Endometriosis – a compendium of knowledge about the disease: symptoms, treatment and diagnosis

What is endometriosis?

Endometriosis is a chronic gynecological disease, in which cells resembling the lining of the uterus (endometrium) appear outside the uterine cavity. Under normal conditions, the endometrium lines the inside of the uterus and undergoes cyclical changes during the menstrual cycle. However, in endometriosis, similar tissue develops elsewhere in the body, responding to hormones and causing local inflammation.

The disease most commonly occurs in the ovaries, where it can form endometrial cysts, and in the supporting structures of the uterus, such as the uterosacral ligaments. However, lesions can also occur outside the reproductive organs, including in the intestines, urinary bladder, and occasionally even the lungs.

From a clinical perspective, the most common symptoms include chronic pelvic pain, worsening menstrual symptoms, and difficulty conceiving. Despite years of intensive research, a clear cause for the development of endometriosis has not yet been identified. Several hypotheses exist in the medical literature explaining the mechanism of its development, but none fully explains all cases of the disease.

Endometriosis isn't just a "menstrual disorder"—it's a condition that can affect the entire body. It occurs when tissue similar to the inner lining of the uterus, the endometrium, mistakenly migrates and implants itself in areas outside the uterus, primarily in the pelvic area around the uterus, ovaries, and fallopian tubes. These implants respond to the monthly fluctuations in hormones (estrogen and progesterone) during the menstrual cycle. During this cycle, estrogen can cause this tissue to grow, often causing severe pain. 

Endometriosis is associated with immunological and hormonal disordersAs 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. This combination can have a devastating impact on a woman's life in many ways.

According to WHO estimates, endometriosis affects approximately 10% of women and girls worldwide (approximately 200 million). In Poland, it is estimated that this figure is one in eight women. 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 labeled as "part of being a woman" or misdiagnosed. This often results in a delay in receiving a proper diagnosis of endometriosis. On average, a correct diagnosis takes 8-10 years or more.

Some women with endometriosis have no symptoms. A surgeon may discover the disease incidentally while performing another procedure, 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 survey and ultrasound imaging or MRI.

The occurrence of endometriosis

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, known as endometrioma or "chocolate cysts"), uterosacral ligaments, or the peritoneum (lining of the pelvis and abdomen). Endometriosis can also occur in the muscular wall of the uterus (adenomyosis). It can also affect the bowel, bladder, intestines, appendix, rectum, or leg nerves, or lodge 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 women of any age, even before their first period. For some women, it can even occur during 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 life of the patient?

Endometriosis can have a very negative impact on all aspects of life:

• in young girls it may interfere with attending school and participating in sports or other extracurricular activities, as well as social life.
• may change career choices and even force the patient to give up her career.
• can affect finances when the disease interferes with work and when the patient struggles to obtain the correct diagnosis or treatment, paying for visits to various specialists and for specialist endometriosis removal surgeries (in Poland it is extremely difficult to find a good endometriosis specialist under the National Health Fund).
• It can affect relationships with partners, friends, or family members who don't understand the condition and its effects. It can cause pain during intercourse and lead to infertility.
• It can lower self-esteem and cause depression. Due to low awareness of this condition, many people, including some doctors and other healthcare professionals, treat women's pain as "normal" or claim it's all in their head, that they're being hysterical, or that they're making themselves feel ill. Often, people say things like "you're so beautiful" or "period pain is normal," as well as statements like "you're exaggerating, it's definitely not that painful."

What are the causes of endometriosis?

The exact cause of endometriosis is unknown, but it is hormone-dependent.This means that, like the endometrium, which reactsDue to the hormonal changes that cause menstruation, the endometrium-like tissue outside the uterus also bleeds. This bleeding can cause pain, inflammation, and scarring, and can also damage pelvic organs.

There are many theories about the causes of endometriosis, but no proven cause can adequately explain every aspect of the disease. Here are some of the proposed theories and beliefs about endometriosis:

• Retrograde menstruation is one possibility that could cause endometriosis. It was first suggested by Dr. John Sampson. Retrograde menstruation occurs when endometrial tissue inside the uterus, which should be eliminated 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 have retrograde menstruation, only one in 10 are 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 so differently.
• The Müllerian remnant theory suggests that precursors to endometriosis may be present during fetal development. These remain dormant until they are activated and transformed into endometriosis during puberty, when estrogen levels rise and menstruation begins.
• Coelomic metaplasia and stem cell transition are theories that suggest that cells other than Müllerian cells can differentiate into endometrioma. Coelomic cells encompass the peritoneum. Bone marrow stem cells can aid in the repair of many types of tissue.
• Endometriosis likely has a genetic component. Girls with close relatives with endometriosis are three to seven times more likely to develop the condition. However, further research is needed to fully understand the genetics of endometriosis.
• A weakened or malfunctioning immune and lymphatic system and the body's inflammatory response also contribute to endometriosis, although the mechanisms are poorly understood.

Recent research highlights the importance of oxidative stress, defined as an imbalance between reactive oxygen species and antioxidants, which causes a generalized inflammatory response in the peritoneum. Microbiome disruptions are also implicated as a potential source of endometriosis. The role of environmental pollution (air, water, food, and ubiquitous harmful chemicals, such as those found in cosmetics) is also emphasized, contributing to the development of inflammatory foci in the body.

Important information: Endometriosis is not contagious and cannot be passed from person to person through contact.

What are the symptoms of endometriosis?

Symptoms of endometriosis include:

• abnormal, irregular menstruation
• painful periods
• heavy menstrual bleeding
• bothersome PMS
• spotting and bleeding during the cycle
• Bolesny Stosunek Płciowy
• gastrointestinal disorders
• constipation
• flatulence (so-called endobelly)
• nausea
• painful bowel movements
• painful and/or frequent urination
• chronic back pain
• stomach pain
• pelvic pain not related to menstruation
• arthralgia
• neuralgia
• infertility or problems getting pregnant
• migraine
• long-term fatigue
• depression
• medicines
• brain fog
• insomnia

Endometriosis can cause pain that occurs regularly, worsening before and during menstruation. Some women experience pain constantly, but for others, it may come and go. The pain may subside during pregnancy, and sometimes it disappears without any treatment.

How to deal with symptoms?

There are many ways to relieve the symptoms of endometriosis, besides medication:

• diet anti-inflammatory
• anti-inflammatory supplementation
• physiotherapy urogynecological
• physical exercises (yoga, pilates, slow jogging, other forms of exercise adapted to the physical abilities of the patient)
• acupuncture
• mindfulness (meditation and relaxation techniques)
• psychotherapy
• changing your lifestyle to a more ecological one and in line with your circadian rhythm.

While all of the above options can alleviate symptoms, each patient will benefit differently. What works for one woman may not work for another. Each patient must trust their own judgment, work with their doctor, and find the pain management strategy that works best for them. For severe pain, referral to a pain management specialist may be necessary.

You can learn about various methods for relieving the symptoms of endometriosis on our website. We will expand your knowledge not only on medical issues but also on supportive therapies that have brought relief and help to many women in their fight against endometriosis.

Endometriosis diagnosis

Endometriosis is a difficult disease to diagnose because:

• The symptoms of endometriosis vary greatly.
• symptoms are common and may resemble pain and other discomforts caused by other conditions such as irritable bowel syndrome (IBS) or pelvic inflammatory disease;
• different women have different symptoms
• some women have no symptoms.

Endometriosis is correctly diagnosed according to the following scheme:

• subjective examination – interview regarding symptoms and reported ailments, the patient’s medical history and diseases occurring in relatives,
• physical examination – in the case of a gynecological consultation, assessment of the vulvar area,
• transvaginal examination with a speculum, which allows for the detection of suspicious changes on the cervix, vaginal walls and vaults, and transvaginal palpation, during which the mobility of the uterus and ovaries, tenderness or pain of the pelvic organs and the presence of pathological resistances within it are assessed,
• additional tests, the most basic of which in gynecology is transvaginal ultrasound.

How to diagnose pelvic endometriosis?  

The way to confirm pelvic endometriosis is to undergo laparoscopy Diagnostic testing 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 for microscopic examination to confirm whether it is endometriosis.

Imaging studies are helpful in diagnosis but not always conclusive. Clear evidence of endometriosis in any form is not visible on computed tomography (CT), magnetic resonance imaging (MRI), or ultrasound. Imaging studies, pelvic examinations, and rectovaginal examinations may indicate suspicion of ovarian endometriosis and deep endometriosis. Experienced specialists can confirm the presence of endometriosis based on these findings, taking into account all the patient's reported symptoms. It is common practice to perform a pelvic ultrasound and MRI before undergoing laparoscopic endometriosis surgery, 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 its results. It is primarily used to monitor ovarian cancer treatment.

Various markers have been developed or are being studied (microRNA in saliva and blood, FUT4 in the endometrium), but their sensitivity and specificity require confirmation in a larger number of patients. Currently, these tests are not recommended. They are used only in patients with symptoms suggestive of endometriosis and negative imaging results, or when peritoneal involvement is suspected.

The biggest problem is that receiving an accurate diagnosis of endometriosis in Poland can take up to 8–10 years from the onset of symptoms. This stems from a lack of knowledge among the general public, which also impacts the awareness of medical personnel. Furthermore, there are still very few diagnosticians specializing in endometriosis. Therefore, unfortunately, many patients with endometriosis are misdiagnosed, often repeatedly, leading to unnecessary and inappropriate treatment.

What are the most common errors in diagnosing endometriosis?

Misdiagnosis in women with endometriosis is primarily due to two factors: doctors' poor understanding of endometriosis due to a lack of focused education in medical schools, and the fact that the symptoms of endometriosis can be similar to those of more common diseases or conditions. Some misdiagnoses that women receive include:

• 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's something in their mind that doesn't exist physically. Instead of treating physical symptoms, doctors sometimes refer them to a psychotherapist or psychiatrist.

Is endometriosis curable and what is the goal of treatment?

Endometriosis is a chronic and currently incurable disease. The goal of endometriosis treatment is to slow the progression of the disease, minimize symptoms, and sometimes improve fertility.

What are the treatment options for endometriosis?

1. You should try it first leczenie holistic including diet therapy, physiotherapy and psychotherapy.
2. If these treatments fail to provide sufficient improvement, pharmacological treatment should be considered, including nonsteroidal anti-inflammatory drugs and hormonal therapy. The choice of pharmacological treatment depends on the individual patient's efficacy, side effect profile, treatment costs, and patient preference. Pharmacological treatment will not remove existing lesions (adhesions, cysts, tumors, superficial and deep endometriosis lesions).

The following groups of drugs are used in therapy:

• nonsteroidal anti-inflammatory drugs (NSAIDs)
• combined contraceptive pills (DTA)
• progestogens
• antiprogestogens
• GnRH agonists
• GnRH antagonists
• aromatase inhibitors
• levonorgestrel-secreting intrauterine systems
• danazol.

3. The gold standard for treating deep endometriosis is minimally invasive laparoscopic excision, also known as "keyhole." This is a highly specialized procedure:

• Deep excision is performed during laparoscopic excision surgery. The surgeon carefully cuts out or removes the entire lesion from any location. This includes the tissue beneath the surface. Deep endometriosis is like an iceberg – although the disease is identified above the surface, most of it is implanted in the tissue beneath the surface. Therefore, it's crucial to find a surgeon who can remove the entire lesion.
• Cold excision: The ideal solution is to perform surgery with minimal use of heat and electricity. Often, surgeons use techniques such as ablation (lasers that destroy the disease) or cauterization (burning away the disease) to "burn and destroy" endometriosis lesions. However, this increases the risk of incomplete removal of deep endometriosis lesions and risks damaging surrounding healthy tissue. This doesn't 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.

4. Other forms of surgery: Ablation and cauterization remove only the superficial tissue, as in the case of superficial endometriosis, but ignore the tissue growing beneath the surface. In many cases, ablation or cauterization 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 following ablation and cauterization can be another source of pain. For this reason, excisional surgery is the gold standard for treatment. If a patient is considering surgery, they should ask their surgeon about the method of endometriosis removal.
5. Hysterectomy: It's a common myth that a hysterectomy will cure endometriosis. There's no cure for endometriosis, and hysterectomy is rarely the best treatment. Most endometriosis is located in areas other than the reproductive organs. If the uterus is simply removed without removing the remaining lesions in other organs, the patient will continue to experience pain. Decisions regarding a hysterectomy should be made with a physician experienced in treating 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 primary cause of the problem, provide significant relief.
   There is no cure for endometriosis. It is also not true that pregnancy treats endometriosis – it is only true that symptoms usually decrease during pregnancy due to the increased amount of progesterone in the body.

There is no cure for endometriosis. It's also not true that pregnancy cures endometriosis—only that symptoms usually improve during pregnancy due to increased levels of progesterone in the body.

Sources

• Endometriosis Definition, Stages, Symptoms, Causes, Diagnosis, and Treatment, Seckin Endometriosis Center
• Sampson JA. Perforating hemorrhagic (chocolate) cysts of the ovary: their importance and especially their relation to pelvic adenomas of the endometrial type (“adenomyoma” of the uterus, rectovaginal septum, sigmoid, etc.) Trans Am Gynecol Soc 1921;46:162-241.
• Sampson JA. Peritoneal endometriosis due to the menstrual dissemination of endometrial tissue into the peritoneal cavity. Am J Obstet Gynecol. 1927, 14(4):422-469, doi: 10.1016/S0002-9378(15)30003-X.
• D'Hooghe, TM, et al., Endometriosis and subfertility: is the relationship resolved? Semin Reprod Med, 2003. 21(2): p. 243-54.
• Goud, PT, et al., Dynamics of nitric oxide, altered follicular microenvironment, and oocyte quality in women with endometriosis. Fertil Steril, 2014. 102(1): p. 151-159 e5.
• Seckin, T., The Doctor Will See You Now: Recognizing and Treating Endometriosis. 2016.
• Moen MH, Stokstad T. A long-term follow-up study of women with asymptomatic endometriosis diagnosed incidentally at sterilization. Fertil Steril. 2002, 78(4):773-6. doi: 10.1016/s0015-0282(02)03336-8. PMID: 12372455.
• Fedele L, Bianchi S, Zanconato G, Raffaelli R, Berlanda N. Is rectovaginal endometriosis a progressive disease? Am J Obstet Gynecol 2004b, 191:1539-1542. doi: 10.1016/j.ajog.2004.06.104. PMID: 15547522.
• Marsh EE, Laufer MR. Endometriosis in premenarcheal girls who do not have an associated obstructive anomaly. Fertil Steril. 2005 Mar;83(3):758-60. doi: 10.1016/j.fertnstert.2004.08.025. PMID: 15749511.
• Simpson JL, Bischoff FZ, Kamat A, Buster JE, Carson SA. Genetics of endometriosis. Obstet Gynecol Clin North Am. 2003 Mar;30(1):21-40, vii. doi: 10.1016/s0889-8545(02)00051-7. PMID: 12699256.
• https://www.who.int/news-room/fact-sheets/detail/endometriosis