Rectovaginal endometriosis (RVE) is a severe form of endometriosis, a painful chronic condition where endometrial-like cells (cells like the lining of the uterus) grow outside of the uterus. RVE is a type of deep infiltrating endometriosis. Deep infiltrating endometriosis invades deep into the peritoneum, the lining that covers organs in the pelvis and abdomen. RVE can occur in any stage of endometriosis, but large rectovaginal lesions are common in stage 4 endometriosis — the most severe stage.
RVE is less common than other forms of endometriosis. It affects between 4 percent and 37 percent of people with endometriosis, depending on the data source. RVE can involve both the vagina and the rectum, as well as the surrounding tissue in the pelvis. To be more specific, RVE can involve the rectovaginal septum, the wall of tissue that separates the vagina from the rectum inside the body. It usually involves the rectovaginal cul-de-sac, the empty space between the vagina and rectum above the rectovaginal septum.
RVE can spread and invade nearby body parts, including the ligaments that help hold the uterus in place and the ureters, the tubes that connect the kidneys to the bladder. Like other types of endometriosis, RVE can cause severe pain, infertility, and menstrual problems.
Symptoms of RVE are the same as other forms of endometriosis, but they tend to be more severe. Severity of symptoms can vary throughout the menstrual cycle as estrogen levels fluctuate.
Common symptoms seen with RVE include:
A diagnosis of endometriosis generally requires laparoscopic surgery, but vaginal biopsy can sometimes be used. Other steps to diagnose endometriosis include a thorough family and personal medical history, physical exam (including a pelvic exam), blood and other laboratory tests, and imaging studies.
A careful and thorough medical history can identify potential symptoms of endometriosis. It can also help identify if other family members have endometriosis. Having family members with endometriosis increases your risk of developing the condition.
A physical exam can identify nodules and tenderness that may be endometriosis lesions. A pelvic exam may also be performed to find potential abnormalities of the reproductive tract and rectovaginal septum.
Standard blood tests, including a complete blood count, are needed to rule out other possible conditions.
Imaging studies are used to help locate endometrial lesions. The primary imaging method used to look for these lesions is ultrasound. Pelvic ultrasound, transvaginal ultrasound, and transrectal ultrasound are all used to identify potential lesions.
Colonoscopy may also be performed. CT and MRI imaging are sometimes used to identify lesions, but they are more likely to be used before surgery to look for anatomic abnormalities caused by endometriosis.
The standard for diagnosis of endometriosis is laparoscopic surgery to visually identify lesions. Surgeons can also use laparoscopic surgery to collect tissue for biopsies, which can positively identify endometrial tissue. Surgery can also be therapeutic; surgical removal of lesions is part of the treatment of endometriosis.
The causes of rectovaginal and other types of endometriosis are poorly understood. What is known is that both genetic and environmental factors play a role in the development of disease. Several processes are suspected to cause endometriosis, but research has yet to prove a single cause.
It is most likely that a variety of genetic and environmental factors work together in the development of endometriosis. Biological mechanisms including inflammation, the immune system, and estrogen and progesterone receptors may be involved. Research is ongoing to understand the pathogenesis of endometriosis.
Risk factors for endometriosis include:
Treatment of RVE includes pain management, hormonal therapy, and surgical removal of endometriosis lesions and adhesions.
Chronic and recurring pain from RVE can be debilitating. Many over-the-counter and prescription pain medications can be used to manage pain. Nonsteroidal anti-inflammatory drugs such as ibuprofen can help pain. Other pain medications, including opioid painkillers, may be used to help control the severe pain of RVE.
Endometriosis lesions respond to estrogen. They grow and spread when estrogen levels are high, just as normal endometrial tissue does. Drugs called gonadotropin-releasing hormone (GnRH) antagonists like Orilissa (elagolix) can treat endometriosis by lowering estrogen levels. GnRH agonists like Lupron (leuprolide) work in the same way. Danocrine (danazol) is a synthetic hormone related to testosterone that alters hormone levels and reduces endometriosis symptoms.
Hormonal therapies are effective at reducing pain and other symptoms of endometriosis — even the severe pain associated with RVE.
Hormonal contraceptives, such as birth control pills and hormonal intrauterine devices, are often used to treat endometriosis. Oral contraceptives are usually not effective against the severe symptoms of RVE.
Surgery, including laparoscopic surgery or laparotomy, is used to diagnose RVE, to remove or destroy endometriosis lesions, and to treat adhesions. Surgical excision, electrosurgery, and laser resection are minimally invasive surgery options that are used to remove lesions.
Because RVE is a deeply invasive type of endometriosis, tissue containing lesions may need to be removed. In some cases, sections of bowel must be removed, and the remaining bowel must be rejoined.
Surgery to remove the uterus (hysterectomy) or ovaries (oophorectomy) can be a treatment option for severe endometriosis. However, there are drawbacks to each procedure. Both options cause permanent infertility, and an oophorectomy can increase a person’s risk for cardiovascular disease.
Overall, surgery has proven to be an effective way to relieve bowel symptoms, pain, and pain with sex (dyspareunia) in many people with RVE.
RVE can cause bowel obstruction. Bowel surgery for endometriosis can have several severe complications, including rectovaginal fistulas and adhesions.
Rectovaginal fistulas are essentially holes that connect the interiors of the vagina and rectum. These holes allow fecal material to enter the vagina. Rectovaginal fistulas can lead to vaginal discharge, chronic vaginal and urinary tract infections, irritation of the vagina and vulva, and bowel incontinence.
Endometriosis causes inflammation that can lead to scarring of the peritoneum, the lining that covers organs in the pelvis and abdomen. This scarring can cause the formation of painful adhesions between organs, or scarring that makes internal organs stick to one another.
In addition to causing pain, adhesions can deform organs such as the fallopian tubes (contributing to infertility) or the intestines (leading to intestinal blockages). Adhesions can also obstruct the fallopian tubes, bowel, ureters, and blood vessels in the pelvis and abdomen, cutting off blood flow (ischemia) and causing tissue death (necrosis). Severe complications caused by adhesions, such as bowel necrosis, can be a medical emergency.
RVE is considered the most severe kind of endometriosis. It can cause serious complications and significant pain. Effective treatments can improve symptoms while also addressing the underlying disease. While surgical treatment is usually necessary to alleviate symptoms, studies have shown that hormonal therapies can significantly improve severe symptoms — including pain — by controlling estrogen levels. Together, surgery and hormonal treatments can effectively reduce symptoms, help prevent severe complications, and significantly improve quality of life for people with RVE.
MyEndometriosisTeam is the social network for people with endometriosis and their loved ones. On MyEndometriosisTeam, more than 124,500 members come together to ask questions, give advice, and share their stories with others who understand life with endometriosis.
Are you living with rectovaginal endometriosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.