Many types of graft vs. host disease (GVHD) affect men and women in similar ways — skin is skin, and lungs are lungs, no matter your sex. But when it comes to GVHD of the urinary system and genitals (also known as genitourinary or urogenital GVHD), things diverge a bit…for obvious reasons!

Despite the anatomical differences at play, however, there’s still plenty of overlap — both sexes may struggle with sexual issues because of their disease, and difficulty urinating is common to both. Treatments are also similar for both groups, and the stigma and communication issues that accompany the disease don’t discriminate between the sexes.

When urogenital GVHD does develop, it’s often in the first year post-transplant, and it’s more common in women than men. And while some cases do appear later — up to three years’ post-transplant — on average, the latter part of the first year is when it often takes hold.

Urogenital GVHD in Women

Symptoms of urogenital GVHD in women may affect the vulva — everything external to the vagina, like the labia, clitoris, and vaginal opening — or the internal vaginal canal that connects the uterus to the vulva, known simply as the vagina. For that reason, it’s often referred to as vulvovaginal GVHD.

Furthermore, the urinary system, specifically the urethra (the tube urine passes through to exit the body), can also be involved, causing unpleasant urinary symptoms.

Collectively, this type of GVHD is referred to as urogenital or genitourinary GVHD.

Symptoms may include:

• Pain, burning, dryness, and/or itching of the vulva or vagina
• White “lines” in the vagina, similar to what lichen planus looks like in other areas of the body
• Inflammation, redness, or swelling
• Abnormal vaginal discharge or bleeding
• Ulcerations
• Pain with intercourse
• Urgency, burning, or pain with urination, or recurring urinary tract infections (UTIs)

Under normal, healthy circumstances, the vagina is incredibly stretchy and flexible…that’s why women can birth children. But when scarring and adhesions occur due to GVHD, the vaginal canal can stiffen and become narrow (known as vaginal stricture, or vaginal stenosis), which makes intercourse difficult and uncomfortable. It can also make it hard to use tampons and impede the flow of menstrual blood trying to leave the body. The same can happen with the urethra (known as urethral stricture), making it difficult to urinate and fully empty the bladder.

Treatment

For women suffering from genitourinary GVHD, pelvic floor therapy — performed by a physical therapist — can be extremely beneficial, to help break up scar tissue and retrain and strengthen the pelvic floor muscles (the muscles that support all the pelvic organs, like your bladder, bowel, uterus, and vagina). Exercises, biofeedback, and relaxation techniques are often utilized, as are vaginal dilators — instruments that gently stretch the vagina — and other devices to keep the vaginal canal and urethra from closing.

Check with your doctor for therapist recommendations, or visit https://pelvicrehab.com/. You may also find this presentation from Nikki Samms, PT, DPT, helpful: https://bmtinfonet.org/video/2022-GVHD-pelvic-floor-exercise.

Lubricants and topical estrogen — in the form of rings, creams, and suppositories — are often prescribed to combat symptoms, too, as estrogen deficiency frequently fuels many of the symptoms of vaginal GVHD. Additionally, Vitamin E can be compounded with hyaluronic acid to form a vaginal formulation that acts as a moisturizer and skin protectant. Topical steroids — like clobetasol propionate ointment — and other immunosuppressive drugs, like tacrolimus or cyclosporine ointments, may also be used. If hormone imbalances are present, hormone replacement therapy might be implemented as well.

No matter what, says Oluwatosin Goje, MD, MSCR, FACOG, always avoid scented feminine hygiene products, because those will make symptoms worse.

“Avoiding irritating over-the-counter feminine products is important, because many times the vagina, even when there are no symptoms, is fragile,” she shared during her 2023 presentation at BMTinfonet’s survivor symposium. “Use of irritating over-the-counter vaginal products aggravates the vagina. I always recommend a simple emollient, whether it is olive oil, coconut oil, Aquaphor, or something that is simple and hypoallergenic.”

While men often return to their pre-transplant sexual function within several years of diagnosis, women sometimes never return to their former function completely, according to Dr. Goje. For that reason, she says, detecting genital GVHD early and starting treatment right away is imperative, to keep it from progressing into severe disease and dysfunction. In an ideal world, she added, women should have a gynecologic exam before transplant and then at regular intervals post-transplant to catch changes that may indicate urogenital GVHD. Lifelong follow-up and treatment will be necessary for any woman diagnosed with vaginal GVHD.

“Always speak up,” she implored, even if your doctor doesn’t ask. “This is a condition that can very negatively affect quality of life, and you should always share any symptoms you’re experiencing with your doctor. When started early, treatments can preserve and heal the vagina’s mucosal membranes, keeping function intact.”

Urogenital GVHD in Men

In men, urogenital GVHD can affect both the skin of the penis and its underlying structures, affecting a man’s ability to get an erection and ejaculate. And, in the same way scarring and adhesions can narrow the urethra in women, it can do the same in men, causing similar urinary symptoms and discomfort.

Symptoms of genitourinary GVHD in men can include:

• Rashes, redness, white lines, and inflammation of the penis
• Skin changes (including a change in skin color) or ulcers on the penis
• Difficulty with erection or ejaculation
• Phimosis, or the inability to pull back the outer layer of skin (the foreskin) that covers the head of the penis in uncircumcised men
• A bend in the penis, caused by scarring and adhesions to structures beneath the skin
• Difficult or painful urination
• Decreased interest in sex

While urogenital GVHD appears to be less common in men than it is in women, it’s also possible that it’s largely underreported, and therefore not studied as frequently.

Treatments

Steroid creams and immunosuppressive drugs (like tacrolimus) are first-line treatments in the fight against urogenital GVHD in men, just like they are for women. Testosterone therapy is also sometimes started if a hormonal imbalance is identified. In men who are uncircumcised, circumcision may be recommended as well, to relieve tightness and discomfort caused by phimosis. Additionally — in men who wish to have children in the future — consultation with a reproductive specialist prior to transplant is highly recommended, since sperm production can be negatively affected by a stem cell transplant and furthermore by the development of GVHD.

And pelvic floor therapy isn’t just for women — men with urogenital GVHD can benefit greatly from the treatment as well, to combat sexual and urinary issues. Again, check with your healthcare system for therapist recommendations, or visit https://pelvicrehab.com/.

Both men and women with urogenital GVHD will benefit from these tips as well:

• Immediately change into dry clothes after sweating or swimming
• Wear loose, cotton undergarments
• Wash the genital area with warm soap and water and avoid products with fragrance

Overcoming Stigma and Communication Barriers

Sexual dysfunction is common among survivors of stem cell transplants — whether it’s hormonal issues, decreased fertility, decreased sex drive, or anatomical changes that make sex difficult or uncomfortable, there’s no shortage of ways the treatment can impact someone’s sex life. In fact, nearly 50% of stem cell transplant survivors report issues like these. Anxiety and depression surrounding intercourse and relationships is especially common among sufferers of genital GVHD. Not only can it be an embarrassing and uncomfortable diagnosis to discuss, the problems it causes can lead to body image issues that can be hard to overcome, and may put a strain on relationships.

As hard as it is, it’s important to tackle these issues head-on and without delay, and talk openly to both your partner and your doctor about the challenges you’re facing…the longer its left undealt with, the harder it can be to overcome. Even if your doctor doesn’t ask, make sure you bring up any concerns you have with them — trust us, they’ve heard it all before and they want to help! Employing the help of a sex therapist is essential, too, if you’re struggling. Biofeedback therapy — which helps you control your breathing and heartrate through stress — may help people suffering from performance anxiety. Other relaxation techniques, like yoga, can also be helpful.

Once you feel comfortable moving forward with intimacy, however, there’s no reason someone with urogenital GVHD should avoid sex, according to Dr. Goje, even if you’re using hormone creams (as they’re low dose and shouldn’t affect your partner). For women in a committed relationship, having sex two or three times a week can even help promote elasticity and keep the vaginal canal from closing.
“Some patients will also use 2% to 5% topical lidocaine at the opening of the vagina prior to intercourse, just to prevent pain,” she says. “Most patients will use a pea-sized amount of the topical lidocaine about 15 to 20 minutes before intercourse to help with penetration.”
For more resources and information, visit https://bmtinfonet.org/transplant-article/sexual-health-after-bone-marrow-or-stem-cell-transplant.

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Sources 

1. https://bmtinfonet.org/transplant-article/genitals-and-chronic-gvhd
2. https://bmtinfonet.org/video/graft-versus-host-disease-genitals
3. https://bmtinfonet.org/video/2022-GVHD-pelvic-floor-exercise
4. https://pmc.ncbi.nlm.nih.gov/articles/PMC7666334/
5. https://chi.scholasticahq.com/article/124926-multidisciplinary-management-of-morbidities-associated-with-chronic-graft-versus-host-disease
6. https://www.sciencedirect.com/science/article/pii/S2531137924028827
7. https://pmc.ncbi.nlm.nih.gov/articles/PMC9050968/#:~:text=Genital%20chronic%20GvHD&text=In%20male%20cGvHD%20of%20the,intercourse%20or%20a%20burning%20sensation