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When Elizabeth was 16, she had what she thought was a series of urinary tract infections (UTIs). But antibiotics never helped. After 2 years of doctor visits and treatments, Elizabeth was diagnosed with vulvodynia, a condition that causes painful burning, swelling, and irritation of the external genital area (vulva).

In this edited interview, Elizabeth, now 25 and living in Florida, describes her quest to discover what was wrong and find relief for her pain.

ACOG: When did you first realize that something was wrong?

Elizabeth: I thought I had recurring urinary tract infections, and I had no idea why they were happening. At some point, the pain never went away.

Elizabeth was diagnosed with vulvodynia after 2 years of doctor visits. Photo courtesy of Elizabeth.

ACOG: What were your symptoms?

Elizabeth: It was essentially burning pain with urination. The chief symptom of vulvodynia is typically pain with intercourse, but that wasn’t the issue for me.

ACOG: How did the symptoms affect your life and health?

Elizabeth: I was in pain all the time. It made it difficult for me to go to work or school. I was in so much pain, I couldn’t function.

ACOG: Who did you first turn to for help?

Elizabeth: We had a clinic in my hometown, and they would run urine tests. After the 12th urine test, they referred me to a urologist.

After speaking with the urologist, we did a bunch of tests, including one that tests how much liquid your bladder can hold. They also did a test to check for interstitial cystitis, a painful bladder condition that it turned out I didn’t have. Then they said they had no idea what was wrong, and I was referred to a gynecologist.

ACOG: What did the gynecologist do?

Elizabeth: The gynecologist suggested I take a seizure medication that can also help with pain conditions. That helped a lot. I wasn’t in pain, so at least I could function. She also referred me to a pelvic-floor physical therapist. I learned how to strengthen my pelvic floor with exercises, but it did nothing for my pain. Then the gynecologist referred me to a specialist at a women’s sexual-health clinic.

ACOG: Was that specialist able to help?

Elizabeth: After a physical exam, she knew almost immediately what was wrong. She said I was one of her youngest, and most severe, cases of vulvodynia. She also suspected that my hormonal birth control pills might be involved in my pain. I started taking the pill when I was 16 and almost immediately felt the symptoms.

ACOG: What treatment did you discuss?

Elizabeth: The specialist suggested that I stop taking the pill. But I didn’t do it right away. She also recommended alternating hormonal creams – estrogen and testosterone – to apply to the external genitalia. I did 6 months of the creams, but they didn’t help, so I finally stopped taking the birth control pills. (Now I use condoms instead.) The pain didn’t immediately go away, so I also tried a local anesthetic to treat the external pain, a seizure medication, and an opioid to treat the internal pain.

Birth control pills don’t cause vulvodynia, but they can make symptoms worse for some women.

ACOG: How has your condition changed over time?

 

Elizabeth: The pain has gradually lessened since I stopped taking the birth control pills. Eventually, I decided to stop seeking treatment.

ACOG: How have you found support for all of this?

Elizabeth: At first, I didn’t talk to anyone about it. I didn’t even Google it. I didn’t think my parents would have understood it. How do you explain gynecological pain to your father? It’s a gendered pain condition, it’s a stigmatized part of the body, and it’s misunderstood. It’s a perfect storm. But eventually, when it became hard to sit through my high school classes, I did talk about it with my mother.

ACOG: What changes have you made as a result of having vulvodynia?

Elizabeth: My wardrobe is totally different. I had to throw out all my pants and jeans – they were too uncomfortable to wear. I didn’t used to be a dress or skirt person, but I am now. I had to test a billion pairs of underwear to find something that’s comfortable. If I’m in a plane or car, I have to really think about how to feel OK. No fabric softener, and no perfumed soaps. Anything that smells good is totally out. The fragrance chemicals just make the pain worse.

ACOG: What has surprised you about this experience?

Elizabeth: When you’re a child, you expect that when you have an issue, you go to your health care professional, and they can solve the problem. That was the first thing that threw this up in the air for me. What do you do when your doctor doesn’t know what to do? I learned not to give up. The first person you go to might not know how to help you, but eventually, someone will.

This experience also has taught me about myself, about being strong as a person and how much I can handle. It’s ignited a passion in me to help other people, and I’m now pursuing a PhD in interpersonal health communication. I want other women with vulvodynia to know that they are not alone.

Every story matters. Share yours.

If you have a story to share about female genital pain – or any aspect of women’s health – submit your story to ACOG.

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Published: October 2020

Last reviewed: October 2020

Copyright 2020 by the American College of Obstetricians and Gynecologists. Read copyright and permissions information.

This information is designed as an educational aid to patients and sets forth current information and opinions related to women’s health. It is not intended as a statement of the standard of care, nor does it comprise all proper treatments or methods of care. It is not a substitute for a treating clinician’s independent professional judgment. Read ACOG’s complete disclaimer.