Nutrition and Endometriosis: Michelle's Story
By Michelle Nielsen
As part of Endometriosis Awareness Month, we’re shining a light on healthcare professionals who are endo advocates and commit their practice to providing high quality resources for women with endometriosis. Nutritionist and clinical educator for PPEP Program Michelle Nielsen discusses her journey to diagnosis and the role of nutrition in helping her to live her best life with endo and empower others to do the same.
Hi there, thanks for stopping by, my name is Michelle Nielsen, and I am the Clinical Educator for the Periods, Pain and Endometriosis Program (PPEP) Talk with the Pelvic Pain Foundation of Australia (PPFA) in South Australia.
My journey to a diagnosis of Endometriosis started over six years ago in 2014; I’d just come off the oral contraceptive pill after taking it for a good decade for acne and contraception. I wanted to lead a more natural lifestyle and opted to try the copper IUD for contraception. The copper IUD was an extremely painful experience for me and coming off the oral contraceptive pill may well have been the triggering event that inflamed my Endometriosis lesions that may have been lying dormant for all those years on the pill. After a few months, I had the copper IUD removed, and since then, my main symptoms have been deep stabbing pain with sexual intercourse and pain with going to the toilet. I did have abnormal pain leading up to and during my period for many days, but that wasn’t as much of a red flag as the pain with sex and bowel pain - symptoms most people don’t associate with Endo.
So, with this newfound pain wreaking havoc on my life and intimate relationships, I went to see many doctors and Gynaecologists over the years who told me I might have pelvic inflammatory disease, STI’s, PCOS, a tumour, ovarian cysts, IBS or painful bladder syndrome. I was cleared on all the above before one Gynaecologist in 2018 suggested that I probably had Endometriosis. I vividly remember starting to cry in her room, as I had never heard of the word, but it sounded scary and she wasn’t very empathetic or understanding. She didn’t explain anything to me but directed me to book in for surgery and ‘it would be fine’. It is at this point today, I reflect and wish I had been part of a program like PPEP Talk when I was at school. Quite possibly I could have known what Endometriosis was and identified my pain sooner. For those that don’t know, PPEP Talk is a school’s education program that teaches students about what’s normal and what’s not when it comes to period and pelvic pain, informs on Endometriosis, provides education on ways they can manage pain themselves, and directs them to where they can gain further support. We have visited 70 schools in South Australia so far (March 2020), completed a pilot program in South East Queensland with QENDO and another pilot program in Victoria in Latrobe Valley.
So anyway, I booked in for surgery with my Gynaecologist and did some research. But, had to cancel my first laparoscopy a few days before as I must have stressed myself out so much that I got Pericarditis – so many questions about the surgery & condition running through my head. Pericarditis is extremely painful, it’s inflammation of the heart walls that feels like you are having a heart attack, it lasts for months, and you cannot go under anaesthetic with this kind of cardiac condition. At the time I did not put two and two together with Endo and Pericarditis, it was only later when I started working for PPFA and after much research that I found that Endometriosis is a whole-body inflammatory and immune disease, and the two could be linked.
With my fresh knowledge of Endo being an inflammatory and immune disease, I decided to get back to my roots of nutrition and try and improve this from a diet point of view. I studied a Bachelor of Health Science (Nutrition) at university and graduated as a Nutritionist back in 2010. I worked as a Nutritionist for many years before diving into my love of cooking, then exploring youth mental health and finally educating on women’s menstrual health and pain with the amazing PPFA. I feel that all these topics gel so perfectly together, but what I found nutrition-wise for Endometriosis is that leading an anti-inflammatory diet can be very beneficial.
I have always prided myself on eating healthy and looking after my body, but I needed to shake things up to try and improve my pain. To calm my immune system, I started by strictly avoiding immune-disrupting proteins like gluten (Marzili et al., 2012), A1 casein (dairy protein) from cow’s milk (Ul Haq MR et al., 2014), and possibly eggs (lucky I’m fine with eggs now, especially poached with avo & GF toast, but other people may not be as they are a high allergen food). Both A1 casein and gluten disrupt immune function and stimulate the release of inflammatory cytokines (Deth R et al., 2016) (Ho S et al., 2014). Unfortunately, it’s not enough to partially avoid these foods because even a small amount of casein or gluten can generate inflammation in the body for days or even weeks. I also cut out refined sugars, coffee (*sad face*), alcohol and processed vegetable oils as these are known to create inflammation as well. I loaded up on gut-loving goodness like homemade bone broth (so much easier to make than you might think!), gelatin/collagen and fermented foods (sauerkraut, kombucha and kefir), which help to repair the gut lining. When you eat poor quality food, are chronically stressed, have bacterial/viral infections, parasites, take antibiotics, and some drugs (including NSAIDs and the hormonal birth control pill), these can cause a breakdown of your gut’s integrity at the cellular level causing intestinal permeability (aka leaky gut). When intestinal permeability is present, proteins, which should be kept within the intestine, can escape. Your immune system doesn’t take kindly to these proteins moving through the body, and so it attacks, causing more inflammation - which is why gut health is such an important piece in the endo puzzle.
Leading an anti-inflammatory and gut-healthy diet was a gamechanger for me, my pain and bloating decreased, I had way more energy (compared to always being fatigued – another great Endo symptom), I even lost some weight, but I wanted to delve deeper into my health and take some immune-modulating natural supplements like Curcumin/Turmeric, Zinc and Magnesium daily. Curcumin (the main active ingredient in turmeric) is widely used for its anti-inflammatory properties and is said to reduce the size and activity of Endometriosis lesions by reducing a certain inflammatory protein (NF-κappa B) (Jana S et al., 2012) and blocking estrogen’s stimulating effect (Zhang Y et al., 2013). Zinc is a key anti-inflammatory nutrient as well and repairs intestinal permeability (thereby improving autoimmunity) (Finamore A et al., 2008) and can reduce prostaglandins and pain (Nozaki C et al., 2011). Magnesium helps calm the nervous system, reduce blood sugar, normalise insulin, support thyroid health and aid sleep.
At the end of 2019 I was finally able to get my first laparoscopy and be truly diagnosed with Endometriosis. My surgeon found lesions on my Pouch of Douglas (bowel area), Uterosacral ligaments and pelvic walls (this explains the painful penetrative sex and bowel movements). She excised them all and inserted a Mirena. I was told I have stage 2 endometriosis, so relatively mild superficial implants that measure less than 5 cm in diameter without significant adhesions and the commonly found fibroids. However, let’s remember that the size or amount of Endometriosis doesn’t always correlate to the amount of pain you are in. I believe that implementing my dietary changes before, during and after laparoscopy has made my own transition through surgery so incredibly smooth and pretty much pain free. I was off opioids in 1 day, anti-inflammatories in 5 days and have hardly experienced any pain since. I put that down to my amazing excision surgeon, good preparation pre/post-surgery with a few months of the OCP and amitriptyline (which I no longer need) and following an anti-inflammatory diet strictly. I also practice yoga and walk daily, meditate for stress reduction, do my pelvic stretches from my pelvic health physiotherapist and get regular acupuncture.
Even though this kind of healthy lifestyle change has worked wonders for my condition, it may not work for everyone and it is important to consult your Doctor and or Dietitian/Nutritionist before implementing these dietary changes. Other dietary lifestyle changes to investigate with your Dietitian/Nutritionist for inflammatory conditions like Endometriosis could be a low FODMAP diet, autoimmune protocol (AIP) diet and paleo/ketogenic diet.
To follow my personal journey and find out more about how I tackle Endo with nutrition, check out my Instagram @michellenielsennutrition. To learn more about the PPEP Talk, follow us on Instagram @ppeptalk and @pelvicpainfoundationaus or visit our website https://www.pelvicpain.org.au/.
Michelle x
References
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Finamore A, Massimi M, Conti Devirgiliis L, Mengheri E 2008, ‘Zinc deficiency induces membrane barrier damage and increases neutrophil transmigration in Caco-2 cells’ The Journal of Nutrition, Volume 138, Issue 9, September 2008, Pages 1664–1670, retrieved 02 February 2020, < https://www.ncbi.nlm.nih.gov/pubmed/18716167 >
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Marziali M, Venza M, Lazzaro S, Lazzaro A, Micossi C, Stolfi VM 2012, ‘Gluten-free diet: a new strategy for management of painful endometriosis related symptoms?’ Minerva Chirurgica 67(6) pp499-504, retrieved 02 February 2020, < https://www.ncbi.nlm.nih.gov/pubmed/23334113 >
Nozaki C, Vergnano AM, Filliol D, Ouagazzal AM, Le Goff A, Carvalho S, Reiss D, Gaveriaux-Ruff C, Neyton J, Paoletti P, Kieffer BL 2011, ‘Zinc alleviates pain through high-affinity binding to the NMDA receptor NR2A subunit’ Nature Neuroscience volume 14, pages1017–1022, retrieved 02 February 2020, < https://www.ncbi.nlm.nih.gov/pubmed/21725314 >
Ul Haq MR, Kapila R, Sharma R, Saliganti V, Kapila S 2014, ‘Comparative evaluation of cow β-casein variants (A1/A2) consumption on Th2-mediated inflammatory response in mouse gut’ European Journal of Nutrition volume 53, pages1039–1049, retrieved 02 February 2020, < https://www.ncbi.nlm.nih.gov/pubmed/24166511 >
Zhang Y, Cao H, Yu Z, Peng HY, Zhang CJ 2013, ‘Curcumin inhibits endometriosis endometrial cells by reducing estradiol production’ Iran J Reprod Med. 2013 May; 11(5): 415–422, retrieved 02 February 2020, < https://www.ncbi.nlm.nih.gov/pubmed/24639774 >
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