One woman’s experience with GVHD of the vagina and vulva

Posted March 6th, 2017 by Be The Match and filed in News, Patient Stories
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About 6 months after her transplant in 2014, Lola felt burning and discomfort near her vagina. She went to the doctor many times and over the course of 18 months she had treatment for a urethra blockage and low hormones from menopause. Finally, her doctors determined the cause was graft-versus-host disease (GVHD) of the vagina and vulva.

Symptoms of GVHD of the vagina and vulva

Chronic GVHD of the vulva and vagina happens when the donor cells attack these tissues. The vulva is the outer part of the vagina (birth canal). According to Pamela Stratton, MD from the National Institutes of Health, it’s important to notice changes in your genitals and tell your transplant team or gynecologist about those changes. “If you know it could happen and start feeling the burning sensation, then you might go to the gynecologist and get treatment,” says Lola.

Some of the common symptoms for vulvar and vaginal GVHD include:

  • Dryness
  • Pain with urination, while at rest or during vaginal sex
  • Redness or open sores in the vulva or vagina

Diagnosing GVHD of the vulva and vagina

"What is GVHD?" video from our Basics of Transplant series

“What is GVHD?” video from our Basics of Blood and Marrow Transplant series

“Chronic GVHD of the vulva is very common. It affects about 1 in 4 women after transplant. Vaginal chronic GVHD is less common. Since the vulva and vagina are different parts of your anatomy, treating one area of chronic GVHD doesn’t prevent or lower your risk of getting chronic GVHD in the other area,” Dr. Pamela Stratton says.

It’s important to diagnose chronic GVHD of the vulva and vagina early because early treatment can ease your symptoms faster. It also lowers the chances of it becoming a more serious problem. Doctors diagnose it with a gynecological exam. “They may take cultures and a tissue sample to diagnose chronic GVHD and rule out an infection or other problem,” says Dr. Stratton. For Lola, she felt relieved when she got the diagnosis. She no longer felt alone, but was encouraged to know what it was and learn how she could deal with it.

Management and treatment

Soon after Lola’s diagnosis, she started treatment with a topical steroid. Dilators or vaginal sex can also help keep the vagina from narrowing or closing. Currently, there is no known way to lower your risk of getting chronic GVHD of the vulva or vagina.

Each woman has different symptoms at different times, so it’s important for the gynecologist and transplant team to work together to offer the best treatment. “Treating specific genital GVHD changes is an important first step. Women also benefit from a multidisciplinary team approach to their reproductive health with members of the team including gynecology, urology, and sexual therapy specialists, as well as pharmacists. This team can help address effects associated with chronic GVHD including depression, stress, and menopausal changes,” Dr. Stratton says. Lola agrees, “It can cause depression. Talk to your health care team. You’re not complaining, but people don’t know you’re having a problem unless you tell them.”

Your quality of life is important, and that includes your sexual relationships. Lola encourages other women going through this to not be shy. “Modesty is difficult for a lot of people to overcome. So stand in front of a mirror and say the words ‘vagina’ and ‘vulva’ a lot until it becomes normal. Your vagina is a part of your anatomy like your elbow except it’s not out in public. And all women have one.” Talk openly with your health care team and sexual partner about how you feel. This is important for your health, your quality of life and your recovery.

For more information

  • Contact the Be The Match Patient Support Center. Receive free counseling support from a licensed BMT social worker to help you and your family cope with GVHD. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.
  • Download Fast Facts: Chronic GVHD of the Vulva and Vagina. The fact sheet offers information on how to ease symptoms, how it can be treated, and when to call your doctor. It was developed by Be The Match and the Chronic Graft-versus-Host Disease Consortium.

GVHD of the eyes: A patient’s experience, a doctor’s perspective

Posted November 1st, 2013 by Be The Match and filed in Patient Stories
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jennifer with captionIf you’ve noticed changes or are having trouble with your eyes, it could be caused by graft-versus-host-disease (GVHD), chemotherapy, or radiation to the head, all of which can affect tear production or interfere with the balance of oils and moisture that keeps eyes healthy and comfortable. Learn the warning signs of GVHD of the eyes, how one patient was successfully treated, and why she’s glad she didn’t ignore her symptoms.

Jennifer’s first symptoms
Transplant recipient Jennifer first experienced trouble with her eyes in 2000, about a year and a half after her transplant for severe aplastic anemia. “It started with feeling like I had dry eyes, so I just used artificial tears,” said Jennifer. “But over time, my eyes became more uncomfortable. It reached a point where I could not produce any tears and my eyes were bone dry.”

Know what to look for to start treatment early
“Approximately 60–80 percent of patients with chronic GVHD experience some problems with their eyes,” said transplant physician Stephanie Lee, M.D., MPH, of Fred Hutchinson Cancer Research Center. “Recognizing the symptoms is important to early treatment.”

Some of the more common symptoms of GVHD of the eyes include:
Dry, irritated eyes
Feeling gritty or painful
Tired eyes
Light sensitivity
Red eyes
Discharge
Difficulty opening
Itching
Burning
Blurred vision

Tell your doctor about changes
Be sure to discuss your eyes during follow-up exams. Early evaluation, diagnosis, and treatment are important to controlling symptoms and preventing permanent damage. “Let your transplant doctor know right away if you have problems with your eyes,” said Dr. Lee. “Your physician will examine your eyes to determine the cause and eliminate other possibilities, like infection.”

Explore different treatment options
Dry, irritated eyes are most often treated with eye drops. Many formulas are available, so you may need to try several to find what works best for you. “If you have trouble managing symptoms, or experience a change in your condition, ask your doctor about other treatment options,” said Dr. Lee. “For example, you might be prescribed eyes drops that contain medicine to weaken your new donor immune system (immunosuppressants), or be prescribed special contact lenses. Depending on your situation, you may be referred to an ophthalmologist with expertise in treating GVHD of the eyes.”

Jennifer’s treatment decision
For people with moderate to severe dry eyes, blocking tear drainage is another option. Each eye has two little openings called puncta that drain tears into the tear ducts. Partial or complete blockage using plugs or cauterization can block drainage of tears into the nose, making more tears available to the eyes.

“I had punctal plugs put in my lower tear ducts,” said Jennifer, “and after still having issues we did the upper ones, too. I went through several plugs and continued to use artificial tears. I also took fish oil to help with tear production. But I still felt like I constantly had something in my eye. It got to a point where it became unbearable. I wanted to constantly rub my eyes.”

Jennifer was on the verge of developing an ulcer that could ultimately lead to loss of vision.  She and her doctor decided to cauterize her lower tear ducts. “When I continued to have discomfort, we went ahead and did the upper ducts, too.  My only regret is that I didn’t do it sooner. I could have avoided a lot of pain. Since then I have felt much better. I can actually cry tears for the first time in years!”

Advice to patients experiencing GVHD of the eyes
Jennifer advises patients to pay attention to their eyes and not neglect them. “You can become desensitized to the pain until you’re almost numb to it. You might think your eyes are okay, but they could be worse than you think. And it’s not just the sensation; it can also affect your vision. I never needed glasses before my transplant, but now I wear them all the time and can’t really see anything far away.”

Jennifer also recommends using artificial tears religiously and talking to your doctor about taking fish oil to help with tear production. She says if you’re not getting relief, ask about what other treatments or accommodations are available. “Because of my light sensitivity, I was able to get a prescription for tinted car windows that were actually darker than would normally be allowed,” she said.

Dr. Lee tells transplant patients, “Be proactive about your care. If you’re not satisfied with the answers you receive, get a second opinion. Being a good self-advocate and taking action early can help prevent serious, permanent damage to your eyes, and speed recovery.”

Take action, learn more
Contact your doctor about any problems or changes with your eyes

  • Visit our Facebook group to share your experience and learn from others.

Experts and patients give their advice to help you manage GVHD of the gut symptoms

Posted August 13th, 2013 by Be The Match and filed in News, Patient Stories
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Dr Navneet for blogIf you have trouble eating or digesting due to Graft-versus-host disease (GVHD) of the gut, there are simple steps you can take to improve your recovery and help you feel better.

Start by recognizing the symptoms

“For patients with acute GVHD, about half will also have GVHD of the gut,” says Dr. Navneet Majhail, Medical Director of NMDP/ Be The Match and Director of the Bone Marrow Transplant Program at Cleveland Clinic. “Symptoms can include nausea, vomiting, diarrhea, weight loss and abdominal pain. It’s important  to report any of these to your doctor right away. The sooner symptoms are identified, the sooner treatment can begin.”

Tips for managing nausea, and getting the nutrition you need

  1. Talk to your doctor about medications to control symptoms. “For example, if the thought or smell of food makes you sick, taking an anti-nausea medication 30 minutes before eating can help,” says Dr. Majhail. There are also drugs to help control the graft-versus-gut reaction.
  2. Take calorie supplements like Boost® and Ensure® to make sure you get the nutrition and calories your body needs. “Many patients find they tolerate these supplements best if taken cold throughout the day,” says Dr. Majhail.
  3. Eat small portions throughout the day. A healthy variety of foods, taken in small, but frequent meals can help you identify what foods you tolerate best. “While no particular diet is recommended for gut GVHD, spicy foods should be avoided,” says Dr. Majhail. “Some patients also find that dairy products can cause bloating or worsening of symptoms.”

Dr. Majhail also advises people dealing with GVHD of the gut to be patient. “Treatment for acute GVHD of the gut can take 6 to 8 weeks; chronic GVHD can take a year or longer. It can be frustrating, but it’s important to work closely with your doctor to determine the cause of the problem, what’s working, and when you need to adjust treatments. Together, we will find the solution to help you get better.”

Looking for more tips and advice? Read Dr. Majhail’s full interview.

Other patients share their tips for managing symptoms on Facebook Patients Connect

It’s been 13 months  since my transplant and I’m just now able to eat regular food, except still no fresh fruits and veggies.

I  eat rice, baked  potatoes, shredded chicken, and toast.  Low-fat and low-fiber food makes it easy to digest stuff. No dairy. Still dealing.

Working with a nutritionist is making a huge difference  for me. I  also avoid anything  processed. Low sugar, no gluten, corn, or dairy right now. My gut is healing so much better.  It’s truly fabulous.

NOTE: The patient comments above illustrate a wide range of individual experiences. They are not intended as medical advice. Always talk to your doctor before changing your diet or taking any non­ prescription medications or supplements, as they could cause negative interactions or side effects.

To join the discussion and share your own experiences and insights, visit Facebook Patients Connect.