What is Stage 4 Endometriosis?

Stage 4 endometriosis represents the most severe manifestation of this condition, characterized by the abnormal growth of tissue resembling the uterine lining outside the uterus. This displaced tissue can be found in various locations within the reproductive system, such as the ovaries, fallopian tubes, and cervix, or even beyond the pelvic region. 

Despite its location, this aberrant tissue may react to hormonal fluctuations in the menstrual cycle, leading to:

• inflammation, scarring and painful cysts 
• fibrous tissue formation called ‘adhesions’ that if located between reproductive organs can cause them to “stick” together

The classification of endometriosis stages depends on the location, extent of spread, and invasion into surrounding tissues. It is also common for those with stage 4 endometriosis to have multiple adhesions in addition to inflammation and scar tissue extending beyond the reproductive tract and found on the bladder, bowel, and rectum – causing deep pain during urination and bowel movements.

While advanced stages typically correlate with increased severity of symptoms, it’s noteworthy that some individuals with stage 4 endometriosis may exhibit only moderate symptoms or none at all. 

Typical manifestations include:

• Pelvic pain, particularly during menstruation and ovulation
• Pain during intercourse
• Painful bowel movements
• Painful urination
• Heavy or irregular periods
• Fatigue
• Infertility

Diagnosis often involves pelvic examination to detect cysts or scar tissue behind the uterus, along with imaging tests like ultrasound or MRI, although these methods aren’t always definitive for diagnosing endometriosis.

The gold standard for diagnosing endometriosis remains laparoscopy, a minimally invasive surgical procedure. During laparoscopy, a small incision is made in the abdomen to introduce a laparoscope, allowing for direct visualization of the pelvic cavity. This procedure enables thorough examination for evidence of endometriosis and the excision of diseased tissue for pathological evaluation. Notably, if performed by a skilled surgeon, excision of endometriosis lesions can be accomplished during the same surgical intervention, offering both diagnosis and treatment simultaneously.

The approach to managing stage 4 endometriosis typically entails surgical intervention to excise the endometriosis implants and scar tissue. Additionally, hormone therapy may be incorporated to alleviate symptoms. This therapy may involve medications aimed at suppressing ovulation, such as combined oral contraceptives (birth control pills), or other hormonal suppression agents like progesterone-only pills, progesterone intrauterine devices (IUDs), or gonadotropin-releasing hormone (GnRH) agonists and/or antagonists.

Endometriosis Staging System(s)

Over the past four decades, various classification systems for endometriosis have emerged. The most commonly used system is the American Society for Reproductive Medicine (ASRM) system, which aims to assess endometriosis’s impact on fertility using a point system. Despite the widespread use of the 1996 ASRM classification, it overlooks the surgical complexity involved in removing endometriosis lesions. Moreover, it does not reflect the patient’s pain or where the lesions are located. It is also important to note that the stage of endometriosis does not correlate to pain level or severity of symptoms. Patients with stage 1 endometriosis can have enormous pain while those with stage 4 endometriosis may have minimal or no pain.  

Since 1996, new classification systems have emerged. These include the 2010 Endometriosis Fertility Index, designed to predict post-surgical pregnancy rates, and the Enzian classification system, which aids in categorizing deep infiltrating endometriosis without utilizing a point-based scoring method.

In 2021, the American Association of Gynecological Laparoscopists (AAGL) introduced a revamped staging system for endometriosis that offers a more comprehensive and standardized classification of the disease. By integrating factors such as lesion depth, size, location, and the existence of adhesions, the new system strives to overcome the inconsistencies and failure to capture the intricacies of endometriosis the previous staging systems lacked.

Is Stage 4 Endometriosis Serious?

Stage 4 endometriosis, the most advanced and severe stage of the condition, denotes a substantial presence of endometrial-like tissue beyond the confines of the uterus. This can manifest as pelvic and abdominal inflammation, along with deep-seated endometriosis, fostering extensive adhesions that may bind organs together, resulting in anatomical distortion and potential complications, such as fallopian tube obstruction impacting fertility.

Infertility is strongly linked with stage 4 endometriosis due to the abundance of implants, adhesions encasing the ovaries, and pelvic inflammation, all of which can hinder conception. Depending on the location and depth of the endometriosis lesions, complications like bowel obstruction, rectal bleeding, painful urination, or, in rare instances, respiratory issues may arise. While not universal, individuals with stage 4 endometriosis often experience heightened pain during menstruation, ovulation, intercourse, bowel movements, or urination, attributed to the widespread inflammation disrupting organ function.

Treatment options exist for stage 4 endometriosis, even in cases of infertility. Surgical intervention aimed at removing implants and scar tissue, with or without adjunct hormonal therapies, can offer substantial relief from symptoms and potentially enhance fertility prospects. It’s crucial to recognize that despite the severity of stage 4 endometriosis, effective treatment avenues are accessible.

Stage 4 Endometriosis Effect on Fertility

Stage 4 endometriosis can pose significant challenges to conception, potentially hindering spontaneous pregnancy. Inflamed reproductive organs can disrupt ovulation patterns and diminish egg quality. The presence of endometrial-like tissues on the ovaries can lead to the formation of ovarian cysts (endometriomas), damaging ovarian tissue and depleting the ovarian reserve, essential for fertilization.

Extensive scar tissue and adhesions characteristic of stage 4 endometriosis can alter pelvic anatomy, obstructing or harming the fallopian tubes, thus impeding the fertilization process or preventing embryo implantation in the uterus. Severe tube damage may even result in ectopic pregnancy, a grave complication of endometriosis.

Surprisingly, inflammatory molecules linked to endometriosis can impair sperm motility and their ability to reach and fertilize an egg. Healthy sperm morphology is crucial for efficient movement through the reproductive tract, but inflammation caused by endometriosis can distort sperm shape, hindering their journey and potentially damaging sperm DNA, leading to fertilization issues or miscarriage.
Furthermore, even in cases where conception occurs, stage 4 endometriosis can complicate pregnancy, elevating the risk of miscarriage, premature delivery, and low birth weight in babies compared to those unaffected by the disease. While many women with stage 4 endometriosis may encounter fertility difficulties, some may conceive naturally without trouble. Additionally, surgical intervention to remove endometriotic implants, scar tissue, and ovarian cysts can significantly enhance the likelihood of natural conception or improve success rates in assisted reproductive techniques like IVF.

Symptoms of Stage 4 Endometriosis

Endometriosis commonly presents with pelvic discomfort, particularly during menstrual cycles. However, in advanced cases such as stage 4, this pain may persist despite conventional pain relief methods, intensifying during ovulation and menstruation. Endometriosis affecting the bowel or bladder can cause discomfort during urination or bowel movements, leading to symptoms like nausea, vomiting, bloating, constipation, or diarrhea. Hormonal imbalances often contribute to heavy menstrual bleeding or irregular periods, accompanied by inter-menstrual spotting and chronic fatigue. In cases where endometriosis spreads to the diaphragm (thoracic endometriosis), individuals may experience chest pain, shoulder pain or shortness of breath.

It’s important to note that the correlation between pain severity and endometriosis stage can be misleading, as severe pain can occur with lower-stage endometriosis and vice versa. Despite the challenges associated with stage 4 endometriosis, surgical excision done by an endometriosis specialist can offer relief from symptoms and enhance overall quality of life.

Stage 4 Endometriosis Complications

Stage 4 endometriosis can precipitate a spectrum of complications, some of which are notably severe, including:

• Infertility stemming from altered anatomy, inflammation, and compromised ovarian function.
• Persistent or cyclical pelvic pain, often exacerbated during sexual intercourse, bowel movements, or urination.
• Formation of blood-filled cysts called endometriomas, on the ovaries, causing damage to healthy ovarian tissue and impeding fertility.
• Development of scar tissue caused by the inflammation, known as adhesions, leading to organ adhesion, distortion of anatomy, pain, and potential infertility.
• Bowel complications, such as obstruction, constipation, diarrhea, painful bowel movements, and rectal bleeding.
• Urinary issues, including painful urination, blood in urine, urinary urgency, and/or frequency.
• Potential kidney compromise due to ureteral compression, resulting in urine backup and slow kidney failure (hydroureter or hydronephrosis).
• Respiratory challenges like shortness of breath and/or chest pain.
• Menstrual cycle-related lung collapse (catamenial pneumothorax).
• Mental health struggles, such as depression and anxiety, stemming from the daily burden of managing endometriosis.

It’s important to note that not all individuals experience every symptom listed. Treatment options such as surgery and hormonal therapies can mitigate the risk of complications, alleviate existing issues, and enhance fertility outcomes. Timely diagnosis and intervention hold the potential to halt disease progression and mitigate the likelihood of severe complications.

How Do I Know if I Have Stage 4 Endometriosis?

Determining whether you have stage 4 endometriosis solely based on symptoms can be challenging due to symptom overlap across all stages of the condition. The severity of symptoms doesn’t necessarily correlate with the extent of the disease. Some individuals with stage 4 endometriosis may experience few or no symptoms at all.

While imaging tests can sometimes suggest the presence of deep endometriosis, the gold standard for diagnosis remains laparoscopy. This minimally invasive surgical procedure involves inserting a small camera into the abdomen, allowing surgeons to directly visualize and stage the endometriosis, take biopsies, and if performed by an endometriosis excision specialist, initiate surgical treatment.

If you are experiencing any of the following, consulting with an endometriosis specialist is recommended:

• Severe or worsening pelvic pain, especially during periods
• Painful intercourse
• Painful bowel movements or urination, particularly during your menstrual cycle
• Heavy or irregular periods
• Difficulty conceiving
• Unexplained fatigue

What’s the Risk of Untreated Stage 4 Endometriosis?

Untreated stage 4 endometriosis carries significant health risks, primarily due to the chronic inflammation and scarring that result in escalating, persistent pain. Without intervention, endometriosis can advance, causing deeper organ infiltration and heightened scar tissue formation, complicating future treatment endeavors.

Stage 4 endometriosis markedly correlates with infertility, and without treatment, the likelihood of natural conception significantly diminishes. Roughly 30% to 50% of women experiencing infertility have endometriosis. Even with assisted reproductive technology, achieving pregnancy becomes more challenging, with elevated risks of miscarriage and other complications. Endometriosis affecting the gastrointestinal or urinary tract can deteriorate over time, triggering severe symptoms like constipation, diarrhea, painful bowel movements, and urinary issues, potentially leading to kidney complications.

In severe instances, untreated endometriosis can extend beyond the pelvic region, affecting organs such as the diaphragm, lungs, liver, and kidneys, precipitating further complications depending on the affected area. Prolonged untreated endometriosis heightens the risk of specific ovarian, endometrial cancer and breast cancer, necessitating regular screenings. Additionally, enduring chronic pain, infertility, and the overall burden of untreated endometriosis can profoundly impact emotional well-being, escalating the risk of depression and anxiety.

The manifestation and progression of these risks vary among individuals. However, even in cases of stage 4 endometriosis, treatment options like surgery and hormonal therapies can effectively alleviate symptoms, enhance fertility prospects, and mitigate the risk of long-term complications.

Treatment Options for Stage 4 Endometriosis

“The added advantage of laparoscopy in endometriosis is that your diagnosis can be confirmed and treatment can be carried out at the same time. It can also rule out some other conditions that may be contributing to your symptoms. Studies have shown that five years after surgery, up to 70 per cent of women will have no evidence of endometriosis returning””. – The Woman’s Royal Hospital

Effective treatment options exist for alleviating symptoms, enhancing fertility, and averting complications associated with stage 4 endometriosis. Laparoscopic excision surgery stands out as the gold standard, enabling the removal of endometriosis and scar tissue (adhesions). This minimally invasive procedure allows for a comprehensive examination of pelvic structures, including the uterus, fallopian tubes, ovaries, bowel, bladder, and the peritoneum lining the pelvic sidewall.

Laparoscopic excision surgery not only confirms diagnosis but also addresses the root cause, providing immediate relief. It can also boost fertility by eliminating endometriosis implants that obstruct fallopian tubes or damage ovarian health. If natural conception remains elusive post-surgery, assisted reproductive technologies like in-vitro fertilization (IVF) may be necessary.

The chronic pain and inflammation often accompanying stage 4 endometriosis is generally managed with medications in combination with adjuvant therapies, such as:

• Over-the-counter anti-inflammatory pain relievers (NSAIDs like aspirin, ibuprofen, etc).
• Pelvic floor physical therapy – to help retrain the pelvic floor muscles after excision surgery
• Physiatry or Pain Management – to help optimize pain management strategies with trigger point injections, prescription medications to downregulate the central nervous system or decrease nerve pain
• Acupuncture – to help reduce inflammation and improve blood flow

While these treatments cannot cure endometriosis, they effectively alleviate symptoms, enhancing overall quality of life and potentially reducing the need for further surgeries.

Timely detection and treatment of stage 4 endometriosis are paramount. Surgical intervention, coupled with hormonal therapy and pain management, significantly improves well-being and optimizes chances of future fertility.