My Long Journey To Hysterectomy

My Long Journey To Hysterectomy

I’d been having pelvic pain for about 3 years and irregular cycles since the age of 14 or 15. My menstrual cycle being irregular was looked over because I was under a lot of stress at the time. You see, my mom had been diagnosed with a very aggressive form of brain cancer, which meant I had to step up at home and take on more responsibility than I ever had before. That, on top of being very active in my school’ s FFA (Future Farmers of America) Chapter. Then you add to that the stress from my prior Neurological health problems, I had a few surgeries and hospitalizations while still in High School.

My Junior year my mom sadly passed away after fighting hard for about 18 months. I took on more responsibility at home. My Dad got married the very next year and I continued to ignore my irregular menstrual cycles, after all I was under a lot of stress in my life at the time.

Fast forward to 2011, the medical issues I’d experienced related to my brain seemed to be somewhat stable after my first couple years of college. It was at that time that I made an appointment with a new Family Practice Nurse Practitioner to get my regular check up. The Nurse Practitioner began by looking into the cause of my irregular menstrual cycle, 1st pap smear came back abnormal, 2nd pap was normal but so much more painful then the first during the procedure. Blood tests drawn at my visit got me referred to an Endocrinologist office where I was officially diagnosed with PCOS (Poly Cystic Ovary Syndrome).

I can’t remember if the NP or Endocrinologist put me on birth control but my first cycle on that medication was very rough. I had the worst cramps I’ve ever experienced, I could barely walk. To make matters worse I was on a vacation at the time with friends. Fortunately one of them was a nurse, but still, I ended up in the ER after going through 9 maxi pads in the span of only 8 hours. Everything at the ER was normal, so when I got back home from my trip, first chance I had; I went to see my NP.

Fast forward again to June 2016, in that time I’d had a couple brain surgeries, my gall bladder removed, and a med port placed since my veins are difficult. At this point I felt like my head was again stable, the years in between 2011-2015 I had a bit more brain stuff going on and that took priority. Plus, I was finishing my degrees in Pastoral Ministry and Hospice. In June of ’16 I asked my new PCP for a referral to someone for the pelvic pain, she referred me to a local doctor. I was hesitant for the first visit, his office staff didn’t really inspire confidence and when I met him I wasn’t impressed, he wanted to cut me open the first time he met me and he didn’t even examine me. As a result, I didn’t make a follow appointment with him.

Instead I started asking my friends for referrals and wound up making an appointment with Dr. M. His office staff inspired confidence, he was very gentle and when he is in the room with you, you have his whole attention. He listened to everything I said before asking a single question or making recommendations. He made me feel like a teammate in my care and not just a body under a microscope. He actually referred to my chart in front of me and commented on how much I’d been through and how because of my surgical history he was more prone to believe my complaint of pelvic pain even though I didn’t visibly display that I was in terrible pain.

During that appointment a decision was made to switch my Birth Control and revisit in 3 months, but if I couldn’t take it anymore to call his office to get scheduled for a diagnostic laparoscopy.

That was the beginning of July, by mid-August I’d had enough. September 15, 2016, I checked into the Ambulatory Surgery floor of the hospital and under went that surgery. A week later I went back to see Dr. good news no Endometriosis, bad news severely enlarged Poly Cystic ovaries and a uterine prolapse, stage 1. That prolapse had Dr. M scratching his head given that I was a 27-year-old virgin. He explained to me that a prolapse of the uterus is typically seen in women who have had kids. He also found a lot of free fluid in my abdomen and extensive scar tissue. After talking it made sense to him that the large amount of fluid and scar tissue had to do with my shunt.

After all that was hashed out my doctor and me began going over my medical options. I again reaffirmed that I did not want children, and that my first Neurosurgeon had recommended against it. At that point Dr. M suggested 6 months of chemical menopause via Lupron and then if that went well and I was sure I didn’t want to keep my uterus or ovaries we’d schedule a full hysterectomy.

The next 6 months were GREAT! I felt amazing I had energy and no pain, plus I lost a bit of weight. During that time, I started to educate myself as much as I could about everything, I joined Facebook groups, I started working on getting my body in better shape. I even asked my current Neurosurgical team if in their opinion it was safe for me to have children given my medical history. Despite the fact that many women with hydrocephalus can go on to safely carry and deliver their babies, my surgeons were concerned about how sensitive I am to pressure change and that those changes if not treated promptly enough could lead to death. With all my facts and everything I had learned, I still didn’t feel entirely prepared for hysterectomy, but I felt like it was the right move for me to make.