Endometriosis has been found in every organ and anatomical structure in the body except the spleen. However, the lower abdominal cavity (pelvic cavity) is the most common general area where endometriosis occurs, and the most common cites include the peritoneum (lining of the pelvic area), rectouterine pouch (also called the Pouch of Douglas or or cul-de-sac), rectovaginal septum, rectovaginal septum, uterosacral ligaments, ovaries, fallopian tubes, all over the outside of the uterus, including underneath it and behind it, the appendix, bowel, bladder, and rectum. Meanwhile, adenomyosis, thought to be at least a cousin of endometriosis, if not simply another form of the disorder, occurs inside of the uterus, with the endometrial-like cells growing into the muscular wall of the uterus instead of outside of the uterus, like endometriosis does.

While less common, endometriosis can also grow in other areas, including on blood vessels, the cervix, diaphragm, lungs, nerves, ureters, vagina, and inside of cesarean or other surgical scars.

Rare cases of endometriosis
Although exceedingly rare, endometriosis can even invade other vital organs and structures such as the kidneys, the eyes, liver, pancreas, brain, bone, heart, skin, and nasal cavity.

Although symptoms can vary considerably, the most common are:

• extremely painful periods
• pain just before or after your period
• pelvic pain at any time during the month
• pain during or after sexual intercourse
• difficulty getting pregnant (infertility)
• nausea and vomiting
• severe abdominal bloating
• pain during ovulation
• pain or bleeding with bowel movements
• other bowel symptoms (ie, pain with bowel movements/ constipation/ diarrhea intestinal pain/upset stomach)
• other bowel/gastrointestinal symptoms (acid reflux, loss of appetite, nausea with eating)
• pain or bleeding with urination
• other bladder symptoms (difficulty voiding/urgency/frequent urination/ incontinence)
• pain in the lower back
• pain in the groin area
• heavy periods
• more frequent periods
• other, irregular bleeding
• fainting/falling unconscious (due to pain)
• pain that mimics appendicitis
• pain that mimics celiac disease
• pain that mimics Crohn’s Disease and/or irritable bowel syndrome
• pain that mimics interstitial cystitis
• fatigue

A woman who has a mother or sister with endometriosis is much more likely to develop endometriosis than other women.

You are also more likely to have endometriosis if you:

• Started your period at a young age
• Never had children
• Have frequent periods or ones that last 7 or more days
• Have a closed or otherwise blocked hymen (imperforate hymen, congenital aplasia), which blocks the flow of menstrual blood out of your body during menstruation (also called Mayer-Rokitansky-Kster-Hauser (MRKH) syndrome)
• Have other uterine abnormalities such as a double uterus, septate uterus, or bicornuate uterus
• Have fibroids

Unlike normal endometrial cells found in the lining of the uterus, these errant endometriotic growths do not get expelled from your body each month as a period. Instead, they implant and begin reacting to the monthly hormones that trigger menstruation, causing them to bleed and shed and grow, month after month and year after year if left untreated. Although these endometriotic growths are benign (not cancer), it appears that the body still recognizes that they shouldn’t be growing outside of the uterus, and therefore usually launches an inflammatory response in order to try to destroy them. As a result, the affected areas become extremely inflamed and therefore potentially extremely painful. This chronic pro-inflammatory environment eventually leads to elevated cytokine-prostaglandin levels which contribute to the chronic pain. Blood and pus-filled endometriotic cysts may also form, which can become twisted (called torsion) and/or burst open and cause still more pain, bleeding, infection, and another cascade of acute inflammatory responses. Endometriosis can also grow directly onto nerves, which can cause excruciating pain, similar to the way that the nerve-invading disorder shingles does.

As mentioned, it also appears that endometriotic growths can generate their own supply of blood vessels and nerves, which increases the number of pain receptors and therefore contributes to heightened pain responses. Eventually, scar tissue and other symptoms of endometriosis develop. In fact, scar tissue itself can cause severe pain. For example, in cases when endometriosis has invaded the ureters, scar tissue can cause these organs to close up (constrict), which can lead to severe kidney infections and an inability to completely void when urinating. Bowel endometriosis, on the other hand, can cause severe bowel obstructions and/or tiny perforations (holes), allowing the contents of the bowel to leak out into the pelvic cavity, which can cause an extremely painful, life-threatening medical emergency. In severe cases endometriosis can even completely destroy organs. For example, while most know that endometriosis can totally destroy the ovaries, in rare cases some women have even lost a kidney due to this confounding disorder.

There is no cure for endometriosis but a combination of medical and surgical treatment can significant improve the symptoms. Surgical treatment helps to remove all the visible disease while the medical treatment can help to reduce the recurrence and keep the symptoms away.

Some have claimed that endometriosis can be cured by a thorough excision surgery or by pregnancy or hysterectomy or medicines or life style changes. As much as we wish there were a cure, unfortunately, these claims are absolutely untrue. Surgery does not cure endometriosis; lasers do not cure endometiosis; pregnancy does not cure endometriosis; hysterectomy does not cure endometriosis; menopause does not cure endometriosis; birth control pills do not cure endometriosis; dietary changes do not cure endometriosis. There is no cure for endometriosis. The myth that excision surgery by an excision expert can cure endometriosis has persisted because some women do indeed experience a remission of symptoms after one particular surgery, or after a few surgeries that didn’t appear to help, followed by one last surgery, which did. At first glance, this would make it seem as if endometriosis is curable if only one could just get the right surgery. However, there are other women who have a more recalcitrant form of endometriosis, as well as other factors, who, despite having the exact same surgery by the exact same surgeon still experience recurrent endometriosis.

In short, extrapolating the experience of one patient to that of an entire population produces misleading conclusions because women have unique genetic, endocrinologic, and environmental modulators, as well as different forms of endometriosis that vary widely in symptoms and recurrence patterns. Patients with severe, stage IV endometriosis, for example, often have higher recurrence rates than those with less severe disease (stage I-II).

However, what is true is that surgeons have varying degrees of skill and experience, which definitely does make a difference. In fact, as dozens of studies have repeatedly found, the two main factors correlated with successful surgical outcomes are the skill and experience of the surgeon. It is for this reason that women with endometriosis are urged to seek care from an endometriosis specialist.

If there is an evidence of severe endometriosis with involvement of bowel, then a pelvic MRI scan is arranged within days to map out the disease and plan a surgical treatment. The pelvic MRI gives a very detailed information about the extent of the disease and involvement of other organs. His is also the best investigation to look in to adenomyosis. Dr Iola Papanikolaou is the consultant radiologist with a special interest in endometriosis. She reports all the MRI scans.

Colonoscopy and flexible Sigmoidoscopy

Performed by Mr. Oliver Warren, this may become necessary in severe cases of endometriosis where the colon and rectum can become involved in the disease.

This may become necessary in severe cases of endometriosis involving the large and small bowel, particularly where the rectum becomes stuck to the back of uterus. Mr Oliver Warren, a laparoscopic colorectal surgeon with an interest in endometriosis surgery will carry out the procedure. These investigations help us to understand the extent of bowel involvement and perform pre-operative planning and where necessary a detailed consent process. Mr Raza and Mr Warren work very closely in these complex cases of rectovaginal endometriosis to achieve the best results for their patients, and are happy to perform joint consultations with patients and their families prior to surgery.