Bowel Endometriosis, Symptoms, Why does endo masquerade as IBS?

What is bowel endometriosis?

Endometriosis is an inflammatory reaction to displaced menstrual tissue that lines the inner surface of the uterus, affecting all organs in the pelvic region, including the bowels. The most commonly affected portion of the bowel is in the cul-de-sac region and the anterior portion of the rectum, neighboring the upper part of the vagina. The severity of involvement is often limited to the serosal (outer) layer of the rectum and pararectal locations (the area around the rectum including the surface called the peritoneum). Peritoneal endometriosis is the most prevalent yet the most ignored manifestation of endometriosis, which leads to persistence and/or resumption of symptoms, despite the surgical approach. In peritoneal endo, the endometriosis tissue implants itself outside the bowel walls and continues to grow and menstruate, causing inflammation and symptoms such as stomach pain and painful bowel movements. The bowels can be involved at the serosal level (outer layer of a bowel) or muscular level (further embedded into the tissue), and are usually associated with approximately 18% of all endometriosis cases.

Endometriosis can spread to a variety of locations. It is common for patients to be unsatisfied with their endometriosis surgery when their bowel symptoms go ignored and their bowel lesions are not recognized during surgery. Patients are often misdiagnosed with Irritable Bowel Syndrome (IBS) or Crohn’s disease, as physicians mistakenly attribute the patient’s symptoms to a gastrointestinal cause. It is important to ask whether or not a patient’s bowel symptoms are in sync with their menstrual cycle. If these questions are not asked and the surgery team is not alerted beforehand, then the lesions will go unnoticed, unremoved, and untreated. For these reasons, we find it highly important for our patients to be aware of what bowel endometriosis is, why is it often misdiagnosed, and how it should be properly treated.

Highlights

Where does bowel endometriosis occur in the body?

In bowel endometriosis, lesions implant onto a multitude of areas outside the uterus.

• Peritoneum: This is arguably the most common site for endometriosis lesions to latch onto. Peritoneum endometriosis includes the symptoms of bowel endometriosis and is thus important to evaluate in any endometriosis surgery, including bowel endometriosis cases.
• Cul-de-sac (pouch of Douglas): The bowels around the posterior cul-de-sac (the area between the uterus and rectum), also known as the pouch of Douglas, is one of the most common sites of bowel endometriosis. In this area, the rectum and vagina face each other and are divided by a recto-vaginal septum. Endometriosis in the pouch of Douglas can cause symptoms that not only include painful bowel movements, but also painful sex (as the inflamed affected tissue can infiltrate to the outer wall of the vagina).
• Rectum: Endometriosis can implant onto the outside of the rectum, causing severely painful bowel movements, constipation, and even rectal bleeding.
• Perirectal area: The area directly behind the rectum. Bowel endometriosis lesions that implant in this region cause symptoms of back pain.
• Colon and small intestine: Lesions can attach anywhere on the outside of the intestines. This can often be tricky to spot as it requires a very skilled surgeon with a keen eye to expect the intestines by “running” through them and checking for any suspected lesions.
• Appendix: Often lesions in the appendix or near the small intestine cause symptoms of gas and pain on the right side (particularly the right lower quadrant).

How is bowel endometriosis organized?

Overall, the lesions of the bowel can be multi-focal or multi-centered. Multi-focal means that lesions are found in the same area, but there are multiple locations within that area of tissue. For example, if there are multiple lesions solely in the rectum or upper vagina. Multi-centered lesions are localized to the bowels but are spread diffusely throughout the rectum, colon, appendix, etc. In our own clinical setting, we have found that about 10-15% of our endometriosis cases have nodules that are multi-centered, whereas 20% of the time the lesions are multi-focal. [2]

What are the symptoms of bowel endometriosis?

Symptoms experienced by patients with bowel endometriosis may be exactly the same as those associated with most bowel disorders, and patients are commonly misdiagnosed with IBS, appendicitis, or even Crohn’s disease. To avoid misdiagnosis, it is important to distinguish the subtle—yet critical—differences between bowel endometriosis and other gastrointestinal diseases. If bowel symptoms worsen at different phases of the menstrual cycle, it is likely that endometriosis is involved. For this reason, we encourage patients to record their symptoms as they correlate with their menstrual cycle. Oftentimes, bowel dysfunction caused by bowel endometriosis will be in-sync with a woman’s period, or at least alternate in varying levels of severity during different points in her ovulation cycle. Women may receive many “normal” colonoscopies by gastroenterologists without ever being asked these questions. They are almost always given a “dump diagnosis” or “diagnosis of exclusion” such as IBS. Symptoms of bowel endometriosis include: 

• Painful bowel movements, bowel spasms, and rectal pain, particularly increasing during periods.
• Bloody stool (while rare, can be an indication of extensive endometriosis involvement).
• Constipation, especially during periods.
• Diarrhea and constipation (some patients have diarrhea first then constipation, while others have the reverse).
• Abnormal gas, especially during periods.
• Bloating (fluid congestion).
• Abdomen tenderness, especially in the right lower quadrant due to possible appendix infiltration.
• Painful sex (dyspareunia), due to infiltration of endometriosis to the rectum and posterior cul-de-sac of the uterus.

Diagnosing

How is bowel endometriosis diagnosed?

• Pelvic exam with sonogram: While this clinical form of testing cannot provide a formal diagnosis of endometriosis, it can be helpful for your surgeon to assess points of tenderness. By performing a rectovaginal exam, an experienced surgeon can identify the specific locations of rectal tenderness. This coupled with sonographic imaging can help provide a presumptive diagnosis as to whether the rectum and in turn the bowels, are involved.
• Imaging tests: Additional tests like an MRI and a dual contrast CT scan are necessary to evaluate the condition of the ureters and higher bowel involvement, particularly in the appendix area. The appendix is one of the first organs that often gets infiltrated in cases of bowel endometriosis. For this reason, it can be a key finding in presumptively diagnosing endometriosis before surgery.
• Laparoscopy: In order to formally diagnose and treat bowel endometriosis, laparoscopic surgery must be performed in the operating room. During this procedure, small incisions are made into the abdomen, which allows the surgeon to insert operating instruments and a laparoscope (small camera) that is then used to visualize and evaluate the inner abdominal anatomy. Using this technique, a highly skilled surgeon can navigate through the bowels, which includes the sigmoid colon, small intestines, appendix, etc., and thoroughly inspect them for any suspected endometriosis lesions. Excision of these lesions or complete resection of parts of the bowels will then be conducted depending on the severity of the disease, all of which is performed under laparoscopic visualization, ensuring minimal invasive surgery and optimal recovery.

Why is bowel endometriosis often misdiagnosed?

Bowel symptoms are some of the most prominent of endometriosis symptoms, even in cases of adolescents. Endometriosis symptoms will often start with bowel symptoms (diarrhea, constipation, etc.), causing patients to seek a gastroenterologist, who will proceed to attribute the symptoms to irritable bowel syndrome (IBS), appendicitis, Crohn’s disease, or even colon cancer.[3] These diagnoses are made without biopsy samples or a pathology report. Instead, patients go on to receive multiple colonoscopies and endoscopies and are often diagnosed with IBS, or other bowel disorders, without a full evaluation of what may really be the underlying cause of their bowel symptoms. For these reasons, we consider an IBS diagnosis without evaluation for endometriosis a “dump diagnosis” for a patient’s bowel dysfunction and pain, particularly if they have endometriosis symptoms that coincide with the patient’s period. Patients who receive such a misdiagnosis are improperly treated and experience persistent symptoms, only to find out, years later, that they had endometriosis all along. In these instances, patients can go 5 to 10 years without being treated, sometimes missing the prime reproductive years of their life.

Why can a colonoscopy not be used to diagnose bowel endometriosis?

Whereas inflammation of the bowel caused by IBS materializes exclusively within the intestines, inflammation caused by bowel endometriosis occurs when lesions attach to the outside of the bowels. Procedures such as colonoscopies and endoscopies can only examine the inside of the bowels and are therefore unable to identify inflammation caused by endometriosis. Laparoscopic surgery is the only way to formally and definitively diagnose endometriosis in the bowel region.

Treatment

Surgical treatment: 

When a surgeon looks into the abdomen using laparoscopy, one of the first steps of the procedure should be to evaluate the appendix and ileum of the small intestine. The surgeon will then perform a procedure called, “running the bowels,” which is when they ‘run through’ all of the small intestine, like unwinding a fish hook, all the way to the stomach and check for any suspected lesions or deformity. They will then also check the diaphragm and colon (large intestine). In cases of redundant colon, which is an abnormally long large intestine that causes the widening of the intestine right before the rectum, this “running” procedure is particularly important as the sigmoid (S-shaped extra colon) must be mobilized completely. It is also important to note that this technique takes great skill, and is part of the reason why bowel endometriosis cases are so complicated and present more risk. In turn, this procedure should only be performed by those with vast experience. Once the intestines have been unwound and freed, a rectal probe is put in with a manipulator in order to perform a thorough examination of the rectum and associated rectal vaginal symptoms. The surgeon will then be able to check the bowels for suspected lesions and remove them accordingly, using their preferred technique. The treatments for bowel endometriosis are either the removal of the nodule(s), most of the time including the full thickness of the wall (90%). If the nodules are multiple and obstructive, the treatment is bowel resection surgery. This is particularly difficult and requires special skills in colorectal surgery.

Advanced cases of bowel endometriosis may benefit significantly from definitive surgery, which would consist of a hysterectomy and a deep cleaning of the bowel endometriosis. However, eighty-percent of cases do not require large-scale bowel resection surgeries, and instead lesions will be excised and the bowels repaired by sewing or suturing (this requires the special technique of suturing in “layers”).

Will a hysterectomy treat bowel endometriosis?

No, not necessarily. A hysterectomy is only performed with end-stage endometriosis or if patients prefer to eliminate their fertility. Hysterectomies are often mistakenly viewed as curative surgical treatment for patients with endometriosis [4]. Removal of the uterus eliminates menstruation but it does not treat the endometriosis that has already grown and infiltrated surrounding organs. These lesions, if left untreated, may grow, causing bowel symptoms to persist even after a hysterectomy is performed. When choosing a doctor, it is important to keep in mind that he or she should not only check for endometriosis in the bowels but must also be qualified to remove lesions, even when the treatment plan involves a hysterectomy. Nevertheless, a hysterectomy may be beneficial in certain cases of extensive bowel endometriosis.

What is the recovery time of bowel endometriosis surgery?

In general, as long as the operation is performed laparoscopically, as is the case with all our surgeries, the recovery time is no different than any other standard laparoscopy procedure, and patients are discharged within the day of their surgery. However, for patients who undergo suturing of bowels (conservative surgery), it is advised to stay overnight in the hospital until they pass gas and have their first bowel movement. It is important to note, however, that bowel endometriosis surgery is some of the most difficult and specialized forms of surgery, and for these reasons, complications can often arise. In fact, even with the most precise, skillful surgery, 1 in 20 bowel endometriosis cases present some form of perioperative complication.

What to expect the days after bowel endometriosis surgery?

Following bowel endometriosis surgery, you can expect your bowels to be very sensitive and require a few days to rest before resuming normal function. Below are just a few of the common complications that will arise for a few days following bowel endometriosis surgery, along with suggestions to help relieve these symptoms:

• Bloatedness causing back and shoulder soreness: Back pain is a common complication that can arise temporarily following bowel endometriosis surgery, due to pararectal lesion removal or simply due to bloatedness. During bowel endometriosis surgery, your abdomen will be filled with gas in order to lift the abdominal walls away from the cavity to get a better view of the bowels. After surgery, some of this gas will remain, but there are some remedies for relieving this. 
• Abnormal and painful bowel movement: The first bowel movement following bowel endometriosis surgery can often cause pain and discomfort. While some physicians recommend the use of narcotic pain medications in these instances, we have found that narcotics cause constipation. We instead advise drinking at least 64 ounces of water a day and sometimes even a mild stool softener, such as Colace, if needed. We also recommend keeping your diet light for the first few days (broths, jell-O, and other easily digested food), to give your body the time it needs to recover.

What risks are involved in bowel endometriosis surgery?

Bowel endometriosis surgery is one of the most difficult procedures to perform. It requires great experience and meticulous attention to detail, as a surgeon must go through the entirety of the intestines, from the rectum to the small intestines. For these reasons, bowel surgery with endometriosis is the riskiest of any other endometriosis surgery. In our experience, nearly 1 out of 20 cases (5%) experienced complications following surgery, which can include bloatedness, gassiness, abdominal and rectal pain, etc. While this is a very promising recovery number for a procedure that only a select few can perform and can have a tremendous impact on a patient’s relief of symptoms, we feel it is very important for the patient to be aware of the potential risks.

Can a diet relieve bowel endometriosis symptoms?

Diet and lifestyle changes can be used as a complementary measure in the treatment of bowel endometriosis, particularly for pre-and post-surgery. Because endometriosis causes widespread inflammation causing symptoms such as constipation, diarrhea, and abnormal gas and bloating, patients may experience some symptom relief when following certain anti-inflammatory diets.

What diet can help relieve bowel endometriosis symptoms?

There are many diets that may help, but it is important to understand that every patient is unique and will respond differently. There is no one diet for endometriosis. Consulting with your doctor or nutritionist when making a dietary change and recording the effects of dietary changes on your symptoms may be useful in determining a diet that is appropriate for you.

One study found that a low FODMAP diet can be a highly beneficial measure for relieving symptoms of bowel dysfunction in endometriosis patients.[5] FODMAP is an acronym for “Fermentable oligosaccharides, disaccharides and monosaccharides, and polyols.” Foods containing these molecules—mainly carbohydrates, with the exception of polyols (alcohol)—are poorly absorbed by some human GI tracts. Generally, a low FODMAP diet consists of a low intake of carbohydrates and gluten in order to reduce inflammation. Sugar and carbohydrates are harmful to many conditions including endometriosis, inflammatory diseases, auto-immune diseases, bacterial and yeast infections, and cancer. Sugar nourishes these conditions and worsens their associated symptoms, or in the case of bacteria or yeast, worsens the infection itself.

Our Approach

What is our technique in surgically treating bowel endometriosis?

About 1 in 4 of our endometriosis cases involve the bowels, which is a bit higher than the normal amount of bowel endometriosis cases in the average endometriosis patient. For this reason, we take both great pride and care in surgically treating bowel endometriosis. Having practiced our endometriosis laparoscopic surgery technique for several decades now, our team has great skill in handling even the most complex cases of bowel endometriosis, while at the same time ensuring a minimally invasive surgery.

As discussed earlier, once we make incisions into the abdomen and insert a laparoscope, we first check the appendix and ileum of the small intestine, as these are common sites in which bowel endometriosis lesions often implant. We will then meticulously and thoroughly unwind the intestines, a technique termed “running the bowels,” and insert a rectal probe with a manipulator. This mobilizes the intestines, making them accessible to examine and operate on. Then, we identify and remove suspected endometriosis lesions.

In order to identify bowel endometriosis, a surgeon must not only be looking for these specific lesions, but also have a tremendous amount of experience in repairing the bowels, rectum, and sigmoid colon. This is arguably the most difficult part of bowel endometriosis surgery and is why so many endometriosis cases go improperly treated. In addition to advanced training in laparoscopic surgery and proper identification techniques of endometriosis, if a surgeon is to perform excision of endometriosis they must also have the skill to restore, reconstruct, and repair the infected organs. Many endometriosis lesions are difficult to remove without cutting into the mucosa, especially when the lesions are involved at the muscularis level. In other words, these nodules are transmural with full-thickness involvement (buried within the muscular tissue), and will thus require distortion of the normal bowel anatomy so that the lesions can be removed. This will then require anatomical repairing.

Over the years, we have mastered the technique of proper restoration of the bowels original function once endometriosis lesions are removed. Following excision of bowel endometriosis, we perform all necessary restoration, reconstruction, and repair of the organs that have been operated on. After bowel resection has been completed and the anatomy has been reconstructed, the function of the intestines must then be tested using what is called an “air leak” test (or flat tire test). During this technique, we submerge the bowels in water and methylene blue dye, then apply pressure to the area in order to push air into the intestine and ensure there is no leakage of the newly restored organs and the sutures are properly intact.

Sometimes, more extensive bowel surgery is needed. When an infected organ or area of tissue is diffusely involved, segmental resection and anastomosis may be required. This is a surgical procedure we use that cuts into the bowel in order to remove areas of diffuse endometriosis involvement, followed by subsequent reattachment of the bowels to their newly restored anatomy. Other versions of this include serosal/peritoneum excision, nodulectomy, and disk and segmental excision. At times we may even end up doing multi-centered surgery which involves rectal resection, sigmoid resection, ileocecal resection, and anastomosis. In other words, we can end up doing three different resection techniques with anastomosis in order to thoroughly treat the multiple organ involvement that bowel endometriosis can cause.

What is our method of "team surgery?"

Endometriosis is a multiple-organ disease, meaning it can affect organs other than the reproductive organs, such as the bowels, bladder, diaphragm, and even the lungs and kidneys. For this reason, teamwork is a necessary component of our approach. Bowel endometriosis is particularly complex and requires a multidisciplinary surgical team in order to provide the best quality care. During these surgeries, Dr. Seckin and Dr. Goldstein work with a team of highly skilled laparoscopic surgeons; the colorectal and urology specialists on our team have worked with us for many years, and have extensive experience performing surgeries alongside Dr. Seckin. Our philosophy of endometriosis team practice ensures a high surgical volume of diversification and knowledge, which is crucial to minimize postoperative complications and increase the opportunity for a successful outcome.[6]

How do we ensure a thorough bowel endometriosis surgery?

We strongly believe in increasing the quality of endometriosis surgery by removing endometriosis from every anatomical location including the bowel, bladder, nerves, and ureters. While many surgeons strictly focus on the reproductive system in cases of endometriosis, we believe in conducting a thorough examination of the abdominal anatomy in its entirety, which includes the bowels. A margin-free, complete excision without leaving any disease behind is the gold standard that our team practices. It is also important to not leave behind any scar tissue to ensure a patient their highest chance of recovery and symptom relief. There are also several key components and ideals we uphold in all of our endometriosis surgeries, in order to give the patient the best quality of care that they deserve. These include:

• “Deep excision”: One of the main reasons excision surgery is the most preferred method for removing endometriosis lesions is it removes each lesion in its entirety. While methods of fulguration and laser ablation not only present a risk of harming surrounding healthy tissue, they also only remove lesions superficially. In other words, endometriosis tissue that lies beneath the surface of the tissue can often times go unremoved, increasing a patient’s chances of symptoms resurfacing. “Deep excision” looks to excise each lesion out of the tissue in its entirety, while preserving the borders of the healthy tissue surrounding the lesion.
• “Cold excision”: Techniques of laser ablation and fulguration often rely on heat and electricity to destroy lesions. These are often unnecessary uses of powerful energy sources that are associated with damaging effects on surrounding healthy tissue, while only removing lesions superficially. This is why we thoroughly believe in “cold excision,” excision surgery that stresses the use of minimal to no electricity in procedures, which ultimately best preserves the body's healthy tissue.
• Pathology report: By adopting a method of excision surgery, we are able to preserve removed lesions and send them to a pathology lab, where they are examined by a pathologist under a microscope. This is a crucial component of our surgeries, as it is the best way to not only formally diagnosis endometriosis, but also gain a better understanding of its possible spreading and growth. Many other surgical methods are unable to conduct a pathology report as they look to destroy the endometriosis tissue.
• Minimally invasive surgery: We ensure our patients that our surgeries, even one as complex and thorough as bowel endometriosis excision surgery, are performed with the most comprehensive care, ensuring minimal invasion. By practicing minimally invasive laparoscopic surgery for cases of bowel endometriosis, we look to give our patients their best chance of symptom relief and recovery.
• Experience and skill: At the Seckin Endometriosis Center (SEC), we have been training for decades to surgically treat different types of endometriosis cases through laparoscopy, and bowel endometriosis is no exception. Over time, we have gathered both the skill and knowledge that is highly necessary when it comes to such complex treatment options as surgical excision of bowel endometriosis.

Bowel endometriosis surgeries require a surgeon to complete meticulously-demanding tasks such as “running through” the entirety of the intestines to inspect for endometriosis lesions and reconstructing, repairing, and restoring the bowels after they have been operated on. We have learned that such surgery does not only require great experience but also calls for keen attention to detail. Only through meticulous surgical execution can a surgeon remove endometriosis in the bowels. By removing these lesions, which otherwise would go undetected, we provide our patients with their highest chance of recovery and symptom relief. 

Patient Story

As noted above, while bowel endometriosis may be prevalent in less than 20% of endometriosis cases, in our practice nearly one in every four of our patients show signs of possible bowel endometriosis. For this reason, we have a number of bowel endometriosis stories from patients who underwent bowel excision and resection surgery. Meet Patrice M., who was rushed to the ER due to an ovarian cyst bursting in her right ovary, only to find that her endometriosis had spread to the bowels.

Read more stories of patients who had surgery for endometriosis after their disease spread to the bowels, including the rectum, appendix, and colon, in our testimony section.

References

1. Endometriosis Foundation of America https://www.endofound.org/endometriosis.
2. Seckin, T., The Doctor Will See You Now: Recognizing and Treating Endometriosis. 2016.
3. Samet, Jonathan D. et al,. Colonic Endometriosis Mimicking Colon Cancer on a Virtual Colonoscopy Study: A Potential Pitfall in Diagnosis. National Center for Biotechnology Information, November 8th, 2009.
4. B. Rizk, et al. Recurrence of endometriosis after hysterectomy. National Center for Biotechnology Information, 2014: p. 219-227.
5. Judith S. Moore., Endometriosis in patients with irritable bowel syndrome: Specific symptomatic and demographic profile, and response to the low FODMAP diet. The Australian and New Zealand Journal of Obstetrics and Gynecology, Volume 57, Issue 2 April 2017: p. 201-205.
6. Wolthuis, Albert M., et al. Bowel endometriosis: Colorectal surgeon’s perspective in a multidisciplinary surgical team. National Center for Biotechnology Information, Nov. 14, 2014.