Fistulas - What do therapists need to know?

This post is a follow-up to the February 20th post written by Nancy Cullinane, "Pelvic Floor One is Heading to Kenya" 

By the time folks are reading this, Nancy Cullinane, PT, MHS, WCS, Terri Lannigan, PT, DPT, OCS, and I will likely be in a warm, crowded classroom in Nairobi, Kenya helping 30+ “physios” navigate the world of misbehaving bladders, detailed anatomy description, and their first internal lab experiences. No doubt it will be both challenging and extremely rewarding. We are so grateful to the Herman & Wallace Pelvic Rehab Institute for sharing their curriculum in partnership with the Jackson Clinics Foundation to allow us to offer their valuable curriculum in order to affect positive health care changes.

I personally am humbled and honored to get to play a small but key role in the development of foundational knowledge and skills for these women PT’s who will no doubt change the lives of countless Kenyan women, and, consequently, their families.

My adventure truly began when I offered to write lectures on the topics of Fistula and FGM/C (female genital mutilation/cutting) and I began the process of crash course learning about these topics. The quest has taken me on a deep dive into professional journals, NGO websites, surgical procedure videos and insightful interviews with some of the pioneers working for years including “in the field” to help women in Africa and in countries where these issues are prevalent.

Before I began my research on the topic of fistula, I pretty much thought of a fistula as a hole between two structures in the body where it doesn’t belong, and narrowly thought of in terms of anal fistulas, acknowledging how lucky we are that there are skilled colorectal surgeons who can fix them. But after more research, my world view changed. (Operative word here being “world”).

A fistula is an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs. For our purposes here today, I am referring to an abnormal hole or passage between the vagina and the bladder, or rectum, or both. When the fistula forms, urine and/or stool passes through the vagina. The results are that the woman becomes incontinent and cannot control the leakage because the vagina is not designed to control these types of body fluids.

According to the Worldwide Fistula Fund, there are ~ 2 million women and girls suffering from fistulas. Estimates range from 30 to 100 thousand new cases developing each year; 3-5 cases/1000 pregnancies in low-income countries. A woman may suffer for 1-9 years before seeking treatment. For women who develop fistula in their first pregnancy, 70% end up with no living children. 

Vesicovaginal fistulas (VVF) can involve the bladder, ureters, urethra, and a small or large portion of the vaginal wall. Women with VVF will complain of constant urine leakage throughout the day and night, and because the bladder never fills enough to trigger the urge to void, they may stop using the toilet altogether. During the exam there may be pooling of urine in the vagina.

Rectovaginal Fistula is less common, and accounts for ~ 10% of the cases. Women with RVF complain of fecal incontinence and may report presence of stool in the vagina. These women often will also have VVF.

In Kenya, most fistulas are obstetric fistulas, which occur as a result of prolonged obstetric labor (POL). These are also called gynecologic, genital, or pelvic fistulas. Traumatic fistulas account for 17-24 % of the cases and are caused by rape, sexual or other trauma, and sometimes even from FGM/C. The other type of fistula by cause is iatrogenic, meaning unintentionally caused by a health care provider during procedures such as during a C-section, hysterectomy, or other pelvic surgery. Most fistulas seen in the US are of this type.

Prolonged Obstructed Labor most often occurs when the infant’s head descends into the pelvis, but cannot pass though because of cephalo-pelvic disproportion (mismatch between fetus head and mother’s pelvis) thus creating sustained pressure on the tissues separating the tissues of the vagina and bladder or rectum, (or both) leading to a lack of blood flow and ultimately to necrosis of the tissue, and the development of the fistula. Those who develop this type of fistula spend an average of 3.8 days in labor (start of uterine contractions), some up to a week. In these cases, family members or traditional birth attendants may not recognize this is occurring, and even if they do, they may not have the instrumentation, the facilities or the skills necessary to handle the situation with an instrumental delivery or a C-section. And many of these women are in remote locations without transportation to appropriate facilities or lack the money to pay for procedures.

There are many adverse events and medical consequences that can result as a result of untreated obstetrical fistulas including the death of the baby in 90% of the cases. Physical effects besides the incontinence previously mentioned can include lower extremity nerve damage, which can be disabling for these women, along with a host of other physical and systemic health issues. The social isolation, ostracization by community, divorce, and loss of employment can lead to depression, premature lifespan, and sometimes suicide.

The good news is there are several great organizations making a difference.

In most cases, surgery is needed to repair the fistula. Sometimes, however, if the fistula is identified very early, it may be treated by placing a catheter into the bladder and allowing the tissues to heal and close on their own, and this is more viable in high-income countries after iatrogenic fistulas, but unfortunately, most women in the low-income countries have to wait for months or years before they receive any medical care.

There is an 80-90% cure rate depending on the severity, but according to the Worldwide Fistula Fund, 90% are left untreated, as the treatment capacity is only around 15,000 per year for the 100,00 new patients requiring it. Prevention is vital.

Despite successful repair of vesicovaginal fistulas, research shows that 15-35% of women report post-op incontinence at the time of discharge from the hospital, and that 45-100% of women may become incontinent in the years following their repair. Studies suggest that scar tissue-fibrosis of the abdominal wall and pelvis, and vaginal stenosis are strongly associated with post-operative incontinence.

According to research by Castille, Y-J et al in Int. J Gynecology Obstet 2014, there can be improved outcome of surgery both in terms of successful closure of vesicovaginal fistula and reduced risk of persistent urinary incontinence if women are taught a correct pelvic floor muscle contraction and advised to practice PFM exercise. Other studies have shown a positive effect from pre and post op PT in both post op urinary incontinence and PFM strength and endurance with a reduction of incontinence in more than 70% of treated patients, with improvements maintained at the 1year follow up. SO, THIS IS ONE REASON WE ARE SO EXCITED TO BE GOING TO KENYA!

I inquired about the use of dilators via email communication with surgeon Rachel Pope , MD MPH who has done extensive work in Malawi with women who have suffered from fistula, including the use of dilators, and her response was: “in women who have had obstetric fistula the dilators seem only marginally helpful after standard fistula repairs. The key is to have a good vaginal reconstructive surgery where skin flaps that still maintain their blood supply replace the area in the vagina previously covered by scar tissue. The dilators work exceedingly well when there is healthy tissue in place, and I think the overall outcomes are better for women in those scenarios compared to the cement-like scar we often see in women with fistulas.”

In the US, there are specialist surgeons who provide surgical repairs. While genitourinary fistulas can occur because of obstructed labor and operative deliveries in high income countries, they can also occur in a variety of pelvic surgeries, post pelvic radiation, as well as in cases of cancer, infections, with stones, and as well etiology includes instrumentations such as D&Cs, catheters, endoscopic trauma, and pessaries, and as well in cases of foreign bodies, accidental trauma, and for congenital reasons. As pelvic therapists it is important to know your patients’ surgical and medical history and to pay special attention to the patient’s history regarding their incontinence description and onset and be mindful during exam to notice possible pooling of urine in the vagina. Though rare in terms of occurrence, we should be aware of the possibility and may play a role in referring the patient to a physician who can do further diagnostic testing

In conclusion, I want to thank UK physiotherapist Gill Brook MCSP (DSA) CSP MSC, president of the IOPTWH who shared with me by interview her knowledge of fistula and experiences with the Addis Ababa Fistula Hospital in Ethiopia, which she has been visiting for 10 years, as well as Seattle’s Dr. Julie LaCombe MD FACOG who has performed fistula surgeries in Uganda and Bangladesh and met with me personally to share about obstetrical trauma and fistula surgery and management.

Nancy, Terri and I will look forward to sharing photos and more about our journey and experiences, upon our return. In the meantime, check out the Campaign to End Fistula and join the campaign.