lori (Me!)

Here is the first interview in a series I hope to have posted here over the next few months to tell the stories of women who have faced fertility challenges, in the hopes that we can at least end the silent part of our our suffering. For my first interview I decided to tell my own story, feel free to share and I hope it resonates with somebody somewhere!

How long have you been/were you trying to conceive and what issues are/were you facing?

We have been trying to conceive since January 2006, so for 9.5 years now. Having gone for complete testing, both my husband and I, there are no concrete results for us to name/blame for our infertility. I have had several very early miscarriages, too early to diagnose a reason, and my hormones have come back in the normal range but it would seem the most likely answer is my eggs have very poor viability.

Where are you at in your journey today?

After trying 2 different medications (one to decrease Estrogen and then one to increase it), and with no results and very bad side effects for my body, we are at the place we've decided we are no longer going to pursue any treatment until God tells us otherwise. Other than a few natural options (high quality vitamins and essential oils) that we take because they are good for us even outside of fertility, we are doing nothing. We have decided to let go and let God, so we are not enhancing our chances for conception in any way, not even tracking. We are still waiting on what we feel God has called us to, (super)natural conception of our own biological child.  

What is a common misconception (pardon the pun) you encounter the most about struggling with fertility?

That every person who wants to have children will pursue any and every means, no matter what, until they finally have that child. Very early on my husband and I realized we felt strongly about not taking on debt in order to pursue parenthood, which a lot of people do not understand because it limits a lot of options. People have been very confused we don't want to pursue IVF or adoption. 

How do you and your husband cope differently? And how do you work at not letting it harm your marriage?

As an extravert, I need to talk about what I’m going through, verbally process it, but also get feedback and do research. My husband is an introvert, and he doesn’t talk about it at all except with me, he dives into other areas of his life, trying to find fulfillment, or sometimes distraction, there. We even approach hope differently, I have hope each and every month, my husband has over-arching hope, he believes it will happen when it’s supposed to.  

In 2010, this struggle was actually harming our marriage, we weren’t communicating with each other well enough at all, and every month I felt like trying to conceive was actually building a wall between us rather than connecting us.  That was not what I wanted at all, children were to be an expression of our unity, it was not supposed to create disunity, so I made the choice to stop, and focus on healing myself and our marriage. Through that experience we grew closer to God and closer to each other, and finally learned the art of good communication that has helped us through the many ups and downs that continued when we began to try to conceive again in 2012.  

What is one way society has made it difficult to feel ‘normal’ or like you don’t fit in?

Most every part of society is stuck in the rut of single>marriage>children. Meeting new people, once they know you are married the next question is do you have kids? Even in Church, the culture now is to find smaller groups/ministries to connect in, there isn’t one for middle age couples without children. And, like Valentine’s Day sucks for single people, Mother’s and Father’s Day really sucks for us, yet unlike Valentine’s Day where even media downplays it to spare the widening circle of singles, society still pushes M&F Day celebrations out every media outlet for weeks, despite the world being predominately non-traditional families these days.  It’s interesting how society claims tolerance and inclusiveness and progressively re-defining family & marriage, yet there is the pervasive emphasis on the abnormality of being married without children.

What is your biggest frustration with this struggle, other than of course the lack of pregnancy?

The Ignorance in the medical field.  I know doctors can’t know everything, but if I can find something out, something that’s in widely-published books or has significant resources on the internet, than my doctors should know about it. It should be on their radar.  My infertility specialist was convinced I had to ovulate on day 14, there was no other option, no matter how long my cycle was. My GP had never heard of a tipped uterus, even though every exam he had to use special tools because of ‘the difficult angle’ of my cervix. Infertility takes more than a physical toll, it takes a mental and emotional toll, and there has never been an offer or suggestion that seeking counselling would be helpful. The one that ticked me off the most was, “We can’t really call it a miscarriage unless you had a positive pregnancy test.”

What was the biggest surprise about this journey?

In addition to the above, I was surprised by the general ignorance of the female population about our own bodies. I was given the gift of a borrowed book, The Fertility Awareness Method, and boy were my eyes opened!  So much I had no idea about, that would have helped me all my life, not just relating to trying to conceive or pregnancy. And I’ve since given that book to other women because I have become keenly aware how little women are empowered to understand their own biology.  As my sister read it, and asked her best friend who is a nurse, ‘why didn’t you tell me this?’ the response she got was ‘I thought all women knew’, even though she had learned it in nursing school. I would highly recommend reading it!

 How have you taken care of yourself physically, emotionally, and spiritually during your struggles?

As I mentioned, I cope by verbally processing, and finding other trustworthy women, who love God, whom I can talk to about the whole situation, is one of the biggest keys to keeping me emotionally and spiritually healthy.  Unfortunately, at first, I didn’t have great success at finding safe women who would listen without fixing, who would inspire me to turn to God rather than increase worries, but once I did I find the right women to share with, they have been indispensable in my healing.

Physically, I have always battled being overweight, then adding medication, miscarriages, depression/grief, exhaustion, stress, and my first doctor telling me my weight was to blame, I yo-yo’d between really great and really bad choices for my body.  I’ve only in the last 18 months come to love my body, regardless of its condition, and am working to allow that love, and God’s love for me, change my decisions about food and exercise from the inside out.

  

What has been your lowest point and how did you survive it?

My lowest point was at that same time when I realized my marriage was being affected, in 2010. It had been 4 years of trying, a few miscarriages, no answers or help from Infertility clinic, I was 33 and my only dream in life was to be a mother and it all just seemed utterly hopeless. I am one of the most hopeful and optimistic people you’ll ever meet but my hope had completely run dry, my life felt empty, felt purposeless, felt alone.  And so, as I mentioned, I decided to quit! I was at first determined to fill the gaping hole in my life with a new purpose, so I jumped into volunteering at Church. What began on shaky motives, and could have turned out even worse, ended up being a huge blessing, as I was involved in a ministry devoted to help people find healing from their deepest hurt through Biblical principles, and strengthening their relationship with God. I was able to heal from a lot in that ministry, but God undoubtedly directed me to this place where I would finally begin to grow into spiritual maturity and intimacy with Him. Through the beginning of that journey I learned more about listening prayer, and in early 2012 God had me talk to my husband about starting to try again, and in that conversation my husband realized he had grown his own desire for children, no longer wanting it for the sake of giving me my heart’s desire! On our 9^th anniversary we agreed to begin our parenting journey again, in unity.

What was the best and worst advice you received?

The worst advice was probably the really inappropriate suggestion my husband should wear boxers, all sorts of ignorance and stepping over boundaries happening there! 

The best advice is a toss-up, between reading The Fertility Awareness Method and trying essential oils.  I have a really interesting balance of friends in the medical field and those who have a very holistic approach, which I love having access to both sides to create my own balanced version of what’s best for me.  Doing my own research after a discussion with a holistic-leaning friend, I decided to try Clary Sage, which balances out pituitary gland production of all hormones (female and male), and in 2 days I had results! In the 3 months I’ve been using it my cycle has gone from 32-36 days to 30 days, and my ovulation from day 16-18 to day 14-15. Even just the symptoms it has alleviated, balancing my ‘out of whack’ Estrogen from the last medication I was on, I was sold!

What is one thing you would want other women just beginning their struggle with their fertility to know?

You are not alone, you are not the only one suffering through this. When we think we are the only ones going through something, we isolate, we get silent, minimize our valid emotions, and that only increases the suffering, but just because you may not know women talking about it doesn’t mean you don’t know women dealing with it. Not that we would wish this on our worst enemies, but it is comforting to know someone’s had almost the exact same thing happen to them as you, felt the same emotions you have. Search high and low for even one person who shares this journey, two are stronger than one.

Would you have done anything differently?

I would have talked about it more openly and honestly from the beginning, with my husband, with my family, my doctors, and tried to find a safe community of women to share with as well.  I can’t understate the tremendous impact good communication has made on improving the frustrations that come along with infertility.

What has been your biggest form of encouragement?

Growing closer to God is the only reason I have continued this journey, because the closer I got to Him, the more I had clarity, peace and joy in my life, in my waiting, in my future.  He brought me and my husband closer than ever. He brought me amazing friendships I may never have met had I had children by now. He has given me more than I could ever want or ask since I’ve placed my hope in Him rather than in a baby. It is my prayer that everyone can receive the blessing of knowing how much our God loves us and wants the best for us.

Patient Safety

I have been an active patient for the last 10 years due to baby-making and infertility, have seen 3 different doctors, gone to 6 different facilities involved with testing, multiple nurses, technicians, pharmacists, etc., and while my physical health has not been harmed, I feel like I have sometimes been dealt with in a careless manner by my healthcare system. I was in a very vulnerable position, as are all patients dealing with a medical problem, and when extra care was needed I hardly got any at all, fixing my physical 'problem' was the main concern, emotional and mental care were hardly a consideration, and neither was the fact that I may want to participate, have questions, make decisions, yada yaya.

That is why I am really excited by the mission of my new employer, Manitoba Institute for Patient Safety! We are committed to helping improve patient safety within the system, AND also empower patients to be engaged in their own healthcare. We have a lot of resources that can help you with self-advocacy, providing information about; your rights, how to ask questions, how to be informed, how to take part in decision-making, and more.  All of which I could have really used when dealing with multiple doctors, facilities, etc.

If you, or someone you love, have felt frustrated as a patient, whether related to fertility or not, or you just want to proactively be informed, a great place to start is www.safetoask.ca!
‪#‎safetoask‬ ‪#‎patientsafety‬ ‪#‎healthCARE‬

Infertility Interviews

Over the next few months I am reaching out into the Fertility-Challenged community and conducting interviews in the hopes of bringing some 'me too' stories to women who may feel all alone in their journey through deferred motherhood, and all that comes with it; delays, doctors, diagnosis, depression, etc. Any story is welcome, just because it's not the typical story (there is no typical story) don't underestimate the value of your story, because somewhere, someone just may need to hear your exact struggle, because it is also theirs.

If you would be interested in joining my interview series, please leave a comment with a contact address and I will be in touch. I would love to hear from you!

Gratitude

I learned the lesson 30 months ago that gratitude is an extremely powerful thing. I can say with certainty it was the first step to the joyful place I am in life today, but I had a moment where I first had to make a choice.

As part of my ministry at Church, I led women through healing principles and in late 2012 one of those principles was gratitude. The lesson material was great, but it was all head knowledge. Not that I didn’t have moments of gratitude but it was an attitude not a way of life. I decided I wanted to increase my gratitude so I took on one of the materials suggestions, to start a daily gratitude journal. I figured I would start January 1^st and try it out for one year. After a few weeks I was really enjoying it and noticing I was even more positive than usual.

Then.

Day 23

I had a miscarriage.

My furthest along to date, even Sean had suspected , and even though I couldn’t bring myself to test yet, we were enjoying sharing new plans. And that evening we shared tears instead. As I got into bed that night I looked at my gratitude journal sitting there and contemplated. Do I write something today of all days?! And the thought that flooded my mind was how grateful I was that this time I finally had Sean to share the grief with, and that even at our lowest point we had managed to find laughter together. And so that’s what I wrote.

The next day we had our small group.  We had built a family with these people yet at first we weren’t sure we could share immediately, still so raw, but God had other plans, He had one of our friends sing a song that included the lyrics “When my world is shaking, heaven stands, When my heart is breaking I never leave your hands.” Considering the name of my personal blog is ‘Lori in HIS hands’, I knew that was our cue to open up. And we were of course overwhelmed by the love poured out over us.  And so that night I again looked at my gratitude journal and thought, how can I not be grateful for the love God showed us through our friends.

Then the next evening we served at our ministry, and again wondered if we should try to  hide our raw pain. Only a few minutes with our community of leaders, whom  we purported to have an honest and transparent relationship with, and we decided to open up about our grief. We hadn’t always had safe people in Church to share with, and we were about to test the waters with our deepest hurt. And we were not disappointed. Once again, we were overwhelmed by the care people took with our wounds, how they hugged when they had no words, and the words of ‘me too’ poured out from unexpected places. And then the band played ‘It Is Well’ that night, an unexpected shift from the usual songs they played. And so again that night I looked at my gratitude journal and realized the very ministry that encouraged my keeping it has now proved the value in it so profoundly and I wrote in it that night.

And after that I didn’t even have to question each night if I would write, I just continued to find reasons in the coming days, weeks and months, no matter how hard it got. And today, 30 months later, I am still writing in my gratitude journal.

And through my gratefulness, joy has found me.

Infertility Land

I have a dear friend, a spiritual daughter, who at age 17 was diagnosed with cancer. Today, at age 19, she is cancer free, thank God, but the pain and trauma have left her scarred in more ways than one. Yet, it has been a time of beautiful creation too, she has blossomed into a fierce young woman (and I use fierce with all the best connotations possible) who has written some poignant and inspiring words out of this experience. Her blog posts and songs aren't afraid to voice the pain and uncertainties, but the underlying theme is always hope. Unquenchable hope. One blog post in particular resonated with me deeply. She talked about cancer as though it was a land she was forced to travel through, and her analogies struck a chord with my own journey, through Infertility Land.  Here's a few 'snapshots' of my travels through Infertility Land.

Despite the fact my parents spent 5 years in Infertility Land before I was born, and that I have Aunts & Uncles who have resided there, I had no clue I was living so close to it's borders.  In fact, I still have no idea when I really crossed into it's territory, there were no signs telling me 'Infertility Land 100 km ahead', there were no border crossing stations, there was no welcome sign to 'Infertility Land, Population 2 million'.  Even the people there seemed the same, at first.

But as time went on we noticed subtle changes.  I began to notice cultural differences, like men were seen and not heard, and even then, barely seen, at first I wondered if there were any here at all. Then I noticed a slight difference in language, a predominant usage of some words in particular but more so a tendency towards acronyms, like a secret language that you would only understand if you belonged.  Although there were some regional dialects within Infertility Land that I never picked up, I picked up the native tongue of Infertility Land pretty quickly.  Yet I still hadn't quite figured out our whereabouts yet.

So, what do you do when you are lost? You look for directions.  We were directed to the resident expert, one of two, and he seemed to know less than we did.  He tried to show us where we were, in vague and simplistic terms, like we had just taken a wrong turn and ended up there. Then he gave us what you might call a map, with wrong directions that even we in our limited knowledge knew was incorrect.  Just in case we weren't here by accident, he examined our modes of transportation and found nothing wrong, yet he gave us a special gadget anyway, one that should trick our GPS into heading towards Fertility Land.  That seemed like a good idea, for a few days, but then we realized how could we trust it was truly taking us in the right direction. But at least we had a vague map, and the 'You Are Here' circle was indeed inside Infertility Land borders.

We of course were certain we were just visiting.  Several times we saw signs 'Fertility Land this way', but every time we drew nearer to it's borders, or just managed to make it over the border, our vehicle would crash. Sometimes it was just a small fender bender, sometimes it was bloody mess. Every time we ended back up in Infertility Land.

Four years of getting nowhere, of feeling lost, feeling like foreigners, feeling like we don't belong. We were determined not to get comfortable and settle there, yet tired of getting our hopes up just to end up in another crash and still stuck here.  We finally resigned ourselves to finding a home, a permanent address in Infertility Land. At first, it was a gut reaction to another crash, I was bitter, frustrated, hopeless, and so I threw my hands in the air and said, 'Fine! You want me here, I'll stay here. Forever!' I was done with futile efforts of trying to escape.  I tried to get friendly with the natives. I tried to create a new community. My husband, always a homebody, seemed comfortable in the passive role most husbands had here, shut-ins - like ostrich's hiding their heads in the sand, pretending they didn't live at an address that broadcast their failure. I assumed our choice to settle would eventually lead to getting comfortable, but it didn't.  Of the natives I got to know, a lot were hostile, they spewed hatred for those living outside our borders, and those that weren't were either recluses or jumping aboard adoption trains out of the the country as fast as possible.  None of those were options we were comfortable with.

So after two years of unsuccessful attempts to become permanent residents, we decided to consult a different expert. One we should have consulted from the very beginning. An expert in all lands, not just Infertility Land or Fertility Land.  He gave us back our immigration paperwork, for now our Visa's were denied, we were deemed temporary visitors. The expiry date of our visitor status was blurred out and He wasn't telling us when we would finally be able to leave, we would be aliens in a foreign land for the foreseeable future. There was nothing we could do, provide, or control, to expedite our journey out of Infertility Land.  And so we once again began to explore the country-side, looking for the one road that would finally lead us away from here forever. The latest leg of our journey hasn't been without it's crashes, but one thing it hasn't been without is hope.

Because, now we have a different kind of hope.

An unquenchable hope.

My friend and I have mutually been inspirations of hope in our respective journeys, and another way she has inspired my hope is through her music, her first album was released yesterday and of course it is titled Unquenchable Hope. All of the songs are inspiring, but the one that touches my particular journey in Infertility Land is called For the Moment. I encourage you to find some hope through her musical journey, you can find the album here:

http://estherkoepnick.bandcamp.com/album/unquenchable-hope

Better Body Balance

It has been just over one year since I have ended the Clomid, and I know with certainty it was the right decision to end the treatment. While it technically worked, my eggs were more viable, and we learned more about what was going on in my body through it, God showed us after the 8 months it was just not the end of our path, it was only part of it.

I hadn't really shared much here about the Clomid part of my journey other than the initial treatment explanation, then the first month and last month. For those of you who don't know, Chlomid/Clomifene stimulates the release of a stronger egg, a more viable egg, so that if it was fertilized it had a better chance of surviving. This stronger egg that was stimulated would also be a second egg, you are ovulating 2 eggs per month, doubling chances of getting pregnant each month.

And also doubling all cycle symptoms.

And that was on the lowest dose, not only did I go up in dosage 2 times over 5 months, staying on the highest for 3 months, but the specific variation of this medication I was on builds up in the system so symptoms get stronger and stronger the longer you are on it. Not to mention, the last 2 months of treatment I also started taking a really high quality set of vitamins and they had a tremendous effect on my egg vitality (as demonstrated by the sustained viability I mentioned here), but also compounded the strength of every monthly cycle symptom.

So there I was, From February to April, feeling like I had rocks for ovaries for at least a week before ovulation and during ovulation. Then I had a sore abdomen (like I had done 100 crunches every day for the last week) up until PMS started. And PMS went from about 4 days to 7-8, and where I previously only had 1 or 2 symptoms that didn't bother me all that much most months, now I had 3-4 symptoms way more intense than before. And then, TMI, but my period went from a very light flow, with very minor cramping, for 3-4 days to a very heavy flow with 2 days of really uncomfortable cramping for 5-6 days.  All in all, I had maybe a total of 7 days each month that I wasn't in some sort of discomfort.

And of course, there was the estrogen fueled emotions. Granted I am a very emotional person every day of the month, but my PMS emotional sensitivity and quickness to cry is actually pretty tame compared to some women (no judgement, each person's hormones and emotions is there own, just clarifying my PMS emotions are not what some might think of when they think of stereotypical PMS). So, when I began to be much more easily frustrated, offended, sentimental and generally crying for no real reason, I knew the extra estrogen was messing with me. Unless you call Ellen giving a family a free new van a valid reason to weep uncontrollably. I don't, normally.

But that became my new normal. For the last year, this is the one symptom that refused to let go when the rest of the effects of Clomid did. It's not a lot of fun trying to stay composed when you are really fine but your hormones decide they want to have a complete melt down. And it's not just sniffles or dabbing your eye crying, it's often full on ugly cry and when I cry like that I get red and splotchy. I'm not into hiding my emotions but it's hard to convince others of that when you look like a wreck and are saying you are all good!

Interestingly enough I didn't even really realize this until the last few months. I've had a really hard year, some deep depression moments, some seriously frustrated and angry moments, some really sad moments of loss.  But when a pregnant friend kept apologizing for her heightened sensitivity and constant tears, blaming it on pregnancy hormones, it hit me! That's they key! My hormones are still out of wack from the Clomid! Yet, I didn't know what to do about it but wait it out.

Then, a friend who is very into natural treatments for everything thought to mention something to me about the medicinal benefits of essential oils, and through conversations and research I realized I might have an answer to my hormonal imbalance in something as simple as an essential oil. I started applying the oil 2 days before ovulation and already noticed a reduction in those symptoms and now I'm about to see how it fairs up against my PMS, but the biggest change is that my hyper-sensitive crying has reduced drastically! In the first few days I already noticed a huge difference! I can't wait to see what a body in better balance feels like!