Endometriosis & The Bowel

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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.

Symptoms

Many symptoms worsen while a woman is on her period; however, many women 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.  There’s even a link between bowel Endometriosis and infertility, although a 2017 study indicates that women who undergo excision surgery may have increased fertility.

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.

Diagnostic Tests

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 women who have an obliterated Pouch of Douglas are three times more likely to have bowel Endo than women without an obliterated cul-de-sac.

Transvaginal ultrasounds may also be beneficial if a physician suspects bowel Endo – women 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.  An interesting article on the usefulness of pre-diagnosis with imaging studies may be found here.  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 the lesions.

Treatment

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 excision 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.  The implants may be shaved from the exterior of the bowel, or a deeper-removal of the lesions may be necessary.  Some women 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 women return to a higher quality of life after their excision surgeries.

And, as usual, recurrence is always a possibility…

Misdiagnoses

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.  You can watch the video or read the transcript here.
  • 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 woman 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…

SCIENCE!

There have been several studies about bowel Endometriosis, different treatments, different surgeries, various diagnostic tools…and the fact that even post-menopausal women 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 in order to avoid a total resection.

What Now?

If you suspect you may have Endometrios 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 have 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’m taking the “wait and see” approach.  It may be Endo…it may not.  My symptoms have drastically improved since the colorectal surgeon ordered me to take fiber…so we’ll see what happens.  Each doctor understands that if I do ever go in for another excision surgery, my bowels will be a priority to thoroughly inspect for Endo.

What about you?  Do you suffer from these symptoms?  What have you done?  Or have you received the actual diagnosis of bowel Endo? Share your story with us!  Either drop a comment below, or click on this link and submit it so I can share it with the masses.

Thanks for reading!

Yours,

Lisa

*Updated May 3, 2017*

Resources:

American Cancer Society – Signs and Symptoms of Gastrointestinal Stromal Tumors

American College of Gastroenterology Case Reports JournalPolypoid 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 PreventionPelvic Inflammatory Disease

Centre for Advanced Reproductive EndosurgeryBowel Endometriosis

Crohn’s & Colitis Foundation of AmericaWhat is Crohn’s Disease?

Crohn’s & Colitis Foundation of AmericaWhat is Ulcerative Colitis?

Endometriosis Foundation of America – (video) When IBS is Really Endometriosis on the Bowel

Endometriosis.orgBowel Symptoms

Endometriosis UKEndometriosis and the Bowel

European Journal of Obstetrics & Gynecology and Reproductive BiologyColorectal Endometriosis and Fertility

Fertility & Sterility – (Article; Jan. 2017) Functional Outcomes After Disc Excision in Deep Endometriosis of the Rectum Using Transanal Staplers: A Series of 111 Consecutive Patients

Gastroenterology Research – (Article; Feb. 2017) Colonic Endometriosis: Dig Deeper for Diganosis

Harvard Health Publications Diverticulosis and diverticulitis

JAMA Internal Medicine – (Abstract; 1995) Intestinal Endometriosis Masquerading as Common Digestive Disorders

Journal of Ultrasound in Medicine – (Abstract; March 2015) Deep Infiltrating Endometriosis of the Bowel Wall

LivestrongGastrointestinal Endometriosis Symptoms

Mount Sinai HospitalIschemic Bowel Disease

National Institute of Diabetes and Digestive and Kidney DiseasesSymptoms and Causes of Appendicitis

Nezhat.orgBowel & Bladder Endometriosis Symptoms

OBGYN.netIntestinal Endometriosis

Oxford Journals Human Reproduction – (Abstract; Nov. 2003) Preferential Infiltration of Large Bowel Endometriosis Along the Nerves of the Colon

Oxford Journals Human Reproduction – (Article; 2010) Transvaginal Ultrasonography with Bowel Preparation is Able to Predict the Number of Lesions and Rectosigmoid Layers Affected in Cases of Deep Endometriosis, Defining Surgical Strategy

Pakistan Journal of Medical Sciences – (Article; 2016) Diagnosis and Surgical Treatments of Isolated Rectal Endometriosis: Long Term Complication of Incomplete Treatment for Pelvic Endometriosis

SciElo Brazil – (Article; July 2008) Epigastric Pain Relating to Menses Can Be a Symptom of Bowel Endometriosis

Science Direct – (Abstract; Nov. 2015) Bowel Complications in Endometriosis Surgery

Science Direct – (Abstract; Jan. 2016) Computed Tomography-Based Virtual Colonoscopy in the Assessment of Bowel Endometriosis: the Surgeon’s Point of View

Science Direct – (Abstract; June 2011) Is Pouch of Douglas Obliteration a Marker of Bowel Endometriosis?

Science Direct – (Abstract; Oct. 1994) Mucosal Changes in the Large Bowel with Endometriosis: a Possible Cause of Misdiagnosis of Colitis?

Science Direct – (Abstract; Dec. 2002) Sigmoid Endometriosis in a Postmenopausal Woman

Science Direct – (Abstract; Feb. 2016) Surgical Treatment of Deep Infiltrating Rectal Endometriosis: In Favor of Less Aggressive Surgery

Society of Laparoendoscopic SurgeonsLaparoscopic Management of Intestinal Endometriosis

Springer Link – (Feb. 2016) Letter to the Editor: Recurrent Symptoms of Gastrointestinal Tract Caused by Isolated Endometriosis in a Middle-Aged Female

Springer Link – (Abstract; May 1994) Small Bowel Endometriosis Masquerading as Regional Enteritis

Ultrasound in Obstetrics & Gynecology – (Article; Feb. 2011) Diagnostic Accuracy of Transvaginal Ultrasound for Non-Invasive Diagnosis of Bowel Endometriosis: Systematic Review and Meta-Analysis

Ultrasound in Obstetrics & Gynecology – (Letter to Editor; April 2017) Transrectal High-Intensity Focused Ultrasound as Focal Therapy for Posterior Deep Invasive Endometriosis

US National Library of Medicine – (Article; Nov. 2014) Bowel Endometriosis: Colorectal Surgeon’s Perspective in a Multidisciplinary Surgical Team

US National Library of Medicine – (Article; Dec. 2015) Colorectal Resection in Deep Pelvic Endometriosis: Surgical Technique and Post-Operative Complications

US National Library of Medicine – (Article; May 1973) Endometriosis of the Bowel: Role of Bowel Resection, Superficial Excision and Oophorectomy in Treatment

US National Library of Medicine – (Article; Feb. 2016) Relevance of Imaging Examinations in the Surgical Planning of Patients with Bowel Endometriosis

US National Library of Medicine – (Article; April 2015) Role of Colonoscopy in the Diagnostic Work-Up of Bowel Endometriosis

Wiley Online Library – (Article; Jan. 2016) Endometriosis and Irritable Bowel Syndrome: a Dilemma for the Gynaecologist and Gastroenterologist

Wiley Online Library – (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

17 thoughts on “Endometriosis & The Bowel

    1. ❤ I'm so glad it was helpful, Toni! Looking forward to meeting you! And these symptoms always come up at our support group meetings; nope – you're not alone in these symptoms. Not one bit. 😉

      Like

  1. Hi Lisa, when I first had my endo surgery back in 1995 my gyno said it was also on the outside of my bowel and that he didn’t take a lot of it off as he didn’t want to damage my bowel. I have had a lot of bowel problems over the years and had 2 colonoscopies which they found polyps, but still the symptoms as you have listed have remained. I am booked in to see a gyno next week to discuss my endo and will definately be mentioning the bowel problems too. Thanks do much for the information. Have a great day, Dayna

    Liked by 1 person

    1. Dayna, you’re SO welcome! Good luck with the discussion with your gyno! Keep us posted. My gyno, the GI, and the colorectal surgeon all agreed that my symptoms *could* be Endo on the bowels, but without surgery, we can’t confirm it. My next gyno appointment is in April and after researching today I’m going to be asking for another transvaginal ultrasound. I haven’t had one in over a year and with the return of my symptoms, I’d like one. 🙂 We can be our own advocate. And I’m proud of you for deciding to talk to yours further 🙂

      Liked by 1 person

  2. Even before being diagnosed with endo through laparascopy, I had issues with bowel/rectal pain during my period. The lap confirmed adhesions on my bowel. Things got better after most of the adhesions were removed, and then I got pregnant 2 years later and had a 2 year respite from good old Aunt Flow. Alas, the pain is back. 😦 I’m one of the lucky ones who has pain only during my period (pain, constipation, and bleeding), so once we’re done building our family, I will talk to my OB about a permanent ban on my period.

    Liked by 1 person

  3. I have a sister who had severe endometriosis and a hysterectomy. Now I have been struggling with frequent bouts of diverticulitis and rounds of antibiotics. But each bout of diverticulitis brings on horrible pain, not only in the colon but in the area of my uterus. Along with the usual diverticulitis sx. I have always had horrible periods, pain and heavy bleeding. I have an appointment in the next month with my gyn and look forward to asking about this.
    Thanks so much for your post. Maybe it is time to stop seeing these things in isolation.

    Liked by 1 person

  4. Thanks so much for this info Lisa. My daughter has had continual diarrhea for nearly a year. It started 7 months after she delivered her first baby; her periods resumed a few weeks after that. She has always had very painful periods but has never officially been diagnosed with endometriosis.
    In investigating her diarrhea, she was found to have an intestinal parasite but several rounds of antibiotics have not cleared it and the diarrhea continues. Her doctor is looking for other causes and she will have a colonoscopy soon.
    The doctor didn’t consider bowel endometriosis because “she has the diarrhea throughout the month not just during her period”. From my reading I understand there is a possibility that diarrhea may be constant with endometriosis, not just cyclical.
    In your understanding of bowel endometriosis is this a possibility? If so, we will encourage my daughter’s dr to not automatically dismiss it as a possible cause.
    Thank you so much for your help Lisa.

    Like

    1. It could be. But it could also be many other things. I glad go hear she has a colonoscopy scheduled; pursue every avenue. But, correct, Endometriosis pain any symptoms may not stick with the monthly flow. Many women suffer Symptoms often and some women…always. wishing your daughter the best of luck! And you strength.

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  5. Thank you so much for this article!
    I had my hysterectomy in July after years of increasingly worrisome symptoms that ranged from abdominal pain, fatigue, diarrhea, and of course extremely heavy periods (10-12 days total). Initially, I was diagnosed as extremely anemic, my general practitioner then sent me to my gyno. Found out that I have what I affectionately refer to as an over achieving uterus (enlarged) which attributed to the anemia, and received iron infusions due to how low my blood iron was. Also, via ultra sound, found that I had a very large fibroid. Due to the size of the fibroid and that it had started to calcify, as well as the size of my uterus, it was determined to perform open abdominal surgery. During surgery, my doctor found that at some point, I had suffered from endo. My right ovary was fused to my uterus, and my cervix had adhered to my rectum. I was initially going to keep my ovaries, so I still have the left ovary. The surgeon called in a colorectal surgeon, and they together determined it best to leave my uterus as they did not think I needed to receive a colostomy bag. (I still am thankful they made that call) They removed as much of tissue as they could, leaving my good ol cervix behind. I can’t believe how much better I feel. After reading your article, I feel I’m better equipped in case I have further issues. Thank you thank you thank you thank you!

    Liked by 1 person

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