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Sealed Lips is Mashable’s series on pelvic pain, an experience rarely discussed but shockingly common.
If you've ever experienced pain during sex — or when inserting a tampon or just putting on pants — you're not alone. You may be experiencing pelvic pain.
Pelvic pain is a broad term, almost obnoxiously so. By definition, it is pain below the navel without an identifiable cause for over six months, according to experts such as Dr. Sonia Bahlani, pelvic pain specialist and OB/GYN. Bahlani said the time aspect of the diagnosis is debatable, however, because in her view a patient shouldn't have to suffer for months in order to receive treatment. (Full disclosure, Bahlani treated me for my own pelvic pain.)
Experiencing pain in such a sensitive area can be deeply frustrating, but what can be even more vexing is getting appropriate care for it. In the United States, doctors can be especially dismissive of women's pain, especially that of Black women and other women of color. Having professionals shrug off suffering is hurtful no matter where it occurs; when it's the most intimate area of your body, it can be especially devastating.
I know what pelvic pain and treatment are like firsthand — and I know how difficult it can be to find resources. While this is not medical advice, the below is expert insight into pelvic pain and the ways that you can get help:
How do I know I have pelvic pain?
While Bahlani isn't a huge fan of the term herself, some clinicians say that pelvic pain is a "diagnosis of exclusion." This means there's not another diagnosable problem from which the pain stems such as an STI, bacterial vaginosis, or another condition.
If you're experiencing pelvic pain, the best place to start is to get cleared of any such issues by a gynecologist or a urogynecologist (a doctor that specializes in both gynecology and urology), said Dr. Amanda Olson. Olson is also president and CCO of Intimate Rose, which provides tools such as dilators designed to help relieve some types of pelvic pain.
What if my doctor can't find anything wrong?
If you receive a diagnosis, such as an STI, your focus will probably shift to treating that. But your tests could all come back normal and your doctor could say "everything looks fine" — even if you don't feel fine.
First off: Know your pain is real. Studies show that up to 32 percent of women can experience chronic pelvic pain, but both Bahlani and urogynecologist Dr. Betsy Greenleaf agree that the stats aren't giving the full picture because pelvic pain is underreported.
"Most would argue that at least over 50 percent of the population have experienced some sort of pelvic pain at some point in their lives, whether that's resolved or not," said Bahlani.
First off: Know your pain is real.
What's more is that anyone, no matter their anatomy, can experience pelvic pain; it can be felt vaginally or rectally. Ten percent of men say they experience pelvic pain yet "these statistics are grossly underreported, especially in men," said Greenleaf.
Underreporting happens for multiple reasons. One is that people don't seek care for pain like this, which has a myriad of causes, including financial concerns. Further, these studies of women and men only include cis patients, leaving out the non-binary and trans population.
Pelvic pain, like other chronic pain, can also come and go, Bahlani pointed out. It can flare up and then settle down, so people may not seek care in the hopes that it'll disappear.
To be clear, if your doctor cannot land on a definitive medical diagnosis, that does not mean your condition isn't real or that you shouldn't seek out ways to alleviate the pain.
How do you know when to seek help for pelvic pain?
One factor that can deter people from seeking care is the mistaken belief that pelvic pain is "normal," something to just get used to. That's the biggest misconception pelvic health physical therapist Sara Reardon sees. Reardon, owner of NOLA Pelvic Health and founder of The Vagina Whisperer, an online resource for pelvic health education, says people think they're just supposed to "deal" with the pain.
"My rule of thumb is if you feel like pain is interfering with some aspect of your life, whether it's your mental health or sexual health or your exercise or just wearing pants," said Reardon, "then that is a problem that needs attention."
Reardon, however, knows the pitfalls of the healthcare system and how it impacts care. "You have to be an advocate for your own health," she said. That can mean more than just going to your primary care doctor or gynecologist — it can mean asking for a referral to a physical therapist and researching specialized providers who are educated in treating pelvic pain.
There no one-stop shop for pelvic pain treatment
Our current system isn't set up with clearcut protocols for seeking pelvic care — which can lead to going deep down Google rabbit holes. While it's less than ideal to try to self-diagnose online, social media and the internet are important sources of information, Bahlani said. She warns, however, that those researching should be aware of the sources. "Oftentimes, you can see well-meaning Reddit groups and blog groups and support groups that have people who are trying to put information out there, but it's not necessarily evidence-based," she said. "It's more patient stories of what worked for them and what didn't work."
We're all individuals, and what relieved someone else's pelvic pain may not relieve yours. This is why seeking out quality care is essential, but even some doctors may not be well-versed in this subject or know to take it seriously even absent a diagnosis of a specific condition. It's just not taught in general residency, Bahlani said. She herself had to undergo a fellowship to be efficiently trained.
"The most well-intentioned, well-meaning doctors without the background [of pelvic health] can often lead to misdiagnosis, underdiagnosis," said Bahlani, which can lead to "punting" the patient around from doctor to doctor.
Mis- or under-diagnosis can lead to a cycle of pain: One may wonder if their pain is real and feel frustrated that medical professionals don't know what's up.
"Once a patient has the courage to bring up a problem and then it feels dismissed — it shuts them down," said Reardon. "It's an unfortunate situation because then the problem's not resolved."
How to find a pelvic health specialist or pelvic floor physical therapist
Pain can be a symptom of another condition, such as endometriosis, or it may have no obvious cause. After you've been cleared of other conditions by a (uro)gynecologist, the next step is to find or receive a referral a doctor who specializes in pelvic pain, or receive a referral to a physical therapist who treats pelvic floor issues. Sometimes, one leads to another.
To use myself as an example, I met with Dr. Bahlani, who then prescribed physical therapy as part of my treatment. A physical therapist may also recommend a specialist physician to you, as well.
Know what to look for when searching online for a doctor or physical therapist in your area. Check their bios for education and experience with treating pelvic pain. A specialist should've received additional pelvic floor training, like the fellowship that Bahlani completed. A pelvic floor physical therapist should've completed training on the pelvic floor, as well.
Seeing a pelvic health specialist helps you "peel the onion," as Bahlani and Olson put it, to finding the cause — or causes — of your pain. This is critical in making a treatment plan. More often than not, in Bahlani's experience, pelvic pain is multifactorial. Patients often leave — as I did — with more than one diagnosis. There's a myriad of conditions that your PCP or OBGYN may not be versed in such as pelvic floor dysfunction or vestibulodynia, pain in the area around the vaginal opening.
"We try to identify [the causes] because it alters the trajectory of our treatment strategies," Bahlani said. The treatment for pelvic floor dysfunction, for example, is different from the treatment for vestibulodynia.
"We can absolutely elucidate the different factors that play a role in pelvic pain, and that's important to guide our therapy," said Bahlani. But should we focus on why it happened? "No," she said, "because the answer to that is often unknown."
Correlation isn't causation. If you've had a history of, say, horseback riding and now you're going through pelvic pain — it's quite possible that the riding played a factor, but you'll never know for sure and it doesn't matter now. What matters is the pain you're experiencing currently and the treatment that can help.
I had a C-section — why do I have pelvic pain?
Pregnancy and childbirth, of course, can cause a variety of issues that lead to pelvic pain. One common misperception that Kim Vopni, a pelvic health coach known as the Vagina Coach, sees in her work is that people believe that if they won't experience pelvic pain if they haven't given birth, or if they give birth via Cesarean section.
Changes during pregnancy affect the pelvic floor, Vopni and Reardon explained. Any type of abdominal surgery, particularly Cesarean sections, can also affect the pelvic floor. So it's not at all uncommon for people to experience pelvic pain after a C-section.
It's important to remember, though, that anyone can experience pelvic pain at any stage of life — regardless of whether they've ever been pregnant or given birth.
How do I treat pelvic pain?
As with pain itself, the treatment is individualized for you; it's why you can't trust Reddit or other forums to have the solution. The good news is there's a variety of potential treatments, from physical therapy to tools like Intimate Rose to procedures done in a doctor's office.
Bahlani's philosophy is to give patients the tools to treat themselves because pelvic pain can come and go. She said, "You want to be the master of your own body when it comes to this."
A physical therapist or a specialist will help guide you through treatment. Thanks to the broken U.S. healthcare system, however, many treatments — and often visits with specialists themselves — aren't covered by insurance.
"You want to be the master of your own body."
"Insurances don't acknowledge [pelvic pain] as a thing," Bahlani explained. "They say, 'It's just pain.'" This, she continued, leaves patients with unanswered questions and unmet needs from in-network providers.
If in-network professionals aren't giving you the care you need or the cost is prohibitive, there are resources online to expand your knowledge of pelvic pain and treatment. While there is no substitute for qualified medical care, you can at least learn more about pelvic health and tactics that may help alleviate your pain.
One good resource is Pelvic Gym, which provides educational and exercise tutorial programs made by professionals — including Olson of Intimate Rose. There are videos and collections of videos, called programs, that address pain as well as a range of topics like sexual wellbeing and pregnancy. The platform was created by the team at Ohnut, a wearable to help with pain during deep penetration.
The pelvic health experts interviewed here are all also on Instagram: Greenleaf @drbetsygreenleaf_, Bahlani @pelvicpaindoc; Olson @intimaterose; Reardon @the.vagina.whisperer; and Vopni @vaginacoach.
Again, these accounts and programs don't replace seeing a medical professional — even if they're run by professionals — but they can provide education and the reassurance that there is help out there.
Pelvic pain can be agonizing, but dealing with it shouldn't be. Know that you don't need to go through it alone, and that you can have relief.