My journey, unlike many, has a very definitive starting point. The day after my high school graduation while attending the parties of some friends, I started to feel unwell. I wasn’t sure exactly why, other than I knew my period was coming soon but it had never been something too awful so I figured I must be getting a bug of sorts as well. I decided to leave the last party early and while driving a friend home the pain got so bad I passed out while driving. That is the exact moment that my endo journey started, although I didn’t have a name for it at that time.
I attended College the fall after high school and everything was relatively normal, other than sometimes painful periods, but I was told that was normal. My second year of college, my boyfriend at the time got concerned at the pain I was suffering from and asked me to go see his Aunt, who was a well-known OB/GYN in Des Moines. She was the first person to mention Endometriosis to me and, based on my symptoms, recommended that I push my regular OB for a laparoscopy.
Summer was nearing, so I headed home to Minnesota and scheduled an appointment with my regular doctor. I went to my appointment armed with knowledge of endometriosis and the courage to speak up for myself. I was lucky, my doctor agreed with me that it was possible endometriosis was the cause of several of my issues and was willing to schedule a diagnostic laparoscopy.
That same summer, in August of 2004, I had my first surgery. I was 20 years old and nervous. Nervous about having surgery, nervous that the doctor wouldn’t find anything, nervous that the doctor WOULD find something. Nervous about the future. I came to in recovery and the first question I asked was, “do I have endometriosis?” The answer was an undeniable yes. My entire future changed with that yes.
I went back to college for my remaining two years a few weeks after my first surgery and continued on with life. For a time, I seemed to be “cured”. My periods, although irregular, were relatively normal. I was concerned about my ability to have children but, other than that, I didn’t see problem. How quickly that all changed in 2006. I graduated college and moved back to MN where I started seeing a new doctor in the west suburbs where I now lived. She was recommended to me on an endometriosis support group page as an “expert” on endo. This new doctor, Dr. S, said that with the pain I was having the best course of treatment would be Lupron injections, given once a month, for 6 months. I know that lots of women have had great success with this treatment but for me, it was hell! Not only did the Lupron do nothing for my pain, but I managed to get every single side effect possible from this medication. I still got my period, my mood swings were horrendous, I got hot flashes, night sweats, and a whole host of other things. But still, I naively trusted this “expert”. In September 2007, two months before my wedding, Dr. S. performed my second laparoscopy. While I was in recovery, Dr. S. met with my fiancé, now husband, and told him that she didn’t find any endo and that the pain and problems I was having were all in my head and I should see a psychiatrist. My husband is a smart man, and having been with me for some time, knew this was insane. He had seen the progression of my pain and the way it could physically knock me off my feet.
At this point, I was defeated. I started to believe Dr. S. that I was “making up” that pain. But I decided that I wanted a second opinion before I gave up all hope. I got married in November and in January, I found Dr. Haislet at Diamond Women’s Center. It was there that I found help. Dr. Haislet looked over all of my surgery notes from the previous two laps and was convinced that my endo was still there and probably advancing. He quickly scheduled a third laparoscopy for April 2008 so he could take a look himself. When I came out of surgery, Dr. Haislet was there waiting to tell me that it was NOT in my head, I had stage 4 endometriosis. After surgery with Dr. Haislet, he recommended that I try Lupron again. He told me that often it has greater results when used immediately after surgery. This was not to be the case with me and after three months, I stopped. I was able to maintain my pain for a year with continuous birth control. In summer of 2009, at the age of 25, during a conversation with the doctor about fertility, he told me that he estimated my chance of ever getting pregnant around 60%. And that was with the use of fertility treatments. Deciding that kids as definitely something my husband and I wanted, I started Clomid in December. While Clomid did not do anything for me, injectables and Intrauterine Insemination (IUI) allowed me to get pregnant with my oldest, a son. I delivered C in October 2010 at the age of 26. I experienced all of my “regular” endo pain and problems through the first 5 months of pregnancy and had it all return 1 month post-partum.
When my son, C, turned one in 2011, I scheduled a fourth laparoscopy with Dr. Haislet for November 2011. The goal being to basically clean out my body of all endo to be able to get pregnant again. Unfortunately, it wasn’t that easy. After 7(!) rounds of IUI, I was lucky enough to get pregnant again. This time with TRIPLETS! Tragically, one of our babies passed in utero at 32 weeks. However, the remaining two were delivered via planned c-section at 38 weeks. One month after B and K were born, however, my pain returned. This time worse than ever. Feeling like I had tried everything medically that I could, I turned to more holistic options. In June 2013 I committed to three months of the “endo diet”. Basically I would try three months of no dairy, no wheat, limit red meat, limit sugar and alcohol. Well wouldn’t you know it worked! Not only did I feel worlds better, but I also got pregnant again – with no fertility treatments! In September 2014 I gave birth to a sweet baby girl.
By this time, my amazing Dr. Haislet had retired and I was back to square one trying to find a reputable expert doctor to help me, hopefully before my pain was too unbearable again. My pain came back worse after each pregnancy and I was sure that with four children under the age of 4, I wasn’t going to be able to manage life if I didn’t find a new solution. In came Dr. Heegaard. After discussing my history, reading my files, and talking about my future, we together decided that a hysterectomy was my best answer. I was done having kids and there was some concern about how many surgeries I could have safely. So, in February 2016, I had a complete hysterectomy where my uterus along with my ovaries, tubes and cervix were removed. Surgery showed that my uterus was ready to rupture, my bladder was spasming and endo was once again covering my bowel, bladder, pelvic floor, peritoneum, uterus, ovaries and abdominal wall. Surgery was rough on me, recovery was long and the ending was not a “cure” for me.
So that brings us to now, almost three years post hysterectomy. While I still have good days, bad days, horrible days, I am lucky to wake up each day (usually super early!) to four kids and an amazing husband. Through the help of two true endo experts, I have found treatments that work for me specifically, often through trial and error. I am still a work in progress with an ever changing list of things that work and don’t work. At the end of the day though, I am just a girl in my mid-thirties learning to trust my body and recognize what it needs.
Countdown to the 2019 Minnesota Endo March