He’s texting you… that wonderful new guy you’ve been seeing wants to get together again, but you’re cringing inside at the thought. It’s not because you don’t want to be with him (he’s amazing!), but rather you’re fearing the profound pain you experienced the last two times you had sex. Your heart sinks. Sadly, this is not a new issue for you — it’s actually been the buzzkill for a few past relationships. You’re just not sure what to do and you’re totally embarrassed by the whole thing.
If this scenario sounds familiar, you’re not alone. As a double-board-certified interventional pain management specialist and physiatrist who works in this field, I have seen firsthand how real lives are turned upside down as patients grapple with symptoms they’re often too shy to address. By the time they do seek help, they often face an obstacle course of misdiagnosis and run-arounds on that journey to real relief.
It’s a story I know all too well as I encounter it nearly every day. The two most common patient types I see are cases like Sarah’s and Michael’s (names changed for privacy).
Sarah, a woman in her mid-20s, came in thinking she had interstitial cystitis after experiencing recurrent urinary tract infections (UTIs) and all this pain in her pelvic, perineal region. In the nearly 10 years she suffered through these symptoms, she never felt comfortable with dating or sex, and her urination problems often made even light socializing a challenge. Sarah had also been repeatedly dismissed by gynecologists and urogynecologists when her studies came back negative, so by the time she got to me, her condition had left her feeling defeated, isolated and scared.
Michael, on the other hand, came in both embarrassed and frustrated after being diagnosed with prostatitis, an infection of the prostate. Although he had been treated for this condition, he was still experiencing constant pain in his testicles, and Michael’s urologist had pretty much discharged him after subsequent retesting failed to find any infection present in his body. Meanwhile, his symptoms continued to worsen, killing his social life and leaving him in his own head at a loss about what to do next.
Sarah and Michael are just two examples of the many patients I’ve seen who have struggled with chronic pelvic pain, each with a similar recount of the massive toll it can take on their social, dating and sex lives. I also frequently see women whose endometriosis has evolved into pelvic floor dysfunction, and men with hernias for which they have exhausted all surgical or procedural treatment options.
As anyone who has been in their shoes knows, it’s easy to feel embarrassed, alone and unheard. The very nature of your symptoms may have kept you from seeking help while you suffered silently. But the truth is, you are not alone — far from it! — and there IS help.
These are the five things I tell my patients to do right away when they’re experiencing chronic pelvic pain:
Realize that you are not alone.
According to the National Institutes of Health, one in seven women in the United States will be impacted by chronic pelvic pain at some point in their lives, and between 2-16% of men under 50 suffer from it. Behind those shocking stats is the acknowledgement that you probably already know others in your life impacted by it. And if a significant portion of the population is suffering, it also means there are specialists out there dedicated to improving these patients’ quality of life. There is hope.
Feel validated that your pain is real.
Many chronic pelvic pain sufferers have gone from doctor to doctor only to be told that their pain is all in their heads. This can be a traumatic experience, leaving patients feeling unheard and misunderstood. I’m here to validate that your pain is real. Even if there’s a psychosomatic component to it, what you’re feeling is your real experience and has its own path to treatment. You deserve to be both listened to and heard.
Rule out acute infections or other underlying conditions.
Before diving into any patient’s chronic pelvic pain treatment, I want to know is that this pain isn’t stemming from an acute infection, organ dysfunction or any other underlying condition for which a primary care doctor, gynecologist or urologist would have ordered a workup. If you’re at the place where these things have been ruled out and no other diagnoses are available, we can really work on treating your symptoms.
Be open to pelvic floor physical therapy.
Nobody thinks of their muscles “down there” requiring the help of a physical therapist, but just like any other part of the body, the pelvic floor can need tuning up, and there are specialists who do just that. I’m very picky about who I send my patients to for pelvic floor physical therapy, but the most important objective is that they form a comfortable, trusting relationship because this is the provider they will likely see on a weekly basis, working with me on the patient’s long-term goals. The process involves a full evaluation (with external and likely internal work) followed by the development of a treatment plan that includes education and at-home exercises. Like any form of physical therapy (back, neck, knee, hip, etc.), this is a long game that may not show immediate improvement. Success will require patience, dedication and learning, as well as some personal habit changes.
Understand that pelvic pain is complex and requires a team approach. By the time they see me, chronic pelvic pain patients have often undergone years of suffering and may need a lot of different treatment options requiring a comprehensive approach. Just like any other complex pain diagnoses, these patients benefit most from having a team of provider go-tos to address every aspect of this very complex issue — pain, therapy, gynecology, urology and even mental health — with everyone looped into and communicating on the treatment plan. Don’t be afraid to ask for what you need, make sure providers are communicating and hold them to task.
“I’m finally in control of my pain versus the pain controlling me” is one of the first things patients like Sarah and Michael say as their pain is validated, they have the right team in place and they’re beginning to feel relief.
As that recovery continues, the next things we’re likely to hear about are vacation plans and other put-off adventures or — better yet — the blissful smile that kind of says it all.
