The invisible battle millions fight: Why endometriosis continues to be one of medicine's most misunderstood and most painful mysteries.

March, the hope of spring in the northern hemisphere is showing up in nature's messages - crocuses adorning grass in the parks of London, fresh green buds & baby leaves appearing on plants & trees. And yet, another endometriosis awareness month where, in the UK especially, it feels as though progress has not only stalled, but appears to be regressing. The average length of diagnosis time in the UK is now 8 years and 10 months according to Endometriosis UK. This is worse than when I received my diagnosis in 2017 (back then it was 7.5 years). In part, we are battling with unmanageably long NHS waiting lists, at the same time as the gold standard of diagnosis is still a laparoscopy, a surgical procedure carried out under general anaesthetic. In the last few weeks, I have yet again had to assure people that a transvaginal scan is not enough to rule out endometriosis, especially if you're presenting as symptomatic. Superficial lesions, while not necessarily correlating to milder day to day symptoms, are difficult (that's an understatement) to see on an ultrasound.

Today, we will get into some of the main symptoms; predisposing factors; medical treatment options; whether to avoid certain foods; whether the condition gets worse with age; how to approach the condition holistically; where to start if you’re feeling lost; a more hopeful direction for the future. We’ve got lots to get through so let’s get into it.

What are the main Symptoms of endometriosis?

• Pelvic pain - chronic pelvic pain, pain during or after sex

• Pain that radiates down into the legs

• Digestive symptoms – alternating diarrhoea and constipation

• Painful urination or bowel movements

• Vomiting

• Bloating

• Nausea

• Painful periods

• Ovulation pain

• Heavy or prolonged menstrual bleeds

• Fatigue

• Low mood & depression

• Fertility complications/ infertility

How is endometriosis diagnosed?

The definition of the condition is endometrial-like tissue that is growing in other parts of the pelvis or the rest of the body. The gold standard of diagnosis is via a laparoscopy – which is a surgery that requires general anaesthetic and 10 – 14 day recovery time depending on whether any tissue was addressed during the surgery. Some endometriosis can be seen via ultrasound scans, however, it is difficult to see more superficial lesions via ultrasound, so this is not sufficient to rule out the conditions. 

What causes endometriosis?

There is no singular cause that can be attributed to why someone has endometriosis, however, there are various contributing factors and theories that both contribute to the expression of the disease and its ongoing occurrence. These include some of the following:

• Genetic Susceptibility – if you have a close family member that has the condition or a history of other oestrogen dependent conditions, this could make it more likely that you are susceptible to developing it

• Compromised Antioxidant Status

• Blood Glucose Regulation Issues

• Hormonal dysregulation and progesterone resistance

• Mitochondrial Dysfunction of Endometrial Tissue

• Pain Brain – changes in the pain and nervous system in response to chronic pain

• Immune dysfunction – inability to regulate itself

• Dysbiosis – imbalance of bacteria in the gut and vaginal microbiome

• Stress Response – circumstantial and physiological factors that contribute to a dysregulated stress response

• Compromised Biotransformation Pathways – upregulation of liver pathways that contribute to harmful oestrogen metabolites

• Exposure to Endocrine Disruption Chemicals – In utero, contributing to the susceptibility to the disease and in everyday life, contributing to the continuation of the disease

What are my treatment options for endometriosis?

Despite the condition being multi-factorial and affecting multiple body systems, the current medical approach still focuses on the management of hormones (hormonal fluctuations influence the growth of tissue, but they are not the cause of the tissue in the first place).

As mentioned previously, the diagnostic gold standard is to have surgery to confirm the presence of lesions or cysts to confirm the disease, there is the possibility to have tissue burnt off via laser  (ablation), however, more research has shown that excision surgery (removing the tissue that shouldn’t be there by carefully cutting out is more effective at preventing the reoccurrence of the lesions). To use a crude analogy, imagine ablation is pulling out a weed that you see but leaving behind the root, whereas excision digs out the root as well.

Some people post-surgery are then recommended some form of hormonal birth control, to “regulate hormones” AKA shut down hormonal fluctuations. This can be effective at managing symptoms for some, specifically pain, however, it doesn’t address any of the root cause issues or manage other symptoms of the condition.

Another option people are presented with is “mini-menopause” – this involves taking a medication called a GNrH inhibitor that is designed to shut down hormonal communication in the body, mimicking menopause as levels of oestrogen and progesterone are suppressed.

The problem with shutting down our oestrogen and progesterone fluctuations, is that they have many more functions in the body than regulating our menstrual cycle. They have an impact on brain health, bone health, skin health and our immune system.

What foods should I avoid?

This a very personal situation as every woman with endometriosis is different. There is research to show that the avoidance of gluten can have an impact on pain scores in those with a diagnosis, however, the benefits are seen over the longer term rather than immediately. I know that a lot of my clients struggle with this as an intervention.

There is value in doing a food inflammation test (note this is NOT a food intolerance test) – to see whether there are particular foods that are prompting the formation of an immune complex that is stimulating your immune system. Those with endometriosis do tend to react to a lot of different foods and we have famously been fobbed off with an IBS diagnosis for years. I am trialling a food inflammation test on myself at the moment and those interested in my results can send me a message for an update.

I think what is more important in endometriosis is working on improving your tolerance to foods and broadening the diet, however, if you are really reactive, you’ll want to do this with a help of a qualified nutritional therapist/holistic practitioner as you’ll likely need to work on the health of your gut wall first, then broaden out your foods.

Does endo get worse with age?

Everyone with the condition has a different experience, some have no detectable symptoms, have fertility issues that lead to further investigations and receive a diagnosis. After their laparoscopy they continue to have no symptoms (these don’t tend to be the people I work with obvs). Some had really painful or periods as a teenager, were put on the pill and have been on the pill for 15/20 years. Some have been battling with different birth control options, repeat infections and mood disorders for years. So there is no blanket answer to does it get worse with age. However, what I will say is that we know that oestrogen fluctuations contribute to the growth of endometrial-like tissue around the body. When do we hear about serious fluctuations? Perimenopause, IVF and the decision to take HRT. Yes, another thing for the endometriosis crew to consider. The impact of life stage on our condition. I do see some get their condition managed through lifestyle change and then the hormonal rollercoaster of perimenopause means that we need to revisit the interventions and manage slightly differently.

How Can you Approach Endometriosis Holistically?

Whenever I speak to a potential client about their condition, we always talk about the impact on the different body systems and that endometriosis requires a multi-faceted approach.

We want to consider the following systems:

+ The microbiome – a major player in the immune function and regulation of the body, a site of oestrogen detoxification and potential recirculation in the body (hello oestrobolome), a possible driver of inflammation (through dysbiosis and LPS producing bacteria), a site of histamine up-regulation potentially contributing to pain

+ The liver – how it is breaking down oestrogen – are these going down more proliferative pathways?

+Digestive function and bile flow – if our digestive function is down-regulated (hello chronic stress) and we’re not producing enough bile, this impacts the body’s ability to detoxify oestrogen in a healthy way

+Antioxidant Production and Recycling – we do tend to see compromised antioxidant production and/or lower antioxidant status in endometriosis

+Stress Response and Nervous System - Managing pain brain, non-painful stimuli can become triggers to pain, we need to manage neuropathic pain. We also need to consider the impact of inflammatory chemicals in the body and the impact they have on mood, depression and anxiety.

Where to Start with Suspected Endometriosis/ a Recent Diagnosis

There is so much to take in here and I really don’t want you to think that you have to do everything in one go – I normally start with an intensive 12 week program to make sure that people are properly supported while they are making these changes.

As a starting point I normally want to address the following:

+identify whether there are any nutrient deficiencies that we can correct with supplements in the short term

+support the mechanics of digestion – most of us have been super stressed for years while being told we just need to take more pain killers (eye roll) – so our digestive function has been downregulated. Make sure you are eating in a quiet and restful environment, take a deep breath with a long exhale before you start eating and chew your food carefully

+identify your key stressors and whether any of them are modifiable? Can you take an extra break, can you exercise less intensively, can you spend more time with friends that make you laugh? Can you take 15 minutes per day to read while enjoying your favourite herbal tea?

 I normally carry out some functional tests with my clients to identify which recommendations will have the biggest impact on managing their symptoms and improving their quality of life. We’re most commonly looking at:

+a comprehensive blood test to identify nutrient deficiencies, thyroid issues and digestive insufficiencies

+a comprehensive stress hormone and sex hormone test – to identify liver pathways that might need support, how to support the stress response and whether antioxidant status is depleted

+ a comprehensive gut microbiome test to identify which areas most need support – gut wall, addressing high levels of inflammatory bacteria, addressing low levels of commensal bacteria, managing high levels of oestrogen recirculation etc

My hopes for the future

Oh I have so many hopes for the future but here are my top 3 at the moment.

I want to see more targeted immunotherapy approaches and less reliance on hormonal birth control and shutting down one of the main communication systems of the body.

We need a combined approach of psychological and anti-inflammatory lifestyle interventions for pain management.

Adopting widespread non-invasive diagnostic measures, I’m hoping we aren’t too far off from some of these, for example saliva tests in France, blood tests in Australia and sophisticated machine learning to interpret scans more effectively (if anyone wants to get in touch about setting this model up, I am here for it).

I feel like I’ve only scratched the surface here and I would love to go into more depths on these topics, do get in touch if there is a particular topic you would like to hear more on. If you or someone you know suspects endometriosis or has a diagnosis and wants support, I’ve got a zero obligation strategy call that anyone can book in for via the Take Action Page on my website.