What is Endometriosis?
Symptoms, Myths, Prognosis and Treatment Options…
Founder, Green Body Mojo
Endometriosis is an inflammatory disease that occurs when tissues similar to those that line the uterus ‘crack their own detail’ and start growing elsewhere in the body (though mostly within the pelvic area).
These tissues then shed in the same way that the uterus does (your period) – except this time, there’s nowhere for the blood to exit the body. Blood, where it shouldn’t be, is corrosive. This can cause pain, inflammation and the development of scar tissue and adhesions.
Oh and did I mention, unlike your monthly cycle, these rogue tissues grow and shed at their own leisure.
It’s like a perpetual period party.
This is endometriosis.
Or as I call it, uterus-gone-wild.
Symptoms of Endometriosis
The experience of endometriosis is not clearcut. For some women, endometriosis is extremely debilitating and has a significant impact on their day-to-day life. For others, it’s most apparent during their period. Yet still, there are those who don’t present with one of the most common symptoms – pelvic pain -and are only diagnosed through investigations into fertility or other conditions.
Symptoms can include:
- Chronic pain, notably pelvic pain
- Extreme period pain
- Heavy or irregular periods
- Bloating (often called “the endo belly”)
- Low immune system
- Painful bowel or urine movements
- Painful sex
- Fertility complications
- Nausea and vomiting with periods
- 1 in 10 women of reproductive age in the UK suffers from endometriosis.
- 10% of women worldwide have endometriosis – that’s 176 million worldwide.
- The prevalence of endometriosis in women with infertility can be as high as to 30–50%.
- Endometriosis is the second most common gynaecological condition in the UK.
- Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.
- On average it takes 7.5 years from onset of symptoms to get a diagnosis.
- Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
- The cause of endometriosis is unknown and there is no definite cure.
Receiving a diagnosis
In 2011, a diagnosis survey by Endometriosis UK found that, on average, it takes 7.5 years from onset of symptoms to receive a diagnosis.
In the documentary “Endo What?” it takes eight doctors over 10 years for a woman to be diagnosed.
My diagnosis took over a decade too, even though I saw practically every GP in my local medical practice and my symptoms were severe enough to render me unconscious – what’s a girl got to do!
…And the kicker was, a specialist endometriosis centre was set up in a hospital just 30 miles from where I lived. Yet it took years for me to access it.
The trials and tribulations of receiving a diagnosis are shared by many women.
Since endometriosis is associated with the monthly cycle, it is often brushed off by GP’s as “just period pain” with no further investigation.
In other instances, it is misdiagnosed – often as IBS (irritable bowel syndrome).
Yet without knowing what you’re dealing with, how can you begin to deal with it?
A diagnosis is the first step.
If you’re having a hard time getting your GP to understand you, ask them for a referral to an endometriosis specialist, if there is one in your area (Google what’s available before your appointment so you can be in the know), or at least to a gynaecologist. As GPs are being put under increasing pressure to refrain from making referrals (The NHS is rolling out a scheme that requires all family doctors in England to seek approval from a medical panel for all non-urgent hospital referrals) this may be met with resistance. Don’t be put off, list each your symptoms and the impact they are having on your life and persist.
If the gynaecologist doesn’t give you the time of day, ask to see a different one for a second opinion. Don’t stick with a doctor who patronises you or minimises your symptoms. There are plenty of good doctors out there so don’t settle.
Diagnosis can include a pelvic exam and ultrasound as a start, but the only definitive diagnosis is through a laparoscopy. This keyhole surgery is carried out under general anaesthetic and gives the surgeon a clear look into the pelvic region.
You can usually go home on the same day, or stay the night and go home the next morning (you will need someone to drive you home and stay with you for the first night). As the incisions are tiny, I had thought I’d be off climbing by the weekend. Not so, it will take a couple weeks to recover.
While the are inherent risks with surgery, a laparoscopy is about as minimally invasive as you can get and I feel very thankful to have been given the opportunity to have mine done.
Stages of endometriosis
Endometriosis is classified with four stages:
Different factors determine the stage of the disorder. These factors can include the location, number, size, and depth of endometrial implants.
Stage 1: Minimal
In minimal endometriosis, there are small lesions or wounds and shallow endometrial implants on your ovary. There may also be inflammation in or around your pelvic cavity.
Stage 2: Mild
Mild endometriosis involves light lesions and shallow implants on an ovary and the pelvic lining.
Stage 3: Moderate
Moderate endometriosis involves deep implants on your ovary and pelvic lining. There can also be more lesions.
Stage 4: Severe
The most severe stage of endometriosis involves deep implants on your pelvic lining and ovaries. There may also be lesions on your fallopian tubes and bowels.
Myth 1: Severe period pain is normal.
Too many women are crippled by severe period pain every month and it’s not normal. Pain is not a happening for the sake of it, it’s your body’s way of alerting you to a problem.
Myth 2: Endometriosis equals infertility.
Endometriosis may put you in the category more likely to have fertility complications, however, it does not automatically mean you are infertile.
Early diagnosis can help you manage your fertility, so it’s important to get diagnosed if you think you have endometriosis and are worried about fertility.
Myth 3: You’re too young and/or fit & healthy to have endometriosis.
I was told by doctors, as well as nurses who carried out tests, that I was too young, fit and healthy to have anything wrong with me – until I finally clawed my way to a diagnosis. Being young or physically active doesn’t exclude you from endometriosis.
Myth 4: Medical treatments cure endometriosis.
- Surgically removing endometrial-like tissue does not mean the endometriosis is gone. As with the lining of the womb, it grows back.
- Painkillers work by masking the symptoms rather than addressing the root cause.
- Hormonal treatments similarly suppress the symptoms, and like every drug, have a side effect and can result in further imbalances.
- A hysterectomy may remove the uterus and associated period issues, but as endometriosis is ectopic – growing outside of where it should – does not prevent or cure endometriosis.
What we know about endometriosis
While there is much to discover about endometriosis, there
- Immune dysfunction
- Chronic inflammation
- Hormone imbalance
I find it helpful to look at endometriosis from a physiological
…If endometriosis is rooted in immune dysfunction, is there anything that is contributing towards this dysfunction (a gut imbalance, history of antibiotics, post-viral fatigue, fungal infections, candida, food intolerances…)?
…If endometriosis is inflammatory and my body is in a state of chronic inflammation, how can I reduce or eliminate inflammation?
…If endometriosis is oestrogen-dependant for its survival, how can I remove excess oestrogen and rebalance my hormones?
The 3 Factors that Influence Endometriosis (coming soon)
Prognosis – so you have endometriosis, now what?
Whether the body can resolve endometriosis is yet to be seen, though it can certainly be managed.
How you do that is up to you.
I chose the natural or holistic approach, as this made the most sense to me.
My aim was to:
- Strengthen my immune system so that my body becomes more resilient and better equipped to handle whatever comes its way.
- Reduce, if not eliminate, chronic inflammation so that I can improve my overall health and wellbeing and so that my efforts can hit their mark.
- Balance my hormones to help prevent the spread of the endometrial-like tissue.
By the time I received my diagnosis, I already had my symptoms under control through natural means, however, the diagnosis gave me confirmation of what I was dealing with and so I could approach it as endometriosis (not just period pain on steroids).
- An anti-inflammatory diet (see The Endo Diet Explained)
- Hardcore relaxation – switching the body over from predominately running on the sympathetic nervous system (SNS) aka “fight or flight” mode to the parasympathetic nervous system (PSN) aka “rest and digest” mode.
- Herbal remedies to support the immune system, relax the body and restore hormonal balance.
- Pain-relief techniques such as
- Movement, such as yoga, to help you connect and communicate with your body and improve flow.
Whether you have been diagnosed or not, the natural methods listed support your body as a whole, so they’re a good place to start.