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.
At that point about month or so before my surgery I found the Surmeno Connection and they helped me so much both right before my surgery but even more so now that I am post operative. It’s so great to be able to post to a group of thousands of ladies who are also in surgical menopause; the tips and advice have been priceless!
On June 1st I checked back into the hospital and was taken straight up to Pre-op to have my med-port accessed for labs then I the wait to go back to OR. After what must have been several hours I remember my Dad telling me he had to leave because he had to go to work at 11pm. At some point that night I remember complaining of pain and a pressure headache, the nurse came and helped me to remove the abdominal binder (which was raising my intracranial pressure) and gave me a Norco for the surgical pain. That Norco led to a rebound headache on top of the pressure headache I already had, well she got on the phone with Dr. and told him what I had suggested. He agreed to my med change suggestions, and my pain was slowly decreased and controlled. The next morning when he came into the hospital he asked me if I wanted to be transferred to my Neurosurgeon and I told him no, things with my head are improving and they wouldn’t do anything different for me. I invited him to reach out to them, saying I would go along with what he felt was best. 48 hours after checking into the hospital I was finally going to my grandparent’s farm to recover.
In the first two weeks following my Hysterectomy I started to have low estrogen symptoms, unlike chemical menopause surgical didn’t treat me as kingly. After two weeks I started taking oral HRT which was the only thing at the time offered to me.
At this point I’m still trying to find my balance with the HRT. Besides that, my neurological health is great! I’ve had a reduction of fluid in my abdomen and my shunt is in a better placement since Dr. M removed all the scar tissue and put a barrier on my insides to prevent scar tissue growth.
My best and really only advice for looking at entering into surgical menopause for any reason is if you can keep one ovary try to keep it. Our ovaries are so, so important! Don’t let the doctors fool you and make you think that surgical menopause and natural menopause are the same thing, NEWSFLASH they aren’t!
KATE is a proud contributor to The Surmeno Connection as well as our Team Lead for the Peer Support Group. In addition to her volunteered time for The Surmeno Connection, Kate uses her degrees in Hospice and Pastoral Ministry to assist families and individuals in coping with the grief of losing a loved one. Kate entered Surmeno in 2017 at the age of 27, looking to put an end to years of pelvic pain, and came out as an advocate for greater education regarding women's health. Kate and her family live in Michigan.