Sarah's Surgeries

My name is Sarah. I recently had two major surgeries. One diagnosed me with endometriosis, and failed to treat it with a technique called ablation. Following that surgery, I sought out a specialist who recommended a total hysterectomy (removal of uterus and cervix), bilateral salpingectomy (removal of fallopian tubes), cystoscopy with treatment for interstitial cystitis (chronic bladder pain), and excision (removal) of more than five endometriosis lesions located throughout my pelvis. It was a lot to go through for someone in their early twenties. But let's set the medical terms aside for a moment so I can tell you a little about my story.

 

My diagnosis story

In 2019, I was studying at a state university after working hard for years to transfer in from community college. During the school year, I noticed my health deteriorating. I experienced intense nausea, painful menstrual cycles, and fatigue. The school's medical providers ran bloodwork and tests to figure out why I wasn't feeling well but came back with no answers. I worried the symptoms were due to stress. So in 2020, after one year at university, I decided not to re-enroll.

 

In 2021, while working and away from the stress of school, my health was still going downhill. I wasn't taking my symptoms seriously until one day in July, just weeks after my 24th birthday, when I woke up with such severe pain I could not speak or move. My husband rushed me to the emergency room, where my pain was dismissed as a "bad period" and completely normal. By this point, I suspected I had endometriosis. Little did I know that it takes most people 7-10 years to get diagnosed and that many seek emergency care for their pain but are sent home without help or answers.

 

My gynecologist agreed with my suspicions. An exploratory laparoscopy by a specially trained surgical gynecologist is the only way to know if you have endometriosis. I was refused surgery for months, told it was not necessary and wouldn't help. But as one medication after another failed to manage my symptoms, I decided I would fight for surgery. I found a gynecologist with experience with endometriosis and met with her for a second opinion. Seeing how seriously my life was impacted by this disease, she booked me for a diagnostic laparoscopy immediately. 

 

The surgeries

On December 16, 2021, I was wheeled out of the recovery room from my exploratory laparoscopy and into a room where my husband Matthew was waiting. He took my hand and told me the words I was waiting to hear: they found endometriosis. I burst into tears. After years of suffering, we finally had an answer. The doctor had used ablation, or burning of tissue, on some of the lesions in my pelvis. But she couldn't treat them all. That surgery cost around $3,000 and only resulted in severe pain for me, although it finally provided us with the official diagnosis of endometriosis. 

 

Ablation does not cure or adequately treat endometriosis. As a result, it's not even recommended by experts. So I decided to seek a second opinion from an excision specialist, a gynecologic surgeon specializing in treating endometriosis. I contacted Northwest Endometriosis and Pelvic Surgery in Portland, OR and was able to see a highly accomplished surgeon named Dr. Shanti Mohling. She is a leader in the field of endometriosis surgeries.

 

Based on our exam and imaging, Dr. Mohling strongly felt I would benefit from excision surgery. She also offered me the surgery I hoped for: a hysterectomy for total relief from the heavy and severe periods I experienced. My husband and I were thrilled we had finally found an expert who could help us and take my disease seriously. On February 28, 2022, I had my surgery. Dr. Mohling and her surgical team found that my cervix was chronically inflamed, discovered another chronic illness that affects my bladder, and removed all endometriosis while ensuring there wasn't any disease affecting other organs.

 

I am eleven weeks post-op writing this, and the surgery has transformed my life. I am no longer in unbearable pain or suffer from debilitating menstrual cycles. Every week that goes by is helping me heal and recover from years of severe inflammation. Now that I am aware of my interstitial cystitis, I am changing my diet to help me better manage my chronic illnesses and bladder pain. I am still disabled and will struggle with these illnesses for the foreseeable future, but my quality of life has been completely transformed.

 

 

 

The costs of the surgery

Unfortunately, the healthcare industry doesn't view my surgery as lifesaving or necessary. It was all "elective" despite how much I was suffering and how much surgery helped. I am privileged to have access to good health insurance at the moment; in total, I have wracked up nearly $90,000 in medical bills over the last year. We owe only a fraction of that, but it's still a lot for us. I was also unable to work for five weeks following my surgery, and I am still struggling to make it through a 40-hour workweek. The laboratory I work in has been accommodating, but my future in the industry is now uncertain with the impact my health has on my career. 

 

I am turning to GoFundMe and our community for assistance in paying my surgery-related medical bills because we are struggling. We are paying off our medical debt in installments, which raises our monthly costs for the future.

 

I started this GoFundMe in the hopes of surprising my husband with relief from my medical bills. He has been the most incredibly supportive spouse I could have asked for, driving me to appointments and taking care of me during my recovery from surgeries. He has made incredible sacrifices and been patient and understanding. He advocates for me at appointments and encourages me on bad days. Financial assistance with our medical bills would be the best gift I could ever give him in exchange for his unconditional love and support during the most difficult year of our lives.

 

 

Thank you for reading my story and for considering donating to my medical expenses related to endometriosis. This fundraiser would be lifechanging for us, and I appreciate every single supporter.