Infertility was like a line drawn in the sand. There was life before my “unexplained infertility” diagnosis and life after it

Name: Sue

Age: Now 59

Time TTC: 10 years

Diagnoses / Treatments: IUI/s, IVF, Unexplained Infertility, Female Infertility, ZIFT (Zygote Intrafallopian Transfer)

Strategies: Ovulation Charting / Tracking, Fertility Counselling, Acupuncture, Lifestyle Changes, RESOLVE Support Group

My fertility story

My fertility story is so long and involved taking over a decade to conceive our one and only son. For the full incredible story, filled with overwhelming obstacles and the ultimate joy, I invite you to read my book titled, “Detours: Unexpected Journeys of Hope Conceived from Infertility.”  However, here is a brief synopsis. I started TTC in 1986 as soon as I was married to my husband and US Navy officer, LCDR Robert (Bob) Johnston.

After about 6 months of not getting pregnant, we tried for another year with help of our OB-GYN, where we had all the initial workups: postcoital test, HSG, sperm motility/morphology tests, hamster egg penetration tests. Everything was normal and we were diagnosed with unexplained infertility. Moving on to an RE we had a successful laparoscopy and started doing IUI’s. (I truly cannot remember how many… 15-20?) In the midst of our IUI’s, Bob got orders to the Philippines and we were stationed there from 1989-1991.

I had another diagnostic laparoscopy in 1988 before we left the country, and I took Clomid with me to the PI so I could try treatments over there. I had a third laparoscopy about 6 months after arriving in the PI. I tried a treatment using Danocrine, a drug that stopped my menstrual cycles and put me in an artificially induced menopause state for 8 months. The theory was to restart my cycles and studies had shown that 70% people got pregnant after the therapy. It didn’t work.

Returning to the US in 1991 with no baby, I had my fourth laparoscopy with and started IVF. for my first IVF, I transferred 6 embryos (many of which had developed to blastocyst stage) in late November 1991. No pregnancy. Second IVF 8 embryos in 1992, no pregnancy. Third IVF 6 embryos in January 1993, no pregnancy. Fourth embryo transfer in August 1993 was a combination. Two embryos were transferred via IVF into my uterus. Three embryos were transferred via a laparoscopic incision in my navel and placed directly into my fallopian tubes.

I was also given an anti-rejection medication called Medrol, which is typically used in patients who have organ transplants. It was supposed to help them from rejecting the organ, so they tried it for my embryo transfer. This was the cycle that worked for us. I delivered a healthy baby boy 9 months later on May 1, 1994. I tried another combination IVF/ZIFT in 1996 when our son was 2 years old, but it failed. All in all, I had close to 40 embryos transferred and had only one child. I ended up with an ovarian cancer scare in and had to have my ovaries removed, which was the end of our journey to have a child.

The lowest point in my journey and what helped me recover from it

The lowest point in my journey is when my husband received official US Navy orders to Subic Bay, the Philippines for a 2-1/2 year tour. I was at the two-year point of TTC and I had just had a laparoscopy and was starting with a new Reproductive Endocrinologist when out of the blue he received his overseas orders. I knew that the resources for infertility patients were next to nothing in the Philippines.

I was plucked away from my job, my home, my family and friends and even my country. But the worst part was leaving my state of the art infertility treatment and going to a third world country. To be perfectly honest with you, it wasn’t until our time was up in the Philippines and we returned to the United States again 2-1/2 years later that I started to recover. When I was finally back home in the USA where I could pursue my infertility treatment, I regained hope that maybe one day I’d be able to have a baby.

Where I am right now in my journey

My husband and I resolved our unexplained infertility in 1994 when we finally had our one and only son. Infertility has affected me so profoundly that I wrote my book to provide a source of hope and inspiration for the infertility community. I am an infertility advocate. Each year I lobby Congress in Washington D.C. for affordable access to care for ALL people who want to build their families. In addition to my book, I also have created my own line of infertility support gifts and greeting cards called, “In-Fertility & Friendship.” I have a blog by the same title. I hold a monthly RESOLVE-affiliated Peer-Led Support Group and I am an infertility helpline volunteer.

What I learned from my fertility experience

I have learned so many things from my infertility journey. They are far too numerous to consolidate in here. Infertility was like a line drawn in the sand. There was life before my “unexplained infertility” diagnosis and life after it. I don’t think I knew the depths of my fortitude and resolve until I faced infertility. I became a warrior. I learned that life doesn’t always travel in a straight trajectory. There are roadblocks and setbacks and detours, thus the name of my book. I have learned that the best things in life are worth fighting for. I have learned to be patient even when my patience was tested to the limits year after year. I’ve learned that dreams are an essential and fundamental part of human existence and I have learned to never give up on pursuing my dreams.

If I had to start my fertility journey again, what I would do differently

Since my journey started several decades ago, I didn’t have the many options for receiving support that is available today. I suppose the only thing I would do differently is to become involved with an infertility support group earlier.

My favourite resources about fertility (websites, books, blogs or articles)

Of course, I’m biased and think that my own website is a great resource! Please check out www.theinfertilityadvocate.com Also, I think you will find my book “Detours: Unexpected Journeys of Hope Conceived from Infertility” to be a great resource full of hope, inspiration and 11 different options to resolve your infertility.

What I would tell someone else going through infertility right now

At the end of each chapter in my book, I give a lot of tips for what I wish I’d known when going through infertility. I’ll share a few of the most important ones here. First of all, be kind to yourself. Do whatever it takes to feel better. Get a massage, take a vacation, allow yourself time to grieve. Then pick yourself up and move forward. Find a group of loving supportive people where you can have a respite from the world and get help when necessary. If you cannot find a support group, start one. The RESOLVE website has information on how you can start your own support group. You cannot go through this alone.

Also, be supportive of your partner. Infertility can be so difficult and no two people handle it the same. In the end, make time for each other and continue to nurture your relationship. And finally, do what you have to do and don’t worry what others will think of you. If you cannot go to a baby shower because it’s too painful, don’t go. If you want to stop IVF treatments and pursue adoption or surrogacy, then do that. Follow your heart so in the end, you will have no regrets. And most importantly, please know that somehow, someway you will find your resolution.

My favourite inspiring fertility quote

“You can never cross the ocean unless you have the courage to lose site of the shore.”
~Christopher Columbus”

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