Jennifer Zigler
I had always pictured myself being a mom. I had a note file in my phone of baby names. I had dreams of a future family. Dreams of bath times, reading books, game nights, movie nights, and family traditions.
My husband and I got married in the fall of 2015. We decided we wanted to wait a year before we started trying. What naïve people we were thinking we had any control. I knew I had endometriosis and I was aware I had been on birth control for many years. I had always heard it would take time for my body to readjust to life without birth control so I didn't expect results right away. Results weren't happening but I wasn't panicking. We kept rolling with life and told ourselves we weren't really being serious with trying and it was fine. Looking back, I assume the denial was my way of staying sane.
I had a lingering hip issue that I finally got checked out and it was determined I would need surgery. In April of 2018 I had surgery to repair a labral tear and an impingement. After weeks of recovery and PT we got back to trying. This time we were going to do it "right". I bought ovulation strips and was tracking my cycle. We were scheduling days (how romantic!). Still no success. During this time, my endometriosis symptoms starting making their presence known again. All these years off birth control were doing me no favors. I was going downhill quickly. I remember the appointment with my GYN when she said we need to do surgery. I felt hot and dizzy from shock. I was scheduled for April 2019. Almost exactly a year to date from my hip surgery. I felt such an incredible amount of shame and embarrassment over what felt like a broken body.
Preparing for surgery was intense. It was so weighty to make decisions on what I was and was not ok with removing. My biggest fear was "what if they find nothing?". I was in such severe pain that I was desperate for relief. When I woke up, I remember first asking my husband if they found anything and they sure did. I was diagnosed with stage four deeply infiltrating endometriosis, PCOS, IC, and a blocked right tube. After recovery my GYN and I got right back to our infertility plan. We felt it was risky for me to be off birth control too long and risk endometriosis coming back. We started with oral medication. After no success the dosage was increased. Still no success and the dosage was increased again. At that point she referred me to an infertility clinic.
My husband and I met with the doctor and our heads were spinning after that first meeting. During testing the doctor established I had polyps and recommended a hysteroscopy. That was hands down the worst experience of my life. I nearly passed out in office from the pain. The "light pinching" that was described to be was so far from the truth. I vomited when I got to my car and sat there crying all alone. I told my husband not to come because the doctor made it sound so casual and routine. Again, I was flooded with shame that I was the problem and I just couldn't handle the procedure.
After the hysteroscopy, he felt confident there were no additional obstacles and we could move forward with treatments. Again, I was taking high doses of oral medication and prepping for our first IUI procedure. The day comes and then we wait through the dreaded two weeks. No luck. Still no pregnancy. With my right tube blocked, the doctor did not want to do an IUI the next month but wanted me to still take medication. Another month goes by. We're now in the third month and what he said would be the last IUI. It's March 2020. I am loaded with meds and get a call from the clinic that the IUI is not considered medically essential and they could not see me. I understandably break down. They urge me to keep taking my medication in case anything changes. Two days later I get a call the IUI is back on and I can be seen since I was already "in process". I am elated! Then I get a third call saying it's canceled again. I spend the next few weeks adjusting to all the medication working out of my system.
About 8 weeks goes by and I get a call from the clinic they're opening back up and my heart drops. I feel a wave of dread wash over me. My husband and I decide not to go forward with more treatments. My physical and mental health were the lowest they had ever been while on all the medication. I couldn't see myself going back on it. We knew IVF was more intense and my odds were low. We made the decision to walk away childless.
I never became pregnant. I never saw two pink lines. The next few years were dark. My depression and anxiety were at an all-time high. My depression caused me to withdraw but my anxiety would surface and tell me things like "if you cancel again, you'll never get another invite" "you're going to lose all your friends". I told my husband if he wanted a divorce I would understand. We went into this relationship both wanting children and I couldn't deliver. If he wanted to move on and have that family with someone else, I wouldn't hold it against him. He understandably was hurt that I would even suggest that and thankfully did not take me up on my offer.
In every sense of the phrase "fake it 'til you make it" I got dressed and forced myself out the door. I celebrated many friends and family getting pregnant and having babies. I was elated for them and simultaneously devastated for myself. I showed up to holidays, parties, work, and church totally numb and a shell of myself. I went back on birth control out of caution. I found my mental health declining more. Off birth control I felt better mentally but was in physical pain. On birth control my mental health suffered but my physical pain was in check. I felt like I couldn't win either way. I rolled the dice and I chose my mental health and went off birth control for good.
The calendar year rolled over to 2023 and ushered in the worst year of my life. My endometriosis symptoms were back with vengeance. Based on symptoms, my GYN was also suspecting adenomyosis. The pain was so intense I was frequently vomiting. I had such severe bloating that any sort of waist band touching my stomach was torture. I was experiencing nerve pain and my left leg would twitch and tingle. My lower back was in constant pain. Bowel movements (when they did happen) were so intense I was nearly passing out on the toilet.
I was working closely with my GYN on a plan. We were trying to hold off on surgery if at all possible. The proposed surgery was excision and a hysterectomy. We both wanted to make sure this big of a decision was the right one. I just couldn't reconcile that I would need another surgery. I could barely function. I was burning my skin with heating pads because the heat was so high in an effort to take the edge off. I was using stim packs. I tried pelvic floor PT. Nothing was making a dent. As a last-ditch effort, we tried Orilissa. It was quickly discovered that was not the medication for me. I had heart palpitations, severe bouts of dizziness, and worst of all thoughts of no longer being earthside.
The last test my GYN wanted to try was for me to come in office for a procedure to numb my cervix with lidocaine. If I felt relief, she felt confident that a hysterectomy would help. While a hysterectomy won't cure endometriosis, it is an effective route for adenomyosis. If my cervix is numbed up and I had a decline in symptoms, it was safe to assume a hysterectomy would be effective. I was thankful for how serious she was taking my experience and wanting to ensure that I would indeed find relief. The last thing either of us wanted was to go through a major surgery and for me to still be in pain. The day arrives and I go in and receive 6 injections in my cervix. I head home and wait. I experienced my first pain free 24 hours in years. I called with the update and we scheduled my surgery. Excision and a hysterectomy were scheduled for January 5, 2024.
To say I wake up slowly from anesthesia is an understatement. I look back at photos of me in recovery and laugh at the thought they thought that girl was getting up and heading home! I opted to stay overnight. I had wonderful nurses care for me overnight. Morning rolls around and I was in less pain leaving the hospital on the 6th than I had been in years! Recovery was a breeze (thankfully!). Pretty sad when post-surgical pain is less than your previously normal day to day! I curled up in bed with books and my cats. My husband cared for me with such love. He was so happy and relieved to see how happy I was to finally have relief. Friends brought meals and sent flowers. I felt great physically and felt loved and supported.
My hysterectomy was a turning point for me. I had a finality in knowing that my journey was done. There was no lingering "it could happen" possibility. I felt at peace. 2024 was my come back year. I made plans without scheduling around my cycle. I said yes without fear that I would have to cancel last minute from a flare up. I went on dates, went to concerts, ran races again, and traveled. While we came out of the infertility journey childless, I ended up with a quality of life I didn't have before. I feel like I am finally living life. It is not the life that my husband or I planned but we are making the most of it!
