By Leah Shirton
Throughout my 20s and early 30s, I lived life loudly.
I traveled, worked in bars and restaurants, owned my own business, moved to an island (and back) and basically did whatever I wanted to do, whenever I wanted to do it. Very little of my precious time was dedicated to healthily managing my health and endometriosis symptoms. I knew it was a huge part of me and would continue to be a contributing factor to bad periods, stomach aches, mood swings, and general sluggishness, but with the occasional dose of birth control, Advil and denial, I could be young and carefree and keep it at bay.
I had too much going on in my life to let endo control any part of it. Fast forward to 2015. I’m 34 years old and battling a UTI that just wouldn’t seem to go away. On top of that, my periods seemed to be getting longer, heavier, and more unpredictable. It felt like there was a constant dull fire in my pelvis and no amount of ignoring or self-medicating was making me feel better. Throughout the next year and countless doctors appointments, tests, and procedures, I was diagnosed with interstitial cystitis, which can be most easily described as a disease that mimics chronic UTI symptoms with periods of remissions and flares. It is also fondly referred to as endo’s “Evil Twin.”
I kept going this way for years until May when a ruptured cyst and a slew of horribly painful menstrual cycles truly woke me up to the issues that were becoming increasingly prevalent with my insides.
I now had two chronic illness diagnoses, and my health was no longer something I could will away or ignore. While in the midst of all my moving around, chasing fun and avoiding proper healthcare in my young adult years, the only gynecologists I ever saw were ones who would quickly write off my symptoms, shrug at my pain, and offer strange suggestions for pain management ("have you ever considered pregnancy?”). I kept going this way for years until May when a ruptured cyst and a slew of horribly painful menstrual cycles truly woke me up to the issues that were becoming increasingly prevalent with my insides.
It was clear it was time to get this figured out.
In July, after lingering on a long waiting list, I finally got an appointment with one of the top endometriosis specialists in Massachusetts who performs excision surgeries to completely remove the scar tissue, cysts, and adhesions associated with endo. When I first met my specialist, I was impressed with her warmth, kindness, and knowledge about endo. She said she believed that surgery was the best and only option for me at this stage in my illness. I spent the majority of our first appointment in tears, mainly just extremely happy that I had finally met a doctor who looked into my eyes while I described my 21 years of pain and struggle with this disease. She seemed to genuinely care about my wellbeing, and I knew that going this route with her was the best possible thing for me.
I have come to the amazing realization that my soul and my body are incredibly strong and there is nothing they both can’t handle.
Surgery was scheduled for October 18, and it felt like Christmas Day. I couldn’t wait to feel better and give my body the ultimate long-term vacation from endometriosis. As I write this, it's now almost one week after my excision surgery.
My doctor removed scar tissue and adhesions that were covering my pelvic region and causing my ovaries to stick to my uterus and bowel. Over the last week, I’ve experienced pain, discomfort, and post-surgery depression (yup, it’s a real thing; Google it!). I haven’t quite peed normally, I’m a bit lonely, and I don’t have the greatest appetite. All of this aside, I have come to the amazing realization that my soul and my body are incredibly strong and there is nothing they both can’t handle. There is immense gratitude in that. As my doctor explained, it may take another two to four weeks to feel okay and like I’m back to my old self, but I’m prepared and feel confident that it is all worth it in the end.
I know that I finally empowered myself to better my health and this surgery was one giant step in the right direction. Maybe one day I’ll be a mother, or maybe that’s not in the cards for me. Maybe one day the endo will grow back, and I’ll have to repeat this surgery. At least I know that for now, I have given myself a fighting chance, and done the best possible thing I could do to feel like me again.
And I’m so ready.
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*Patient stories submitted to Endofound.org are the views of the patients and not necessarily those of the foundation.