This is the first in a series about pain during sex and other sexual dysfunction. Some general issues:
- People with vulvas (PWV) are not always believed by their health care provider.
- Significantly less research and resources exist about sexual health for PWV and queer folks
- Health care providers are not necessarily sensitive to issues around gender identity.
- There’s still a very strong societal stigma around what sex is supposed to be like that impacts all of us.
In this first post, I spoke to two specialists about how to know when to get help for pain during sex and how to talk to health care professionals. Dr. Natalie Rosen is a clinical psychologist and principal investigator at the Couples and Sexual Health Laboratory at Dalhousie University. Dr. Jeffrey Albaugh is the director of sexual health at NorthShore Medical Group and the author of Reclaiming Sex and Intimacy After Prostate Cancer.
Update: Rebellious columnist Nicole Guappone spoke to a pelvic physical therapist Heather Edwards about pelvic physical therapy for transgender and non binary folks and how the field is expanding to better serve this population. Part of the interview has been added to this piece.
Edwards is a course instructor for Pelvic Guru, a website dedicated to providing awareness and information about pelvic health and improving access to skilled healthcare providers, education, and online resources. One of Pelvic Guru’s newest courses is a Pelvic PT Clinical Skills Boot Camp with Transgender Specialty Focus. Edwards teaches the course along with Pelvic Guru founder, Tracy Sher.
Jera: What are indicators that something is going on that you need external help to resolve?
Natalie Rosen, PhD: The key thing is when pain is chronic. There’s a difference between not being lubricated, like when there’s not enough lubrication and so it feels … uncomfortable and painful, and when there is definitely sufficient lubrication, and you’re using water-based lubricant and there’s really a persistent pain which is most commonly described as a burning or stinging sensation. The other thing that is a marker that there’s something going on is that the pain might not only be during sex. So often the [PWV] I see will report that they can’t use a tampon because it’s painful or they have pain during the gynecological exam or sometimes when they’re riding a bicycle because of the pressure. Those are real indicators that it’s actually a genital pain, not necessarily a sex thing.
Although typically the [PWV] report that that’s the thing that’s most distressing and the real interference in their life and in their relationships. They don’t care if they don’t use a tampon, but the fact that they have pain during sex really impacts their life. But the pain is about the location of the pain, not about the sexual activity. So persistence and generalization to other types of experiences are indicators.
Jeffrey Albaugh, PhD: If [people with penises (PWP)] have difficulty getting or keeping erections, if they notice the penis is indenting or curving with erections, or if they notice anything unusual … such as an unusual discharge or lesions or bumps or lump occur on the penis or in the scrotum or on the testicles.
Jera: I know that erectile dysfunction is the most common issue for people with penises (PWP), but are there common issues that lead to pain during sex that are not often discussed?
Jeffrey Albaugh, PhD: The pain can happen due to trauma to the penis, and this can occur during sex if the penis bends unnaturally, causing corporal trauma with swelling, bruising, pain and/or scarring. In addition, a [person] could be more susceptible to this if the penis is not fully erect during intercourse, causing it to bend more easily in an unnatural way along the shaft from the base to the glans.
Nicole: Are trans and nonbinary patients being included in the wider conversation surrounding pelvic pain?
Heather Edwards, PT: The wider conversation seems to be tip-toeing in the direction of trans pelvic health by way of transgender women who have had gender affirmation surgery and need help with healing of their neovaginas. The percentage of the trans population that has bottom surgery (genital changes) is estimated to be less than 10%. This means that we’re only starting to work with a small slice of an already small population.
Pelvic pain professionals are working on understanding what it means to be transgender, and for people who haven’t studied gender or had much of a reason to look into their own gender, the idea that gender can potentially be nonbinary (meaning neither male nor female) is still pretty new. In the larger social media pelvic health circles, the questions that seem to come up are almost always about transgender women with new vaginas. Trans women often are still binary identified. Talking to a trans woman about her neovagina is not so different than talking to a cis woman about her vagina (especially if she’s not very familiar with it—which many cis women aren’t).
As far as the wider conversation is concerned, we’re not really to the point where we’re including non-binary genders very often. Even remembering that transgender does not equal “surgical transition” is not always on the radar. So, some of the more challenging parts of working with transgender parts can be working with a man who is dysphoric about his vagina and doesn’t want to call it “vagina” but still needs help with the pain he’s having there. Or a woman who is having penile pain but really struggles to discuss this part of her body without feeling uncomfortable and judged by her health care provider. This is not to say that all trans and nonbinary people suffer from dysphoria. Many don’t. But there are certainly more layers of trust, competence, and understanding that one must understand when working with transgender patients in a more holistic manner for pelvic health. We’re working on it. That’s a big part of what we’re aiming to do with this Pelvic Guru course.
Jera: How do you talk to a healthcare provider about pelvic pain or discomfort during sex?
Natalie Rosen, PhD: One of the challenges that doctors can fall into, especially with potentially sensitive topics that they might not be comfortable bringing up themselves, is that they figure if it was really a problem, the patient would bring it up, so they don’t bring it up. But then, individuals are also nervous to bring up sensitive topics around sexuality. So we end up in a situation where no one brings it up and people suffer in silence.
I would give the same message to both providers and patients that you have to figure out some space and time for bringing it up. This might look like making sure there’s enough time in the appointment; it might mean prioritizing it at the start of an appointment so that you don’t run out of time. It might mean starting from a point of, ‘I’m having a problem in my relationship,’ and then going from the relationship into the sexual functioning. There are a lot of ways to naturally segue, but thinking about how to bring it up.
Jera: What other issues arise when seeking help?
Natalie Rosen, PhD: Oftentimes [PWV] who experience pain during sex like this, their gynecological exam looks normal. There isn’t necessarily going to be an indicator that there’s a dermatological condition or something like that. So sometimes they get a message from a doctor who might not be that knowledgeable about this kind of thing that they don’t see anything wrong. They’ll ask whether the individual has an abuse history or whether it’s all in their head—just psychological—which is very much not the case.
The example I often give is that we don’t tell people who have chronic lower back pain that it must be in their head, but oftentimes people with lower chronic low back pain have had their MRIs or CAT scans and there’s nothing physiologically identifiable that’s causing this pain, but we still know it’s very real. And it’s the same thing going on with vulvodynia. There might not be an identifiable fissure or dermatological thing going on, but it is very much a real condition where we know that there are biological as well as silent psychological factors that are contributing to the pain.
Jera: So you can seek help, but a physician might not see your problem as an actual issue.
Natalie Rosen, PhD: Well, they need to keep looking. If you’re having chronic pain during sex, you need to keep going until you find a doctor who understands and says, ‘I think this might be vulvodynia’ and who would actually be knowledgeable about it and consider it as a real condition and recommend treatments.
(For some of us, it’s not just an issue of being believed. We also want to be seen and understood. Search OutCare Health for LGBTQ+ friendly health care providers in your area.)
Nicole: Do a lot of trans and non-binary people seek treatment for pelvic pain and do you have an idea of what their experiences tend to be like, whether positive or negative?
Heather Edwards, PT: The increase in surgeons performing gender affirmation surgeries in the US is growing and more hospitals and clinics are figuring out protocols for post-surgical considerations. This is fantastic and it’s been really exciting to see these therapists reaching out in discussion groups to figure out the best standards of care to start seeing patients. However, there are several barriers to care for trans and nonbinary patients that don’t necessarily exist for cis patients.
Income is often an issue for trans and nonbinary patients as gender discrimination for work and housing is legal in many states. Access to health insurance may be an issue, inability to self-pay, and even if someone has insurance, it might not cover the care that person needs. For example, if someone is legally female, it might be hard to get coverage for pelvic pain caused by prostatitis. Likewise, a trans man might not have coverage for pelvic pain from endometriosis.
In addition to those barriers, many trans and nonbinary folks report abuse, disrespect, and even assault in medical offices. Even if the clinician is trans competent, that doesn’t mean that the front desk is, and it certainly doesn’t mean that the other folks waiting in the waiting room are. For a man with vaginal pain, sitting in a pink, flowery waiting room to discuss a vaginal problem with a provider who might not be very competent with trans health needs can be daunting or even unsafe. Most trans patients are looking to go to medical providers that they have very specifically had recommended as competent with transgender patients. This is not a particularly long list. Groups such as Campaign for Southern Equality and Transmission keep lists of trans friendly providers for those seeking resources.
Our hope with this course is to create more pelvic health providers that are competent with seeing the transgender or nonbinary patient as a whole person while understanding that there may be experiences that are unique to their gender that need to be addressed when looking at pelvic pain (or any other pelvic condition).
Jera: What are ways that PWP and their partners can address and work through the stigma around sexual dysfunction?
Jeffrey Albaugh, PhD: This is probably the real challenge because although erectile dysfunction effects 1 in 5 [PWP] in their lifetime, people don’t talk about sexual dysfunction. They can talk to their healthcare provider and seek professional help. The more we get information out into the world (like this article), the more people know that they are not alone and many people suffer with sexual dysfunction especially as people get older since many medical conditions that occur later in life such as diabetes mellitus, hypercholesterolemia, heart disease, high blood pressure and chronic back issues negatively impact sexual function. Not to mention menopause.
Jera: What are some of the recommended treatments people can expect?
Natalie Rosen, PhD: There are several well-validated treatments, one of which is a psychological approach. There is cognitive behavioral therapy, for example, which is empirically supported for the treatment of this kind of pain, because pain is very much a multi-faceted thing. We know that pain can be affected by our thoughts and our feelings, so it doesn’t invalidate the pain by treating it in terms of how we cope with and manage the pain.
Depending on the type of pain it is, some physicians prescribe using lidocaine for twelve weeks. Lidocaine is a local anesthetic ointment that works through desensitizing the nerve endings.
The third treatment is pelvic floor physiotherapy. There’s actually great evidence behind treating the public floor muscles. A lot of [PWV] who have chronic pain during sex have a dysfunction of their pelvic floor muscles that can be directly treated through physiotherapy.
For more information: Check out our entire Guide to Reclaiming Pleasurable Sex for Folks with Pelvic Pain.