Since chronic graft-versus-host disease (cGVHD) is the most common late complication of allogeneic stem cell transplantation, oncology nurses must know all of potential clinical manifestations. Female genital involvement often receives less attention and education than other organ systems and is often underreported, but cGVHD can affect the genitals when the donor cells attack these tissues. It can cause significant pain and sexual difficulties for survivors living with cGVHD. Oncology nurses are in a pivotal position to assess for symptoms of female genital cGVHD and to intervene early.
Risk and Occurrence
Limited studies suggest that peripheral blood stem cells, rather than bone marrow, increase the risk of genital GVHD. One long-term follow-up study of 38 women indicated that the donor source makes a difference. Women receiving sibling stem cells were more likely to develop genital cGVHD than those who received an unrelated donor transplant.
The incidence of vulvar or vaginal cGVHD varies greatly—from 1.6% to 69%—according to a systematic literature review. Because of limited studies, sample sizes are small. Manifestations often develop at approximately 7-9 months post-transplant but can occur several years later.
The disease is more common in the vulva (70%) than in the vaginal area (25%). It often affects the vulva first, then progresses to the vagina. Remember that it can occur even in children.
Oncology nurses must remember that not all patients have symptoms. Many patients are asymptomatic but have noticeable changes on a pelvic exam by an expert in assessing genital GVHD. Pelvic exams are recommended every 3 months for the first year, then yearly. Although external lesions are easy to identify, gynecologic exams can detect more extensive disease such as vaginal adhesions and deformities.
Encourage patients to report any changes in their genitalia to the care team. Symptoms of genital cGVHD in women include:
- Vaginal itching and dryness (sicca)
- Narrowing of the vaginal canal (stenosis/strictures) or loss of elasticity
- Bloody or watery vaginal discharge
- Painful intercourse (dyspareunia)
- Pain urination (dysuria) or bleeding with urination (hematuria)
- Pain upon touch
- Vulvar anatomical distortions
- Tears (fissures)
- Lesions or erosions (vitreous erythema)
- Patchy or generalized erythema
- Paleness of the tissue
Itching is the most common symptom, mimicking an infection.
A gynecologic exam and specimen collection can rule out fungus or herpes simplex virus. A comprehensive exam includes visual inspection, palpation of vestibular glands and tissues, and both a single-digit and speculum exam.
Diagnostic and distinctive signs with a pelvic examination include:
- Lichen planus-like or sclerotic-like features
- Vaginal scarring or clitoral/labial agglutination
One review states that “the main signs and symptoms are sensitivity to palpation of the openings of the vestibular glands or vulvar mucosa, erosion of the mucosa, fissures, leukokeratosis, labial or clitoral fusion, fibrous vaginal ring, vaginal shortening, vaginal adhesions, and complete vaginal stenosis.” Biopsies are critical to determine if the changes are from low estrogen levels or cGVHD.
Without a diagnosis and prompt treatment, female genital cGVHD can progress to fusion of the labia, adhesions, and scars. These complications can interfere not only with sexual activity but also with urination.
Talking about female genitalia can be embarrassing for some patients. A simple approach to bringing up the topic is stating, “Many patients can develop GVHD of their female parts below the waist. Sometimes, it occurs without you noticing any changes. We recommend every patient, like you, to have routine gynecologic exams, much like your Pap smears. Please call us if you have any pain, fluids, or bleeding. The earlier we can start you on treatment, the better.”
Female genital cGVHD is a common and underreported clinical manifestation of cGVHD. Approximately 25% of all women develop gynecologic GVHD. With early recognition and intervention, patients can likely avoid severe complications such as partial or complete vaginal stenosis or severe anatomical distortions. As with all signs and symptoms, oncology nurses have a critical role in identifying and reporting any new onset or changes in the genitourinary tract.