Updated: Mar 13
In support of endometriosis awareness month, I wanted to share my recommendations to those going through the diagnosis of endometriosis. Here, I talk about symptoms, investigations, treatments, fertility, and my top 10 tips for those living with this debilitating condition.
What is endometriosis?
Endometriosis can be a painful and debilitating condition where endometrial tissue grows outside or the uterus. It’s most commonly found in the pelvic cavity such as on the ovaries, fallopian tubes and it can effect near by organs like the bladder and bowels. In rare presentations, endometrial cells can also be found in distal locations such as the lung and nose.
What are the symptoms?
Symptoms will vary dependant on the location of the adhesions, the most common presentations are
Painful periods (dysmenorrhea)
Heavy periods (menorrhagia)
Pain outside of menstruation
Spotting outside of the menstrual cycle
Lower back pain
Pain after sex
Gastrointestinal disorders including bloating
*Some do not present with any symptoms.
It’s actually really common
Endometriosis affects 1 in 10 women, it’s the most common gynaecological condition In the UK.
A staggering statistic is that those that suffer with infertility have a 30-50% likelihood of having endometriosis a part of the fertility picture.
The incidence of endometriosis found in those suffering from dysmenorrhea is 40-60%! Many women assume period pain is normal or a 'rite of passage', and ignore these symptoms.
Why does it take so long to be diagnosed?
With an average of 8 years to diagnosis, it’s no wonder endometriosis remains undiagnosed for so many. Symptoms can mimic other conditions such as IBS so it may be tricky to pick up on. It's important to note that 20-25 percent of those with endometriosis will have no symptoms at all, it’s often referred to as ‘silent endometriosis’.
I'm often asked... is possible to get pregnant? Yes it is! Infertility can be a symptom of endometriosis, but often those suffering with endometriosis will be able to have children. Sometimes these patients will need help via assisted methods, but not always. I have worked with many endometriosis patients who have conceived and delivered a healthy baby naturally. Understanding how endometriosis effects fertility can best equip you for how to support your individual presentation.
How endometriosis could effect fertility
Scarring and adhesions that can create structural changes in the reproductive organs and may create blockages in the fallopian tubes. If the tubes are blocked, IVF would be worth considering.
Endometriosis can negatively effect egg quality and reduced libido
Hormonal imbalance's such as those often found with endometriosis can create a reduced progesterone secretion, this has the potential to cause a luteal phase defect. This is where the implantation window is too short to allow enough time for implantation.
Endometriosis sufferers may use pain relieving medications (specifically NSAIDS) and these very medications can delay ovulation making it harder to track ovulation. Late ovulation reduces chances of a successful pregnancy.
A large Danish recent cohort study reaffirmed the link between recurrent miscarriage and endometriosis.
How is it diagnosed?
Magnetic resonance imaging (MRI scan) can see deeper into the body than an ultrasound. An MRI may be able to detect deep endometriosis adhesions and adenomyosis, it may also help with surgical planning
Laparoscopy (keyhole surgery) is used often, a method to both detect and treat endometriosis by burning out the adhesions during the investigations
Ultrasound- May pick up large clumps of adhesions but can often miss small adhesions
Other helpful considerations
Noninvasive biomarkers can be of great significance for the diagnosis and treatment of endometriosis.
Both hormonal blood panels and DUTCH testing can not only provide insight into oestrogen levels, it can also suggest how oestrogen is being metabolised and provide insight into other hormonal markers and
Basel body temping (BBT) studies show that pelvic endometriosis has a positive correlation with a late decline in BBT during the first three days of the menstrual cycle. Sharing your charts with acupuncturist can be really helpful from both a Chinese medicine diagnosis and a western medicine consideration.
Gut and vaginal microbiome testing can be hugely revealing, this is not a method to diagnose endometriosis, but it can provide insight into inflammatory markers. Inflammation and dysbiosis of the vaginal microbiome can often be shared with the uterine microbiome and could suggest the likelihood of an endometriosis presentation, interestingly this study found the Gut microbiome testing to be more insightful than the vaginal microbiome testing in the case of endometriosis.
Zigwig's Endotest looks promising and 'one to watch' in terms of non invasive diagnostics soon to be available.
What treatments are available?
This varies worldwide,
This depends greatly on whether the patient is actively trying to conceive or intends to have children in the future. Many of the methods involve suppressing fertility hormones (such as an oral contraceptive, pituitary suppressants, progestogens (depo provera), GnRH agonists, mirena intrauterine device (IUD) and aromatase ace inhibitors (such as letrozole).
A laparoscopy can be both diagnostic and a valuable treatment. Endometriosis adhesions are burnt out when found which can offer patient relief for some and not for others. It's important to note that the adhesions can regrow, Up to 80% of patients experience pain again within 2 years post surgery which is why hormone treatment can be suggested following on from surgery. Some endometriosis specialists favour the adhesions to be cut out rather than burnt out and different techniques may yield different results. In older women with severe presentation or additional issues such as large fibroids, a hysterectomy may be considered. In a low number of cases, recurrence of endometriosis pain after hysterectomy is possible.
What’s the cause of Endometriosis?
There isn’t a general consensus of causation however, retrograde menstrual flow is a key component to endometriosis, yet many experience retrograde flow without the development of endometriosis. There is strong genetic component, with a greater likelihood Inheritance from maternal side. Trans generational exposures could also play a role, a grandmothers exposure to endocrine disrupters such as dioxin and medications such as diethylstilbestrol is another topic cited in research. Phthalate levels (specifically diethyl hexyl phthalate) were found to be significantly higher in women diagnosed with endometriosis, researchers conclude that these findings suggest that phthalates may play a role in the etiology of the condition for some women. Other causes may include hormonal imbalances that raise estrogen, and issues in the gut microbiota.
It's probable that endometriosis has an autoimmune component, whilst it hasn't been classified as an autoimmune condition it has the potential to be, endometriosis continues to be linked to autoimmune conditions. Inflammation may also be involved in the underlying cause as endometriosis patients tend to have raised inflammatory markers. In the case of infertility, these findings suggest that oxidative stress may be a contributing factor. There is an interesting link between hypothyroidism and endometriosis, thyroid health is vital for the proper functioning of the female reproductive system.
My top 10 tips for managing endometriosis
There’s plenty of changes that you can implement today which could make a difference. If you suspect you may have endometriosis and it hasn’t been diagnosed, speak with your GP to discuss your symptoms. Your GP may refer you for further tests.
If you have already been diagnosed with endometriosis and you are looking at ways that you can support yourself here are my self care tips.
Avoid endocrine disruptors
Endocrine disrupters such as bisphenol A and phthalates can mimic estrogen and can interact with estrogen receptors. A growing body of toxicological studies suggest that exposure to endocrine disrupting chemicals are contributing to female reproductive issues such as endometriosis and fibroids.
It’s near impossible to completely avoid these chemicals but we can make positive changes to reduce our exposure. Avoiding plastics that hold our food and drinks such as tupperware and drinks bottles, avoiding fragrance in our home and skincare are simple changes anyone can make . Click here to read about BPA and my handy swaps.
Castor oil packs
Castor oil packs have been a saviour to endometriosis fans across the globe, it’s affordable, accessible, a little bit messy and easy home self care. This method can help to get the lymph moving and is said to reduce inflammation and have a positive effect on adhesions/ fibroids. There are many versions of how to do this online, it involves a hot water bottle, organic castor oil and organic (non bleached) flannel. I have a slightly less messy version, please leave a comment if you would like a copy of my less messy version. It's important to note that this must not be used during heavy bleeding or in the luteal phase of the cycle if a pregnancy is possible.
Manage stress and anxiety
Stress can add fuel to the pattern of oestrogen dominance. Tools to reduce stress are your best friend and it's worth exploring what suits you, your lifestyle and preference. The key in success here is to practice regularly, daily if possible. One meditation per month isn't going to be as transformative as daily practice. Looking for your stress busting secret weapon? Check out my favourite stress busting tips.
Studies suggest a link between insomnia and endometriosis besides ‘painsomnia’. Sleep plays a huge role in the regulation of both hormones and our immune system. Lack of good quality sleep at the same time each night can play havoc with hormones and fertility. Find out more about this overlooked piece in the puzzle and what you can do here Sleep and infertility, what's the link?
Swap your milk from A1 to A2 milk
Consider switching to A2 milk. If you consume milk regularly, chances are you are drinking A1 casein milk (the majority of regular milk found in our supermarkets). This milk is said to be more inflammatory especially with endometriosis patient symptoms. A2 casein milk is better tolerated. Whilst A2 cows milk can be bought, sheep and goats are great A2 alternatives.
Diet plays a huge role in the management of endometriosis, a healthy diet with variety of fresh fruit, vegetables and fibre is essential. Individual recommendations are beyond the scope of this blog post and I recommend seeking the support of a nutritionalist for tailor made suggestions and a bespoke supplement regime. Not one blanket diet will suit everyone and this is why there can be so much conflicting advice online.
It's best to avoid pro-inflammatory foods such as saturated and trans fats (cakes, cookies, doughnuts)
Women with the highest consumption of trans fats had 1.44 times the risk of endometriosis diagnosis compared to those who had the lowest consumption. Endometriosis.org
Research is promising for implementing a gluten free diet for reducing pain and inflammation with endometriosis, this should be considered with the support of a medical professional such as a nutritionalist.
Omega 3 intake plays an important role in both the endocrine and immune system, increased intake can reduce inflammation and pain. Studies have also linked increase intake to a lower risk of endometriosis. Foods rich in omega 3 include spinach, walnut, chia seeds, fish oil, cod liver oil, kidney beans, flaxseed, salmon and mackerel.
Recent research demonstrates that the gut microbiome Influences hormones such as Oestrogen and Progesterone. Resistant starch is a great addition to your diet. It can help fight inflammation and acts as a prebiotic, feeding the good bacteria. This includes green banana, oatmeal and cooked and then cooled potato or rice. The majority of women can go one step further and Include fermented foods in thier diets, they are naturally probiotic; such as miso, sauerkraut, kombucha, sourdough, kimchi and kefir (goat and water if avoiding A1 milk). . However, those that struggle with high histamine food are unable to tolerate fermented foods (about 1% of the population).. Research has found probiotic use beneficial in endometriosis where there is dybiosis.
Turmeric has been long been hailed for its inflammation fighting hero for centuries, and continues to be used in Traditional Chinese medicine. Studies have also shown curcumin (the active in tumeric) can suppress the production of estrogen local to the lesions. Turmeric be used in cooking and in drinks (such as golden milk). Pro tip don't forget to add a pinch of black pepper to help absorption!
Please note: Not everyone can consume turmeric safely, speak with your doctor/ herbalist to discuss if it's safe for you to incorporate into your diet.
Check your vitamin D levels and speak with your nutritionalist and doctor about supplementing vitamin D. Women with endometriosis have a tendency to have lower vitamin D levels. Research shows that there is a link between vitamin D and pathogenesis of endometriosis. Vitamin d plays a key role in breaking down estrogen into the good version.
Studies have shown that vitamin d can reduce inflammation and control the reoccurrence and growth of endometriosis, however research has also found there to be no benefit of Vitamin D supplementation in patients with endometriosis and dysmenorrhea. So whilst more research is needed to see whether it can reduce pain levels, vitamin D has the potential to reduce the growth of additional adhesions.
Vitamin D levels should be evaluated as low levels can lead to other conditioners and may play a role in the progression of endometriosis.
In Chinese medicine, we understand tampons to be an example of ‘retained menstruation’ and could make symptoms worse. In addition to this, tampons can be made of hormonal disrupting chemicals such as dioxins and fragrance. Instead, opt for non toxic pads or consider silicone cups.
I have supported many women with endometriosis with great success, from those suffering with debilitating pain, to those seeking fertility support.
Endometriosis sufferers can be hypersensitive to pain. Studies suggest that central pain amplification (when the brain cannot process pain properly) may play a role in the development of pelvic pain. Acupuncture reduces pain (and the need for cycle disrupting NSAIDs) and reducing stress and inflammation. Acupuncture also plays a role in both immune system and hormonal regulation.
When working with women's cycles,
acupuncturists are very interested to note the colour of the menstrual bleed, the presence of clots, pain and or spotting. Your acupuncturist will want to know the duration of the bleed and the length of the cycle to diagnose from a Chinese medicine perspective, sometimes these signs may also point to a western medicine diagnosis.
Improvements and changes are generally noticed within a few months of regular acupuncture throughout the cycle, working with an acupuncturist who specialises in gynealogical conditions would be worth considering.
I want to hear from you!
I want to hear your experiences of endometriosis in the comments. What worked for you? Did you try any of these tips?
Please share in the comments your experiences that may help someone reading this blog
Wishing you health and happiness,