Jessica’s Total Laparoscopic Hysterectomy with Bilateral Salpingo Oophorectomy

Type of Hysterectomy: total laparoscopic hysterectomy with a bilateral spalingo oophorectomy

Age at surgery: 31

Location: Wheeling, WV

My hysterectomy was completed because I was diagnosed with a very aggressive form of uterine cancer. I had always suffered from irregular periods, but never experienced painful periods. When I was 15 my doctor tried to regulate with birth control, but this treatment lasted only a year because it elevated my blood pressure. When I was 27 a different doctor tried progesterone only birth control, and it worked to regulate my periods for awhile. But in 2014 my husband was going through cancer treatments of his own for colon cancer and I neglected myself because I was so focused on him. I began to bleed heavily in July of that year, and two trips to the ER only left me with a consult to another gynecologist. Thankfully, she knew there was a problem when I explained to her how I was bleeding heavily through ultra size tampons and was determined to solve the problem. Her first solution was an IUD because my PCOS and weight was not going to help with a birth control pill. Before we could have this procedure though, she ordered a trans-vaginal ultrasound and found that my uterine lining was 4 centimeters (40 millimeters) thick. She quickly scheduled a D&C because she knew based on this finding that an IUD wouldn’t stop the bleeding.

On the day of that procedure, she took my husband aside and explained to him that I would not be having an IUD inserted. She performed a biopsy and sent my labs off to be tested, but would not go into much detail. It was a whirlwind from there. She called me five days later to explain that the hospital lab came up with an initial diagnosis so obscure that she did not believe it. She said that because of the rarity of it that the lab sent the biopsy to the Mayo Clinic for further tests, but she was sending me to a gyn-onc with or without those results. Within an hour she had me in for an appointment three days later. It wasn’t until the medical assistant was taking my vitals did I hear the words cancer. From the medical assistant. She diagnosed me. My mom and sister were with me and the three of us asked her to repeat what she said to me. Realizing her mistake, she mumbled about how she liked to practice saying big medical words and it was nothing. But the damage was done. When the doctor came in, he said that the initial results from my hospital was endometrial stromal sarcoma. It was so rare that he did not believe that was the type of cancer I had and he was still waiting to hear from the Mayo Clinic. He had me scheduled a week later for a hysterectomy, but initially he was going to keep my ovaries. I said what is the point in keeping them when they do not work right either (PCOS and all)? He agreed and that is why he removed everything. I still see the medical assistant when I go for my check-ups every three months. I did not hesitate with the diagnosis and waiting to get a second opinion. I did not want to let the tumor grow more and I did not want to suffer through even more heavy bleeding.

My surgery, as I said before, was literally a week after my official diagnosis. From my first meeting with the doctor to my scheduled surgery I did receive a call from my new doctor (I call him McDreamy because he is so cute, I kid you not.) He said that my cancer is Mullerian Adenosarcoma with sarcomatous overgrowth and rhabdomyoblastic differentiation. Basically, the cancer was even MORE rare than the initial diagnosis. It did not change that I would be having a hysterectomy though. My surgery day was cold and snowy and I was more nervous about my family getting home after rather than going through the surgery myself. I remember being wheeled into the surgical room, and then waking up in recovery to a nurse telling me firmly to stay awake. I spent one night in the hospital, and was released and home in time for my mom to cook me dinner. I hadn’t eaten in almost three days.

Overall, recovery was easy. Because it was laparoscopic I only missed two weeks of work and was clear to resume normal activity after six weeks. Of course I was worried about life after the hysterectomy, but not in the same way as most women who go through the surgery. I was preparing to take on chemotherapy and radiation treatments. I met with a rad-onc who was in communication with my doctor about my case. My type of cancer was something the rad-onc had only seen one other time and my doctor had never seen it, so they were consulting with several other doctors from around the country to determine the course of action for me. After a few weeks, they decided because they caught it early (staged 1A), they would monitor closely. There are no blood tests for my form of cancer, so I go see my doctor every three months for pelvic exams and every six months for CT scans.

I am very glad I had the hysterectomy and did not waste time getting other opinions. At first I experienced some hot flashes, but those have gone away. I was also experiencing some major mood swings that I now have medication to control. Losing weight is an even bigger challenge than it was before, but I am working on being healthy just in case something shows back up and I need to take treatments.

I would say that all women should be advocates for their own health and well-being. If you sense a problem, then do not stop until you feel that it has been solved. If it means having a hysterectomy to save your life, then do it.