Parenting with Endometriosis

I always get incredibly emotional in the spring around Mother’s Day and Father’s Day. For so many years, as my husband and I battled infertility, those holidays would bring us more sadness than joy. It seemed like couples around us were easily getting pregnant as we became more deeply entrenched in fertility treatments. Life was so uncertain. I didn’t know if being parents would be in our future.

I vividly remember my first diagnostic laparoscopic surgery for endometriosis. I was terrified that something would happen to me, leaving my husband all alone in the world. I was terrified that the doctor would not find endometriosis but would instead tell me that the pain and the suffering that I had been experiencing all these years were in my head. I was terrified that even after surgery I would still not be able to get pregnant and the surgery would be all for nothing.

Later that day, after I had recovered from my surgery, the hospital aid pushed my wheel chair through the halls toward the exit as my husband walked beside me. Trying to make conversation, the aid asked, “Oh do you have any kids at home?” The question stung and tears started rolling down my eyes. “No,” I replied sadly. “Well, that’s good” she said, “they would be jumping all over you and hugging you. At least you can go home and rest.” I remember thinking that I would give anything for that problem!

I was so lucky to be able to eventually get pregnant after my surgery, through the help of fertility treatments. But, in the last six years since my daughter was born, I have endured four miscarriages, countless more fertility treatments, a laparoscopic cholycystectomy and, after years of suffering, finally two excision surgeries with Dr. Seckin that have brought back my quality of life. Dr. Seckin and his team of surgeons removed endometriosis from my entire pelvic area including my colon, rectum, bladder, and ureters. During my last excision surgery this past fall, Dr. Seckin even removed endometriosis-related scar tissue from my diaphragm. 

Even when my family building attempts were long over, (I was never able to get pregnant again due to a genetic defect with my eggs) the challenges of living with endometriosis while raising a child lingered on, proving that endometriosis is not just a reproductive health issue, but a quality-of-life issue. Often left unspoken are the challenges of parenting while suffering from a debilitating, chronic illness like endometriosis.

Parenting with endometriosis can be incredibly difficult and at times heart breaking. Like other babies of endometriosis patients, my daughter was born 6-weeks premature via c-section. Every day she spent in the NICU, I blamed my body for failing her. Since my daughter was born, I have endured three surgeries. Before each surgery, just as the anesthesia was about to take me away, I thought of my daughter and pleaded with the universe to allow me to wake up and be able to be capable to parent her. When she was smaller, it was very hard for her to understand why I couldn’t pick her up, play with her and be with her as I struggled to recover. I remember how my husband and I prematurely put her in a toddler bed right before my first excision surgery, in order to make life easier for me post-op. I thankfully had supportive family and friends who helped my husband and me take care of our daughter in this time of need. My heart goes out to all of those moms who are not so fortunate.

Before my excision surgeries with Dr. Seckin, my periods were so horrendous that I couldn’t take care of my daughter on day 1 or 2 of my cycle. I would wake up in excruciating pain, swollen beyond belief and bleeding heavily, and I would have to scramble to find help for the day. I would beg my husband to work from home or ask my parents if they could help out. I can remember my sister-in-

law calling to invite my daughter to my nephew’s birthday party. I was embarrassed as I told her I couldn’t leave the house because I was in so much pain due to my period. Leaving the house seemed like an impossible task.

Infertility and endometriosis have made me more hesitant to make new friends and agree to events or playdates. It was so hard to explain to other people what my husband and I were going through. I isolated myself and in turn isolated my daughter. I feel like for much of her life my husband and I have been in crisis, all due to my health issues. I worry how that has impacted her. 

It is hard to try not to focus on all of the things my endometriosis has deprived my daughter of. Since my excision surgeries with Dr. Seckin, I have a great quality-of-life. I no longer need help during my period. My issues of leg and back pain, diarrhea and frequent urination have improved greatly. But I still battle endometriosis. I am not the most active mom. You will never see me hiking or bike riding with my daughter. I get anxious going for long walks without a bathroom nearby. My daughter asked me the other day, “Mom, why are you always so tired?” Although I have been told that my daughter has more energy than most kids, I feel badly that I constantly struggle to give her the energy she needs. Oh, and the hormonally induced mood swings! I have resorted to marking on the calendar the days in my cycle when I am super impatient and grumpy. I always make sure to explain to my daughter, “Mommy’s feeling really grumpy today. I am sorry if I lose my patience with you.” Or lately I have said “Mommy’s super tired today.” My daughter also gets frustrated with my “endobrain” and my tendencies to be forgetful or distant at times. 

There are greater, more profound things that weigh on my mind. I have not been able to give my daughter a sibling, something that causes my husband and me great sadness. I also worry about passing on endometriosis to my daughter. This disease is something my mother and my aunts have struggled with. The fact that one day my daughter might have to battle this horrendous disease is unthinkable to me.

These heavy burdens I carry in my heart are completely out of my control. Moms can be really good at feeling guilty and are notoriously hard on themselves. I am no exception. I often wonder what my life would be like without the burden of endometriosis. What does it feel like to not be fighting against your body all the time? What would I be able to accomplish if the veil of fatigue were lifted? How much more could I give of myself to my daughter if I weren't battling this disease? 

At the end of the day, my overwhelming gratitude overrides my guilt. I know I am so lucky to have my daughter. I try to think of the positives that have come from this disease. Meeting and working with other incredible patients on a daily basis, who struggle like I struggle, is one of those positive things. This disease has also given me a perspective on life that I think others may not have. I know I am doing my best, and that has to be good enough. My shortcomings do not define me, but they do make me stronger. Because I struggle, I have more compassion for others who are struggling. If I can impart this wisdom on my daughter, I know it will help her in the future to face whatever may come her way.

Casey Berna is a patient of Dr. Seckin’s and an endometriosis and infertility counselor and advocate. To learn more about her story and her practice go to www.CaseyBerna.com.  If you are a patient of Dr. Seckin’s and want to share your story please contact Casey at casey@drseckin.com.

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Patient Reviews

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  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…

  • Jason Curry

    My wife had her laparoscopic excision surgery to remove endometriosis with Dr. Seckin on Jan 30, 2014. She doesn't write online reviews so I'm writing this on her behalf. I accompanied her with each office visit she had. The staff--Lucy and Kim, are very friendly, warm and professional. Dr. Seckin was excellent in every capacity. He spent a lot of…

  • Liz Filippelli

    He is an awesome doctor who saved my daughters life from debilitating endometriosis..she knew instantly upon awaking from surgery that she was better..that wad May and no complaints only praises for Dr. Wonderful Seckin!!

  • Karen N

    I was diagnosed with Endometriosis at 19. I saw several Endometriosis "Specialists" since then, had a few laproscopic surgeries to "remove" the endometriosis and continued to be in pain. I had a hysterectomy in 2012 and was told this would stop the pain once and for all. No such luck! Tired of spending days in bed with a heating pad,…

  • Lauren Rodriguez

    I researched and found Dr. Seckin after dealing with years of doctors who couldn't help me or refused to go the extra mile for their patients. I have to say I am truly blessed to have found such a compassionate and talented doctor. He is exquisite with everything he does, and both his team at the office and surgical team…

  • Kellya Vespa

    Dr. Seckin is a very skilled surgeon. There are not many doctors like him that truly understand the effects of endometriosis. I am lucky to have found him. The staff is wonderful too.

  • Meg Connolly

    Dr. Seckin truly LOVES what he does and cares about his patients from the bottom of his heart. My life has already changed in 3 weeks and I couldn’t be more grateful. Should I ever need another operation for endometriosis, Dr. Seckin will be the one to do it. I recommend him to anyone I come across with similar problems…

  • Elisandra O

    Dr. Seckin is an amazing Doctor he is very compassionate, caring and he will be honest with you. He's been my doctor for 19yrs and I am so grateful to have someone taking care of me that knows what he is doing and knows the best way to treat each and every situation. I would definitely recommend him and his…