My twenties were no joke. I basically got married three times, got cancer, lived in poverty, ended up without a home, and struggled needlessly with severe depression, anxiety, and undiagnosed adult ADHD. Somewhere in that whole mess, I was diagnosed with endometriosis. I think I was 23 or so. Can you blame me if I can’t remember the details? What I do remember is that I didn’t have a family doctor where I lived, so how I even got the endo diagnosis is beyond me. Looking back, I think it was my brain’s trauma response that cleared out so much information in my memory bank. So that’s what I concentrated on. I focused so hard on improving and maintaining my mental health, that my physical health was left by the wayside.
I do remember someone (although I have no idea who) telling me that endometriosis was found on my scans. I know now how severe endometriosis has to be to show up on a scan. I didn’t then. I remember the doctor smiling, telling me that pregnancy would cure it, and I should consider getting pregnant young. He mentioned a possibility of infertility, but brushed it off like it wouldn’t matter either way. He also said if the pain got to be too much, a prescription could be written, but otherwise I would have a normal life.
And so I carried on, slightly worried about my fertility, but otherwise unconcerned. I had more or less forgotten about my long ago diagnosis. I had regular pain to be sure, but I had been gaslighted by previous partners and so-called friends so much by this point, that I got into the habit of reminding myself I was “just a hypochondriac,” or it “wasn’t that bad,” because I “always exaggerate,” and other lies I had learned to believe.
After marriage two ended, I returned, emotionally-battered, to my hometown. After some time to heal and find myself, I met Bennie. I didn’t even want to date, but he was too remarkable to not give him a chance. I fell in love once again, despite trying to hold back, and miraculously found myself pregnant in January of 2017. We wed two weeks before the birth of our son that year.
I know giving birth isn’t supposed to be easy, but it was more of a challenge than I bargained for. After over a day of trying different methods to get my cervix to dilate (some of which still traumatize me), I dilated to six centimeters, but wouldn’t progress further. For six agonizing hours, my baby tried to descend into the birth canal, but my cervix wouldn’t budge. Finally, my son was born by cesarean. I was disappointed I didn’t even get the chance to push, but I know it wasn’t my fault. I honestly believe endometriosis prevented me from dilating.
After the c-section, my pain was worse than before, and it wasn’t just during my periods anymore. It was affecting me more and more days out of the month as time went on. Now that I had a family doctor, I told him about my endometriosis diagnosis. Unfortunately I was not taken at my word, and there was no record of my diagnosis in my file. I was completely dumbfounded.
Because of some of my symptoms, along with a family history of colon cancer, I was sent for a colonoscopy, which came back clear. Completely forgetting our previous conversation, my doctor asked me if it was possible for me to have endometriosis. After reminding him of my diagnosis, I was finally sent to a gynecologist.
I couldn’t get in to see an endo specialist, but the gynecologist not only believed my diagnosis but told me I wasn’t crazy and the pain was real. This was groundbreaking for me in my own personal growth. She did a diagnostic laparoscopy, found the endo we knew was there, and referred me to the best surgeon for this in Manitoba, Dr. Devon Evans, ten years after my initial diagnosis.
When the specialist examined me, I was devastated to find that the damage was extensive. My cervix had a large nodule on it, and my upper vagina was badly pitted. That was just what could be seen with the naked eye. A couple months later, I found myself sitting down with a psychiatrist to reassess my mental health and medication needs. I sobbed about being robbed of a part of who I am. I sobbed about needing a hysterectomy before I was ready. I sobbed about the fear of not knowing what else this uncontrolled beast would take from me.
And now, I am three weeks and two days post-op from my surgery with Dr. Evans. Unfortunately, my cervix and upper vagina couldn’t be saved. He removed them along with my fallopian tubes and uterus. I am grateful to have kept my two healthy ovaries, but must look into the future possibility of expanding our family a little differently than before.
I am elated to say that the moment I opened my eyes after surgery, I could feel the absence of disease from my body, even with the fresh surgical pain. When I got home, I found my energy levels so high, I really had to refrain from jumping off the couch and going for a run. Even Bennie has noticed how differently I feel just by the mood I’m in. For the first time in my life, I can say, “How could I possibly be in a bad mood right now?”, and really mean it.
Going through this process of being so sick every day of my life and not being believed has taught me so much about my strength and resiliency. Losing part of my vagina has taught me so much about how I identify in regards to my gender, and why. Overcoming something that has followed and controlled me and reflected my mental pain all these years has taught me that I am not easily taken down, and I’m not weak like I allowed myself to believe. Oddly, I feel so grateful for this experience. For the first time in life, I feel fierce.
My message to you is, if you struggle with mental health; if you feel like you have bigger problems than your physical health; if your doctors don’t believe you; if you can’t get the care you need, don’t ever give up. My hysterectomy was needed because I didn’t get treatment sooner. Ten years passed between diagnosis and my first laparoscopy. Your physical health and mental health go hand in hand. And most importantly, don’t fear the beast, be the beast.
Leslie is a 33 year old wife and stay-at-home mom in central Canada. In her spare time, she documents her ups and downs with endometriosis, depression, and anxiety, in hopes to encourage others and offer solidarity. It can be found at @theharderdaysinsta.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.