The Reality of Infertility: My Endometriosis Story

Kunbi O / Monday August 28, 2017

endometriosis and infertility

Happy new week friends! As my husband and I approach our 5th wedding anniversary this Friday, I find myself reflecting on our marriage so far and what we’ve weathered together. One thing that has been weighing on my mind to discuss, is our struggle with infertility. I am generally a somewhat private person ( I find it easier to share others’ stories than speak up myself) so please bear with me if I start to ramble. Adulting is already so fu**k**g hard so it saddens me to hear and see so many people suffering in silence. So, this is my attempt at sharing my own “real” with you. It’s a really long story, so I have broken it down into parts, Here’s Part 1, I’ll be back with more on Wednesday!

  • The Beginning

As 26 year old newlyweds, we knew we would wait at least a year before we started trying. So, in our minds, we were preparing to become parents ideally the year after our wedding. That was the plan, until a dark unknown became our reality. That unknown was a 13 letter word called Endometriosis.

endometriosis diagram via mayo clinic

Okay, let me back up a little with what Endometriosis is. (En-doe-me-tree-O-sis) is a disorder in which tissue that normally lines the inside of your uterus (the endometrium), grows outside your uterus. Endometriosis most commonly involves your ovaries but can grow anywhere. What this means is that since there’s uterus lining tissue in random places,  you bleed and hurt from these places when your period comes. YIKES!

Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.” – MAYO Clinic

  • Diagnosis

I was diagnosed with Severe Endometriosis in October of 2014 after an emergency check up with a new OBGYN in Stamford, CT. I had booked this appt because I was having random, sharp tugging pains in my lower abdomen that lasted several minutes each time and made it impossible for me to sit up. I’m no stranger to pain as I have had intense period pains since I was in college. I’m talking time-off, pass out type pain. Anyway, I wasn’t on my period and these sharp unbearable pains were happening frequently and wouldn’t go away unless I laid in one position for the rest of the day.  My regular ob/gyn was on vacation, so i found a new name and hurriedly scheduled an appointment.

Dr. Heading (a man I will forever appreciate) did an ultrasound within minutes, looked directly at me, and in the most candid and direct way said “You have endometriosis…. and it’s bad” My heart sunk because I’ve kind of always had that term loosely in the back of mind but hearing it come out was shocking and confusing. I didn’t know much about the disease and how my life would change forever. One thing I DID know about endometriosis was that it couldn’t be officially diagnosed without surgery so I had immediate questions about his diagnosis. Dr. Heading was kind, direct, and very detailed. He explained to me that the endometriosis had caused blood to back up from various places outside my uterus which in turn formed an 8cm chocolate cyst called an endometrioma– this was what he could see from the ultra sound and that was what was causing my sharp pain. He recommended immediate surgery to remove the cyst before it burst on its own. While in there he would attempt to remove as much of whatever endometriosis he found when he opened me up. SIGH!

endometriosis surgery

  • Surgery

In December 2014, I had the surgery. After I came to, my doctor let me have it. The diagnosis was Stage 4 Endometriosis ( they run from Stage 1 to 4) with a manifestation in just about all my lower organs…. from my ovaries to my bowels and my poor appendix (he actually couldn’t find my appendix because it was lost in the endo-sauce). My right ovary got the brunt of it and had the endometrioma (large chocolate cyst) growing on it but he was able to clear out as much of it as possible without permanently damaging them. Now, it was time to heal and see how things worked post-surgery.

endometriosis surgery recovery

  • Trying to Conceive

I think even after the surgery I had no idea the severity of my condition and what it would bring for my future. Before the diagnosis, we had been trying to conceive for a year, and it only then sunk in that it was a futile effort. Nothing really made sense but I felt hopeful that with surgery, things would go back to “normal”. After a few months of healing, we were permitted to start trying on our own again and instructed to come back if nothing happened. Well… Nothing happened.

A year went by and we were referred to an infertility specialist. The longest year of our lives.  The doctor reviewed my case and made his official recommendation: I should seek assisted reproductive help. The endometriosis was severe, continuous and a general barrier moving forward. Although the surgery had taken care of a lot of the existing tissue, my condition still remained and it would really need to be controlled for any fertility to occur.  Since we were moving to a new state within the month, we put everything on a back burner and continued to try on our own with the hope that something would happen. Well….Nothing happened.

We packed up and moved to Pennsylvania with fresh hope and a new Doctor. We found a Reproductive Endocrinologist (RE) near our new home and braced ourselves for the new normal. Lord, we weren’t ready. Let me repeat that: WE WERE NOT READY! I’ll save that for the next post because there’s A LOT to say. Thanks for reading guys. You can read Part 2 here.