Endo and Adeno
Endometriosis is a systemic disease that affects the metabolism in the Liver and Adipose tissue which leads to systemic inflammation which in turn alters gene expression in the brain and causes pain sensitisation and mood disorders.
The Symptoms of Endo
An estimated 176 million worldwide people have endometriosis (Endo). This number is thought to be increasing as awareness increases, this may be because we know more about the condition and more people are being diagnosed correctly. At present, it is often thought of as a disease that primarily affects people of reproductive age but there is increasing literature that points to endometriosis affecting people before menarche and after menopause.
The pathogenesis of endo is still unclear (1), and treatment is inadequate, often ending in putting a woman in chemical menopause using chemotherapy drugs or hysterectomy. Neither of which cure the condition and individuals often require ongoing care. Surgical and medical therapies that are available to people with Endo can be effective, however, there is a recurrence of symptoms at a rate of 20-50%, but this varies greatly between studies (2).
Medical gaslighting is a real problem in the Endo community.
On top of the confusing “typing”, there is the complication that the pain felt by a woman is not necessarily comparable to the severity or phenotype of the patient, making Endo a complicated and complex condition to treat.
Furthermore, it suggests that pain felt by patients may have an association with psychosocial factors (6). The inability to successfully identify the aetiology of Endo and its associated pain is the obstruction that prevents the design and provision of effective treatment for patients with Endo (7).
Without effective treatment and intervention Endo will affect all aspects of a patient’s life, with growing evidence showing that it can be present both before menarche, as well as after menopause. Indeed, a study found endometrial tissue outside of the uterus in post-mortem foetuses (8).
Endo is a hormone-dependent disease, where stem cells are dysfunctional due to progesterone resistance which causes disruption to endometrial homeostasis (9). This then disrupts the bi-directional communication between stem-cell signalling pathways that are affected by local inflammation which forms an inflammation-hormonal loop that is dysregulated (10). This shows that endometriosis is also an inflammatory disease and needs to be treated as such (11).
The current standard of care is to treat Endo with combined oral contraceptives, progestins, or short-term treatment with gonadotropin-releasing hormone (GnRH) agonists. This approach is not taking the inflammatory side of Endo into account and patients with the disease are not being treated efficiently or effectively (6). Many studies have found that there is no strong data that suggests hormone therapy to treat Endo-related pain works sufficiently, and many patients who are on hormone therapy report higher intensity and frequency of pain when compared to patients that are not (12).
The risk of Endo has been linked to Ethnicity with many studies reporting that Asian women are at a 9x higher risk of being diagnosed than those of white European ethnicity.
Endo has a variety of co-morbidities and up to 20% of women with Endo also suffer with irritable bowel syndrome (IBS), interstitial cystitis (IC) and migraines (8).
- It has been suggested that to receive appropriate care there is a need for accredited centres of excellence whose main goal is to reduce diagnosis time (currently on average 7.5 years), cost of Endo on the UK economy (currently £8.2bn a year), and time from being diagnosed with Endo to being referred to individualised specialist care (13). However, as of 2018, there are only 63 British Society for Gynaecological Endoscopy (BSGE) accredited Endometriosis Centres in the UK (14).
- The socioeconomic burden of the disease in the UK is estimated to be in excess of £8.2 billion per year (15).
- More than 75% of women have reported being absent from work due to endometriosis, on average 5.3 days out of the month, as well as 40% of women becoming unemployed due to the disease (4).
- 46% of patients with endometriosis need to have appointments with upward of five doctors to gain a correct diagnosis (Bach et al., 2016). Despite the prevalence rates of endometriosis being so high, there is very little research and funding to undertake large high-quality studies into the care and lived experiences of patients with endometriosis.
- In 2016, the National Health and Medical Research Council allocated £669,025 to endometriosis research, with diabetes being allocated £51.2 million (17), despite endometriosis having very similar prevalence rates to diabetes. 82% of women are unable to carry out day-to-day activities due to symptoms associated with endo.
- 95% of people with Endo said that symptoms impacted their well-being negatively.
- 90% said they would like access to psychological services.
- There are very few studies involving comparisons between different subgroups of the Endo community including different ethnicities, social statuses, and genders.
*Reports published by the World Health Organization, the British Mental Health Foundation and the British Department of Health and Social Care.
There is a severe lack of high-quality studies, or published evidence regarding Endo and the pain associated with the disease. There is also the problem of measuring pain as severity, generality and importance of pain is subjective and varies from patient to patient (18).
What is Adenomyosis?
Adenomyosis can be defined as a condition whereby the endometrium (lining of the womb) infiltrates the myometrium (muscle of the womb). The condition is neither an infection or contagious and as many as 10% – 70% of people with uteruses that are of reproductive age, have Adenomyosis. The exact number is difficult to determine as it often goes undiagnosed with a third of those with Adenomyosis experiencing little to no symptoms at all. For those who have been diagnosed with the disease, symptoms and their severity, vary enormously.
Although Adenomyosis was thought to predominantly affect those in their 40s and 50s, there is no lower age limit for diagnosis with more and more people being diagnosed in their 20s and 30s.
Other symptoms include pain during and after sex, bloating, dragging sensations in legs and groin, back pain and pain when having bowels open.
Adenomyosis, despite being a non–life threatening condition, can impact a person’s general and mental well-being. Although it does not decrease your chances of falling pregnant, the risk of miscarriage and premature birth is increased in Adenomyosis patients.
Diagnosis can sometimes be sought through Vaginal ultrasound scans or MRI however, a definitive diagnosis is made through hysterectomy and subsequent examination of the tissue.