Endometriosis

What is endometriosis and how does it manifest in the body?

Endometriosis is a chronic, inflammatory disease in which tissue similar to the uterine lining grows outside the uterine cavity. This so-called endometrium-like tissue reacts like normal endometrium to the hormones of the female cycle – it builds up, bleeds, but cannot be expelled from the body. This causes recurring inflammation, blood accumulations, and eventually scars, cysts, and adhesions.

The disease can manifest in different parts of the body. Most commonly affected are the peritoneum, ovaries, fallopian tubes, intestines, bladder, or the uterine muscle (adenomyosis). In rare cases, endometriosis lesions are also found outside the abdominal cavity – for example, in the lungs, diaphragm, or scar tissue after surgeries.

Depending on the location, these lesions can bleed with each period. However, since the blood cannot drain, this leads to inflammatory reactions and chronic irritation. Typical symptoms are cramp-like pain before and during menstruation, but also persistent lower abdominal pain, back pain, pain during sexual intercourse, pain when urinating or during bowel movements. Endometriosis often also causes fertility problems.

The symptoms of endometriosis are very individual. Some women have little or no complaints, while others experience severe limitations in everyday life, work, and private life. It is characteristic that the symptoms often occur in a cyclical pattern but can also be chronic – especially if adhesions or deeply infiltrating lesions are already present.

How common is endometriosis and how widespread is this disease?

Endometriosis is one of the most common diseases worldwide among women of childbearing age – the number of unreported cases is significant, as many cases remain undiagnosed for a long time. The exact frequency of endometriosis is difficult to determine because many affected women initially show no or only nonspecific symptoms. However, studies and estimates suggest that about 8 to 15% of all girls and women of childbearing age. In Germany, this affects an estimated up to two million women. The World Health Organization (WHO) is estimated worldwide at around 190 million affected from.

The prevalence is particularly high in certain clinical groups:

The disease can begin as early as adolescence – with the onset of the first menstruation – but often remains years undetected. On average, it takes seven to ten years from the first appearance of symptoms to diagnosis. Many women only learn about their endometriosis during fertility treatments or gynecological surgeries.

In 2017 alone, about 28,000 women hospitalized due to endometriosis – a number that reflects the extent of diagnosed cases but only inadequately captures the actual prevalence.

Particularly problematic is the lack of social and medical awareness of the disease: Many affected individuals initially receive misdiagnoses – such as irritable bowel syndrome, psychogenic pain, or premenstrual syndrome – which delays care and promotes chronic courses.

What causes and risk factors promote the development of endometriosis?

The exact causes of endometriosis are not yet clearly understood, but various scientific theories and statistically proven risk factors provide clues about its development.

Despite intensive research, there is still no uniformly confirmed cause for endometriosis. Rather, it is assumed to be a multifactorial process in which various biological, genetic, and immunological mechanisms interact. The main theories of origin are:

Retrograde menstruation (implantation theory): Here, menstrual blood containing endometrial cells does not fully flow out through the vagina but instead flows backward through the fallopian tubes into the abdominal cavity. The mucosal cells that adhere there can implant and develop further. This phenomenon occurs in about 90% of all menstruating women – but only some develop endometriosis, indicating other influencing factors.

Coelomic metaplasia theory: This theory assumes that cells of the peritoneum (coelomic epithelium) transform into endometrium-like tissue under certain conditions – such as hormonal influences or inflammation (metaplasia).

Archimetra hypothesis (relation to adenomyosis): Endometriosis could also arise from a developmental disorder of the uterine lining itself, which then invades deeper muscle layers or areas outside the uterus. This also explains the frequent simultaneous diagnosis of Adenomyosis in endometriosis patients.

Stem cell and immune theories: Some studies suggest that Stem cells or Immune system dysregulation contribute to the development. Autoimmune processes and inflammatory reactions at endometriosis lesions indicate an immunological involvement.

Genetic factors: Endometriosis occurs more frequently in families. First-degree relatives have up to a sixfold increased risk, also to become ill. Recent genetic studies identified, among others, mutations in Neuropeptide-S receptor 1, which occur conspicuously often in severe endometriosis forms (grade 3–4).

Are there ways to prevent it?

So far there are no proven measures for prevention of endometriosis. Known risk factors such as cycle density or genetic predisposition cannot be actively influenced. However, a early recognition of symptoms and a quick start of therapy help to prevent the progression of the disease and reduce the symptoms.

What typical symptoms and complaints occur with endometriosis?

Endometriosis causes a variety of complaints that can vary in intensity depending on the location and extent of the lesions – typical are cycle-dependent pain and reduced quality of life. 

Endometriosis is known for its "chameleon-like" appearance: some affected individuals are almost symptom-free, others suffer from massive, sometimes chronic pain. The symptoms vary greatly, which makes diagnosis difficult and often leads to long suffering.

Symptoms depending on location

The symptoms correlate less with the size but especially with the location of the endometriosis lesions. Typical affected regions are:

• Ovaries → Endometriomas ("chocolate cysts")
• Peritoneum/Douglas pouch → Lower abdominal pain, pain during sex
• Bladder/Ureter → Irritable bladder, blood in urine
• Gut → Pain during bowel movements, cyclical rectal bleeding
• uterine muscle (adenomyosis) → Increased and prolonged menstrual bleeding

The intensity of symptoms often increases shortly before the period and subsides again at its end. In advanced disease, however, the pain can persist permanently, for example due to adhesions and inflamed irritated nerve tissue.

Nonspecific and often misinterpreted

The symptoms of endometriosis often resemble other conditions such as irritable bowel syndrome, urinary tract infections, or psychosomatic disorders. Many affected individuals therefore initially receive misdiagnoses. On average, seven to ten years until the correct diagnosis – especially when there are no noticeable cycle disorders.

How is endometriosis diagnosed and what options are there for early detection?

The diagnosis of endometriosis is often difficult and lengthy because the symptoms are nonspecific – targeted diagnostics therefore require experience, structured medical history, and the use of imaging and surgical procedures.

Why the diagnosis is often delayed

A major problem in diagnosis is that the symptoms of endometriosis resemble many other conditions – including irritable bowel syndrome, urinary tract infections, or psychological stress disorders. Additionally, Cycle-related complaints normalized by society, which leads to many women enduring severe pain for years without seeking medical help.

The average time span from the first symptoms to diagnosis in Germany is between seven and ten years, on average three years for patients wishing to have children

Stepwise diagnosis

The diagnosis of endometriosis is multi-step and begins with a thorough medical history:

Medical history (patient interview)

• Detailed recording of symptoms (timing, location, cycle relation)
• Questions about menstrual flow, pain progression, sexuality, desire to have children, family history

Gynecological examination

• Speculum and palpation examination to assess changes in the pelvis
• Palpation of painful areas, nodules, or adhesions (e.g., Douglas pouch)

Transvaginal ultrasound (sonography)

• Helpful in detecting cysts (especially endometriomas on the ovaries)
• Adhesions and nodular changes can also become indirectly visible
• However, small or superficial lesions can remain undetected in ultrasound

Magnetic resonance imaging (MRI)

• Additionally used if deep infiltrating endometriosis is suspected
• Shows the location and extent of lesions outside the uterus precisely
  

Laparoscopy (abdominal endoscopy)

• Gold standard for a definitive diagnosis
• Under general anesthesia, a camera is inserted into the abdominal cavity through a small incision
• Suspicious lesions can be made visible directly, classified, and removed if necessary
• A Microscopic examination (histology) of the tissue sample taken confirms the diagnosis

New developments in early detection

• Saliva test (non-invasive): Research is ongoing on methods to analyze biomarkers in saliva samples that could indicate endometriosis – however, clinical application is still pending.
• Blood tests for inflammatory markers or hormonal changes are not yet reliable enough.
• Cycle apps or symptom diaries help with early detection through structured documentation that can provide clues about cycle-dependent patterns.

Clinical classification of endometriosis

To classify the disease, endometriosis is divided according to the location and extent of the lesions:

Which medication and hormonal treatment approaches help with endometriosis?

The goal of medication and hormonal treatment for endometriosis is to relieve pain, inhibit the growth of lesions, and prevent the recurrence of the disease – a causal cure is not yet possible.

Medication-based pain therapy

Many patients initially receive symptomatic treatment with painkillers. These relieve the symptoms but do not affect the progression of the disease:

• Non-steroidal anti-inflammatory drugs (NSAIDs): Active ingredients such as Ibuprofen, Diclofenac or Naproxen have pain-relieving and anti-inflammatory effects. They are especially suitable for mild to moderate menstrual pain.
  

• COX-2 inhibitors: These selective anti-inflammatory drugs are gentler on the stomach and can be used specifically for chronic inflammation caused by endometriosis.

Long-term intake should always be medically supervised to avoid side effects.

Hormonal therapy (endocrine treatment)

Since the growth of endometriosis lesions is promoted by Estrogen promoted, hormonal treatment approaches aim to lower estrogen levels or suppress cyclical hormonal changes.

Add-back therapy during hormonal suppression

With long-term hormonal suppression – for example, by GnRH analogs – typical menopausal symptoms such as hot flashes, osteoporosis, or loss of libido can occur. To alleviate these, a so-called Add-back therapy used. Patients additionally receive a low dose of estrogen and/or progestogen.

Complementary, non-hormonal active ingredients

In addition to conventional medical therapies, complementary substances are increasingly being used:

• Pycnogenol (pine bark extract): In a small study, it showed anti-inflammatory effects in combination with hormonal preparations.

• Vitamin D: According to current studies, a low vitamin D level could be associated with more severe symptoms. However, supplementation is only recommended if a deficiency is proven.

Therapy decision: individual and needs-based

The choice of drug therapy depends, among other things, on:

• the severity of the symptoms
• the desire to conceive
• the age and general health condition of the patient
• location of the lesions
• acceptance of possible side effects

In many cases, a Combination of painkillers and hormone therapy meaningful – sometimes also following surgery to prevent relapses.

Which surgical procedures are used for endometriosis?

Surgical interventions play a central role in the treatment of endometriosis, especially in cases of severe pain, pronounced findings, or unfulfilled desire to have children – the goal is the complete removal of affected lesions and restoration of organ function.

Indications for surgery

Surgery is especially recommended when:

• severe or chronic pain exist that cannot be sufficiently relieved with medication
• a unfulfilled desire to have children are present and anatomical changes (e.g., adhesions) exist
• endometriosis lesions on bowel, bladder, or other organs impair function
• suspected endometriosis with unclear diagnosis is present (diagnostic-therapeutic laparoscopy)
• cysts, especially endometriomas, present, which should be surgically removed

Overview of surgical techniques

Laparoscopy (abdominal endoscopy) – gold standard

The most common and minimally invasive method for diagnosing and treating endometriosis.

• Under general anesthesia, an endoscope is inserted through small incisions in the abdomen
• Endometriosis lesions are treated with Laser, electrical coagulation, ultrasound scalpels or cold instruments removed or destroyed
• Adhesions are released, cysts opened or completely removed
• Tissue samples are taken and examined histologically

Advantages:

• minimal scarring
• rapid recovery
• high diagnostic accuracy
• combined diagnosis and therapy in one procedure

laparotomy (open surgery)

Used only in very complex cases, such as:

• deeply infiltrating endometriosis involving bowel or bladder
• extensive adhesions or repeat surgeries
• larger cysts or suspected tumors

organ-preserving specialized surgeries

Especially in endometriosis affecting:

• Gut → removal of affected bowel sections with suture reconstruction
• urinary bladder or ureter → partial resection or reconstruction in cases of deep infiltration
• uterus (adenomyosis) → removal of the affected muscle tissue

hysterectomy and oophorectomy

In particularly severe cases and after family planning is complete, removal of the uterus (hysterectomy) and/or the Ovaries (oophorectomy) should be considered – especially in cases of:

• therapy-resistant endometriosis
• severe adenomyosis
• multiple recurrences despite conservative therapy

Attention: This decision should be made individually, carefully, and considering all therapy alternatives. Removal of the ovaries leads to an artificial menopause with corresponding side effects.

combination therapy and follow-up care

After surgery, a hormonal follow-up treatment often useful to prevent recurrence (relapse) – e.g., with Dienogest or GnRH analogs over three to six months. Without additional therapy, up to 50% of patients develop new lesions within five years.

How does endometriosis affect the desire to have children and what options exist for fertility problems?

Endometriosis is one of the most common causes of infertility because the disease can affect both the fallopian tubes and the ovaries – however, there are numerous treatment options to support fertility.

Endometriosis and its impact on fertility

About 40 to 50% of women with endometriosis have difficulty becoming pregnant. The disease can affect fertility in various ways:

adhesion and damage to the fallopian tubes

Endometriosis lesions that settle on the fallopian tubes can cause adhesions and scar tissue occur. These prevent the natural transport of the egg into the fallopian tube and thus fertilization by sperm.

damage to the ovaries and eggs

In deeply infiltrating endometriosis (e.g., on the ovaries), endometriomas (chocolate cysts) can develop that impair ovarian function. This can lead to both reduced egg quality as well as a reduced egg reserve lead to.

impaired implantation

Even if the egg is fertilized, the environment in the uterine area by endometriosis lesions and inflammation can be altered so that a healthy implantation of the embryo is made more difficult.

altered immune response

Endometriosis can affect the immune systemwhich can also lead to problems during pregnancy. There can be a misregulation where the body recognizes the fertilized embryo as "foreign" and rejects it.

Treatment options for fertility problems caused by endometriosis

Depending on the severity of endometriosis and individual needs, various options are available to fulfill the desire to have children:

surgical removal of endometriosis lesions

• Laparoscopy: Many women initially undergo a laparoscopy performed, in which the endometriosis lesions are removed. This can help to remove adhesions and cyststhat impair fertility. In many cases, the chance of spontaneous pregnancy increases after this treatment.
  

Hormonal therapy to support fertility

• After surgical removal of endometriosis lesions, a hormonal treatment help stabilize the cycle and reduce the risk of relapse.

• Progestins (dienogest) and GnRH analogs (e.g., leuprorelin) can be used to suppress the growth of new endometriosis lesions and preserve ovarian function.
  

In vitro fertilization (IVF)

For women whose fallopian tubes or eggs have been severely affected by endometriosis, In vitro fertilization (IVF) will be a solution.

• In IVF, Eggs retrievedfertilized outside the body and then implanted into the uterus.

• Women with endometriosis have a slightly lower success rate with IVF, but the chances of pregnancy are often high, especially after successful surgery to remove endometriosis lesions.
  

Intracytoplasmic sperm injection (ICSI)

If the partner's fertility is also limited or in severe endometriosis where eggs are not of the desired quality, the ICSI can be a helpful method. Here, a single sperm is directly injected into an egg to facilitate fertilization.

Egg donation

In cases where the eggs are severely impaired and self-fertilization is not possible, the Egg donation are an option. Healthy eggs from a donor are used.

chances and prospects of success

The chances of pregnancy despite endometriosis are often very good, especially if the disease is detected and treated early. The IVF success rates for endometriosis patients vary but are often around 40 to 50% per treatment cycle – depending on the severity of the disease and the woman's age.

Consistent therapy, whether through surgery, hormonal support, or assisted reproductive techniques, can significantly improve fertility. Even after surgical removal of endometriosis lesions, the chances of pregnancy increase.

Which self-help strategies and complementary measures are useful for endometriosis?

In addition to medical treatment, self-help strategies and complementary measures can also play an important role in managing endometriosis by helping to relieve pain and improve overall well-being.

Additional Measures and Lifestyle Changes

The treatment of endometriosis is not limited to medication or surgical procedures. Numerous complementary strategies can relieve symptoms and improve the quality of life for those affected:

Nutrition

A balanced diet can help reduce inflammation in the body and stabilize hormone balance. Some specific recommendations include:

• Anti-inflammatory foods: Omega-3 fatty acids from fish, nuts, and seeds, as well as antioxidant-rich foods like berries, leafy greens, and turmeric, can have anti-inflammatory effects.

• Avoiding sugar and refined carbohydrates: These can promote inflammatory processes and negatively affect hormone balance.

• Avoiding dairy products and red meat: Some studies have shown that consuming dairy products and red meat can worsen symptoms of endometriosis because they contain hormonally active substances.

Sports and exercise

Regular physical activity has many benefits for endometriosis patients:

• Pain relief: Moderate exercise can promote blood circulation and relieve muscle tension in the abdominal area.

• Stress reduction: Yoga, Pilates, and relaxing activities such as Walking or Swimming help reduce stress levels and improve body awareness.

• Promoting hormone regulation: Endurance sports like running or cycling can help stabilize hormonal balance.

Stress management and relaxation techniques

Stress can worsen endometriosis symptoms, so the use of Relaxation Techniques crucial:

• Mindfulness: Stress management through meditation and mindfulness training can help relieve pain and improve emotional well-being.

• Progressive muscle relaxation (PMR) and autogenic training: These methods aim to reduce physical tension, which can be beneficial for chronic pain.

Heat applications

Heat can effectively counteract the cramping pain of endometriosis:

• Hot water bottle or heating pad: Heat can especially help relieve pain and loosen muscle tension in the lower abdominal area.

• Warm bath: A relaxing bath with essential oils (e.g., lavender or chamomile) can have an additional calming effect.

Acupuncture

Acupuncture has established itself as a complementary treatment for endometriosis. It is often used to:

• To relieve pain and regulate hormone balance.
• Reduce inflammation and promote blood circulation in the affected organs.

There is evidence that acupuncture can also be helpful in improving fertility in endometriosis when combined with other therapies.

Herbal and dietary supplements

Some herbal remedies and dietary supplements have proven helpful for patients with endometriosis:

• Pycnogenol (pine bark extract): This antioxidant has anti-inflammatory properties and could help relieve endometriosis symptoms.
• Vitamin D: Some studies show that a deficiency in vitamin D may be associated with more severe endometriosis symptoms. Supplementation can therefore be useful.
• Folic acid and magnesium: These micronutrients have a relaxing effect on the muscles and can help relieve cramps during menstruation.

self-help groups and psychological support

Dealing with chronic pain and the emotional burdens caused by endometriosis can be very challenging. Here, self-help groups and psychological support can be a valuable help:

• Exchanging experiences with others affected can provide emotional support and share important insights.
• Therapy options such as cognitive behavioral therapy or psychological counseling can help improve coping with pain and the psychological burdens of the disease.

How does endometriosis progress and what is the long-term prognosis for those affected?

The course of endometriosis is individual for each affected woman and depends on various factors – however, early diagnosis and targeted therapy can be crucial in improving quality of life and prognosis.

Endometriosis is a chronic disease whose course can vary over time. In many cases, the disease begins in youth with severe menstrual pain and can remain undetected for years. In other patients, the first symptoms appear later in life, usually in the context of an unfulfilled desire to have children.

The course can roughly be divided into the following phases:

early stage

• In the early phase, the endometriosis lesions are small and mostly limited to the peritoneum or the ovaries limited.
• The symptoms are often still mild and mainly manifest as painful periods, occasionally accompanied by Intermenstrual bleeding or pain during sexual intercourse.
  

advanced stage

• If the disease remains untreated, the endometriosis lesions can grow larger and spread to adjacent organs, such as fallopian tubes, Gut or Bladder.
• adhesions and cysts can develop that impair the function of the affected organs and lead to stronger chronic pain.
• At this stage, the following often also occur fertility problems down.

late stage (severe endometriosis)

• In more severe cases, the endometriosis lesions are deeply infiltrating and can also invade the uterine muscle (adenomyosis) or penetrate other deep organs.
• adhesions and organ dysfunctions are common, which not only increases the pain but also significantly reduces the chances of a natural pregnancy.

long-term prognosis of endometriosis

The long-term prognosis largely depends on how early the disease is diagnosed and which treatment methods are used. With early detection and appropriate therapy, many women can lead a normal life, even if the disease cannot be completely cured.

pain and quality of life

• Chronic pain are a common problem that many women with endometriosis face throughout their lives. However, a combination of surgical interventions, hormonal treatments and self-help strategies significantly relieve pain and improve quality of life.
• long-term pain treatment and pain management techniques (e.g., acupuncture, meditation, physiotherapy) are helpful in better coping with the chronic nature of the disease.

Fertility

• Endometriosis is one of the most common causes of unfulfilled desire to have children. About 30–50% of affected women have difficulty becoming pregnant, especially if the fallopian tubes or ovaries are severely affected.
• Early treatment through surgical removal of endometriosis lesions and supportive hormonal therapy can improve fertility.
• Assisted reproductive technologies such as IVF offer many women with endometriosis the chance to become pregnant.

relapses and recurrences

• Endometriosis can often recur after treatment, especially if no hormonal therapies can be used to suppress relapses. Studies show that in about 40–50% of women new endometriosis lesions can appear within five years after surgery.
• Long-term management with a combination of Surgery and hormonal preparations can help reduce the likelihood of relapses.
  

Prognosis related to comorbidities and lifestyle

• Endometriosis can be associated with other conditions such as Irritable bowel syndrome, chronic fatigue syndrome or Autoimmune diseases may be associated, which can complicate the course of the disease.
• A healthy lifestyle with balanced nutrition, regular exercise and Stress management is crucial to alleviate symptoms and improve overall quality of life.

What potential does CBD have in the treatment of endometriosis? 

Cannabidiol (CBD) could be a promising addition to the therapy of endometriosis. Studies in animal models and initial clinical observations indicate that CBD has anti-inflammatory and pain-relieving properties. This could counteract the inflammation-related pain and growth of endometriosis lesions. It modulates key mechanisms such as inflammation, oxidative stress, and neuroimmune sensitizations, which play a crucial role in the symptoms of endometriosis.

Research shows that CBD reduces inflammatory markers such as TNF-α and IL-1, decreases oxidative stress, and influences neuroinflammatory processes. This could reduce both the size and volume of lesions as well as chronic pain. Preclinical studies suggest that CBD may also inhibit the formation of new blood vessels (neovascularization) and tissue proliferation (fibrosis), which could contribute to stabilizing or reducing the lesions. For patients who do not respond adequately to conventional hormone therapies or cannot tolerate them, CBD could be a useful alternative.

Although the preclinical results are promising, clinical research is still in its early stages. So far, there are only a few large-scale studies evaluating the long-term benefits and optimal dosage of CBD for endometriosis. Further investigations are necessary to fully demonstrate the safety, efficacy, and specific benefits of CBD in this particular context.

A clinical study is currently underway with CANNEFF vaginal suppositories containing CBD and hyaluronic acid for endometriosis.