My Journey with Endometriosis

By Lauren O’Dwyer – Nutritionist & Personal Trainer

Diagnosis

At the age of 23 I was diagnosed with the most severe form of endometriosis through laparoscopic surgery. I was both devastated and relieved. Devastated for obvious reasons but relieved that after over 20 years of chronic, invisible pain and misdiagnosis, I finally had something to label it with and I wasn’t going crazy.

Background of health

Since I was an infant, I have struggled with bowel issues. Most of my childhood I had issues with chronic constipation and stomach pain. I was taken to numerous paediatricians, my diet was changed, I was put on Metamucil, laxatives, prune juice, etc. but nothing seemed to help. Fast forward to high school and the problem was not any better, but now the picture looked more like Irritable Bowel Syndrome (IBS) –alternating constipation and diarrhoea as well as cramping and bloating.

Along with my digestive issues I also suffered from unexplained headaches, anxiety, a chronic sore lower back and constant exhaustion. I had MRI’s, colonoscopy’s, faecal samples, blood tests, saw naturopaths, optometrists, psychologists, brain and stomach specialists but no one could figure out what was wrong with me. On paper, everything was normal. The overall consensus was that maybe ‘I just didn’t like school’ and ‘they will resolve themselves once I left school’.

Once I did leave school I wanted to take control of my health and find some answers in natural medicine. In 2014 I really got into my health and fitness. I was doing an advanced diploma of Nutritional Medicine, went to the gym regularly, took high grade supplements and cut out inflammatory foods. Yet I was still struggling with all my problems. Other people in my nutrition class had health issues but they all seemed to dramatically improve through taking the right supplements and changing their diet but for some reason that just wasn’t the case for me. It didn’t matter how many activated B vitamins, probiotics or magnesium I would take, I would still feel this persistent cloud of pain and exhaustion. I was so sick and tired of waking up sick and tired. I was also frustrated that every time I l would look in the mirror; my body would not mirror my healthy lifestyle. It didn’t matter what ‘diet’ I tried, I was always ‘belly heavy’, always bloated.

Early 2017, I started to develop shooting pains that would start at my groin and run down my legs like an electric shock. I also began struggling walking for long periods of time. I was very fit at this point, but after about 10 minutes or less it would start to feel as if I had a brick sitting inside my pelvis. Stairs and hills would aggravate the feeling. I also had a persistent stabbing pain in the lower right side of my back. That heavy brick feeling in my pelvis was also starting to accompany the back pain and not just when I’d go for a walk, it was constant.

I decided to finally listen to my mother and go and see her gynaecologist. My older sister just recently had a laparoscopy for endometriosis (and my mum did about 10 years prior) so she thought it might be worthwhile finding out if I possibly had it. I thought this was going to be a total waste of time as the symptoms my sister and mum had: painful periods, I never experienced. I explained to the gynaecologist all my symptoms and he said it could possibly fit the endo picture due to it being hereditary, but can’t be diagnosed unless I have a laparoscopic surgery. I was sure that it couldn’t be endo as I never had overly painful periods and that’s what I thought endometrioses was. I had also been on the pill for about 6 years at this point so he said the pill could be masking period pain.

As my ultra sounds (both internal and external) were ‘totally normal’ I was told to try more physio and go on a stronger pill and if things didn’t change in the next two months it might be worthwhile to do an ‘explorative laparoscopy’. Around this same time, I began having breakthrough bleeds which I had never had before. They felt like a period but only lasted about 2 days. A month later, I booked in for surgery. Endometriosis was found in my appendix (which was also removed), both my ovaries, my uterus, bladder, bowel and rectum. He told me that because it was so severe, I will need another surgery in 8 weeks’ time to deal with the adhesions and scar tissue.

Unfortunately, my surgeries did not stop the pain. I still struggled with all the same symptoms I had before for months after my surgery. So I needed to find a way to control it, naturally.

What is Endometriosis?

Mayo Clinic defines endometriosis as when the tissue that normally lines the uterus, grows outside of the uterus causing pain and sometimes infertility. This tissue has no way to escape the body so it becomes trapped. Surrounding tissue in the body can also become irritated and create scar tissue and adhesions causing other organs to stick together (my left ovary is currently stuck to my bowel). Symptoms can include painful periods, painful intercourse, excessive bleeding, bowel issues, fatigue and the list goes on. Because symptoms of endometriosis can affect so many different areas in the body it is very hard to diagnose. This disease affects 1 in 10 women and the standard delay of diagnosis is 7 years.

Treatment

The standard treatment of endometriosis is pain killers and hormones. As endometriosis thrives off oestrogen, progesterone only pills and the Mirena are usually prescribed. Endometriosis is not curable so it’s all about ‘symptom management’. I decided to take a more natural route. No pain killers and no hormones.

Diet

Anti-inflammatory diet

As Endometriosis is an inflammatory disease, it is essential to have a diet rich in anti-inflammatory foods. I completely cut out gluten, grains, dairy and sugar. I also completely cut out soy products as I didn’t want any excess oestrogen in my body. A research paper ‘Early Life Factor and the Risk of Endometriosis’ showed that women who were fed soy milk formula as a baby had more than twice the risk of endometriosis in comparison to women who had no soy (2). I reduced my intake of red meat, caffeine and alcohol. Once I started to eat a strict paleo diet I noticed big differences with my energy levels and digestion.  Fat (avocado, fish, olive oil, nuts) and fibre became my best friends. Fibre is essential for helping clear out excess oestrogen in the body and it’s amazing for bowel movements. I started taking 1 tbsp. of chia seeds mixed in water 3x per day and it did the world of good for my constipation.

See my smoothie recipes below:

Daily Digestion Smoothie

Ingredients

• 1 serve of 180 chocolate vegan protein
• 2 tbsp. Ground Flaxseed
• 1 tbsp. Coconut yoghurt
• 1 banana
• Water

Method

1. After you whizz it up, mix in 1 tbsp. of chia seeds and enjoy

Antioxidant Smoothie

Ingredients

• 1 serve of 180 chocolate vegan protein
• 1 tbsp. Acai Powder
• 1 tbsp. Goji Berry Powder
• 1 tbsp. Coconut yoghurt
• 1 handful of blueberries
• 2 tbsp. Ground Flaxseed
• Water

Method

1. After you whizz it up, mix in 1 tbsp. of chia seeds and enjoy

Supplements

N-Acetyl Cysteine

NAC helps make glutathione which is one of the body’s most powerful antioxidants which is responsible for neutralising free radicals. Free radicals damage cells in the body and cause inflammation. A 2013 study noted that NAC actively reduces the size of ovarian endometriosis (3)

Curcumin

A powerful anti-inflammatory supplement from Turmeric. It has been shown in studies to reduce endometriosis cells (4, 5) and inflammation.

Magnesium

Helps to reduce pain associated with endometriosis. High levels of oestrogen in the body can actually deplete magnesium, causing further pain especially around your period time when magnesium is already at a low. Magnesium helps to reduce cramping and spasms. I have found this very helpful.

Antioxidants

Antioxidants have been shown to reduce pelvic pain for women with endometriosis. Antioxidant supplementation has been shown to reduce inflammation markers in the peritoneum fluid of women with endo (6). I started making daily protein shakes loaded up with high antioxidant foods such as goji berries, cacao, maca etc.

Lifestyle

Training

I incorporated more HIIT training into my weekly routine. Lifting heavy weights was putting too much pressure on my pelvic floor muscles and abdomen due to having to tense and brace my body which would lead to a pain flare up. HIIT training also helps produce testosterone and the more testosterone that is produced, the less oestrogen. HIIT is also much more sustainable as It does not place too much stress on the body and the nervous system in comparison to how I was feeling after heavy weights. A 2003 study also showed that women who participated in regular high intensity exercise reduce their risk of developing endometriosis (7)

Pelvic Physio

Pain isn’t always the endometrioses nodules itself, but the muscles (especially the obturator internus) surrounding the pelvis that have been in overdrive protecting the area for years. Neurological pain pathways become highly sensitive from extended periods of ‘being in pain’ and don’t work how they normally should. Nerve pathways structurally change in the brain and spinal cord. They start firing off messages to feel pain more intensely and to feel pain even when you’re not actually in pain. A Pelvic physio is essential to help you learn how to relax the body and reduce your pain sensitivity

Mental Health

Depression and anxiety levels are high in people living with chronic pain. It’s so important to not just look after you physical but mental health too. Endometriosis can make you feel like your body has failed you and you feel like less of a woman. The pain, the bloating, the expense of treatment, the ‘endo belly’ can all leave you feeling overwhelmed. It’s so important to have someone you can talk to about how you feel like friends, family, or even a counsellor or psychologist. Meditation is also very helpful for relaxation and stress reduction.

Chemicals

I changed all my household and skincare products to everything toxin free. I changed everything from my shampoos to my dishwashing powder as well as all my beauty products. Most products have endocrine disruptors and oestrogenic chemicals in them. When the body absorbs them they copy and send false signals to your hormone receptors. They alter the amount of hormones created and also interfere with the productions and elimination of naturally occurring hormones. Parabens are also another nasty chemical which mimic oestrogen in the body.

Resources

Having endometriosis can leave you feeling very alone. The good news is that there are many platforms now such as Instagram and Facebook for women to connect with each other and share their stories and advice. Some great websites with information are:

EndoActive – https://endoactive.org.au
Endometriosis Australia – https://www.endometriosisaustralia.org
Jean Hailes – https://jeanhailes.org.au/health-a-z/endometriosis

My personal Instagram where I document my story is @laurenandendo so feel free to reach out for more information.

References:

https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
https://www.fertstert.org/article/S0015-0282(15)00469-0/fulltext#appsec2.1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662115/
https://docs.wixstatic.com/ugd/aefbed_36863af67d9f458999fa7f72fdce73cc.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3941414/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3484190/
https://academic.oup.com/aje/article/158/2/156/323360#4372004