Central Considerations for this Article:
What barriers do patients and their health care providers face in recognizing and treating vestibulodynia?
How can an untreated illness that originates in the vestibule lead to a changing set of beliefs about the image one has of oneself?
The featured guest for this Q&A is SexMed Advocate. She is a patient turned patient advocate for people with sexual pain and dysfunction. She spent years struggling to find answers before discovering that the field of sexual medicine existed and that there were doctors who specialize in treating sexual dysfunction. She has created an online presence to advocate for sexual medicine and help people find the information and experts they need. Learn about her story below.
The vestibule tissue is located between the labia minora and surrounds the openings to both the urethra and vagina. The vestibule is embryonically unique from other external structures and is more similar to the type of cells lining the urethra or bladder than it is to skin.
Vestibulodynia is the condition of chronic pain in the vestibule. It is a type of vulvodynia and is classified as a sexual dysfunction, which is defined as a condition that prevents an individual from experiencing satisfaction from sexual activity during any phase of the sexual response cycle. Only as recently as 1987 did the American gynecologist Edward Friedrich describe a group of women who experienced severe pain and discomfort in the vestibule. More recently, research efforts have identified three subtypes of vestibulodynia, which differ by cause of pain. They are hormonally mediated, neuroproliferative, and inflammatory. Hormonally mediated vestibulodynia is caused by a lack of hormone signals to the tissue, leading to tissue atrophy, thinning, and tearing; this type of vestibulodynia is linked to oral contraceptives and menopause, both of which deplete important hormone signals. Neuroproliferative vestibulodynia is characterized by an overgrowth of nerve endings in the vestibule tissue, leading to hypersensitivity and pain; this can be present from birth or caused later in life, possibly by chronic infection. In inflammatory vestibulodynia, the tissue is damaged by excessive immune response, which may be caused by chronic infection or allergy. More research is needed to understand these biological processes in more depth, to determine if there are more subtypes yet unidentified, and to develop the best treatments. Current treatments range from local creams or gels, vaginal dilators and pelvic floor muscle physiotherapy, to psychosexual counselling and sometimes even surgery.
Jen: After years of symptoms and seeing multiple physicians, you saw a sexual medicine specialist and were correctly diagnosis with vestibulodynia. When was the first time you heard of the part of the human body the “vestibule” and the diagnosis of “vestibulodynia”?
SexMed Advocate: When I was diagnosed by Dr. Rubin, my physician who is a Urologist and Sexual Medicine Specialist, was the first time I heard of the vestibule or the condition vestibulodynia, which is part of the problem. I wasn’t previously taught my own anatomy in enough detail to understand what was happening to me. Even today, many vulva anatomy diagrams do not label the vestibule. When people do not have the words to accurately describe what they are experiencing, it makes it that much harder to find answers. Dr. Rubin spends a significant amount of time on patient education to make up for what wasn’t properly taught before. Patients need to first understand anatomy before they can understand the problem. If you don’t first know “normal,” how can you recognize a problem?
Jen: You have a wonderful website about your experiences and journey to diagnosis and treatment of vestibulodynia. What is your intention for creating it?
SexMed Advocate: I created my website for two main reasons. First, I struggled to find helpful information during the many years I was searching for answers before meeting Dr. Rubin. The scientific research that has been conducted on women’s sexual pain conditions is unfortunately limited, hard to understand and analyze, and difficult to access. I’m a scientist, so once I had a diagnosis I went straight to PubMed to begin reading primary literature, but the information is not easy to find because of the many nomenclature changes throughout the years. Also, the scientific community’s understanding of vestibulodynia is so limited that there are design flaws in many of the studies, which can make them tricky to interpret today. I wanted to help people locate and understand the research that has been done, so I give many references on my informational pages and plan to highlight key studies in future blog posts.
Second, I wanted to give people a place to share their stories, which will help raise awareness for vestibulodynia and help people feel less alone when they read a story they relate to. Given the intimate nature of sexual pain, many patients do not feel comfortable with sharing their story publicly without a pseudonym, myself included. But these stories are important to share, so I wanted to help make that happen.
Jen: You share on your website how you were given messages in different settings that pain is a normal and an inevitable part of certain life experiences. Where did these messages come from? If people internalize these messages, how can this be a barrier to seeking medical attention?
SexMed Advocate: In hindsight, I can’t pinpoint where these messages were coming from; they seem near ubiquitous in our culture. For example, messages that miserable periods are “normal” instead of having an underlying pathology or that historically women’s pain was diagnosed as hysteria rooted in their minds alone. When I went to gynecologists and my pain was dismissed, I internalized the idea even more because I assumed they were the expert on the topic. The first time I had a pap smear, I was screaming, crying, and crushing the assistant’s fingers. When the doctor didn’t mention it, I assumed that must be what it’s supposed to be like – I didn’t know any better. Later, when I went to a gynecologist specifically to ask why sex was so horrifically painful that it was impossible, she essentially told me it was all in my head and it wouldn’t hurt if I would just relax. When “just relaxing” didn’t work, I struggled even more psychologically with feeling like I was broken, and my husband started to worry that he was doing something wrong or wasn’t attractive enough. Our society needs to be better at believing women in particular, especially about pain. I spent about eight months in denial and refusing to see any more doctors, because I didn’t think they would help me, and only hurt me more. With those kinds of experiences, it’s no wonder women so often give up on seeking answers.
Jen: How did the symptoms of pain during your journey to diagnosis and treatment impact different areas of your life?
SexMed Advocate: Dealing with vestibulodynia has affected so many aspects of my life. Obviously, my relationship with my husband has been harshly tested. Fortunately, we haven’t let it tear us apart, and I think we are stronger as a couple because of it. Going to therapy with a psychologist who specializes in helping women with pelvic pain and sexual pain has been extremely valuable. We have improved our communication skills and learned strategies for maintaining intimacy without intercourse (PSA: sex is so much more than intercourse!). Relationships with my friends and family have also had tension, because you never know how much to share, with whom, and how they’ll react. Often, people who have not experienced anything similar get very uncomfortable and awkward. Sexual pain can feel very lonely. I’ve connected with so many people in the private Facebook support groups, and I’m so grateful for those relationships with others who truly understand what I’m going through.
My other main struggle has been with the psychological effects. I grew up in a conservative evangelical Christian church and was taught that my value was in my sexual purity. Shame was associated with all sexual feelings from a young age. When I got married and nothing worked, that shame was reinforced, and brokenness and guilt were piled on. Today, I’m working on disconnecting intimacy from all those negative feelings. Once again, therapy is a crucial part of the process. People need a team of doctors on this journey to help from all angles.
Jen: What is the q-tip test? Why did it make a difference to getting a proper diagnosis?
SexMed Advocate: A q-tip test is an important part of the process of diagnosing vestibulodynia. With a cotton swab, the doctor gently touches individual structures of the vulva, e.g. labia and mons pubis, and all the way around the vestibule and records the pain level. There are certain locations and combinations of pain levels that are indicative of certain subtypes of vestibulodynia and aid in proper diagnosis. In my case, everywhere on the vestibule tissue felt like fire and lava, but I didn’t have pain anywhere on the surrounding tissue. My pain was localized to the vestibule and equally strong throughout, which is indicative of a nerve disorder. In combination with other important symptoms and history (e.g. pain since first attempt at penetration, no history of chronic infection, no visible inflammation, umbilical hypersensitivity), this information led to a diagnosis of congenital neuroproliferative vestibulodynia. This means that I was born with way too many nerve endings in the vestibule tissue, and that’s why the lightest touch felt like fire and lava.
Before I saw Dr. Rubin, a doctor hadn’t done a thorough exam like this, much less an actual q-tip test. In a routine annual exam, time is very limited, and it’s mostly spent on the pap smear and contraception. Once a speculum is inserted, much of vulvar anatomy is no longer visible and cannot be inspected at all. This is something that needs to change. A more thorough exam and purposeful questions about sexual experiences go a long way. In the future, we need more funding for research into women’s sexual dysfunction. As our knowledge increases, as will treatment options and efficacy, awareness, and hope for the people struggling with pain.
Dr. Rachel Rubin
Cover Photo Source: https://www.womenshealthmag.com/sex-and-love/a19960020/vulvodynia/