Endometriosis

My path to fertility started in March 2015. I had initially started this process in the hopes of freezing my eggs. My journey began at Shady Grove Fertility with Dr. Isaac Sasson where he informed me that I had diminished ovarian reserve and poor egg quality. 

My first round of stimulation failed as I didn’t respond to the stims and my estrogen did not increase. I was devastated. Little did I know how common this was or what the future had in store for me. After the failed stim cycle, I had to wait as I then developed an ovarian cyst and waited for the cyst to go away and get my next monthly cycle. 

I began again in July 2015 where I made it to my egg retrieval. However, they only retrieved two eggs. I was still determined to try again for more eggs. In September, I attempted another round where I had one leading follicle. Dr. Sasson and I decided it would be best to cancel the cycle as I may get one or no eggs. 

November 2015 was my last attempt. With the last egg retrieval, they retrieved four eggs. At that point, I had exhausted my options for loans and savings to try again for another retrieval. 

In June 2018, I felt a palpable mass on my lower right side near my ovary. I went back and forth between multiple doctors including a gynecologist, urologist, and general surgeon. The mass was determined to be an endometrioma. I had painful symptoms in my bladder as well and the urologist found another endometrioma about 2cm by 2cm that was pushing into my bladder. After months of working with multiple doctors, the team performed surgery to remove endometriosis in February 2019. While I was in pain, I did go home to rest for the next two weeks with a foley catheter in place. 

Battling endometriosis

I wasn’t aware prior to that that I had endometriosis. I had painful periods growing up, but through my twenties until I began the egg freezing, I was on birth control which helped control my symptoms. I was hopeful that the endometriosis surgery would be behind me. After the surgery and being 39 years old, I decided I wanted to become a single mother by choice. In the beginning of June 2019, I selected an anonymous sperm donor and reached out to SGF to thaw my eggs. 
 
However, my endometriosis issues were just beginning. On June 23, 2019, I had my first catamenial pneumothorax. Catamenial pneumothorax is a rare condition that affects women. Pneumothorax is the medical term for a collapsed lung, a condition in which air or gas is trapped in the space surrounding the lungs causing the lungs to collapse. Women with catamenial pneumothorax have recurrent episodes of pneumothorax that occur within 72 hours before or after the start of menstruation. Catamenial pneumothorax is caused by the abnormal migration of endometrial tissue from the lining of the uterus to other areas of the body such as the diaphragm or the space in between the membranes lining the chest cavity wall and the lungs (pleural space). 

I walked around for days in pain, not realizing the possibility that my lung collapsed. I was otherwise healthy and lived a very active lifestyle. I went to my primary care doctor where I complained about the pain, and he instructed me to get a chest x-ray. As soon as I had the x-ray, they sat me down very cautiously and told me that my right lung had collapsed 50%. They needed to take me to the ER to have a chest tube inserted. I would be in the hospital for a few days. 

I was discharged from the hospital at the beginning of July. I then got the results of the blastocyst. Of the 6 eggs that I had frozen, 5 made it through the thaw. I only had 1 embryo that made it to a blastocyst, which was abnormal. I never made it to transfer and my hopes of using my own eggs were destroyed. 

Through all the sadness, I still had the determination to try one last egg retrieval. Dr. Sasson said it was my choice, so we decided to give it one last shot. I bought the medications and waited for my next period. I got my period the morning of November 5, 2019, and was so excited to go in the following day for monitoring and get started. Unfortunately, I never made it to monitoring. My lung collapsed later that day. I was back at the hospital where they put in a chest tube and planned to do surgery a few days later. The doctors did a video-assisted thoracoscopic mechanical pleurodesis. A pleurodesis is a procedure done to treat repeated collapsed lungs or fluid buildup between the lung and chest wall lining. This causes irritation or swelling between the two layers, helping the lung stick to the pleural lining. The recovery was painful, and I had a reaction to the topical medicine which caused blisters and a yeast infection on the incisions and chest tube sites. 

The lung didn’t attach to the pleural lining, though. On December 7, 2019, I got my period and lived in fear all day that my lung would collapse. I got through the day and woke up the following day thinking everything would be okay. As soon as I stood up, I knew my lung collapsed again. I was heartbroken. I was in the hospital for the week with the chest tube, and even had the tube replaced for a larger tube as my lung wasn’t sealing. By the end of the week, I was so sad to still be in the hospital and just wanted to go home. The doctors let me go home with a portable tube. Eventually, on December 19, 2019, my lung had sealed and the doctors removed the chest tube. 

Finding the right medical team

I had a second opinion by another cardio thoracic who told me that he couldn’t help me nor could anyone in the greater Philadelphia area. He had only seen this case with one other woman who went to Atlanta to have surgery. The doctor put me in contact with her, and she provided me support groups and information what she learned. There are not many endometriosis doctors that have experience with catamenial pneumothorax and work with cardio thoracic surgeons. I found one doctor in Atlanta and the other in New York City. I opted for New York City as that was closer for me. I reached out to the doctor in New York City who is the co-founder of the Endometriosis Foundation of America. 

I had tried continuous birth control in the meantime to not get my period and, thus, not have my lung collapsed. The birth control didn’t suppress me enough as I was spotting and had my fourth lung collapse on January 23, 2020. My lung sealed four days later, and I was discharged. By the next day, I still didn’t feel right and was paranoid my lung was going to collapse again. The doctors in NYC had prescribed me a stronger birth control, but I didn’t get a chance to be on long before my lung collapsed on January 30, 2020 my fifth time. Again, I was in the hospital for 4 days with a chest tube. 

Through the pandemic the birth control suppressed my period. I finally had my surgery on June 5, 2020, at Lenox Hill Hospital. It was a weird feeling to go to the hospital the morning of my surgery by myself. My mother could visit me in the hospital between 3:00 PM and 7:00 PM. The anxiety that I felt in anticipation of the surgery and through a global pandemic was overwhelming. 

The endometriosis specialists and the cardio thoracic surgeon found the fenestrations (holes) in my diaphragm that were causing my lung to collapse. The cardio thoracic did another mechanical pleurodesis on the bottom of my lung from where it was not attached after the first surgery. They also removed endometriosis throughout my pelvic region. They had to call in an emergency urologist as my bladder was firmly adhered to my uterus. I again had a foley catheter for two weeks. 

Heartbreak and loss

In the fall of 2020, I took Dr. Sasson’s advice and pursued an egg donor. I selected the donor who went to retrieval, and I received five blastocysts. I had an embryo transfer in December 2020 and was finally pregnant. I was feeling good and continuing at SGF for monitoring until I would graduate. Unfortunately, that didn’t happen. At 6 weeks, the embryo had a strong heartbeat, but at 7 weeks there was no heartbeat.  

I was devasted and broken. I had such high hopes that after everything I had endured my transfer would be successful and I would be able to deliver a healthy baby. I mourned the loss and still do. 

Finding a path forward

A few months later in March 2021, I attempted another embryo transfer. As soon as I began the meds, I felt pain in my chest from the estrogen. I contacted my doctors in NYC as well as informed Dr. Sasson. I had an embryo transfer the beginning of April and shortly after that my chest pain increased and I was short of breath. I was pregnant again, but when I went for the six-week ultrasound the heartbeat was not strong or what should be expected. At seven weeks, Dr. Sasson and I scheduled another D&C. 

About a week or two after the D&C, I went to the ER as I suspected my lung had collapsed which it did. I was in my local hospital for two weeks and my lung wasn’t sealing. The local cardiothoracic wanted to do an intervention surgery with another pleurodesis, but I contacted my cardiothoracic in NYC to do the surgery. I was transported by ambulance to Hoboken and had my third VATS and pleurodesis almost one year to the day since my last surgery on June 4, 2021. I was in the hospital for 18 days and after my discharge, my lung collapsed for the seventh time. Being that I had just had surgery, the cardiothoracic doctor wanted a CT scan. By the time my insurance approved the CT scan, and I was able to schedule it, my lung did seal on its own. 

I wanted to do another embryo transfer, but also knew my body needed to heal. I waited a few months, and Dr. Sasson and I moved forward in November 2021 with a modified natural transfer without the del estrogen. The transfer didn’t take, and I didn’t get pregnant. That was my third embryo and I only had two embryos left. 

I wanted to try again on that same protocol as I felt well, but I was perimenopausal for months. I waited and would go to SGF every two weeks or so for bloodwork and ultrasounds to see if I had any follicles forming. Months went by and in July 2022, I finally ovulated. When I went the day of my transfer, Dr. Sasson informed me that they thawed an embryo, but it didn’t look good, so they thawed the last embryo. I was so nervous to not get pregnant or have a miscarriage again.  

Worth the wait

My prayers had been answered and I was pregnant. I was cautiously optimistic for weeks. With each passing week and positive ultrasound, I breathed a sigh of relief. 

In April 2023, my miracle baby girl was born. The years of infertility, surgeries, and lung collapses will not be forgotten, but she was worth the wait. I’m so in love with her and can’t believe my dreams came true. Dr. Sasson was so wonderful through my journey with his support and appreciation for my persistence. I never gave up and am so grateful for everyone at Shady Grove Fertility.