For this installment of On the Journey With…, I’m interviewing Emily. Emily is extremely active on Twitter @EmilyAldargator. This is another long interview, but she has a ton of information and wisdom to share. I especially resonate with what she says at the end about dealing with jealousy.
Q. What struggles did you experience while TTC?
A snippet of our story: We were told by our doctor that he had only had 6 couples in his clinic not “take home a baby” after 3 fresh cycles of IVF. Sadly, we became his “lucky number 7”. This is not an “honour” I take lightly, and it was almost enough to make us quit. He said that he would have to refer us to someone else if we didn’t have a baby at the end of 3 IVF cycles. Luckily, the clinic agreed to keep us on until we used up our frozen blastocysts that we had created with them, so we had an “okay-looking” 1BB frozen blastocyst that we transferred in a natural (non-stimulated cycle) as a last ditch effort before following up with our local children’s aid services about their foster to adopt program and ended up with our “clinical pregnancy” (heartbeat detected on ultrasound).
Our official diagnosis is moderate male factor infertility (DH has low motility and sperm count which finally showed improvement when he decided to comply with treatment, but not enough to allow us to do straight IVF instead of ICSI), but after years of IUIs it was discovered that I also have endometriosis and possibly some immune issues that likely have contributed as well. My diabetes has been very well-controlled, so it was not thought that it was in any way impeding our progress with fertility. We have spent about $45,000.00 out of pocket in expenses (And that is not including the medications that were covered by very generous private health insurance plans; we ended up blowing through our lifetime fertility coverage much faster than anticipated) and will be paying off our line of credit for a long time to come… but… fingers crossed… I want to be able to say that it has been worth every penny, every tear, every injection, every painstakingly slow step along the way.
We had a “chemical pregnancy”, our very first “positive” (very early loss with a positive pregnancy quantitative HCG test but did not progress long enough for heartbeat to be detected on ultrasound) with our third fresh IVF cycle after 13 medicated IUIs (4 with mixed DH and donor sperm). We were incredibly devastated to have been given this gift and had it ripped away from us on Father’s Day after almost 5 years of “trying” and 3 years of treatment at a fertility clinic, but this also gave us hope that yes, indeed, we could conceive. It was just that this wee one may have had chromosomal abnormalities (which accounts for about 70% of all early pregnancy loss) or that my overactive immune system was being a jerk (I’ve been treated for psoriasis, diabetes, endometriosis, insterstitial cystitis, irritable bowel syndrome that may have been undiagnosed celiac- all conditions that are related immune system dysfunction or chronic inflammation in the body).
I lost part of my left ovary in the removal of endometriomas in a surgery in the months between IVF 1 and IVF 2. To my immense displeasure, no appreciable difference was noted in our egg quality or quantity in the IVF cycle after the surgery, despite being told that these would likely improve and that our best window for conception was up to six months post-surgery (this pregnancy occurred at 9 months post-op). The presence of endometriomas or pelvic adhesions are correlated with a higher incidence of ovarian autoantibodies which damage egg quality and quantity and create a toxic atmosphere in the womb, which can cause implantation failure and early loss. My endometriosis was suspected because of repeated ovarian cysts on scans, pain during ovulation since I was 12, painful periods, and extremely painful egg retrievals (it is thought that injury to the ovaries causes extreme inflammation in endo patients and thus a lot of extra pain). We treated my endometriosis with laparascopic electrocautery. I’m not entirely convinced that it did more good than harm, and much of the recent literature is now recommending leaving endometriomas on the ovaries and ignoring them during IVF instead of doing surgery, as the loss of healthy ovarian tissue can be devastating to those with decreased ovarian reserve.
After our second failed IVF cycle I decided to see a Naturopath to discuss some options for increasing our egg quality and quantity before our third and final fresh IVF cycle. With the nutrition and lifestyle changes before egg retrieval we ended up literally tripling our numbers… it was truly a miracle!!! I went from being considered a “low responder” with “possible unexplained diminished ovarian reserve” to 2 make it to the freezer as 5-day blastocysts of “okay quality”. Even though they weren’t the “top of the class”, our blastocysts were miracles in and of themselves. We had never had embryos make it to freezing before… growing them out to freezing is often referred to as “poor man’s PGD”, for those of us who can’t afford the extra expense of doing pre-implantation genetic diagnosis to see if our embryos are genetically normal. The weak embryos (and those less likely to implant) are weeded out by day 5, so only the strong survive… even if they are only “okay looking”. Although IVF 3 did not “work”, it did indeed show me that some lifestyle and nutrition choices could make a huge impact on my overall health and my egg quality and quantity, thus increasing my chances of success.
Q. What was your lowest point and how did you get through it?
We’ve had so many lows on this journey. Finding out we lost our baby on Father’s Day pretty much took the cake. Father’s day has always been hard on us. My husband is estranged from his father (his dad doesn’t want anything to do with the kids he fathered), my father passed away, and here we were set to celebrate the BEST FATHER’S DAY EVER with a BFP… only to be told that my HCG levels had dropped so low that the pregnancy was not viable. We had just lost both of our fur babies before this, and we were both devastated and so incredibly winded from the blow. I forced myself to take a walk downtown that day and to photograph everything that made me feel ANYTHING–trees, grass, birds, butterflies… focusing on the beauty that was still left in the world, despite the great loss that we felt. I cried for most of the walk, but it was therapeutic, and I worked through my grief with each step. I also hired a counselor and did some work with reiki and other healing modalities to help release the pain. I spent a few hours crying in the bathtub and bed, and I hugged my husband for hours. No words, just hugging. We also decided that day that we would use up our frozen embies and then be completely DONE with the whole fertility gammit. It felt good to have a plan. It was good to get info from the Family and Children’s Services and know that there were some other family building options that would not break the bank (we were so much in debt we could never have considered a private domestic or international adoption). I didn’t want to wallow in the self-pity for too long, lest I get lost in it and never be able to find my way back up, but I also allowed myself time to cry, to scream, to journal, to tweet, to FB, to rant on FertileThoughts, to sing and play guitar… anything and everything to vent.
Q. You’re very active on Twitter. What led you to tweeting about your experience and how has it benefitted you in your journey?
My way of dealing with feelings is writing/speaking… I need to verbally process my feelings in order to feel better. Like many other men, hubby likes to hole up in the basement and play computer games to process his feelings, and needs his space to get through hard feelings. Neither way is wrong, but they are sometimes incompatible, and the support I’ve received from my tweeps, FB friends and online support groups has literally kept me sane and prevented what could have been severe depression.
I created an alternate profile on Twitter and Facebook, separate from the ones I use for my personal life. I highly endorse making profiles that are just for fertility support with a false name, as you do not have to worry about your boss or co-workers reading about your failed cycles. I am “Emily Aldargator” on Facebook and @EmilyAldargator on Twitter. I am not able to use my real name online as we have family members who object to the use of infertility treatment for religious reasons. I frequently post info on studies and articles related to infertility and pregnancy after infertiltiy. I have received so much support and love from others on FB and twitter… and since they are all over the world I can be up stressing at 3am and have someone answer a question or offer a long-distance hug instantly!!
Within Facebook, my favourite support/resource groups are the following (and can be found by searching in the search bar within Facebook):
- “Fertility Friends” (a group of folks trying to conceive, sharing articles, info, and support)
- “Creating a Family: Talk about Adoption and Infertility” –This group is run by Dawn Davenport. She is an amazing asset to the IF community!! She runs an hour-long podcast that I would listen to on my daily trips to the doctor in London. Great presentation of current research with the human edge of how the treatments affect us as human beings. Her website with links to the podcasts is at http://www.creatingafamily.org/
Q. What advice would you give to women who are currently dealing with infertility?
Be open to meditation, acupuncture, reflexology, yoga, reiki- whatever works for you! There are great ways to learn mindfulness and relaxation techniques. You NEED to find ways to nurture yourself through this, and many can be found for FREE online. Self-care takes the cake. Turning down invitations to baby showers, crying when you need to, finding friends or professionals to talk to- whatever you need to do to nurture yourself through this time, DO IT. What other people think of you is their business, not yours. Your number one priority is taking care of you and your partner through these tough times.
Dealing with jealousy: I do NOT advocate trying to force ourselves to be happy and cheerful all of the time. I am a strong believer in allowing ourselves to be real and to feel our feelings- just not at the expense of others.I think that it is okay to acknowledge that we are happy for our friends’ successes but also that we are sad or jealous or frustrated with our own situations. That separates out the negative thoughts and allows us to recognize that the real problem is the heartache of infertility, not the baby bump of a neighbour. I openly admit to friends that I am “completely jealous and so happy for you.” It’s okay to be sad for ourselves and still celebrate the success of a friend. It’s okay to cry when we see someone else’s baby bump or ultrasound proudly displayed on Facebook- as long as we separate the sadness for ourselves from the joy of new life in another! It stings to get a baby shower invitation or open up a Facebook account to yet another pregnancy announcement, but I gave myself permission to be excited for them and still sad for me. I was in a place where I coudn’t muster the strength to attend baby showers for a long time, but I didn’t tell people that I was not attending because I was heartbroken and their joyful announcement sent daggers into my heart. They DIDN’T need to be made to feel guilty/upset. I sent a gift with a mutual friend, a card saying how very excited I was for them, and apologized for not being able to make the party due to other commitments. No hurt feelings.We need permission to grieve the loss of our dream babies with each failed cycle. If you feel like you’re going to burst out into tears at the next family reunion or at the next baby shower, then for heaven’s sake PROTECT YOURSELF from it! Nobody needs to know why you aren’t attending. Be kind and gentle with yourself and allow yourself to cry, write angry phrases in your journal, or whatever you need to do to cope. You owe it to yourself to feel your feelings, and you owe it to others to work them out without making anyone else feel bad.I never wanted to turn into a bitter person who resents others. Resentment is such a waste of my precious energy… energy that can go into baby making!!Pregnant friends are NOT the enemy, even those who seemingly take the miracle of life for granted. The devastating disease of infertility is the enemy, and I pray that we will all overcome!!
Q. Anything else you’d like to share with my readers?
My mother’s day affirmation that I wrote for myself when I was going through treatment: I am proud to say that I am already a mother. I just haven’t met my child yet. I have already been a mother to several beautiful embryos, celebrated their blessed creation and each intricate cell division, and mourned the losses when each decided that he or she was unable to stay on this Earth. I am a nurturer, a caregiver, and a role model for the many children in my life (none of whom happen to be biologically related to me). I harness the creative potential of all that it is to be a woman, and I gladly share my gifts with those around me. This Mother’s Day I choose not to dwell on years of fertility woes and all of the loss and grief associated with this journey. I choose to celebrate the unending love that I carry within my heart, and the amazing mother that I will be and ALREADY am. Won’t you celebrate with me?
Many thanks to Emily for sharing her infertility story. Please leave her a comment below to let her know you appreciate her, and consider pinning this image so others can find her story.
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