About 1 in 4 females who have a hematopoietic stem cell transplant experience vaginal symptoms, according to the journal Hematology, Transfusion and Cell Therapy. However, many people find it hard to talk about vaginal discomfort, which can mean symptoms go untreated.

Graft-versus-host disease (GVHD) is a common complication of a type of hematopoietic stem cell transplant called an allogeneic stem cell transplant, which uses donor cells. GVHD happens when the donor’s immune cells (the graft) attack healthy tissues in the recipient’s body (the host). This disease can affect many parts of your body, including the vagina. This article will help you recognize common and uncommon vaginal symptoms that can occur in GVHD.

How Does GVHD Cause Vaginal Symptoms?

Vaginal symptoms of GVHD usually appear seven to 10 months after a stem cell transplant. These symptoms are much more common in chronic GVHD than in acute GVHD. Chronic GVHD can develop at any time after a transplant but typically occurs later than acute GVHD.

Unlike acute GVHD, which usually appears within the first few months and mainly affects the skin, liver, and gut, chronic GVHD can involve multiple organs, including the vagina. Between 40 percent and 50 percent of people who receive an allogeneic stem cell transplant develop chronic GVHD.

Chronic GVHD happens when the donor’s immune cells see the recipient’s body as foreign and attack healthy tissues. If this attack happens in the genital area, it can cause genital GVHD, affecting the vulva (the outside of the genitals) and the vagina (the birth canal). Symptoms often start in the vulva before affecting the vagina.

1. Loss of Libido

It’s common to have a lower libido (sex drive) after a stem cell transplant. Many factors can reduce your sexual desire, including:

• Fatigue (tiredness that does not improve with sleep) — Many people feel exhausted right after a stem cell transplant. For some, this fatigue can continue for years, making it harder to feel interested in sex or have the energy for intimacy.
• Mental health — Anxiety, depression, or stress related to GVHD and recovery can decrease your desire to have sex.
• Medication side effects — Some medications can lower libido by affecting hormone levels. For example, corticosteroids (steroids) can reduce the production of sex hormones, which may affect your sex drive.
• Dyspareunia (pain during sex) — You may have a lower sex drive if you find sex painful or have difficulty achieving orgasm due to vaginal GVHD. The next section will discuss this in more detail.

2. Pain During Sex

About half of females with genital GVHD report experiencing dyspareunia, according to Hematology, Transfusion and Cell Therapy. This pain can occur if GVHD affects the vulva, vagina, or both.

Symptoms that affect the vulva include sores, pain or tenderness when touched, and skin changes that cause the labia (skin folds around the vaginal opening) to fuse together. Vaginal GVHD can cause dryness, narrowing of the vaginal canal, and loss of elasticity (stretchiness), making penetration more difficult and painful.

3. Vaginal Dryness

Vaginal dryness happens when the vagina doesn’t produce enough natural lubrication. Normally, a thin layer of fluid helps keep the tissues lining the vagina moist so they move easily and feel comfortable. Vaginal dryness is often linked to other symptoms, including:

• Burning
• Itching
• Pain while urinating (peeing)
• Pain during sex
• Bleeding after sex

About 80 percent of females with genital GVHD experience vaginal dryness, according to Hematology, Transfusion and Cell Therapy. This makes it the most common vaginal symptom after a stem cell transplant. Vaginal dryness can occur if GVHD causes the immune system to attack the tissues that normally help keep the vagina lubricated.

If you have vaginal dryness, your healthcare team may recommend tests to see if this symptom is caused by chronic GVHD or by menopause — the natural end of menstrual periods. Overall, menopause is the most common cause of vaginal dryness, because the body produces less of the hormone estrogen, reducing natural moisture and elasticity.

4. Sores on the Vulva or Vagina

Chronic GVHD that affects the skin can cause ulcers (sores) anywhere on the body, including the genitals. Additionally, chronic GVHD can slow the healing process, which may be a concern if you have irritation or small tears from vaginal dryness. Sores can also be caused by genital herpes, which we’ll explain below.

5. Labial Adhesion

Labial adhesion happens when the labia minora (the inner lips of the vulva) fuse together. In some cases, the labia can cover the clitoris (the small, sensitive organ on top of the vulva), urethra (the tube that carries urine out of the bladder), or vaginal opening. Although labial adhesion isn’t a common symptom of genital GVHD, it can cause symptoms including:

• Vaginal pain
• Difficulty urinating
• Frequent urinary tract infections (UTIs)
• Unusual vaginal discharge
• Pain during sex

6. Narrowing of the Vaginal Canal

Skin changes in chronic GVHD can make the vaginal canal stiffer and narrower. This happens when the immune system attacks healthy tissue in the skin, causing inflammation. Over time, the body replaces damaged tissue with scar tissue in a process called fibrosis. Scar tissue is thicker, harder, and less flexible than healthy tissue.

If GVHD affects the vaginal canal, the vaginal walls can become shorter, narrower, and less stretchy, which may cause pain during sex or difficulty with penetration.

7. Infections

During GVHD treatment, you may be more likely to develop an infection affecting the vulva or vagina. Symptoms may include:

• Painful sores
• Warts
• Itching
• Unusual vaginal discharge

Genital herpes, a common sexually transmitted infection caused by the herpes virus, affects about 20 percent of people aged 15 to 49 worldwide. After a hematopoietic stem cell transplant, about 80 percent of people with the herpes virus may have an outbreak if preventive treatment isn’t used.

People with GVHD may also be more likely to develop vaginal infections, including:

• Human papillomavirus (HPV) — Can cause genital warts or lead to abnormal Pap test results
• Yeast infections — Often cause thick, white discharge and itching
• Bacterial infections — May lead to changes in vaginal discharge

Talk to your healthcare provider right away if you notice any of these symptoms.

8. Cervical Dysplasia

Cervical dysplasia refers to abnormal cell growth on the cervix (the lower part of the uterus that connects to the top of the vagina). Cervical dysplasia is a precancerous condition, meaning the abnormal cells could turn into cervical cancer over time. The most common cause of cervical dysplasia is HPV infection.

Research shows that people who’ve had a stem cell transplant are 13 times more likely to develop cervical cancer compared to the general population. Key risk factors include long-term use of immunosuppressive medications and having GVHD, which weakens the immune system and increases HPV-related risks.

Most people with cervical dysplasia don’t have symptoms. Your healthcare provider can check for abnormal cervical cells with a Pap test.

Managing Vaginal Symptoms With GVHD

Regular follow-up exams with a gynecologist (a doctor who specializes in reproductive health) can help prevent vaginal complications of GVHD. If you have symptoms, your gynecologist may want to see you at least every six months. Even if you don’t have symptoms, it’s a good idea to see a gynecologist at least once a year.

It’s important to talk to your transplant team about any symptoms you’re experiencing. Appropriate treatment may help improve your sexual function and quality of life. The best treatment for you depends on your specific symptoms.

Topical steroid creams or ointments can be applied directly to the affected area to help reduce inflammation. However, these can be used for only a short time. If you need long-term treatment, your healthcare provider may recommend another type of topical immunosuppressant, such as tacrolimus (Protopic). Hormone replacement therapy and water-based vaginal lubricants may help with vaginal dryness if symptoms are related to low estrogen levels.

Vaginal dilators or regular vaginal sex can help keep the vaginal canal from narrowing or closing. This treatment is usually recommended two or three times a week. If your vagina becomes too narrow or closes, surgery may help restore function and improve comfort during sex.

Talk to your transplant team if you’d like a referral to a pelvic floor physical therapist to help improve your symptoms.

Talk With Others Who Understand

On myGVHDteam, the site for people with graft-versus-host disease and their loved ones, people come together to ask questions, give advice, and share their stories with others who understand life with the condition.

Have you experienced vaginal symptoms with GVHD? What treatments helped improve your symptoms? Share your experience in the comments below.