The moment a medical professional revealed that they'd found the cause of 19-year-old Johnelle Mercer's chronic pain was recently caught on video:
In the viral TikTok — which has over 21 million views — a healthcare worker can be heard saying, "They found the reason for your pain that will be able to be treated." Crying, Mercer responds by saying, "They did? They really did? You're not lying to me? They found it? ... Finally — can I give her a hug?"
BuzzFeed spoke to Mercer, who said she has been dealing with painful periods ever since her first period. "My pain was always dismissed as just a difficult period," she said.
Mercer said she had been going to doctor appointments every other week for a year before this doctor was finally able to diagnose her with pelvic congestion syndrome (PCS), a condition that causes chronic pelvic pain during menstrual cycles.
As you can see in the video, Mercer felt an overwhelming sense of relief when she was finally diagnosed. "I think this video went viral because so many women can relate to their issues being dismissed in a medical setting," she said.
Mercer said now that she has been diagnosed, doctors have been able to run additional tests to help them find the best treatment options for her. "The message I have for people who are in the same situation is just not to give up; get a new doctor if yours won’t listen. I was reaching my point of giving up, and I finally got answers."
To get more information about PCS, BuzzFeed spoke to Laura Meihofer, who has 10 years of experience as a pelvic floor physical therapist.
Meihofer explained that PCS is a vascular disorder that occurs when the veins in the pelvic region, specifically those around the uterus and ovaries, enlarge, change shape, and become engorged with blood. "These changes in the veins do not allow for adequate drainage, resulting in the blood pooling. This pooling causes increased pressure, pain, and many additional issues," she said.
People who have PCS often experience pain that can be dull, aching, sharp, or dragging in the pelvis, abdomen, and/or lower back. "The pain lasts longer than six months and is often worse around menses and when standing," she said. "Pain with intercourse (dyspareunia) or pain following intercourse is another symptom of PCS."
"Additional symptoms may include a fullness feeling in the pelvis, vagina/middle canal, perineum, and/or labia/genital folds; swelling in the vaginal/middle canal, perineum, and/or labia/genital folds; varicose veins in the top, inner, or back part of the thighs, vaginal/middle canal, labia/genital folds, mons pubis/suprapubic space, and/or perineal area; bladder issues, including stress, urinary incontinence, urinary frequency, urinary urgency; and bowel issues, including constipation and/or diarrhea," she said.
About 10%–15% of referrals to gynecologists and pain clinics are PCS-related, and it is estimated that 10 million women suffer from chronic pelvic pain — 7 million of whom do not seek treatment.
Meihofer said it is very difficult to diagnose PCS because the primary complaint is pelvic pain — and pelvic pain can be caused by one or more of the body’s systems not functioning properly. "In my experience, the proper diagnosis comes when an individual has a team of specialized providers looking at their case. Pelvic congestion syndrome is often diagnosed by ruling out all of the other causes of pelvic pain. This is a very time-consuming and expensive process, which is why it is commonly missed or brushed off. It takes a lot of tenacity on the patient’s part to continue advocating for more testing until they get an accurate diagnosis and treatment."
And when it comes to treatment, the approach is different for each individual. She explained, "It often includes a combination of treatment methods to reach pelvic health. Most people will move from the most to least conservative options until they find relief. Pelvic floor therapy is the least invasive option and a great place to start!"
If you think you may be suffering from PCS, Meihofer recommends keeping a detailed log of your symptoms. "This conveys to the healthcare team that there is a persistent and unchanged pattern, regardless of their efforts," she said. "I also suggest making a one-page document for your provider outlining the dates/findings of any tests, procedures, surgeries, or treatments [you've] had. Finally, always ask your provider for the clinical reasoning behind their recommendations.
"Ask, 'Why are we doing this test?' 'What are you looking for?' 'What will this help us to determine?' 'What are the next steps after this?' If a provider is unwilling to be fully transparent and provide detailed information, ask for another provider. There are many healthcare providers out there, and as a patient, you deserve a provider dedicated to supporting your journey to pelvic health," she added.