Endometriosis has now reached an all time high in its ever-growing presence. This disease is often debilitating both physical and emotionally. Many women diagnosed with Irritable Bowel Syndrome actually have endometriosis and not IBS. It can also play major havoc with the emotions, hormones and the libido.
Meanwhile women with period pain caused by endometriosis have to live a life of pain, trauma and physical and emotional torment. Many of these women are barely getting through a day, let alone a whole month of exhausting symptoms related to this disease. Some are even at the point of suicide.
Women who suffer period pain and other menstrual related symptoms caused by endometriosis are often ‘missed’ and ‘dismissed’ by multiple healthcare professionals and it can take up to 12 years from onset of symptoms to a definitive diagnosis is made.
What is Endometriosis
Endometriosis, which is an inflammatory gynaecological disease, by which endometrial like tissue grows outside the endometrium and affects 1 in 10 women. It can spread outside the endometrium into the pelvis, bowel and intestines. It has even been known to get into the brain, joints and around the heart.
According to the Royal College of Obstetricians and Gynaecologist Guidelines for the Management of Endometriosis, it can cause the following symptoms:
- Heavy Menstrual Bleeding
- Period Pain
- Pain with sex
- Ovulation Pain
- Irritable bowel like symptoms
- Bladder issues
- Chronic fatigue
But while the current research says that 1 in 10 women are affected by endometriosis, as an endometriosis expert, I believe, as do many other, that these figures may be grossly under exaggerated.
Research also tells use that a significant portion of women affected with endometriosis are asymptomatic (no symptoms) and may only ever get diagnosed if they are having issues with having a baby, or they may never be diagnosed at all.
Definition of Endometriosis
Endometriosis, defined as the presence of tissue histologically similar to endometrium at sites outside the uterine cavity, is one of the commonest benign gynaecological conditions to affect women of reproductive age.That is, it is a disease that occurs primarily in menstruating women.
It is a chronic and recurrent disease causing pelvic pain and infertility. Although not life-threatening, once symptomatic, endometriosis can have an extremely debilitating effect on the quality of life for many women and is often frustrating to manage for both the patient and practitioner.
Endometriosis induces a chronic inflammatory reaction. The condition is predominantly found in women of reproductive age from all ethnic and social groups.
The associated symptoms can impact on general physical, mental and social wellbeing.
It is therefore vital to take careful note of the woman’s complaints and to give her time to express her concerns and anxieties, as with other chronic diseases. However, women may have no symptoms at all. Finding endometriosis in some women, therefore, may be coincidental.
Treatment must be individualised taking the clinical problem in its entirety into account including the impact of the disease and the effect of its treatment on quality of life.Pain symptoms may persist despite seemingly adequate medical and/or surgical treatment of the disease.
This may suggest another source of pain, such as the uterus (adenomyosis), bladder (interstitial cystitis) or musculoskeletal causes (pelvic floor muscle spasm). In such circumstances, the appropriate therapy or a multidisciplinary approach involving a pain clinic and counselling should be considered.
This is based upon the following observations:
- Retrograde menstruation through the fallopian tubes is almost a universal event in menstruating women.
- Endometriosis is most commonly seen in the dependent areas of the pelvis, especially the Pouch of Douglas, uterosacral ligaments, posterior broad ligament and the ovary.
- There is a higher incidence of endometriosis in women who have an obstructed outflow to the menstrual effluent.
- Injection of menstrual endometrium into the peritoneum of baboons caused peritoneal endometriosis. This suggests that other factors probably determine the susceptibility of an individual to implantation and growth of this tissue. These include genetic susceptibility, alterations in menstrual effluent and differences in the peritoneal environment or changes in immunological tolerance.
- The predictive value of any one symptom or set of symptoms remains uncertain as each of these symptoms can have other causes and a significant proportion of affected women are asymptomatic. As a result, there is often a delay of up to 12 years between symptom onset and a definitive diagnosis. Endometriosis typically appears as:
Appearance of Endometriosis
- Establishing the diagnosis of endometriosis on the basis of symptoms alone can be difficult because the presentation is so variable and there is considerable overlap with other conditions such as irritable bowel syndrome and pelvic inflammatory disease.
- Environmental estrogens, obestrogens (estrogens from abdominal fat) and insulin resistance are now being shown to be a major factor in the development of endometriosis too. Endometriosis is estrogen driven and does not comes from estrogen dominance.
- However, retrograde menstruation is found in approximately 90% of women undergoing laparoscopy, yet an estimated 10-35% develops endometriosis.
- Superficial ‘powder-burn’ or ‘gunshot’ lesions on the ovaries, black, dark-brown or bluish puckered lesions, nodules or small cysts containing old haemorrhage surrounded by a variable extent of fibrosis.
- Atypical or ‘subtle’ lesions are also common, including red implants (petechial, vesicular, polypoid, hemorrhagic, red flame-like) and serous or clear vesicles.
- Other appearances include white plaques or scarring and yellow-brown peritoneal discoloration of the peritoneum. Based on clinical and patient experience, endometriosis can cause the following symptoms:
Symptoms typically associated with endometriosis
- Severe dysmenorrhoea
- Deep dyspareunia (pain with sex)
- Chronic pelvic pain
- Ovulation pain
- Cyclical or perimenstrual symptoms, such as bowel or bladder, with or without abnormal bleeding, or Pain
- Chronic fatigue
- Dyschezia (pain on defecation)
- Dark and clotted menstrual blood (key symptom)
- Menstrual pain
- Irritable Bowel like Symptoms
- Constipation, Alternating bowel movements
- Emotional Disturbances
- Digestive Issues
- Bloated and pregnant looking belly (known as endo belly)
When in the menstrual cycle is clinical examination most reliable for diagnostic purposes?
- Deeply infiltrating nodules are most reliably detected when clinical examination is performed during menstruation.
- Finding pelvic tenderness, a fixed, retroverted uterus, tender uterosacral ligaments or enlarged ovaries on examination is suggestive of endometriosis.
- The findings may, however, be normal.
Drug therapy is intended for pain relief and hormone suppression.
- NSAIDs: prescribed for their anti-inflammatory and analgesic effects.
- SSRI’s- Antidepressants are used for some forms of pain and may also assist where there are emotional issues exacerbating pain pathologies.
- Oral contraceptives: prescribed to control hormones. Suppress FSH and LH and endogenous oestrogen production. Women with endometriosis should only have progesterone only options. Combined oral contraceptives contain estrogen and endometriosis is estrogen driven so these shoudl be avoided in favour of progesterone only options ( Progesterone only pill, Mirena, Implanon etc). Any woman with migraines, cannot have a COP, with estrogen in it, as they are contraindicated.
- Danazol (synthetic 3-isoxazole derivative of 17-ethinyl-testosterone): most frequent choice for hormone suppression; reduces size/extent of lesions with 80% to 90% symptom relief and 20% to 35% recurrence rate after treatment cessation (unsafe for developing foetus; common side effects synonymous with menopause).
- Gonadotropin-releasing hormone agonist (GnRHa): induces amenorrhoea (loss of bonemineral precludes long-term therapy). E.g., Nafarelin (Synarel), leuprolide (Lucrin), andGoserelin acetate implant (Zoladex).
- Laparoscopic excision : Must be done by and advanced trained laparoscopic surgeon who has had extra training and specialised in the the excision of endometriosis. Cant be done by just any gynaecologist. Laparoscopy is needed for the definitive diagnosis of endometriosis and for removal of lesions, excision of endometriosis and ovarian endometriomas, and lysis of adhesions (10% to 50% recurrence rate within 12months).
- Hysterectomy &/or salpingo-oophorectomy: Hysterectomy does not cure endometriosis as most endometriosis is outside the uterus. It is only affective for stopping symptoms associated with the menses such as pain with menstrual flow and heavy bleeding etc. Endometriosis will still be present and it’s other associated symptoms ( bowel pain, digestive issues, IBS like symptoms, pelvic pain etc) after hysterectomy and this needs to be explained to the patients.
What is the ‘gold standard’ diagnostic test?
For a definitive diagnosis of endometriosis, visual inspection of the pelvis at laparoscopy is the gold standard investigation, unless disease is visible in the posterior vaginal fornix or elsewhere. Scans will not pick up endometriosis. There are now some highly specialised scans that will pick up ‘Deep Infiltrating Endometriosis’ but even then this requires a specialised technician to do so. These scans will not pick up the superficial endometriosis, which is the most common form of endometriosis found. Only a laparoscopy and histology is the definitive diagnosis for endometriosis. Please be careful in thinking scans and blood tests may confirm, or diagnose endometriosis, because they will not. Major causative factors and risk factors that can contribute to the incidence of endometriosis include the following:
Aetiology / Risk factors
- Obesity, and associated insulin resistance, may contribute to endometriosis.
- Elevated oestrogen levels or oestrogen activity is suspected of causing endometriosis.
- Immunological dysregulation: i.e., inflammation, increased macrophage, prostaglandin, and lymphokine action; decreased T- and NK-cell responsiveness.
- Studies indicate that TCDD (dioxin) and formaldehyde (environmental toxicants), alter the action of oestrogen in reproductive organs and increase the incidence of endometriosis.
- Retrograde (or reflux) menstruation can be due to transtubal dissemination of endometrial cells into pelvic cavity related to anatomical defects and/or lymphatic and vascular transportation to remote areas.
- Genetic predisposition (daughters of mothers having the disorder).
Diet and Lifestyle
Dietary and lifestyle guidelines may assist in the management of endometriosis:
- Endometriosis is considered to be an oestrogen-driven condition. Ensuring the processes of oestrogen detoxification are optimal through consumption of indole-3-carbinol containing foods
- Obesity, and associated insulin resistance, may contribute to endometriosis. A ketogenic fat loss diet/Paleo/Primal/Insulin Lowering diet, may help to improve insulin sensitivity, correct blood glucose levels, reduce adipose tissue and spare skeletal protein reserves. Fat reduction decreases the peripheral conversion of androgen to oestrone which contributes to endometrial hyperplasia. (See PACE Diet and Lifestyle Program)
- Women who are of normal weight, or who may be underweight may also have endometriosis. It is important to screen for eating disorders and ensure women have adequate body fat to help with production of hormones.
- Eliminate all known food allergens. The most common allergens are wheat and soy
- Eliminate alcohol, reduce caffeine, chocolate, refined foods, food additives, sugars etc
- Avoid foods that are known to be estrogenic (soy)
- Increase intake protein, fresh vegetables, essential fatty acids (cold-water fish, nuts, and seeds), and vegetable proteins, lower GI fruits, adequate water intake and electrolytes.
- Stress and emotional issues has a profound influence on female hormones and the menstrual cycle, which may manifest in pathologies, such as endometriosis. It is important to use questionnaires such as DASS to assess mood disorders, stress and anxiety in all women with gynaecological conditions. Treatment strategies need to incorporate dietary and lifestyle advice alongside herbal and nutritional recommendations designed to support hormonal balance and emotional wellbeing.
In my opinion the best course of action is to use a combined approach. For severe cases you will need to see a good advanced laparoscopic surgeon to get as much of the endometriosis excised (cut out, not lasered). Surgery is a much needed option is the pain is severe because it helps get rid of the endometriosis that can be seen. It doesn’t get the microscopic endometriosis that can’t be seen and this is why endometriosis is likely to occur again.
This is where the Chinese Medicine may help, especially in helping pain, stress and other symptoms. This may assist after surgery and may help in combination with medical interventions. This can also be done along side medical hormone treatments to assist in the overall treatment and management of the disease.
Lastly, see a good counsellor/psychologist. Acupuncture and Chinese medicine may assist in helping both the physical & emotional symptoms (pain and stress), but solution-based therapy is needed for best results. Talking about how endometriosis affects your life, or seeking help for the emotions that arise from endometriosis, or the pain you suffer, will help you in the overall management of endometriosis. Seeing someone to help you with mindfulness training can also assist and should be considering as well.
So, the solution to endometriosis is really Surgery, with the assistance of Acupuncture, Chinese medicine , Counselling, Mindfulness and diet and lifestyle management. It is about a multimodality “team” approach that is going assist you to give you the best results possible. Surgery is a very much-needed process if the problem is either too acute or chronic, in order to alleviate and remove painful symptoms. However, in the end it is a “team” approach, combining known therapies and lifestyle management that is needed to give women the best results possible and manage the disease properly moving forward. Treatments and management needs to be individualised as not every woman will have the same levels of pain, or the same symptoms. The Royal College of Obstetricians and Gynaecologists guidelines for treating Endometriosis now states that there are other recommended therapies outside of the medical model, which many women have stated have given them great results. It really can help, but for anything to work more effectively, you too, have to make a commitment.
So why isn’t the medical option alone working?
In conclusion, although current medical treatments are helpful for many women with endometriosis, these treatments have limitations that include side effects in some women and contraceptive action for women desiring to conceive. Endometriosis has a highly variable disease state, and thus a multi-modality approach is needed, targeting different pathways is likely to be important to move toward precision health (personalized medicine) in endometriosis. People with endometriosis need a team of people looking after them, not just one person and one approach.
I am a healthcare practitioner, with a special interest in Endometriosis, with over 20 years experience in Women’s Health Medicine and assisting in treating and managing endometriosis. I know all to well the trials and tribulations women have to go through before someone actually listens and gives these poor women a proper diagnosis “Period pain IS NOT normal” and all too often women are told that period pain is normal and nothing could be further from the truth. We need to educate women and young girls that period pain is not normal.
I have a motto of “Leaving No Stone Left Unturned” and I apply this to every patient I see with period pain and potentially suffering from endometriosis. I would like to see better education and awareness for the general public, but I would also like better education and awareness for healthcare professionals. I would like to see all healthcare professional use my motto and make sure that no woman is ever missed, or is dismissed with this horrible disease every again.
I would like to conclude with one last message “ Women need to know that period pain IS NOT normal and that early detection and early intervention and treatment is the key to treating any disease properly.
We also need to educate young girls at school and their parents that period pain is not normal and that early intervention and early treatment is what is needed to save millions of women around the world from the trauma of having to live with the horrible symptoms and consequences of leaving this disease too long.
It’s time for governments, healthcare professionals and anyone associated with women’s health, to pull their heads out their behinds, get education happening, get the facts out there, get early intervention and treatments happening, have ongoing support and management of this disease and get women the help they so desperately deserve and need.
Period Pain “IS NOT” Normal and we need to help women know this and stop them from having endometriosis (or other gynaecological issues) missed and stop women from being dismissed also.
About Dr Andrew Orr
Dr Andrew Orr has a special interest in the treatment and management of Endometriosis and is passionate about helping women get the right advice and right treatments. He lectures to both the public and other healthcare professionals about the myths and facts surrounding this disease and making sure women are diagnosed sooner and get early intervention as soon as possible.
Dr Andrew Orr’s motto is that “Period Pain IS NOT Normal” and his motto for assisting in treating women and part of his work philosophy is “Leaving No Stone Unturned”. He applies these mottos in his practice and treatment of all health and gynaecological conditions.