What is GVHD of the vulva and vagina?

People with chronic GVHD of the vulva and vagina may feel dryness, burning or itching. Some people have pain when they wear tight clothes. Others have pain with urination or vaginal sex. Sometimes people have bleeding after sex. 

Without treatment, it can cause severe pain and make it impossible to have vaginal sex.

• Ask your doctor about taking estrogen. Estrogen can be taken as a pill, vaginal cream, vaginal ring or vaginal suppository. Estrogen may ease the dryness or other symptoms of menopause. 
• Clean your vulva and vagina gently with warm water only. Don’t use perfumed washes or lotions. Wear cotton underwear that’s not too tight. 
• Use a water or silicone-based lubricant before vaginal sex. Use one that doesn’t have perfumes, dyes or alcohol. Vaginal moisturizers may also help. Some people find that silicone-based lubricants last longer during sex. 
• Look at your vulva every week. Tell your doctor if you see any changes. 
• Have vaginal sex or use a dilator 2–3 times a week if you don’t have pain. This can keep the vagina from narrowing, or even closing. You can order dilators anonymously on the internet. 
• If you have swelling, redness, open sores, or pain, vaginal sex might be uncomfortable or painful. Tell your doctor if you have any of these symptoms. 
• Have your doctor check your vulva and vagina 3 months after transplant and then yearly, even if you don’t have symptoms. See a gynecologist with experience caring for people after transplant. 

• Doctors need to do a gynecological exam to diagnose this type of GVHD. Sometimes they need to take a small piece of vaginal tissue to look at more closely under a microscope. 
• Prescription topical creams or ointments that have strong steroids in them may help. 
• Your doctor may give you topical immunosuppressant medicines (medicines that hold back your immune system). Examples include Cyclosporine, Tacrolimus and corticosteroids. Topical Cyclosporine or Tacrolimus may cause genital burning. 
• Dilators or vaginal sex can keep the vagina from narrowing or closing. 
• If your vagina narrows or closes off, surgery may be needed so you can have vaginal sex again. After surgery, you’ll need to use vaginal dilators or have vaginal sex regularly. 

• You can’t spread GVHD of the vulva and vagina to other people through touching or sex. 
• Some people feel embarrassed talking about their vulva or vagina with their doctor. Remember, your doctors want to help you. It’s important to discuss what’s happening with your body with your doctor. 
• If the problem isn’t treated early, you could have long-term problems with vaginal sex and your quality of life may suffer. 
• Tell your doctor if you have lower interest in sexual activity or less satisfaction with sex.
• Vulvar or vaginal infections can be more common during treatment for this type of GVHD. These infections include: 
• Herpes - causes open, painful sores 
• Human papilloma virus (HPV) - causes warts or abnormal pap smear 
• Yeast - causes cheesy discharge and itching 
• Bacteria - causes discharge 

If you have any of these symptoms, tell your doctor so they can treat it. 

• Other things can cause symptoms that seem like chronic GVHD of the vulva and vagina. This may include infections and genital atrophy, which is a symptom of early menopause. Inform your doctor of any new symptoms right away. 

• Your symptoms get worse 
• You have new symptoms in your vulva or vagina 
• You have a fever or other signs of an infection 
• It’s too painful to have vaginal sex or use a dilator 
• You have unexpected vaginal bleeding