Know the FACTS

Endometriosis is a chronic inflammatory disease estimated to affect 10 % (190 million) girls, women and individuals assigned female at birth worldwide. In Ireland it is estimated that 155,000 of women are affected by the condition.  Endometriosis occurs where tissue similar to the lining of the womb (uterus) is found elsewhere in the body. Endometriosis can manifest in many different ways, making it difficult to diagnose and treat. In most cases the disease is associated with moderate to severe period pain, pelvic pain and sub-fertility or infertility. In some cases, there might not be any obvious symptoms and the diagnosis could be made  while undergoing other unrelated medical procedures.

Symptoms

Everyone’s experience of endometriosis will be different and symptoms can vary in intensity. It is also important to remember that not everyone with endometriosis will experience symptoms.  Debilitating period pain is not normal and should not be ignored. 

The classic symptoms of endometriosis include: 

 

  • Painful Menstruation (dysmenorrhea)
  • Pelvic Pain (that radiates down the legs or up the back)
  • Painful Intercourse (dyspareunia)
  • Bowel Problems (bloating, constipation, painful bowel movements)
  • Fatigue
  • Premenstrual Syndrome (PMS)
  • Abnormal Menstrual Bleeding
  • Painful Urination
  • Infertility

All of the symptoms listed above could be caused by something other than endometriosis. It is important to speak to your healthcare provider to determine the cause of any symptoms. If your symptoms change following your diagnosis, it is crucial that you address them with your doctor. 

Endometriosis can cause some people to have difficulties  conceiving, and can lead to fertility issues.  In general, surgery to eliminate endometriosis and restore normal anatomy improves fertility. Some people require ART (Assisted Reproductive Technology, such as IVF) to conceive. It is important to note that it is estimated that 60-70% of those with endometriosis can get pregnant spontaneously and surgery is not always needed. 

As endometriosis is a chronic condition, managing its symptoms can be challenging and have an impact on relationships, productivity at work, and overall well being. We would encourage you to always talk to your healthcare provider about all of your symptoms; this will help with management and treatment. 

Causes

Endometriosis is a complex condition that usually affects people from the onset of menstruation right through to menopause. The cause of endometriosis remains unknown. Several theories have been suggested but none fully explain why endometriosis occurs.  Several different factors are considered to contribute to its development, like retrograde menstruation, metaplasia and genetic predisposition.  

Retrograde menstruation occurs when menstrual blood that contains endometrial cells travel back through the fallopian tubes into the pelvic cavity rather than out of the body. This can result in endometrial-like cells being planted outside the uterus where they can grow. It has been argued that those that menstruate can experience some degree of retrograde menstruation. However, this theory cannot explain why endometriosis has occurred in some cases after a hysterectomy, or  why some people who have not menstruated have been diagnosed with endometriosis.

Metaplasia is the process by which one type of cell changes or morphs into another.  This allows cells to adapt to their surroundings in order to better adapt to their environment. This theory would explain how endometriosis cells form spontaneously inside the body – and how they appear in regions such as the lungs and skin. It would also explain the emergence of endometriosis cells in women who do not have a womb, as well as in men who have undergone hormone therapy.

Endometriosis has been suggested to be a genetic condition, with evidence indicating that it can be handed down to future generations via the genes of family members. Some families may be susceptible to endometriosis, but the reasons for this are unknown.

Diagnosis

Endometriosis can develop as early as a person’s first period. Early intervention is crucial to improving quality of life, preventing illness progression, and ensuring fertility is not compromised. Unfortunately, millions of people suffer for years without receiving a diagnosis or appropriate treatment, and the effects can occasionally continue beyond menopause.

There is an international diagnostic delay of 8+ years (currently there are no statistics for Ireland) of an individual first seeing a doctor about their symptoms and receiving a firm diagnosis. This can be for a number of reasons. Many people may think that their symptoms are “normal,” feel too ashamed to ask for help, or struggle to access the services they need. Medical professionals may also contribute to this by failing to identify symptoms, misdiagnosing the condition, or prescribe hormonal therapy (oral contraceptive pill) which can suppress symptoms and not take endometriosis into account as the underlying cause. It is important to discuss the different types of contraceptive pills that are with your doctor as some are better suited for endometriosis and can alleviate symptoms. 

A definitive diagnosis is only possible with a  laparoscopy. A laparoscopy is a surgical technique performed under general anaesthesia in which a thin telescope is inserted into the umbilicus (belly button). This allows your doctor to examine the organs of the pelvis and abdomen. A laparoscopy can enlarge tissues and reveal even minor quantities of illness. Tissue suspected of containing endometriosis is extracted during the laparoscopy and sent to the pathologist to be examined under a microscope to confirm the diagnosis. Endometriosis should be surgically excised and sent to a lab for confirmation (histology). A Laparoscopy is best conducted by a surgeon who specialises in endometriosis treatment. 

Your healthcare provider may suspect endometriosis based on your symptoms and medical background. A physical examination, imaging (Ultrasound, MRI, TVUS), blood tests, and other investigations could be suggested. Although these tests cannot identify endometriosis, they can be helpful in deciding on a course of therapy and next steps.

Stages of Endometriosis

Endometriosis is frequently described as mild, moderate, or severe, or as stage or grade 1- 4 in surgical notes. The American Society of Reproductive Medicine, or ASRM, devised this widely recognized endometriosis stage system. The staging system can provide valuable information, however the system has its limitations. For example, the severity of endometriosis does not always correspond to the amount of pain and discomfort experienced. Minimal or mild endometriosis can be deep infiltrating and can cause symptoms that impede quality of life, whereas severe endometriosis may not. For these and other reasons, research on endometriosis staging is being conducted, and efforts are being made to further our understanding of the disease’s clinical severity and impact. 

✔ ️ Stage I or minimal (point score 1-5) endometriosis manifests as small patches or surface lesions on or around the pelvic cavity. 

✔ Stage II or mild endometriosis is more widespread and presents more implants that can be deep or superficial, and scarring can begin to occur.  It is often found on the ovaries, Pouch of Douglas and uterosacral ligaments. 

✔ Stage III or moderate  endometriosis begins to infiltrate the peritoneum and pelvic organs. There are deep implants present and cysts can develop on one or both ovaries when tissue attaches to the ovaries, resulting in blood and tissue shedding. Blood can collectand turn brown, this is referred to as ‘chocolate cysts’. In this stage, thin bands of tissue known as filmy adhesions may form, which may bind organs together. 

✔ Stage IV or severe  endometriosis affects the majority of the pelvic organs, causing anatomical deformation and adhesions. Other more extreme types of deep infiltrating Endometriosis involves organs both within and outside the pelvic region (bowels, appendix, diaphragm, heart and lungs etc). This stage is classified by a number of  deep  implants and large cysts on at least one ovary. Thick adhesions occur throughout the pelvic area, resulting in extensive scar tissue and a higher chance of infertility.

References

Johnson NP, Hummelshoj L, Adamson GD, Keckstein J, Taylor HS, Abrao MS, Bush D, Kiesel L, Tamimi R, Sharpe-Timms KL, Rombauts L, Giudice LC, for the World Endometriosis Society Sao Paulo Consortium. World Endometriosis Society consensus on the classification of endometriosis. Hum Reprod 2017;32:315-324.

American Society for Reproductive Medicine. Revised American Society for Reproductive Medicine classification of endometriosis: 1996. Fertil Steril 1997;67:817–821.

Haas D, Oppelt P, Shebl O, Shamiyeh A, Schimetta W, Mayer R. Enzian classification: does it correlate with clinical symptoms and the rASRM score? Acta Obstet Gynecol Scand 2013;92:562–566.

Treatment and Management

If you have been diagnosed with endometriosis, you should speak with your doctor about various endometriosis treatment and management options. 

There is currently no cure for endometriosis. The different treatment options available for endometriosis aim to decrease the severity of symptoms and improve the quality of life for individuals living with the condition. 

The most effective treatment is considered to be  a multidisciplinary approach. It Is important to consider treatment options that are best suited to your needs while working with your healthcare team. This is usually determined by your age, severity of symptoms, the extent of endometriosis, whether you intend on having children and your personal preferences.

There are three types of treatments for endometriosis:

  1. Medical treatments
  2. Surgical treatments
  3. Complementary treatments

Medical Treatments

Medical treatments are most often used as a first-line treatment to alleviate symptoms. They are frequently used in combination with surgery.  There are no known medications  that will cure endometriosis but it is important to understand how medications work so you can make informed decisions. Medical treatments are either hormonal and non-hormonal.  All medical treatments are temporary and are reversed once you stop taking the medicine.

Hormonal treatments aim to block or reduce the production of oestrogen in the body and help relieve symptoms. Some common hormonal treatments include the combined oral contraceptive pill, progestogens, Mirena coil, Depo Provera and GnRH analogues. It’s important to keep in mind that these medications can mask symptoms but not the progression of endometriosis, won’t remove adhesions or help improve fertility. Before beginning a treatment, you should explore the different treatments with your doctor. All medications have pros and cons, and you may need to try several different types before finding what’s right for you.

The main symptom of endometriosis is pain and there are various non-hormonal  pain relief treatments to help manage the condition. These include non-steroidal anti-inflammatory drugs (Ibuprofen), codeine-based painkillers and analgesics (paracetamol).  Pain medications work most effectively  when taken on time and before your pain escalates.  Sometimes combinations of medications like anti-inflammatory drugs taken with painkillers can be very effective but it is crucial that you seek expert advice from your medical team. These medications are designed to relieve the pain that can be associated with endometriosis, but they do not reduce the amount of endometriosis. They can be used as a treatment or in combination with other treatments.

Surgical Treatments

Surgery can be done to treat endometriosis and relieve pain by dividing adhesions, removing cysts and/or the endometriosis itself. Laparoscopy (key-hole) is the most common method of surgery for endometriosis since it reduces scarring, pain, and hospital stay while improving visualisation. The degree of the disease is often noted, and images can be taken to explain to you later. The success of surgery is highly dependent on the surgeon’s expertise and the thoroughness of the procedure.

There are cases when the disease is so severe that a laparotomy (surgical incision into the abdominal cavity) is necessary. Before your operation, your doctor will usually let you know how likely this is to happen.

Currently, endometriosis is treated by surgeons using either laser ablation or excision. During ablation surgery, your surgeon will use heat to vaporise the abnormal tissue. This can be referred to as fulguration, coagulation, or cauterization, ablation is also minimally invasive. Excision surgery involves actually cutting out areas of endometriosis using either scissors or lasers. The choice of technique will be based on your condition, your surgeon’s  training, experience, and available resources. Before your procedure, you should be informed about the treatments that will be carried out.  Not all techniques are available at all hospitals.

Fertility

Fertility is not everyone’s number one priority when it comes to having and living with endometriosis, and that’s okay. However, many women and people who suffer from endometriosis will have thought about their fertility and “what does this diagnosis mean for me having a family?”

Having endometriosis does not necessarily mean that you will have problems with fertiltiy. A large numberof women and people with endometriosis will achieve spontaneous conception without the need for assisted reproductive technologies (ART). However, of those who suffer from endometriosis approximately one third of these will experience infertility (Macer and Taylor 2012). Although it is widely known that there is an association between endometriosis and infertility the mechanisms are unclear.

In general, when it comes to fertility, the main factor to consider, for anyone, is age and this holds true for both males and females. After the age of 35 we see a large drop in a female’s ability to conceive and maintain a pregnancy. This is largely because the reserve of eggs available is now significantly decreased and the rate of miscarriages increases. If we consider that it takes approximately 4-11 years to be diagnosed with endometriosis (Agarwal, Chapron et al. 2019) then it is reasonable to suggest that by the time a diagnosis is established, the person could be well into the latter stages of their reproductive years. At this point there are two challenges to face. Age and endometriosis. Therefore, as awareness on endometriosis spreads and more and better research is done, we hope that the effect endometriosis has on fertility will become better understood.

It is important to reiterate that becoming pregnant will not ‘cure’ endometriosis. It was a historical belief that becoming pregnant early on would help to minimise endometriosis. Some people will find a reduction in symptoms during pregnancy, but others may not. Generally, symptoms will reoccur once menstruation resumes.  In Ireland, there are many private fertility clinics where you can attend a consultation and have the basic tests done to see where you stand. However, the cost of fertility treatment is generally between €4-6,000 but often even higher.

Recently, there has been a much-needed development in the accessibility to fertility treatment in Ireland. Since September, the government has allocated €10 million to begin the rollout of publicly funded assisted reproduction. While this news is extremely welcome there are some causes for concern around the ‘criteria’ for treatment. The most relevant aspect for those with endometriosis is the exclusion of couples who have ‘unknown’ causes of infertility. Endometriosis can be one of the ‘unknown’ reasons for infertility. It may fall into this bracket as some people may never have symptoms of endometriosis or may still be awaiting confirmation of disease through surgery etc. It is widely hoped that the criteria will be reconsidered and broadened to be more inclusive going forward.

You can find out further information on publicly funded fertility treatment, here. If you are looking to become pregnant or fertility is a priority for you, talk to your GP so that they can discuss your options.

References 

Agarwal, S. K., et al. (2019). "Clinical diagnosis of endometriosis: a call to action." American journal of obstetrics and gynecology 220(4): 354. e351-354. e312.

Macer, M. L. and H. S. Taylor (2012). " Endometriosis and infertility: a review of the pathogenesis and treatment of endometriosis-associated infertility.& quot; Obstetrics and Gynecology Clinics 39(4): 535-549.

Adenomyosis

Adenomyosis occurs when endometrial tissue grows into the muscular wall of the womb (uterus). It is a common source of pain and abnormal or heavy menstrual bleeding, and its symptoms frequently overlap with those of endometriosis. The two may co-exist in the same person but it is important to remember that it is not the same disease as endometriosis. 

Some other uterine disorders can overlap with the signs and symptoms of adenomyosis, making it difficult to diagnose. Once all other potential explanations of your signs and symptoms have been ruled out, your doctor may suspect that you have adenomyosis. Pelvic imaging such as ultrasound and MRI can detect signs of adenomyosis, but the only way for a definitive diagnosis is  to examine the uterus after hysterectomy (surgery to remove the uterus). 

The treatment and management for adenomyosis will depend on an individual’s symptoms and stage of life. Hormonal treatment can be used to reduce heavy bleeding and relieve pain. Some surgical procedures may also be considered; removing abnormal parts of the muscle layer or lining of the womb. Those with severe adenomyosis who have not responded to other treatments may consider having a hysterectomy. It is important to remember to talk to your doctor about suitable treatment options for you, especially because these procedures can affect your fertility.

Skip to content