Endometriosis is a disorder in which tissue that normally lines the uterus grows outside the uterus causing chronic, debilitating pain and menstrual irregularities. Endometriosis affects 1 in 10 women during their reproductive years. That is about 176 million women worldwide. Because endometriosis is a full body disease, it has the potential to spread to other places in the body outside of the reproductive organs such as the chest cavity, lungs, liver, kidneys, bladder and bowels. Many people don't know that there are three different types of endo and there are four different stages (I-minimal, II-mild, III-moderate, and IV-severe). There is also a possibility of developing adenomyosis (the sister disease to endo) which is when endometrial cells exist or grow into the uterine wall. Both diseases are still being researched and examined to find a definite cause and possible cure. While there are various treatments and ways to alleviate pain and symptoms, there is no cure.
A Typical Day
The "morning after fog" is just the first of many obstacles after a night of pain. I typically get about two hours of sleep before I start to get uncomfortable and the pain sets in. I have spent countless nights walking the floor, waiting on pain meds to kick in, breathing deeply, crying, praying, throwing up, etc. But of course I have a long list of things to do after the sun rises. So I have to mentally prepare myself before I get out of bed. This is a huge deal for me as nights/mornings like this leave me so exhausted, frustrated and physically ill, it is hard to function, let alone homeschool my son, answer emails, see clients, teach Zumba and everything else in between. But it gets done because I have to do it. I try to make time twice a day to just sit and rest for an hour so my body and mind don't get overwhelmed. I have been very blessed to have my husband home with me since he retired from teaching a couple of months ago and I can't begin to tell you how much of a difference this has made in my daily routine. He is a true help mate in every sense of the term and I have noticed a great difference in my mental and emotional health in recent weeks.
My Physical & Mental Struggle
After three long years of pain and suffering, sleepless nights, food restrictions, seeing several doctors, being misdiagnosed more than once and everything in between, I have experienced the heavy burden of what endo has done to my physical and mental health, especially this past year. The physical symptoms became worse last year as I was very stressed about a number of things and wouldn't you know, endo feeds off of stress. While trying to eat health (I eliminated dairy, sugar and alcohol) and exercise regularly, I was experiencing new symptoms and I didn't know why. Chest pains, difficulty breathing, headaches and leg & joint pain on top of the symptoms I was already experiencing (frequent & painful urination, acid reflux, chronic abdominal and pelvic pain (endo flares), extreme fatigue, memory loss, endo belly (severe bloating) and pain with/after sex. But I was also mentally and emotionally exhausted.
This time last year I made the decision to revamp my business and take on more clients. Being an entrepreneur is a challenge in itself, but when you add chronic illness to that lifestyle, there is a lot of uncertainty and insecurity. As you can imagine, I struggled daily just to finish one of my goals. Daily goals turned into weekly goals. It was then that I had to learn to give myself grace and I began looking for holistic alternatives so I could start to heal (I had not yet been diagnosed, but I knew I had endo). I also experienced a lot of brain fog last year (and I continue to) which is a bit terrifying for me. Brain fog is the inability to have a sharp memory or to lack a sharp focus and it is a common symptom of endometriosis. You experience problems with focus, memory, logic, and problem solving. I have actually experienced real time blanks where I am somewhere or driving and I forget what I was doing or where I was going. And one of those times I was in the grocery store with my son. I got light headed and dizzy and all of a sudden my son was tugging on my shirt asking me if I was okay. That was most definitely a scary af moment for me. Both the physical and mental effects of this disease follow me around like a shadow, but I am managing them much better than I used to.
My Go-To Aides
Nutrition and wellness have been my main focus since being (un)officially diagnosed last June (unofficial because I have not had a surgery to confirm). Before that, I kept a food journal to try and pinpoint what I should and shouldn't eat to keep the inflammation at bay. One day after much frustration, I threw it away (I regret that). But I have started a new journal where I track my nutrition, symptoms, flares and reproductive activity. There are several items and remedies that I current use to ease pain, keep symptoms at bay and boost my mood:
- Hot tea
- Golden Milk
- Lemon water
- Aloe water
- Vitamins & supplements
- Zumba & Yoga
- Hot detox baths
- Abdominal massage
- Vaginal steaming
- Intermittent fasting (no dairy, sugar or alcohol)
- Plant based protein
- Trail mix
- Heating pad & hot water bottle
I am also looking into these remedies as well:
- Castor oil packs
- Ice baths
- Chiropractic care
I am thankful to have found some amazing resources. Endo Black, The Endometriosis Summit and Khush Sra have all been great palces for education and support. If you follow me on Instagram you know that I generally share a lot of endometriosis related information and education in my stories. The more I learn, the more I share.
Things I Miss
There are many things that I have had to let go of or put on hold due to my illness. I miss simple things like painting my nails for sure (I'm currently looking for an eco-friendly brand). Planning a girls night out or date night is hard these days too. I never know how I am going to feel. Being able to be spontaneous isn't even a thought. And sleep. There are no words to describe how I miss sleep both physically and mentally. I clearly need it to thrive, but pain is always worse at night and insomnia is also a symptom of endo. I also miss cheese. Like for real. I do occasionally eat a steak when my body craves it, but it's most chicken, fish and plant based protein for me. I miss running regularly too. I used to run up to 20 miles a week. That was back when I was teaching six Zumba classes a week and I felt like I had something to prove. But this illness has truly caused me to slow down and really listen to my body. And maybe that's just what I needed.
In the midst of the pain and suffering, I know that there is a purpose. I have learned to truly appreciate the good days. I am currently working on collaborations with other endo warriors as well as some businesses and organizations to continue to spread awareness, increase research & studies and hopefully get some disability legislation passed for those of us with endometriosis and other chronic diseases and illnesses. We deserve more care and support and we will fight for it just like we fight to have normal lives while living with endo. If you would like to collaborate, please feel free to contact me.