Back before I even knew if I wanted to have children I had started experienced what doctors told me millions of women experienced – “unexplained pelvic pain”. I put that in quotes because almost nothing is “unexplained” to me. I am the type that pretty much needs everything to make sense and this made NO sense to me.
I was in and out of different doctor offices having different procedures done to try and find out why I was having so much pain in my lower pelvic area, but no one seemed to have a diagnosis. One doctor did mention the word endometriosis which I have never heard of before but when I quickly researched it, I thought maybe that could be my issue. I remember having to beg to get into a doctor and then beg again to have a laproscopic surgery because I couldn’t stand not having any answers and just accepting that women live with “unexplained pelvic pain”. I even remember my surgeon telling me right before my first surgery that many women just have to learn to live with this pain. Come to then find out I had endometriosis all over my pelvic walls and ovaries! That still makes me mad to this day, but I quickly learned a lot and fast after the diagnosis. Not only about endometriosis but about how awful insurance companies were to deal with as you’re in pain.
After that first surgery the surgeon had burned off the top of all the endometriosis and told me that the course of action would be to put me immediately into menopause with Lupron shots for 6 months and then go on a low estrogen birth control pill until I was ready to have children. THEN once done having children have a hysterectomy. Hearing this all at 24 years old was insane! I did what I was told at first and went on the Lupron shots and went into menopause and boy let me tell you – all of the women going through menopause should have some kind of medal. It is crazy!
Anyway, I’m in menopause and with the help of my mother (seriously don’t know what I would have done without her help) we found that this was NOT the only course of action and was actually CRAZY. We quickly found that there were a handful of doctors (at the time) who specialized into something called deep excision surgery. What this basically means is that instead of just burning the top of the endometriosis, the surgeon actually excises (or removes) all of the abnormal tissue and then cauterizes the veins to stop bleeding and prevent infection. Sounds pretty crazy, but I’m telling you – it makes sense!
I sent my records to 3 different doctors/surgeons who specialized in deep excision surgery and I spoke directly to each doctor who had clearly reviewed my file and explained how they would handle this type of surgery on me and what to expect in the future. I decided to go with Dr. Masahide Kanayama of New York Endometriosis Center. I cannot begin to first explain the care and compassion Dr. Kanayama and his Office Manager, Sabrina, immediately showed toward me. They made me feel hopeful that I might be able to have this surgery and be pain free without having to be on birth control pills if I didn’t want to and a hysterectomy was definitely not happening. My surgery with Dr. Kanayama was in 2007 and I have not been on birth control pills and have had 2 beautiful babies with healthy pregnancies.
My hope is to help raise awareness and to help shed some light on the different ways I have found has helped me be pain free. I am not perfect and I have not stuck to the kind of diet that I should, but that only makes me human and hopefully allows me to connect with all types of people. You are not alone and you should not live in pain. Stay strong and fight for yourself!