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Endometriosis – speaking from the heart…

Endometriosis is really bad. Period. No one can sugarcoat it. It is a disease that affects all areas of life for those affected. It usually takes ages before a diagnosis is made and until then – others or we ourselves think: is it perhaps the psyche or am I sensitive?

Even if you are currently facing challenges & struggling, do not forget: YOU ARE NOT ALONE!

Endometriosis – medical…

What is endometriosis?
Endometriosis is a chronic inflammatory disease in which tissue grows outside the uterus and often settles in the abdominal cavity, ovaries, fallopian tubes, bowel and bladder, ligaments and peritoneum. These growths react to the menstrual cycle but cannot be drained, which leads to cysts, adhesions and inflammation. This often causes severe pain and, in extreme cases, can affect organs such as the kidneys or lungs.

Symptoms and effects
Endometriosis is a chronic inflammatory disease that can severely affect everyday life and quality of life. It is typically characterized by severe menstrual pain, which is often accompanied by pain during sexual intercourse, urination and bowel movements. Those affected also report abdominal pain, bowel problems, nausea and a high level of exhaustion. Non-specific symptoms such as back pain, headaches, exhaustion and an increased susceptibility to infections contribute to the disease often being recognized late. The extent of the symptoms is not always in proportion to the size of the foci. There are women with extensive endometriosis and few symptoms, while others suffer severe pain from smaller lesions. If endometriosis remains untreated, it can infiltrate the surrounding tissue and cause severe damage. The ureters and kidneys are particularly at risk if the endometriosis constricts them. The intestines can also be affected, which in some cases necessitates surgical removal of the foci. The kidneys are particularly at risk if endometriosis lesions narrow the ureters. In rare cases, this can lead to a loss of kidney function. Foci in the colon and bladder can also cause discomfort in some patients, necessitating surgical intervention. In addition to pain, foci of endometriosis also cause inflammation and adhesions, which can lead to impaired organ function. The uterus, bladder and bowel are particularly affected. For example, the bowel can stick to the uterus, causing severe discomfort. Newly growing nerve fibers in the foci also intensify the pain. These adhesions create mechanical tension in the body and intensify the pain.

Typical/frequent complaints:
– Pain : Especially during menstruation, in the lower abdomen, back, during sexual intercourse, urination or bowel movements.
– Bowel and bladder problems: Flatulence, diarrhea or constipation, pain during bowel movements or urination and frequent pain in the bladder.
– Headaches and fatigue: many sufferers feel listless, have back pain, headaches and are more susceptible to infections.
– Cyclical bleeding outside the period: cyclical bleeding in the bowel or bladder can also indicate endometriosis.

Another key problem is that the disease can affect fertility by causing inflammation and adhesions in the abdomen. Around 40% of women with an unfulfilled desire to have children have endometriosis.

Causes and research
The exact causes of endometriosis are still unclear. Researchers suspect a combination of genetic, hormonal and immunological factors. Two hypotheses for the development of the foci are: the transplant theory, according to which the uterine lining moves backwards into the abdominal cavity and grows, and the metaplasia theory, which describes a transformation of tissue due to inflammation or immune system disorders. Environmental factors such as hormone-reactive substances could also influence the disease.

Partnership, family and heredity
There is a familial clustering of endometriosis: daughters of sufferers have an increased, but still low risk of developing the disease. Awareness of the disease within the family can help to recognize symptoms and have them treated.

Diagnosis of endometriosis
Endometriosis is a multifaceted disease with varying degrees of symptoms. This variation often leads to misdiagnoses such as ovarian inflammation, psychogenic complaints or PMS. Endometriosis is widespread: Around 10-15% of women worldwide are affected. As an illustrative example: You know 10 women – at least 1 of them is affected by endometriosis. As the symptoms and the affected areas are very individual, the disease often goes unnoticed. It currently takes an average of 7.5 years before a diagnosis is made; 3 years for those with an unfulfilled desire to have children and even up to 10 years for pain patients.

Diagnostic steps
An initial suspicion of endometriosis is usually revealed in a detailed medical history interview with an experienced gynecologist, in which symptoms and cycle progression are discussed. You can support the diagnosis by keeping a pain and symptom diary. We have also developed a preparation aid for consultations with your doctor which we make available to you.

Examination methods:
1. Medical history and palpation: An interview and palpation of the affected areas (vagina, rectum, uterine ligaments).
2. Ultrasound: Both vaginally and via the abdominal wall.
3. MRI or colonoscopy: If necessary, useful for the exact localization of deep-seated foci.
4. Laparoscopy: Surgical method for diagnosis in which tissue is removed and analyzed.

Some specialists can detect endometriosis without surgery using ultrasound or MRI, but the skill of the practitioner is crucial. A second opinion may be recommended.

Preparation tip: It helps to formulate your fears and wishes before the doctor’s appointment. Our preparation guide for doctor’s appointments is also helpful here.

Forms and classification of endometriosis
Endometriosis lesions mainly occur in the ovaries, the Douglas space or the bladder. More rare are deeper penetrating forms (TIE) in the bowel and bladder. Foci in more distant organs such as the lungs or pericardium are rare.

Classification:
The “rASRM score”, which classifies the extent of the adhesions and the affected organs into four degrees of severity, was used to assess the severity. The Enzian system extends this classification to describe the exact location and depth of the foci.

Treatment options for endometriosis
Hormonal therapy for endometriosis
Hormonal therapy for endometriosis is based on treating the foci of endometriosis, which reacts to hormonal changes. Like the lining of the uterus, endometriosis tissue is also subject to the influence of oestrogens during the monthly cycle. The aim of the therapy is to prevent the build-up and bleeding of the mucous membrane at the end of the cycle, which inhibits the activity of the endometriosis foci.
Patients react differently to hormone therapy, which is why it is not possible to make a general statement about its effectiveness. It is recommended to take a period of three to six months to assess the effectiveness of the chosen therapy. Frequent changes of preparations can have a negative impact on the success of treatment.

Progestogen
A frequently recommended option is to take progestogens, which come in the form of a ‘pill’ or an IUD. Progestogens, also known as luteal hormones, simulate pregnancy in the body, which leads to the blocking of oestrogen production. This suppresses the formation of a uterine lining so that no fertilized egg can implant.

Side effects
The use of progestogens can be associated with various side effects. The potential side effects include
– Depression
–Cyst formation on the ovaries
– Weight gain
– Sleep disorders
– Headaches and migraines
– Hair loss
– Acne
– Hot flushes
– Increased tendency to thrombosis

These side effects have been documented in studies, but do not necessarily occur in every patient. Careful consideration is advisable.

GnRH analogs and GnRH antagonists
GnRH analogs are another treatment option. These drugs inhibit the production of oestrogen and progesterone in the ovary, resulting in a hormonal state comparable to the menopause. Taking GnRH analogs can cause numerous side effects, including
– Hot flushes
– Mood swings
– Headache
– fatigue
– Loss of bone substance (osteoporosis)

Due to the risk of osteoporosis, treatment is usually limited to six months, often supplemented by so-called addback treatment with low-dose oestrogens. Unfortunately, the symptoms return in around 80 % of patients after discontinuing treatment, which is why a thorough assessment is necessary.

Side effects of hormonal therapy
Taking hormone preparations has a significant impact on the natural hormone balance and can affect fertility. Women who wish to have children should definitely take these aspects into account.

Doctors also point out an increased risk of thrombosis and embolism, especially in conjunction with the third and fourth generation contraceptive pill. It is important to discuss the pros and cons of hormonal therapy in detail in order to make an informed decision.

Pain and pain therapy

Differentiation of pain

Visceral pain
Less localizable pain, rather dull, e.g. caused by inflammation. Often accompanied by vegetative symptoms such as nausea, sweating and circulatory problems.

Somatic pain
– Increased sensitivity to pain (allodynia)
– Similar to an electric shock
– Specific localization
– Spain can be described precisely & clearly, fewer vegetative symptoms
– Dysfunction of the pelvic organs, sexual dysfunction, movement dysfunction

Neuropathic pain (also known as nerve pain or neuralgia)
Neuropathic pain is caused as a result of nerve damage or nerve irritation. It often has a high intensity of pain. It tends to occur as an attack or shooting pain and is described as burning, stabbing or dull.

Drug pain therapy
Pain medication is often used to treat pain caused by endometriosis. These alleviate the symptoms, but in most cases do not have an effect on the actual disease and can lead to dependency if they are taken regularly over long periods of time. In addition, a habituation effect can occur, which makes higher doses necessary and carries the risk of liver and kidney damage.
One helpful approach is to refer patients to pain outpatient clinics, which have interdisciplinary teams of pain therapists therapists, psychotherapists and physiotherapists. These specialists will work with you to develop individual concepts for the best possible pain reduction.

Multimodal pain therapy
Chronic pain in endometriosis can lead to increased sensitivity to pain and psychosomatic symptoms, which severely restricts the lives of those affected. Treatment with medication or surgery is often not sufficient. This is where multimodal pain therapy comes in, which represents a holistic concept and addresses your individual living conditions.
In certified pain centers, specialists from various therapy areas work together, including psychotherapy, physiotherapy, relaxation techniques and medical training therapy.

Neural therapy
Neural therapy, also known as TLA, uses local anaesthesia to relieve pain and can inhibit inflammation and promote blood circulation. It not only provides temporary relief, but can also initiate healing processes by interrupting the pain cycle. This method is particularly valuable when hormonal treatments are refused or not sufficiently effective, and there is evidence of a preventative effect against the more recent development of endometriosis.

Surgical treatment for endometriosis
In the event of severe symptoms or diagnostic doubts, a laparoscopy (laparoscopy) can be performed for reliable diagnosis and treatment. During this procedure, endometriosis lesions are removed, either by excision, cauterization or laser ablation. The experience of the surgeon plays a major role in the long-term success and avoidance of new adhesions.
Even if the removal of organs such as the uterus can be helpful in individual cases, it is usually recommended to prioritize organ preservation and comprehensive removal of the lesions, as remaining lesions can also cause further symptoms.

Laparoscopy (laparoscopy)
Laparoscopy is a method for diagnosing and treating endometriosis. The procedure is performed under general anesthesia and is minimally invasive, which means that only small scars remain. During the operation, the abdominal cavity is filled with carbon dioxide to provide a better view and more space for the treatment. Tissue samples are taken to confirm the diagnosis.
Endometriosis lesions are removed using various techniques, such as excision, coagulation or laser ablation. The duration of the operation varies depending on the extent and can take between 30 minutes and several hours. A hospital stay of one to two days is common after minor procedures.

Robot-assisted surgery
Robot-assisted surgery is becoming increasingly important. In this procedure, the surgeon uses a robotic arm to control the instruments in the abdominal cavity while viewing the surgical area in 3D on a screen. This method is particularly suitable for complex cases with adhesions or deep infiltrations in the bowel or bladder.

Other surgical methods
Depending on the severity of the endometriosis, colonoscopy and cystoscopy may also be necessary. In some cases, an abdominal incision (laparotomy) is necessary if there are extensive adhesions or unfavourable focal localization. This procedure is more invasive and involves a longer healing process.

Organ-preserving surgery
There is often a misconception that removing the uterus cures endometriosis. This is not the case, as other lesions can remain in the body and continue to cause symptoms. Organ-preserving surgery that focuses on removing the foci of endometriosis should be the priority in order to preserve the health and quality of life of the women affected.
Women should discuss the planned measures in detail with their doctor before the operation and make the decision about organ removal themselves. Comprehensive information is crucial in order to make the right choice.

Important information:
Patients should always choose individual treatment in consultation with specialized doctors in order to ensure long-term therapeutic success. It is also recommended that you carefully weigh up your own decision regarding surgical measures.

Complementary treatment options
In addition to conventional medical approaches, complementary treatment methods offer many ways to improve the quality of life with endometriosis. As this chronic disease affects all areas of life, a holistic approach – diet, exercise, stress management and alternative therapies – can help to alleviate symptoms and increase well-being. Here you will find approaches that are often used as a supplement to traditional therapy:

1. diet
A balanced diet can support digestion and the immune system and reduce symptoms. However, there is no universal diet: some prefer a plant-based or gluten-free diet, others find relief in a high-protein, low-carbohydrate diet. The general recommendations are to eat fresh, unprocessed food and avoid additives. Advice from specialists and medical clarification if intolerances are suspected are recommended. We work together with the Women’s Health Working Group of Dieticians. https://diaetologie.at/verband/arbeitskreise/arbeitskreis-frauengesundheit/

2. exercise and physiotherapy
Regular exercise can increase the pain threshold and improve general well-being. Moderate activities such as walking, cycling and swimming as well as relaxation exercises such as yoga or tai chi are recommended.
Physiotherapy can promote mobility and relieve pain. Targeted techniques such as pelvic floor, breathing and manual therapy as well as connective tissue massage are particularly helpful. An experienced physiotherapist can identify and treat tension and also develop customized exercises to relieve pain and improve mobility.

3. stress reduction and relaxation techniques
Chronic stress can exacerbate endometriosis symptoms. Targeted stress reduction is therefore an important part of complementary therapy. Methods such as progressive muscle relaxation (PMR), mindfulness training or meditation help to relax the body and cope better with pain.

4. herbal medicine (phytotherapy)
Medicinal plants such as lady’s mantle or raspberry leaves can alleviate menstrual cramps, aid digestion, promote relaxation, strengthen the immune system and promote well-being. Phytotherapy uses medicinal herbs to promote relaxation and strengthen the immune system. Herbal preparations such as teas or ointments are available at low cost. Advice from specialists is particularly important here in order to find suitable remedies and avoid side effects or interactions.

5. traditional Chinese medicine (TCM)
TCM strives to balance the body’s own “Qi” or vital energy. Methods such as acupuncture, Chinese herbal therapy and Qi Gong are intended to release blockages and increase well-being. Acupuncture in particular has proven effective in relieving endometriosis-related pain. Herbal medicine and movement exercises are intended to promote well-being. In Chinese diagnostics, mental and lifestyle factors are also taken into account alongside physical complaints in order to develop a comprehensive therapy. TCM can be a useful complement to conventional medical treatment and can be individually adapted.

Note: Complementary methods do not replace medical treatment, but can provide effective support in consultation with your doctor. Talk to specialists and inform yourself thoroughly to find the right approach for you.

Fertility
Endometriosis can affect fertility in various ways. Constricted or fused fallopian tubes can prevent the egg from reaching the uterus, and cysts or adhesions can restrict the mobility of the ovaries. In addition, in some women with endometriosis, the quality of the eggs appears to be impaired. Inflammatory processes triggered by the disease can also make implantation more difficult. A precise diagnosis and consultation with experienced doctors, ideally with endometriosis expertise, are important in order to identify the individual factors. In general, it is recommended not to wait too long in the case of endometriosis, as – even if the desire to have children is not a priority at the moment – it increases the chances later on if you seek advice at an early stage.

Fertility promotion and diagnostics:
The WHO defines an unfulfilled desire to have children as when unprotected sexual intercourse does not result in pregnancy for at least one year. To identify the causes, methods such as cycle analysis (it is helpful to observe the cycle closely, for example by taking the temperature or observing the cervical mucus) or tests for fallopian tube patency (chromopertubation or HYCOSY) can be used. The male partner should also be examined for fertility with a spermiogram, as both partners are often affected by restrictions.

Fertility treatment
In most fertility clinics, specialists from various disciplines work together to offer individually tailored treatment options. The following reproductive medicine procedures can be helpful:
– Hormonal stimulation: Medication stimulates egg maturation.
– Insemination: Prepared sperm is inserted directly into the uterus.
– In vitro fertilization (IVF): Eggs are retrieved, fertilized in a test tube and later transferred to the uterus.
– Intracytoplasmic sperm injection (ICSI): A sperm is injected directly into the egg

The average baby take-home rate per cycle is 20%.
In Austria, the IVF fund covers 70% of the costs for 4 attempts. The personal contribution to the costs can nevertheless represent a high financial burden. Often, fertility treatment also represents a psychological burden that should not be underestimated. In addition to support from psychologists, exchanges in self-help groups can also provide helpful support. Here we would like to refer you to the Kinderwunsch Österreich association – link to the website. In addition, our chairwoman Michaela is also available for an exchange. She can report from her own experience.

Pregnancy
Pregnancy is generally no more risky for women with endometriosis than for other women. Miscarriages or diseases such as gestational diabetes do not occur and the risk of malformations is not increased. In rare cases, adhesions can cause discomfort, but these can usually be treated well.
If the uterus has been altered by adenomyosis surgery, a planned caesarean section is often recommended.
However, those affected generally benefit from comprehensive care from doctors and midwives who are aware of endometriosis. Psychosocial support is also helpful in overcoming fears and possible discomfort.

Breastfeeding as a preventative measure
Breastfeeding can delay the recurrence of endometriosis, as the cycle is often suppressed. In any case, the WHO recommends full breastfeeding for six months and then continuing until the baby is two years old. However, this is a very personal matter. We recommend that you take advantage of good breastfeeding advice or a breastfeeding preparation course beforehand.

Does pregnancy cure endometriosis?
Unfortunately, this myth is very persistent. Although the symptoms often subside during and after pregnancy, pregnancy endometriosis does not heal. The symptoms can reoccur after the cycle returns – even if they have changed.

Psychosocial stress and support
For many sufferers, endometriosis leads to severe restrictions in quality of life and increases the risk of secondary illnesses/concomitant illnesses such as depression. The WHO has recognized the connection between chronic pain and psychological stress. Studies show that women with more severe endometriosis often rate their quality of life lower than those affected by other serious illnesses such as cancer or arthritis.

For many, the diagnosis itself initially brings relief after an often long period of suffering and uncertainty. However, the various symptoms of endometriosis cause individual challenges: Many sufferers experience restrictions in everyday life and at work, often accompanied by pressure, anger and worry.

The symptoms often put a strain on relationships, and the uncertainty about fertility often leads to deep life crises and questions about one’s own femininity. Pain during sexual intercourse often also has an impact on the relationship. This is where we work together with the trained social worker (MA, MA), clinical sexologist and certified sex, trauma and theater educator Magdalena Zidi(https://www.sexologisch.com/).

Support and therapy
Educating family, partners and colleagues can promote understanding and acceptance of the symptoms. Those affected can find support from self-help groups and specialized therapists. Psychological support can help to develop strategies for coping with pain and improving quality of life. Therapy can be short-term or long-term, depending on individual needs. There is, for example, the Association for Outpatient Psychotherapy(https://www.vap.or.at/) – the association has an overview of psychotherapists with free places on a sickness certificate or you can also get free psychological
support via the Proges clearing center(//www.proges.at/anfrage-clearingstelle). You can find an overview of all psychotherapists in Austria here: https://www.psyonline.at/

Special shapes

1. endometriosis on/of the sciatic nerve
– Radiating pain along the nerve down the leg to the foot
– Numbness (buttocks, genitals, leg to foot), tingling sensations
– Weakness in the affected leg / restricted movement of the foot (falling foot or difficulty climbing stairs)
– Hormone therapy and strong painkillers hardly bring any relief
– Isolated endometriosis on the sciatic nerve is possible (see case studies)

2. endometriosis of the sacral nerves
– Sciatic pain
– Overactive bladder
– Urinary incontinence
– Hypertonic pelvic floor syndrome (overactive pelvic floor)
– Dorsal pudendal pain (pain in the area of the pudendal nerve from the clitoris to the anus, worsening when sitting)

3. compression syndromes – Own associations and self-help groups provide information about compression syndromes and endometriosis. We can arrange contact on request.

Each way of dealing with endometriosis is individual – self-help groups and specialist advice centers can offer supportive help to find the right solution.