I started my period when I was 10 years old and a few months after starting my period I started getting horrific cramping. Cramping that left me debilitated for 6 hours on the first day of my period. This went on for about 2 years where I would either get leg pain that wouldn't allow me to walk or I would get this horrific stabbing like vaginal and colon pain that left me stuck in the position I was in when it started for about 15 minutes. I remember starting my period the day my sister gave birth and throwing up in the bathroom for 15 minutes while she was trying to get my nephew to sleep after his first feed. The constipation started a year after my first period where I can recall sitting on the toilet, talking to my mom, and seeing the blood drip from my colon because of the amount of stretching my rectum had to do just to get the poop out. My periods were so heavy I'd go through a pad every hour and I would notice large clots in the toilet.
I suffered from migraines that would set in so horrifically that I would end up throwing up on the rides home from the school. Then I started having sex when I was 21 and whenever there was penetration on my cervix it felt like someone was squeezing it and my right ovary. Sometimes it would lead to me having period cramps that I'd either get the chance to curl up or be stuck in that position for about 10 minutes while the sharp stabbing period pains started. I also couldn't run anymore because I would get menstrual cramps that would leave me limping back to my house, to the bathroom, and on the floor curled up in pain. The one thing that I can recall happened before my period is having severe bloating, weight issues, asthma and food intolerances that I ignored up until this past year.
Here is my endometriosis story:
By time I had gotten to 7th grade my mom finally took me to another doctor who said I could either get on birth control or have a baby. Obviously, through the ignorance of the comment, we accepted the birth control and it worked for about 4 years. During this time, they all put me on high blood medication at the age of 14 for 'gene caused high blood pressure.' I still dealt with bloating, occasional stabbing pain in my vagina that would bring me out of my sleep but for the most part it worked. I was able to stay at school and go to my swim meets without any disturbance.
I had finally reached my senior year of high school when I started having horrific back pain that lead to my legs going numb when I walked. I complained to doctors for month who told me, "It's your anxiety" so they put me in physical therapy and on hard core pain killers and anti-inflammatory pills. This continued to do nothing when they finally decided to do a test to check whether or not my legs were actually going numb. They believed that it would come back negative. I don't recall the name of this procedure but they took these small needles and poked me in the legs for 20 minutes to see if there was a disconnect between my nerve communication and to their surprise, there was some type of nerve disturbance which confirms the leg tingling and numbing I had been suffering from. This led to them doing back surgery on my L3, L4, and L5 which was slightly bulging and they opened up the canals in my spine so that the nerves had more room to move. The numbing got better but the tingling and back pain never went away.
A year later I started having issues with my hip and groin, so I went to a different orthopaedic doctor that said I had a bit of extra bone growth that created a small tear in my labrum. He performed the hip surgery and the sharp pain got better but the hip pain never went away either. 2 years after that I started going to pelvic floor physical therapy for a mild case of vaginismus that I had suffered from for almost 3 years before bringing it up with my doctor. After college, I moved to Boulder, CO to see what the rocky lifestyle was like and what I had been missing. While there I had started to experience severe heart palpitations, heavy chest pain, heart pain, severe high blood pressure, a heart rate that would jump from 87-140 in a matter of seconds, and what felt like panic attacks.
I spent the rest of my days in chronic pain, I had just accepted my body didn't work the way it was meant to work and that was it. Then came October 2018, when I decided to move back to Australia. My mom told me 15 minutes before boarding my flight to look into Period Poverty. While I did my research I found out this was an issue almost everywhere in the world, even the most developed countries. But since I was living in Australia I wanted to deal with it where I was residing so I decided to educate myself about the issue and another issue that we don't tend to question often. The issue of why we even have a period and what the hell is a menstrual cycle?
I learned that hormonal birth control only made things 'seem better' because we weren't actually producing our vital hormones anymore thus meaning we don't have an actual period. We have a withdrawal bleed from the synthetic hormones that are in our body. That endometriosis was actually still growing I just wasn't getting the symptoms. I learned that our period wasn't meant to be painful and that PMS wasn't normal. I learned that my bloating wasn't normal. I learned that doctors dismissing women, especially women of colour, was more common than I had thought. I learned that we had a full menstrual cycle that influenced our period which is basically a report card of so many health things that can be going on in our bodies. I learned that I actually should have never been on the combination hormonal birth control because of the blood clotting side effects. I learned that you can control your fertility without the need of hormonal birth control. I learned that my symptoms all of these years had lined up with endometriosis. I stopped taking hormonal birth control and watched my symptoms because I wanted real answers.
With continuous research and the help of endometriosis profiles on Instagram, I finally knew that my symptoms weren't normal and lined up with these diseases. I flew home to meet with 2 different doctors within 4 hours with all of my research on a small card. The first one told me I needed to be on hormonal birth control and that he would do a pelvic ultrasound but it wasn't likely to be endometriosis. I then went to the other doctor who confirmed what I was feeling and told me she'd do the surgery, and told me I should be going to medical school for the amount of research I had put in.
I was OVER THE MOON when someone finally believed me and knew that I was smart enough to make decisions about my body. Moreover, that weekend I ended up going to the emergency room for abdominal pain and they discovered that I was incredibly constipated which didn't make sense because I pooped every day even if it did take a lot of effort to get it out. The doctor told me, "You are so constipated that I have never seen anyones colon or rectum this stretched. I don't know if it'll ever go back to it's normal size." She assumed that this issue was more than just diet but that my brain had a disconnect to my colon and that's why it wasn't working properly but I had a hunch that it was way more than that. I did a poo cleanse for the colonoscopy surgery she wanted me to have and the minute my bowel was clear, all of the best pain, heart palpations, shortness of breath, high blood pressure, elevated hart rate, and heart pain stopped instantly! It was like a could breathe again!
A month later I had my laparoscopic surgery and my doctor diagnosed me with stage 2 endometriosis on my right ovary, pelvis, and all over my rectum and bowel causing my severe constipation. Because she did ablation and excision I had about a month of absolute relief! The back pain and hip pain went away. My periods were light as ever, I could poop 3x a day without any help, I had started tracking my fertility so I could see my hormone levels balancing out, and I felt amazing to know that I advocated for myself to get this diagnosis and answers. But having surgery wasn't the only thing that made a difference I have made changes in all areas of my life.
Here is what I've done:
1. Acupuncture
I believe in traditional Chinese medicine and I have heard several reviews of other endometriosis suffers that have had great relief and pregnancy success with acupuncture. It has helped me a lot such as lighter periods, diminished pain, and I was finally ovulating from my right ovary.
2. Food I Eat
An allergy test and sensitivity test exposed that I had problems with over 26 foods that I ate on the daily. Every single one of these foods I cut out and my bloating got better along with a stuffed nose, scratches that had started breaking out all over my body, and my period pain was now 30 minutes instead of 6 hours long. Additionally, I have to stay away from refined carbs (pancakes, cake, bread, pasta), refined sugars, alcohol, and chocolate so I mainly stick to real whole food, what humans have evolved off of.
3. Vitamins & Minerals
They have found that endometriosis suffers are usually deficient in many vitamins and minerals. I have started taking B complexes, magnesium, vitamin D, vitamin E, and iron. Each of these help with my blood flow, liver function, and cramping!
4. Herbs
My acupuncturist has made up mixtures to help me with my period cramps which work amazingly! But I also started taking vitex to lengthen my luteal phase which helped my PMS, progesterone production, and assisted in my period cramps. Suffers are known to have short luteal phases which means low progesterone levels. Leaving us with high oestrogen levels (liver not functioning properly) and high prostaglandin levels (the higher these levels the more severe cramping we can have). I also take Carusos 2-a day to deal with my chronic constipation.
5. Exercise
I make sure that I exercise at least 3x a week however, I change my exercise depending on where I am in my cycle because we are not static and we are not men. Our hormones change and benefit our overall health and we can use our cycle and exercise changes to our benefit. In my luteal phase, I am able to run but I am not in my follicular phase because my period cramps from running only can be triggered during this time. I also lift in my follicular phase because of the muscle development benefits of oestrogen. In my luteal I do yoga and lots of walking!
6. Low Toxic Lifestyle
Lastly, I try to only have organic products in my life. This is because they have found that exposure to toxins enables the growth of endometriosis and many of us have higher toxin levels than we know. I only use organic cleaning products, I stopped getting hair relaxers and only use organic hair & skin products, and do my best to eat organic or grass-fed meat. Organic vegetables and fruits are quite expensive so I typically buy the nonorganic but soak them in water and vinegar which is meant to be helpful. My partner and I have also invested time and money into our own garden growing some of our own food!
I have made to make a lot of changes to the way I live to manage this disease but I have found it worth it! I still believe that excision surgery needs to be studied longer, that there need to be more accessible well-trained excision surgeons, and acknowledgement from the medical community.
If you have stayed around to read this blog post thank you! It means the world to get to share my story and I hope that any of you out there that want information stick around this week while I talk about some of the treatment options for endometriosis. If you have any questions I will do my best to answer them and any of them that I can't I will provide you with the research to get you on the right path!
Xoxo,
Moonli
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