What are your endometriosis symptoms like? I will start with the fact that I do not have painful period cramps. They are not a pre-requisite for endo. What I do experience is extreme food sensitivities, IBS symptoms, severe bloating, debilitating chest through back/shoulder pain, full abdominal pain, flu-like feelings, fatigue, superficial and deep pain with penetrative sex, pelvic floor muscle spasms that take my breath. These symptoms can happen any time and often multiple symptoms at once. I was actually thankful to have gotten debilitating abdominal pain for only 40 minutes during my lunch break at work, so I didn’t have to ask to leave, but my goodness was I exhausted and not at my best.
What was your journey to diagnosis like? I had been telling my Family Doctors for years that I was sure some of my symptoms were caused by a hormonal imbalance because I could tie my early intensified symptoms to my period, but bloodwork always came back normal. I had seen Gastroenterologists (multiple) who told me I was a healthy young women who had difficulty digesting things and there was nothing they could do. I saw a dietitian who put me on an extremely restrictive elimination diet that resulted in not feeling any better and not being able to reintroduce enough foods for a healthy diet (that was a decade ago and I still suffer from it). It took about 15-18 years, extreme weight loss from food making me sick, for a Family Doctor to refer me to a Gynecologist to specifically rule out endometriosis (which my mother was diagnosed with 20 years prior but didn’t ever talk about). The first suggested that “once I got a job and life went back to normal, my symptoms would disappear” (suggesting it was my anxiety disorder and too much time on my hands causing my issues). The 2nd right away, based on symptoms and family history, diagnosed me with suspected endo, which is where I remain after a year of being on an excision specialist’s wait list.
What was your experience with treatment for endometriosis been? Once diagnosed with suspected endo based on symptoms, and after having already having a hormonal IUD for years, I was referred to a surgeon for excision surgery. Knowing the wait would be somewhere around a year to meet the surgeon, I was put on hormone suppressing medications to try to manage the pain. They all caused further harm by intensifying my symptoms, adding on new ones and causing intense and unmanageable mood swings. I was then put on an SSRI by my new Gastroenterologist who knows about endo cross-treatment, to help with downregulating my central nervous system for digestion, which can help lessen pain overall, but my digestive system couldn’t tolerate it. Without healthcare benefits, I was able to see a pelvic floor physiotherapist a couple of times. I believe that if I had no financial barriers, regular access to physiotherapy would help dramatically with the tension in my pelvic floor and the pain conditions that it causes. I tried combinations of CBD oil with the guidance of a doctor, but there were no positive effects and many negative ones as I couldn’t seem to tolerate it. I continued receiving somewhat regular mental health care, which is often about coming back to managing basic self-care. I’m basically in survival mode until excision surgery, which may not even improve my symptoms. It has been a hard road.
How does endometriosis affect your day-to-day life? At this point in my disease, it affects all aspects of my life. I am not free to be spontaneous, because my diet is so restricted and I need meal plans. Even with planned “safe” meals, I still get digestive pain often times. I’m exhausted most of the time, mentally and physically, so making anything beyond the basics happen is difficult. My health is unreliable, so I’ve had to miss days at work or social events. Sometimes it hurts to take deep breaths and so singing in my choir is affected at times, and going on tour or retreats with them is hard because of food restrictions and pain. Due to pain with sex and not being able to predict how much excision surgery will help overall, makes dating and physical intimacy difficult. Physically, my body has never been so tense, weak and inflamed. Anxiety is a hard thing to manage with endo symptoms and a heightened central nervous system, so finding a workplace who can support me in these challenges along with the physical ones is yet to be found. It can also get quite depressing that there is a lot of misinformation about endo in medical communities and not knowing who can be trusted with your body is stressful. There is so much gaslighting.
How does endometriosis affect your emotional well-being? It can be hard to sleep at night with hip and back pain, but also I feel pulling in my abdomen when moving to lay on my sides. Sleep is important. I’m getting more uncomfortable laying in bed over time. I have always lived with anxiety, so as my immune and nervous systems are upregulated due to endo, it only makes managing my anxiety more difficult. Not to mention having to advocate for myself and proper care for my endo as someone with a known anxiety disorder. So often was my anxiety solely blamed for my pain. It’s also hard to hear that, other than possibly excision surgery, I will get the most benefit from downregulating my central nervous system. I’ve done and continue to do everything in my power to manage anxiety, so it’s depressing to think I might not feel helpful physical effects from these efforts. As I’m still dating in my late 30’s, and my symptoms are only getting worse, it’s very challenging to find a partner who is up for dating someone with an incurable disease. Not to mention, everyone loves exploring new food and restaurants and I can’t do that due to severe food sensitivities.