10 Things You Wish Someone Had Told You About Endometriosis

Endometriosis (Endo) is a multi-faceted disease that requires a holistic approach to treatment. If you have Endometriosis (or suspect you may have it), there is a good chance you are not getting all of the information available to you from your GP or specialist. Endometriosis usually takes an average of 8 years to be diagnosed. Interested in knowing more? Here is some Endo-related info you might not have heard of before:

  1. Immune dysfunction & bacterial contamination lie at the heart of Endometriosis.

Outside of oestrogen excess and inflammation, an immune dysfunction exists at the heart of Endometriosis, where immune cells designed to break down Endometrial lesions don’t work as they should. This is further driven by bacterial toxins (called LPS) in the pelvic microbiome that translocate from a leaky gut. Which explains why so many women with Endo get symptom relief on antibiotics.

Solution: Detox, avoid inflammatory foods and foods that can trigger allergies, and talk to me about other immune boosting, antimicrobial herbs, and nutrients you can take.

  1. A laparoscopy is the gold standard for diagnosis, but there are other less invasive methods that can detect the disease.

Did you know there are other Endometriosis assessments that can be used to detect (not diagnose) advanced Endometriosis? These include:

  • A Deep Infiltrative Endometriosis Scan (also known as a Detailed Endometriosis Ultrasound), which is different to the standard pelvic ultrasound many doctors continue to order today. This scan is particularly useful in picking up severe Endo, where lesions have infiltrated your organs and potentially stuck them together. This type of scan is a very useful assessment which can help you decide how urgent your surgery is, and it acts as a guide for the surgeons themselves.
  • The blood biomarker CA-125 which can be measured in a standard blood test. CA-125 used to only be used as a marker for reproductive cancers, but these days many doctors know they can use it as a guide to assess for possible Endometriosis and general reproductive inflammation (as it will also be high in the presence of Fibroids).

Solution: Make sure to get these tests completed before considering surgery. Also be aware that menstruation will always elevate your CA-125, so it is important not to do this blood test in the first week of your cycle.

  1. A laparoscopy is required to diagnose Endometriosis, but the laparoscopy itself can create more Endometriosis in the form of scar tissue.

A key feature of advanced Endometriosis is adhesions – clumps of scar tissue that love to stick things together and cause pain. A laparoscopy by nature may increase the risk of creating new adhesions that can add to the disease (although current research is unclear to what extent). Therefore, good surgeons will only operate when they absolutely have to, usually only in the case of infertility or severe symptoms.

Solution: If you are not planning for pregnancy (or if you want kids later on), delay your surgery as long as possible. Also check your surgeon has surgical qualifications (and is not just a gynaecologist) to ensure the best possible surgical outcome.

  1. Up to 25% of women with Endometriosis have no symptoms at all, which can be problematic when fertility issues arise.

Why? Because many doctors are still not performing an adequate level of assessment to check for Endometriosis in case of unexplained infertility. These women are instead often quickly referred to private IVF clinics whose profits are may be based on the number of cycles women are put through. Here many women with silent, undiagnosed Endometriosis are submitted to repeated rounds of oestrogenic drugs (used for the egg collection) that fuel the disease thus advancing the infertility even further. Many women are put through repeated failed IVF cycles, only to conceive immediately once an investigative laparoscopy is performed (and the silent Endo is found and removed).

Solution: If you are having issues conceiving and you’re considering IVF, make sure to ask your doctor to perform the non-invasive assessments described in point 2.  Based on those results your specialist can advise if you are a good candidate for an investigative laparoscopy or not.

  1. Iron supplements and transfusions can be problematic for women with Endometriosis.

Iron deficiency anaemia is common amongst women with Endometriosis who experience heavy blood loss during their period (this is called menorrhagia).  However, iron metabolism in women with Endo is complex and often dysfunctional. These women often experience a severe iron deficiency while simultaneously experiencing iron overload in some of the tissues (such as peritoneal endometrial lesions).

Iron is also an ‘oxidant’, which means it causes oxidative damage that can worsen inflammation. Supplementing iron has also been shown to feed bad gut bacteria and to possibly increase one’s susceptibility to infection. All this combined can lead many women with Endo to experience flares with both iron supplements and IV treatments.

Solution: Avoid/ limit iron supplements and IV’s whenever possible (not during pregnancy). For other natural solutions to iron deficiency anaemia have a read of this post.

  1. Environmental toxin exposure can hugely impact the development of the disease.

The development of Endometriosis can be fuelled by an exposure to toxic chemicals, pesticides, dioxins, heavy metals, and mould.

Solution:  Clean up your environment and watch your symptoms improve. Eat organic when possible. Drink purified water. Check your home and office for mould. Have your teeth checked by a qualified dentist to remove and replace any amalgam fillings you may have. Detox using natural medicines (under the supervision of a nutritionist or naturopath).

  1. Tampons and moon cups are a bad idea when you have Endometriosis.

A popular hypothesised cause of Endometriosis is the retrograde menstruation theory, where blood flows backward into the pelvis (and not out) during menstruation. While there is limited research on this, it is possible that tampons and moon cups may increase retrograde menstruation thus flare Endo symptoms. They also both carry an increased risk of Toxic Shock Syndrome (TSS) from potential bacterial contamination. Non-organic tampons are particularly bad for Endo as they are often whitened with dioxin-rich bleach.

Solution:  Try some period pants instead. They are not only great to wear but also much more environmentally friendly and economical. They also give you more back up protection than a cup or tampon, and unlike pads you feel like you aren’t wearing anything.

  1. Certain foods are likely to flare your symptoms, so it is best to avoid them altogether.

There are certain food groups that may contribute to the severity of Endometriosis symptoms. Some of these include:

  • Gluten – found in wheat-based breads, pastas, cereals, and baked goods. Read more about this and great substitutes here.
  • Cow dairy products that contain A1 casein – such as cow’s milk, cheeses, yogurt & cream. Read more on great substitutes for cow milk products here.
  • Foods rich in histamine/ foods that release histamine – as histamine stimulates the ovaries to release more oestrogen. This includes all fermented foods (including vinegars), most alcohol (especially red wine), hard cheeses, smoked meats, canned fish, bone broth, yeast, deli meats, dried fruit, banana and avocado.

Solution: Work on your gut health and substitute your favourite items on the list rather than cutting out food groups altogether.

  1. Natural medicines can greatly reduce the severity of your symptoms

Natural medicines can go a long way to reducing the severity of Endo symptoms. They do so by addressing the underlying drivers without harming the body (unlike some drugs).  Some natural medicines address the underlying drivers of Endo by working to clear oestrogen excess, reducing inflammation, modulate the immune system, heal the gut, remove pathogenic bacteria such as LPS, balance hormones, detoxify the liver and support your overall mental health.

Solution: Rather than buying supplements without any professional guidance, talk to me – I can personalise your treatment plan with practitioner-only supplements that are cleaner are far more powerful than those sold over the counter.

  1. When you have Endo, you need a team

If Endometriosis is impacting your quality of life, having surgery on its own will not do the trick. You need a larger support team, including an open-minded GP, a naturopathic practitioner, a pelvic floor physiotherapist, a Chinese Medicine Herbalist/ Acupuncturist, and a counsellor of some sort.

Solution: Worried you can’t afford all of these? Start with just a couple. It is also worth researching to find the best private health fund for you that can offer you an affordable, comprehensive plan to help fund your support team. If you are looking for emotional support, it is also worth talking to your GP about the Australian Mental Health Care Plan that can cover up to 10 sessions with an APHRA registered mental health professional.

Cheers,