As you may know, Endometriosis is not limited to just your reproductive bits & pieces. It can implant, grow, and fester in many places; the bowel included. But what does that mean? How do you know if it’s on your bowel? Today’s blog will go into that…Read on, dear Reader…read on. Word of warning : I will be using words like fart and poop! Why dance around the subject with flowery words when I feel like I’m a giggly 12-year-old girl?
It is estimated that between 5-15% (and some even doctors guess it’s actually between 3-34%) of women with Endometriosis suffer from Endo on their bowels. Bowel Endometriosis may affect the colon, the rectum, the large intestine, the small intestine, the colon, or the sigmoid colon. The implants may be physically located on the bowels, or even just located adjacent to them in areas like the Pouch of Douglas, uterosacral ligaments, or rectovaginal septum. The close proximity of the inflamed and irritated lesions may be enough to induce bowel Endometriosis symptoms. And these symptoms may also be caused by adhesions pulling or twisting the bowels.
Many symptoms worsen while an EndoWarrior is on their period; however, many also suffer from these symptoms all of the time…and some lucky few don’t suffer from any symptoms (aka Silent Endometriosis). Endo on the bowel can cause pain in the abdomen, bowel, rectum, or rectal bleeding (especially while menstruating). You may feel pain while sitting, farting, pooping, or even having sex. You may even suffer from difficulty pooping, constipation and/or diarrhea, or a sense that you haven’t fully voided after pooping. Other symptoms may be that you feel full after eating just a small amount of food, suffer from bloating, lower back pain, cramping, nausea, decreased appetite, or vomiting.
Bowel Endo and/or adhesions may cause a partial or full intestinal blockage. If this occurs, constipation will worsen. If completely blocked, you can suffer a perforation or tear in your colon which may lead to an infection (which may be fatal…read about Emelia). If the blockage is severe, surgery may be required to clear it or resect (remove a portion of) the damaged bowel.
Just like any case of Endometriosis, the first step toward diagnosis is a detailed medical and symptom history. A physical examination may follow and one possible indicator of bowel Endo is a tender spot inside the vagina near the rectum (this may indicate Endo on the Pouch of Douglas). Dr. Redwine explains the cul-de-sac (aka the Pouch of Douglas) involvement a little bit better,
“When the rectum is involved by endometriosis, it frequently scars forward to the back of the uterus, causing what is known as obliteration of the cul de sac. This indicates the presence of deeply invasive disease in the uterosacral ligaments, the cul de sac, and usually the front wall of the rectum itself with what is called a rectal nodule. The disease can occasionally invade the rear wall of the vagina as well.”
Studies indicate that people who have an obliterated Pouch of Douglas are three times more likely to have bowel Endo than someone without an obliterated cul-de-sac.
Transvaginal ultrasounds may also be beneficial if a physician suspects bowel Endo – those who have ovarian cysts have a 30% chance of having Endo on their bowels. New studies are finding that transvaginal (and transrectum) ultrasounds may be able to “pick up” bowel lesions as masses on the screen and that they may hold a distinct shape of their own.
A CT scan or MRI may be conducted of your pelvic region to rule out other obstructions or masses, as written in this interesting article on the usefulness of pre-diagnosis with imaging studies. Likewise, a colonoscopy, sigmoidoscopy, or barium enema may be used to rule out other GI illnesses; however, they often show up negative for Endometriosis. That’s because the Endo most-often resides outside the bowel…not the inside…so these tests cannot detect Endo.
Unfortunately, the only way to confirm a suspected case of bowel Endo is to cut you open, look inside, and biopsy any discovered lesions.
Like all other forms of Endometriosis, the treatment is pretty much the same:
- Patience – the Wait & See method – if the symptoms are bearable, ride them out. Be patient. Literally, wait and see what happens…or wait for your next surgery;
- Medication – pain killers, NSAIDs, aromatase inhibitors, GnRH antagonists, birth control pills/IUD, or other medications may offer a reduction in symptoms; and,
- Surgery – an excision surgery to remove the Endo implants from the pelvic cavity and bowel would be ideal. But there are those who practice ablation instead. The implants may be shaved from the exterior of the bowel, or a deeper-removal of the lesions may be necessary. Some patients must undergo a bowel resection to remove a portion of the infected bowel if the Endometriosis is too deeply-implanted in the bowel. Your Endo excision surgeon should enlist the help of a colorectal surgeon for this process, as there are risks of serious complications with bowel surgery. Many patients return to a higher quality of life after their excision surgeries.
And, as usual, recurrence is always a possibility…
Dr. Doron Kopelman wrote, “Endometriosis has been described as the great masquerader,” which is so beautifully and (unfortunately) accurately written. Endo on the bowel may be misdiagnosed and dismissed as many other GI issues. Here are a few examples of common misdiagnoses:
- Appendicitis – Endo in the ileum (lower right abdomen) causes pain which is often mistaken as an appendicitis. The symptoms of an appendicitis can include right-sided abdominal pain, constipation, diarrhea, loss of appetite, and bloating.
- Crohn’s Disease – symptoms include constipation, diarrhea, rectal bleeding, and abdominal cramping.
- Diverticulitis – when pouches within the intestine become inflamed, infected, or bleed, the symptoms may be pain, diarrhea, constipation, tenderness, rectal bleeding, and cramping.
- Gastrointestinal carcinoma – a small tumor within the intestines which cause very similar symptoms and/or blockages as bowel Endometriosis.
- Irritable Bowel Syndrome (IBS) – symptoms of IBS and bowel Endo are very similar, including frequent constipation and diarrhea. Dr. Kevin Sinervo addressed the 2013 Medical Conference hosted by The Endometriosis Foundation of America and discussed IBS and Endometriosis.
- Ischemic colitis – caused by an inadequate flow of oxygenated blood to the intestines, symptoms can include cramping, diarrhea, vomiting, and abdominal distension.
- Pelvic inflammatory disease – symptoms may include abdominal pain and pain during/after intercourse.
- Ulcerative colitis – symptoms of ulcerative colitis include an urgency to poop, diarrhea, bloody stool, and abdominal cramps.
And if this weren’t enough? Think of the possibilities : a person may have both Endometriosis and any of these (or other) conditions. One does not negate the other. And just because you have symptoms of bowel Endo doesn’t mean you have bowel Endo…
There have been several studies about bowel Endometriosis, different treatments, different surgeries, various diagnostic tools…and the fact that even post-menopausal patients can develop bowel Endometriosis (with or without hormone replacement therapy). Numerous studies! They can be found below in the “Resources” section of this blog…scroll down.
A 2016 study followed the case of a 40-year-old woman who had a previous hysterectomy. She was having bowel issues and a colonoscopy revealed a mass insider her rectum. It was removed and biopsied, and diagnosed as Endometriosis. This means it was INSIDE her bowel…The authors urge surgeons to be thorough in the removal of Endometriosis in any abdominal surgery, as recurrence an always happen, even post-hysterectomy. They also urge patients to follow-up with any recurring symptoms.
A Jan. 2017 study offers an alternative to colorectal resection, if the situation merits it. Rather than resecting a portion of the bowel, the authors of the study (published in Fertility & Sterility) offer a technique knows as The Rouen Technique, which removes nodules of Endometriosis found within the rectum. Of the 111 women in the study, most stated they had improved gastrointestinal quality of life. Two of those women had a recurrence of the rectal Endometriosis within 2 years: one opted for birth control treatment and the other opted for a second excision using the Rouen Technique. Although this study is self-admittedly weak (no control groups), you may want to print out the article and discuss this possible technique with your healthcare provider.
A Feb. 2017 study follows a 43-year-old woman who suffered from rectal bleeding and constipation. She also had bloody stool during her periods, and burning rectal pain.She had suffered from constipation for several years and had just taken laxatives, abdominal pain, felt like she never quite cleared her bowels when she did poop, and had abdominal bloating. Sh’d never undergone surgeries in the past, and hadn’t been diagnosed with any chronic illnesses. The day of her visit, she didn’t have any abdominal bloating or pain, and her vitals were all normal; her rectal examination was normal. She underwent a colonoscopy to rule out any causes of her symptoms: some of her sigmoid colon appeared red and angry, which a biopsy revealed as chronic inflammation. She was also found to have hemorrhoids. A second colonoscopy was performed and deeper tissue samples were taken; these newly-biopsied deeper samples were found to be Endometriosis. A further medical history review found she had a history of Endometriosis (although how this was confirmed without any prior surgeries is beyond me). She opted for a hysterectomy, removing both ovaries as well. Her symptoms disappeared.
A March 2017 case study was of a 58-year-old woman who suffered from chronic diarrhea and post-menopausal bleeding. During a routine colonscopy, they found a mass extending from her rectum to her sigmoid colon. Biopsies led the physicians to believe it to be Endometriosis. A laparoscopy was performed, the mass was removed, as well as her uterus, cervix, fallopian tubes, and ovaries. Endometriosis was also found on her cervix and the tissues between her uterus and bowel.
An April 2017 letter to the editor featured in Ultrasound in Obstetrics in Gynecology focuses on using high-intensity focused ultrasound energy to burn away deep infiltrating endometriosis that has infiltrated the rectosigmoid colon. Many of us read “ablation” or “burning” and run away, but (butt?) in some instances, it may be the best option for the patient in order to avoid a total resection.
The International Journal of Surgery Case Reports published an article in late 2017 about a 46-year-old woman who went to the hospital because she had been throwing up, was constipated, and her abdomen had been swollen for the past two days. Physicians suspected a small bowel obstruction and confirmed it with imaging studies. The corrective was performed that same day and they found that endometriosis deposits had strictured (pinched off, so to speak) her small bowel. They removed the affected section of bowel and biopsy confirmed the endometriosis diagnosis. The obstruction cleared up after surgery and she was referred to her gynecologist for further management of her Endo.
In January of 2018, the Kaohsiung Journal of Medical Sciences wrote about a 43-year-old woman who had a medical history of chocolate cysts after an excision surgery and had (for the past two months) been having lower left abdominal pain and didn’t poop as much as she had been. Her lower abdominal pain didn’t seem related to food or pooping, and she experienced bloody poop mostly during her menstrual cycle. A physical exam of the lower left abdomen, as well as an internal exam (with a finger) were normal. A colonoscopy found she had a mass inside her intestines. It was surgically removed, along with a portion of her intestines, and confirmed as Endometriosis via biopsy tests.
In November of 2018, I went through my own surgery to remove Endometriosis from my bowel. It had been discovered on my small intestine at the ileocecal valve (where the small intestine meets the large intestine). I had a portion of my small intestine, my colon, my cecum, and my appendix removed. And I’m glad it did as it had created a sort of twisted mass of my guts.
Paripex published a study in January of 2019 of a 28-year-old woman who had a history of infertility and painful periods for seven years. An ultrasound found a mass in her adnexa, which was believed to be Endometriosis. An MRI scan showed a mass within her sigmoid colon. A colonoscopy was attempted, but the mass was so large, they camera could not pass the sigmoid colon. She underwent a laparoscopy and had normal reproductive organs, except she had a cyst on her left ovary. The cyst was removed, as was the portion of her blocked intestines. She underwent a second surgery due to constipation and vomiting, where dense adhesions were found around her bowel resection site. These were cleaned up and additional endometriosis lesions were discovered and she also received an ileostomy bag for the next three months. The bag was removed, her intestines rejoined, and she had no further complaints during follow-up.
A 2019 study published in Hindawi focused on a 41-year-old woman who had a medical history of painful periods and had a prior appendectomy. She went to the ER with nausea, vomiting, acute pain in her lower left torso, and had complained of weakness, fatigue, and weight loss for the last month. Her abdomen was distended and tender. A CT scan showed a mass in her cecum and a complete bowel obstruction. It also showed that her ovary was stuck to her uterus and that her bowels were inflamed. A laparotomy was performed and the cecum mass was found to also involve the ileocecal valve and caused a full blockage of her intestines. Some of her right colon (as well as the mass) were removed. The mass on her ovary was also removed. Pathology reports found that the bluish mass in her cecum blocked 90% of her ileocecal valve, her colon wall was invaded with microscopic evidence of Endometriosis, and the mass removed from the ovary was an Endometrioma. At her follow-up examination, she was symptom-free.
A 2019 study was of a 35-year-old woman who had complaints of constipation and bleeding from her rectum, mostly during her period. She also had bloating and lower abdominal pain. CT scans, barium enemas, a colonoscopy, and inconclusive punch biopsies led the physicians to believe she had a growth, possibly a carcinoma, inside her rectum. She underwent a bowel resection and they removed nearly 4.5 inches of her recto-sigmoid colon. Pathology reports showed that the growth was not a carcinoma; it was instead Endometriosis.
In June 2020, an article was published of a 37-year-old woman who was treated for a small bowel obstruction. Before being hospitalized for the obstruction, she had complaints of not being able to poop or fart for three days, suffered from chronic lower right abdominal pain and she was either always constipated or suffered from diarrhea. Sometimes she had blood in her stool. She also had complaints of painful periods and chronic pelvic pain. A CT scan found a small mass on her cecum, which appeared to have caused a bowel obstruction. Emergency surgery was performed, the mass and a portion of her right colon was removed, and she received a temporary ileostomy bag. Pathology showed Endometriosis of her cecum and ileocecal valve (hey, that’s where mine was!). She was in the hospital for 7 days and had a surgery three months later to reverse the ileostomy. Her chronic pelvic pain complaints dramatically reduced after both surgeries.
On October 21, 2020, I underwent a second bowel resection due to Endometriosis that was discovered on my sigmoid colon during my May 2020 surgery. Prior to my resection, it hurt nearly every time I poo’d: like glass and sandpaper scraping through my guts. And I had lower-left abdominal pain almost daily. A “defect” was found on my rectosigmoid junction and was removed. I also had Endometriosis in other areas of my pelvic cavity, which was also excised. And since then (today is January 1, 2021), I’ve been symptom-free and poopin’ with noooo pain! Woohoo!
A study published in October of 2020 is of a 38-year-old woman who complained of bleeding from the rectum, as well as abdominal pain, nausea, and vomiting for the past week. Physical examination confirmed she had tenderness in the lower left quadrant of her abdomen. A CT scan revealed an ovarian cyst and uterine fibroid, but that was all. A colonoscopy was performed and they found a large mass at her rectosigmoid junction (where the sigmoid colon and rectum meet). A biopsy was done and pathology found it to be Endometriosis. A sigmoidoscopy was later performed and the biopsy repeated, which confirmed the original Endometriosis findings. Her doctors threw a hysterectomy and taking her ovaries, but she declined because she one day wanted children. Instead, she started taking Norethindrone acetate and would seek out surgical treatment to deal with the bowel Endometriosis. The abstract ends without providing the outcome.
Another October 2020 study concerned a 36-year-old female who went to the ER with nausea, vomiting, and abdominal pain. A CT scan was done and showed she had “wall thickening” near the distal small bowel, including the little area that joins to the large intestine. A colonsocopy revealed that the terminal ileum (that small intestine/large intestine junction) had some patchy redness and watery fluid buildup. Biopsies were taken and pathology noted the tissue was “lymphoid aggregates”: harmless, non-cancerous little red bumpies. She was treated for a small bowel obstruction and sent home. They suspected she may have Crohn’s disease, so they started her on medication for such. Several months later, she returned for follow-up imaging of her bowels. It revealed the inflammation of her small intestine had only worsened and a fistula may have begun to form. Due to her ongoing symptoms and worsening inflammation, she underwent surgery and the portion of the inflamed bowels was removed. Can you guess what it was? Pathology found Endometriosis on her small intestines. Unfortunately, it doesn’t tell me how the patient was doing after surgery.
And yet a third October 2020 study from The American Journal of Gastroenterology discusses a 44-year-old female with IBS who went to the doctor with widespread abdominal pain and a previous “abnormal” CT scan. The physical examination and bloodwork were normal. Another CT scan showed a cyst on her left kidney and a mass in her cecum (the pouch at the left end of the large intestines). A colonoscopy showed that her cecum had twisted and had a small lesion on it. A biopsy led them to believe she had active colitis. An MRI was performed and showed a hard mass about an inch big at the tip of her cecum. A laparoscopic surgery ensued and they discovered a “puckered mass of the cecum” near the base of the appendix. The cecum was removed and pathology confirmed “extensive endometriosis of the colonic wall and 2 pericolic lymph nodes.” She was placed on oral contraceptives to manage her Endometriosis symptoms. No references to her outcome or further treatment.
If you suspect you may have Endometriosis on or near your bowel, talk to your physician. Get the ball rolling on diagnostic tests and specialist referrals. Have patience and an open mind…
Now, if you regularly follow my blogs, you’ll know that I was worried that I may have it on my bowel. I’ve got the symptoms (all of them except decreased appetite, nausea, and vomiting). They had disappeared for about a year after my excision surgery, but then since returned. My excision op report stated, “Cul-de-sac was also obliterated and was massively adhered with adhesions from Endometriosis.” Of course I was concerned…I visited my gyno, a GI doctor, and a colorectal surgeon to discuss. BUT…without going in surgically to confirm my suspicions, I was taking the “wait and see” approach. It may be Endo…it may not. My symptoms improved since the colorectal surgeon ordered me to take fiber…but returned, of course. In July 2018, I underwent another excision surgery due to my returned pain in symptoms. And my surgeon found Endometriosis on my small intestine that was too deep to remove. So, I had another surgery in November 2018 to excise MORE endometriosis and included a resection of 7″ of my guts, including a section of my small intestine, the ileocecal valve, appendix, cecum, a portion of my large intestine; all of which came back as bowel Endometriosis. In May 2020, I had my fifth excision surgery and they found deep-infiltrating Endometriosis on my sigmoid colon. So, in October of 2020, I had my second bowel resection. Yep. I have (had) bowel endometriosis.
Thanks for reading!
*Updated January 1, 2021*
American Cancer Society – Signs and Symptoms of Gastrointestinal Stromal Tumors
American College of Gastroenterology Case Reports Journal – Polypoid Endometriosis Presenting as Colonic Mass
BMJ Case Reports – (Abstract; April 2015) Endometriosis Masquerading as Crohn’s Disease in a Patient with Acute Small Bowel Obstruction
Centers for Disease Control and Prevention – Pelvic Inflammatory Disease
Centre for Advanced Reproductive Endosurgery – Bowel Endometriosis
Crohn’s & Colitis Foundation of America – What is Crohn’s Disease?
Crohn’s & Colitis Foundation of America – What is Ulcerative Colitis?
Endometriosis Foundation of America – (video) When IBS is Really Endometriosis on the Bowel
Endometriosis.org – Bowel Symptoms
Endometriosis UK – Endometriosis and the Bowel
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Mount Sinai Hospital – Ischemic Bowel Disease
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Paripex – Indian Journal of Research – (Article; Jan. 2019) A Case Report of Colonic Endometriosis with Colonic Stricture
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University of Pelita Harapan – (Article; June 2020) Case Report: Caecal Endometriosis is Causing Acute Small Bowel Obstruction
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Clinical Medicine Insights Reproductive Health – (Article; Feb. 2016) Relevance of Imaging Examinations in the Surgical Planning of Patients with Bowel Endometriosis
World Journal of Gastroenterology– (Article; April 2015) Role of Colonoscopy in the Diagnostic Work-Up of Bowel Endometriosis
The Obstetrician and Gynecologist – (Article; Jan. 2016) Endometriosis and Irritable Bowel Syndrome: a Dilemma for the Gynaecologist and Gastroenterologist
Asian Journal of Endoscopic Surgery – (Abstract; April 2015) Small Bowel Obstruction Caused by Endometriosis in a Postmenopausal Woman
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa