Endometriosis
Endometriosis - about the disease, causes and symptoms
What is endometriosis?
Endometriosis is not simply a ‘menstrual disease’ – it is a disease that can affect the entire body.
It occurs when tissue similar to the inner lining of the uterus, the endometrium, mistakenly migrates and implants in areas outside the uterus, mainly in the pelvic area around the uterus, ovaries and fallopian tubes. These implants react to the monthly fluctuations of hormones (oestrogen and progesterone) during the menstrual cycle. During this cycle, oestrogen can cause this tissue to grow, often causing severe pain. These implants are endometriosis.
Endometriosis is associated with immune and hormonal disorders. As endometriosis grows, it causes inflammation, which can lead to adhesions, scarring, internal bleeding, bowel or urinary dysfunction, constipation, painful intercourse or infertility. The physical pain can be severe, which can lead to psychological distress. It is a combination that can have a devastating effect on the life of a woman in many ways.
According to WHO estimates, endometriosis affects around 10% of the female population worldwide (approx. 200 million). The cause of the disease is unknown and there is no cure, although it can be treated. Due to a lack of education about endometriosis, pain or other symptoms are often classified as ‘part of being a woman’ or misdiagnosed. This often results in a delay in receiving a proper diagnosis of endometriosis. On average, it takes 8-10 years or even more for a correct diagnosis.
Some women with endometriosis have no symptoms at all. A surgeon may accidentally detect the disease during another operation, such as a tubal ligation. If inactive endometriosis is detected, the likelihood of future problems is less than 10%. However, long-term monitoring will be necessary, which may include ultrasound or MRI scans and imaging.
Where can endometriosis be found?
Endometriosis generally occurs in the pelvic cavity. It can attach to any part of the female reproductive organs, including on, behind or around the uterus, fallopian tubes, ovaries (often forming cysts, referred to as endometrioma or ‘chocolate cysts’), utero-sacral ligaments or peritoneum (lining of the pelvis and abdomen). Endometriosis can also occur in the muscular wall of the uterus (adenomyosis). It can also affect the intestines, bladder, intestines, appendix, rectum or nerves in the legs or settle in the spaces between the bladder, rectum, uterus or vagina. In rare cases, endometriosis can spread beyond the pelvic area to the kidneys, lungs, diaphragm or brain.
At what age does endometriosis affect women?
Endometriosis can affect a woman even before her first period. For some women, this can even be at school age. Many women with endometriosis experience symptoms that worsen during high school and college. Most will experience the most severe symptoms between the ages of 20 and 35.
How does endometriosis affect the patient's life?
Endometriosis can have a very negative impact on all aspects of life:
in young girls, it can interfere with school attendance and participation in sports or other extracurricular activities, as well as social life.
it can change career choices and even force the patient to give up a professional career.
It can affect finances when the illness interferes with work and when the patient struggles to get a proper diagnosis or treatment, paying for visits to various specialists and for specialised endometriosis removal operations (in Poland, it is extremely difficult to find a good endometriosis specialist on the National Health Fund).
It can affect relationships with partners, friends or family members who do not understand the disease and its effects. The disease can cause pain during intercourse and can also lead to infertility.
It can lower self-esteem and cause depression. Due to the low level of awareness of this disease, many people, including some doctors and other healthcare professionals, consider a woman’s pain to be ‘normal’ or claim that it is all in her head, that she is hysterical or that she is making herself sick. They often say that ‘you’re just beautiful’ or that ‘menstruation hurts and that’s normal’, as well as statements like ‘you’re exaggerating, it can’t be that painful’.
What are the causes of endometriosis?
The exact cause of endometriosis is unknown, but it is hormone-dependent. This means that, just as the endometrium reacts to hormonal changes that cause menstruation, endometrial-like tissue outside the uterus also bleeds. This bleeding can cause pain, inflammation and scarring, and can also damage the pelvic organs.
There are many theories regarding the causes of endometriosis, but no proven causes can adequately explain every aspect of the disease. Some of the proposed theories and beliefs regarding endometriosis are outlined below:
Retrograde menstruation is one possibility that can cause endometriosis. It was first suggested by Dr John Sampson. Reversed menstruation occurs when endometrial tissue inside the uterus, which should be removed from the body during menstruation, instead flows back into the body through the normally open fallopian tubes, allowing the tissue to implant in the organs. Although 90 percent of women experience retrograde menstruation, only one in ten is diagnosed with symptomatic endometriosis. It is possible that the immune and lymphatic systems protect most women. Further research is needed to determine why retrograde menstruation affects women in such different ways.
The Müllerian remnant theory suggests that precursors of endometriosis may be present during foetal development. They remain dormant until they are activated and develop into endometriosis during puberty, when oestrogen levels in the body increase and menstruation begins.
Coelomic metaplasia and stem cell transition are theories that suggest that cells other than Müller cells can differentiate into endometriosis. Coelomic cells include the peritoneum. Bone marrow stem cells can help repair many types of tissue.
Endometriosis is probably genetic. Girls with close relatives who have had endometriosis are three to seven times more likely to develop the disease. However, further research is needed to fully understand the genetic characteristics of endometriosis.
A weakened or malfunctioning immune and lymphatic system and the body’s inflammatory response also contribute to endometriosis, although these mechanisms are poorly understood.
Recent research emphasises the importance of oxidative stress, defined as an imbalance between reactive oxygen species and antioxidants, causing a generalised inflammatory reaction in the peritoneum. There is also talk of microbiome disorders as a potential source of endometriosis. Environmental pollution (air, water, food, harmful chemical compounds that are omnipresent in our lives, e.g. in cosmetics) is also emphasised as a factor that contributes to the development of inflammatory lesions in the body.
Important information: Endometriosis is not contagious and cannot be transmitted from person to person through contact.
What are the symptoms of endometriosis?
The symptoms of endometriosis include:
- abnormal, irregular periods
- painful periods
- heavy menstrual bleeding
- severe PMS
- spotting and bleeding during the cycle
- painful intercourse
- gastrointestinal disorders
- constipation
- bloating (so-called endobelly)
- nausea
- painful bowel movements
- painful and/or frequent urination
- chronic back pain
- abdominal pain
- pelvic pain not related to menstruation
- joint pain
- neuralgia
- infertility or problems getting pregnant
- migraine
- prolonged fatigue
- depression
- anxiety
- brain fog
- insomnia
Endometriosis can cause pain that occurs regularly, worsening before and during menstruation. Some women feel pain all the time, but for others it can come and go. The pain may subside during pregnancy, and sometimes it can disappear without any treatment.
Here you can download a self-monitoring chart to help you keep track of your symptoms.
This will help you determine exactly what you are experiencing during your cycle, when you experience it and to what extent, which will make it easier for your doctor to make a diagnosis.
Endometriosis - Diagnosis
How can endometriosis be diagnosed?
Endometriosis is a difficult disease to diagnose. This is because:
- the symptoms of endometriosis vary greatly
- the symptoms are common and can resemble pain and other ailments caused by other conditions, such as irritable bowel syndrome (IBS) or pelvic inflammatory disease;
- different women have different symptoms
- some women have no symptoms at all.
Endometriosis is correctly diagnosed according to the following scheme:
- physical examination – history of symptoms and reported ailments, patient’s medical history and diseases occurring in relatives,
- physical examination – in the case of gynaecological consultation, assessment of the vulvar area,
- transvaginal examination with a speculum, in which suspicious changes on the cervix, vaginal walls and vaginal vault can be detected, and transvaginal palpation, during which the mobility of the uterus and ovaries, tenderness or pain of the pelvic organs and the presence of pathological resistance in the pelvic organs are assessed,
- Additional examinations, the most basic of which in gynaecology is transvaginal ultrasound.
How to confirm pelvic endometriosis?
The way to confirm pelvic endometriosis is to undergo diagnostic laparoscopy with pathological examination of biopsy samples. A small incision is made in the patient’s abdomen and tissue samples are removed and sent to a laboratory to be viewed under a microscope to confirm whether it is endometriosis.
Source: https://en.wikiversity.org
Imaging tests are helpful in diagnosis, but not always conclusive. Clear evidence of endometriosis in any form is not visible on computerised tomography (CT), magnetic resonance imaging (MRI) or ultrasound. Imaging tests, pelvic examinations and recto-vaginal examinations can indicate suspected ovarian endometriosis and deep endometriosis. Based on these, experienced specialists can confirm the presence of endometriosis, taking into account all the symptoms reported by the patient. It is common practice to perform a pelvic ultrasound and MRI before undergoing laparoscopic surgery for endometriosis, as they can help plan the surgical approach.
The Ca 125 marker test is not recommended for diagnosing endometriosis. It is not very specific and many other factors can influence the result. It is mainly used to monitor the treatment of ovarian cancer.
Various markers have been developed or are currently being researched (microRNA in saliva and blood, FUT4 in the endometrium), but their sensitivity and specificity need to be confirmed in a larger number of patients. Currently, the use of these tests is not recommended. They are only used in patients with symptoms suggestive of endometriosis and negative imaging results, and in cases of suspected peritoneal localisation.
The biggest problem is that it takes up to 8–10 years from the onset of symptoms to receive an accurate diagnosis of endometriosis in Poland. This is due to a lack of knowledge among the general public, which also translates into the awareness of medical personnel. In addition, we still have very few doctors specialised in endometriosis diagnostics. Therefore, unfortunately, many patients with endometriosis are misdiagnosed, often repeatedly, which leads to
unnecessary and inappropriate treatment.
What are the most common mistakes in the diagnosis of endometriosis?
There are two main reasons for misdiagnosis in women suffering from endometriosis: doctors’ lack of knowledge about endometriosis due to a lack of targeted education in medical schools and because the symptoms of endometriosis can be similar to those of more common diseases or conditions. Some of the misdiagnoses made to women are:
- irritable bowel syndrome (IBS),
- appendicitis,
- ovarian cancer,
- colon cancer,
- pelvic inflammatory disease,
- uterine fibroids,
- diverticulitis,
- ovarian cysts,
- sexually transmitted diseases.
Interestingly, many women are also told that the pain they feel is psychological – that there is something in their mind that does not physically exist. Instead of treating the physical symptoms, doctors sometimes refer them to a psychotherapist or psychiatrist.
Endometriosis treatment
Is endometriosis curable and what is the goal of treatment?
Endometriosis is a chronic and, as yet, incurable disease. The aim of endometriosis treatment is to slow down the progression of the disease, minimise symptoms and, in some cases, improve fertility.
What are the treatment options for endometriosis?
- A holistic treatment approach involving diet, physiotherapy and psychotherapy should be tried first.
- If this does not bring about sufficient improvement, drug therapy with non-steroidal anti-inflammatory drugs and hormone therapy should be considered. The choice of medication depends on the individual effectiveness for the patient, the side effects, the costs and the patient’s preferences. Medication cannot remove existing changes (adhesions, cysts, tumours, superficial and deep endometriosis).
The following groups of medication are used in therapy:
- non-steroidal anti-inflammatory drugs (NSAIDs)
- combined oral contraceptives (COCs)
- progestogens
- antiprogestogens
- GnRH agonists
- GnRH antagonists
- aromatase inhibitors
- levonorgestrel-releasing intrauterine systems
- danazol.
- The gold standard for treating deep endometriosis is a minimally invasive laparoscopic excision surgery, also known as the ‘keyhole’ procedure. This is a highly specialised operation:
a deep excision is performed during the laparoscopic excision surgery. The surgeon carefully cuts out or removes the entire lesion from any location. This also includes the tissue located below the surface. Deep endometriosis is like an iceberg – despite the disease being identified above the tissue surface, most of it is implanted in the tissue below the surface. This is why it is so important to find a surgeon who will remove the lesions in their entirety.
Cold excision: The ideal solution is to perform the operation with minimal use of heat and electricity. Surgeons often use techniques such as ablation (lasers that destroy the disease) or cauterisation (burning out the disease) to ‘burn and destroy’ endometriosis lesions. However, this increases the risk of not completely removing deep endometriosis lesions and risks damaging the surrounding healthy tissue. This does not mean that lasers and high-energy devices cannot be used during surgery, as they can often be helpful in coagulation (stopping bleeding). However, they should not be used to remove lesions.
- Other forms of surgery: Ablation and cauterisation only remove tissue on the surface, as in the case of superficial endometriosis, but ignore tissue growing beneath the surface. In many cases, ablation or cauterisation will not be effective in the long-term treatment of deep endometriosis. Excess scar tissue can also form with these methods due to the high energy and heat applied to the surrounding healthy tissue. In some cases, inflammation after ablation and cauterisation can be another source of pain. For this reason, excisional surgery is the gold standard of treatment. If you are considering surgery, you must ask your surgeon about the method of removing endometriosis.
- Hysterectomy: It is a common myth that a hysterectomy will cure endometriosis. There is no cure for endometriosis, and a hysterectomy is rarely the best treatment. Most endometriosis is located in areas other than the reproductive organs. If the uterus is simply removed and the remaining lesions in other organs are not treated, the patient will continue to experience pain. Decisions regarding hysterectomy should be made with a doctor experienced in the treatment of endometriosis and should only be performed with the patient’s consent. Although hysterectomy does not cure endometriosis, some women with endometriosis also have adenomyosis. A hysterectomy can cure adenomyosis and, if it is the main cause of the problem, can bring significant relief.
There is no cure for endometriosis. It is also not true that pregnancy cures endometriosis – it is only true that the symptoms usually decrease during pregnancy due to the increased amount of progesterone in the body.
There is no cure for endometriosis. It is also not true that pregnancy cures endometriosis – it is only true that the symptoms usually decrease during pregnancy due to the increased amount of progesterone in the body.
How to deal with the symptoms?
There are many ways to alleviate the symptoms of endometriosis, in addition to pharmacological measures:
- an anti-inflammatory diet
- anti-inflammatory supplements
- urogynaecological physiotherapy
- exercise (yoga, Pilates, slow jogging, or other forms of exercise tailored to the physical abilities of the patient)
- acupuncture
- mindfulness (meditation and relaxation techniques)
- psychotherapy
- changing lifestyle to be more environmentally friendly and in line with the circadian rhythm.
Although all of the above options can alleviate the symptoms, each patient will benefit differently from their use. What may work for one woman may not work for another. Each patient must trust her own judgement, cooperate with her doctor and find the best pain management strategy for her. In case of very severe pain, it may be necessary to see a pain specialist (here you can find a recommended pain specialist).
On our website, you can find out about the various methods of alleviating endometriosis symptoms. We will be expanding your knowledge here, not only about the medical aspects, but also about the complementary therapies that have brought relief and helped many women in their fight against endometriosis.
