By Emily Schwerdtfeger, PHRC Westlake Village Admin Assistant
A patient submitted this letter following their personal experience with patient care
An open letter to any doctor who’s ever seen a patient. To patients who have experienced something similar, I’m sorry and you didn’t deserve it.
“I understand that doctors have limited time with patients and that medicine is a practice and not a ‘perfect.’ (Endofound.org)
As an empath, a student, and a patient, I understand this too. However, having limited time does not mean that bedside manners should be thrown out the window.
Picture this: you go into an appointment for an ultrasound, as you’ve been experiencing severe menstrual cramps on and off for the past three weeks. You report having severe nausea, more pain on the left side of your body, and you recount to the doctor that you believe you had a cyst burst. You’re already emotional, you don’t feel like they’re going to find anything, and you have had to psych yourself up to even come into the appointment, knowing that chronic pain patients typically get dismissed.
Your partner reassures you that they will find something and you’ll finally get answers for everything that you’ve been going through. Your doctor starts by questioning why you stop taking your birth control. You explain the pain that you’ve been having with sex, knowing that birth control can cause pain with sex (among other negative side effects). You think you catch her rolling her eyes, but you chalk that up to your anxiety.
Then you go on to the severity of your cramps and nausea, hoping she will provide you with some answers. You explain your family history of endometriosis and how your mother has had numerous gigantic ovarian cysts that had to be removed multiple times. She informs you that cysts aren’t genetic so you don’t have to worry about that. She doesn’t validate the pain you’ve been experiencing, if anything she tells you that what you’re going through couldn’t possibly be caused genetically and that your thought process was wrong.
You recall your incident where you believe a cyst burst. It was four a.m., you kept waking up throughout the night with nausea and hip pain. Normally you massage the pain points, as the pressure tends to help. But this time as soon as you put pressure on it, you’re immediately sick to your stomach. It drops you to your knees, you can’t stop crying because the pain is that bad. Your partner gets out of bed to console you, grabs the heating pad and does what they can to help. You don’t go to the emergency room, you know your insurance won’t cover it, and you’re not even sure the doctors would believe you in the first place.
So you tell your doctor this, you explain your reasoning for not going to the emergency room. Even though this was some of the worst pain you’ve ever experienced in your life. She tells you that even if you had gone to the doctor, it wouldn’t have done much for you anyways. She says that cyst bursts all the time, and that you need to pain manage. She offers to write you a prescription for Motrin. Then the internal exam begins.
She doesn’t tell you when she’s going to begin, she inserts the speculum without warning, cranks it open, and asks her nurse to hand her a Q-tip. What’s the Q-tip for? You don’t find out, she didn’t explain what she was using it for but you feel the slight discomfort of the Q-tip touching you internally. She then quickly removes the speculum with no warning. She tells you you’ll feel pressure, but doesn’t explain where as she inserts a digit and does an internal exam. She’s applying aggressive pressure to your uterus while conducting this exam. You’re squirming, telling her it hurts and it’s painful. She says everything looks fine.
She quickly removes her fingers, no warning. Then she pulls over the internal ultrasound machine. For those of you who don’t know, this is a large machine (insert picture). You think she’s getting it ready, and that she’ll let you know when she’s about to start but you’re wrong again. Suddenly you feel her inserting this ultrasound machine. She starts moving around, telling you that everything looks fine. As you’re squirming, jumping up a bit and letting her know that it’s uncomfortable, she asks you where you feel the most pain. You mentioned the left side and then feel her yank the machine to that side to get a view of you internally. You tell her that it hurts again. She tells you that everything looks fine and that there’s no cysts, no fluid. So even if a cyst burst, there’s no sign of it. She questions why you didn’t go to the doctor right away, even though you explained before, and that with booking an appointment, it’s hard to get anything close, and that this appointment was a lucky one. The only reason you got it was because the person making appointments over the phone heard your pain when you were explaining to them what you were going through. Your original appointment was for two months out from then.
Then she tells you you have a cyst on your right side, but this is normal. I didn’t realize that our eggs dropping each month were in fact cysts. But she says it shouldn’t cause you much pain, despite it being the size of a walnut. She removes the device, again, no warning. So you’re sitting there still with your legs up in the stirrups. Your partner is sitting on the other side of the room. She begins to go over what you can do, which is nothing. As she’s talking for a few minutes, you feel uncomfortable, she didn’t tell you she was going to perform any more exams. Why are my legs still up in the air with her directly in front of my naked body? You sit up a little bit, feeling uncomfortable, so you cover yourself. She’s still talking, seemingly didn’t see how uncomfortable you were with that. She tells you she will write you a prescription for Motrin, again, and to go to the emergency room next time you feel this pain happen again. Despite your explanation of why you got off your birth control, she tells you that’s an option to go back on and if I change my mind about it to give her a call.
She asked if I’m okay with this. I tell her no, “you just told me there’s nothing I can do about it, right?” She says yes, just pain management. Then she leaves with the nurse telling you that you are done there with an appointment.
Feeling meek, you get up and get dressed. You’re at a loss for words and on the verge of crying. Your partner wraps you in their arms, and validates you for the first time since you stepped into that room, and says at least we know what it could have been. He apologizes for the nurse, and tells you that it’s not right the way the appointment just went down. You fight the tears and get ready to walk out of the room. You look around the halls, wondering where the nurse or the doctor went, as you thought you were getting a prescription. There’s no one around, you leave without getting this prescription.
You think that is over. Now it couldn’t get worse. You spend the rest of the day in tears as your cramps are worse than they were before your appointment and your nausea has been exacerbated. The pressure she put on your stomach during the internal exam made your symptoms worse. Trying to put this nightmare behind you, you relay your experience to your other providers.
I am so thankful for Pelvic Health and Rehab Center. After this appointment I went to see my pelvic floor physical therapist, as I do weekly. I described what happened, almost in tears again, while they listened. Their approach is trauma-informed and they genuinely care about their patients. Before any internal exam is conducted, I’m always reminded that I can stop the exam anytime if I feel uncomfortable. They warn every time before they do anything internal, even up until the moment when they let me know that they’re going to insert a digit for the exam.
I’m thankful for the Pelvic Health and Rehab Center, because they reviewed my case and the information I gave them from this gynecology appointment. They gave me more answers than that doctor could, as their combined experience allowed them to figure out what was going on. We determined my birth control was not the cause of pain with sex, but it may in fact have been helping manage these cysts from bursting. I felt confident in their answers as they validated my pain and made sure I felt okay with everything going on.
Through their suggestions, I was able to get back on my birth control, the Depo shot. Although it took a couple days for the nausea to wind down, I’m finally starting to feel myself. I’ve never been more thankful for a provider to be trauma-informed and genuine about their care for their patients.
I know doctors don’t have a lot of time to treat and see patients, but that doesn’t excuse what happened to me. I’m thankful not to have trauma, which might have made that appointment worse, but I left that facility feeling traumatized by that doctor.
So what is the answer to this? Are doctors just not being educated about what it means to be trauma-informed? Are they at the end of the shift and their common sense right now? I don’t know the answers to these questions. I hope nobody ever experiences the appointment that I did. However, I know that is impossible, as I’m not the only one.
This experience has taught me that when in doubt, go see a pelvic floor physical therapist. Not all doctors are educated the same (especially about pelvic health), which means invariably that experiences like this are going to happen to people all around the world. When needing care for your pelvic health, seek a pelvic floor physical therapist
Sincerely,
A Dismissed Patient
References
https://www.endofound.org/trauma-informed-care-should-be-the-medical-standard
FAQ
What are pelvic floor muscles?
The pelvic floor muscles are a group of muscles that run from the coccyx to the pubic bone. They are part of the core, helping to support our entire body as well as providing support for the bowel, bladder and uterus. These muscles help us maintain bowel and bladder control and are involved in sexual pleasure and orgasm. The technical name of the pelvic floor muscles is the Levator Ani muscle group. The pudendal nerve, the levator ani nerve, and branches from the S2 – S4 nerve roots innervate the pelvic floor muscles. They are under voluntary and autonomic control, which is a unique feature only they possess compared to other muscle groups.
What is pelvic floor physical therapy?
Pelvic floor physical therapy is a specialized area of physical therapy. Currently, physical therapists need advanced post-graduate education to be able to help people with pelvic floor dysfunction because pelvic floor disorders are not yet being taught in standard physical therapy curricula. The Pelvic Health and Rehabilitation Center provides extensive training for our staff because we recognize the limitations of physical therapy education in this unique area.
What happens at pelvic floor therapy?
During an evaluation for pelvic floor dysfunction the physical therapist will take a detailed history. Following the history the physical therapist will leave the room to allow the patient to change and drape themselves. The physical therapist will return to the room and using gloved hands will perform an external and internal manual assessment of the pelvic floor and girdle muscles. The physical therapist will once again leave the room and allow the patient to dress. Following the manual examination there may also be an examination of strength, motor control, and overall biomechanics and neuromuscular control. The physical therapist will then communicate the findings to the patient and together with their patient they establish an assessment, short term and long term goals and a treatment plan. Typically people with pelvic floor dysfunction are seen one time per week for one hour for varying amounts of time based on the severity and chronicity of the disease. A home exercise program will be established and the physical therapist will help coordinate other providers on the treatment team. Typically patients are seen for 3 months to a year.
What is pudendal neuralgia and how is it treated?
Pudendal Neuralgia is a clinical diagnosis that means pain in the sensory distribution of the pudendal nerve. The pudendal nerve is a mixed nerve that exits the S2 – S4 sacral nerve roots, we have a right and left pudendal nerve and each side has three main trunks: the dorsal branch, the perineal branch, and the inferior rectal branch. The branches supply sensation to the clitoris/penis, labia/scrotum, perineum, anus, the distal ⅓ of the urethra and rectum, and the vulva and vestibule. The nerve branches also control the pelvic floor muscles. The pudendal nerve follows a tortuous path through the pelvic floor and girdle, leaving it vulnerable to compression and tension injuries at various points along its path.
Pudendal Neuralgia occurs when the nerve is unable to slide, glide and move normally and as a result, people experience pain in some or all of the above-mentioned areas. Pelvic floor physical therapy plays a crucial role in identifying the mechanical impairments that are affecting the nerve. The physical therapy treatment plan is designed to restore normal neural function. Patients with pudendal neuralgia require pelvic floor physical therapy and may also benefit from medical management that includes pharmaceuticals and procedures such as pudendal nerve blocks or botox injections.
What is interstitial cystitis and how is it treated?
Interstitial Cystitis is a clinical diagnosis characterized by irritative bladder symptoms such as urinary urgency, frequency, and hesitancy in the absence of infection. Research has shown the majority of patients who meet the clinical definition have pelvic floor dysfunction and myalgia. Therefore, the American Urologic Association recommends pelvic floor physical therapy as first-line treatment for Interstitial Cystitis. Patients will benefit from pelvic floor physical therapy and may also benefit from pharmacologic management or medical procedures such as bladder instillations.
Who is the Pelvic Health and Rehabilitation Team?
The Pelvic Health and Rehabilitation Center was founded by Elizabeth Akincilar and Stephanie Prendergast in 2006, they have been treating people with pelvic floor disorders since 2001. They were trained and mentored by a medical doctor and quickly became experts in treating pelvic floor disorders. They began creating courses and sharing their knowledge around the world. They expanded to 11 locations in the United States and developed a residency style training program for their employees with ongoing weekly mentoring. The physical therapists who work at PHRC have undergone more training than the majority of pelvic floor physical therapists and as a result offer efficient and high quality care.
How many years of experience do we have?
Stephanie and Liz have 24 years of experience and help each and every team member become an expert in the field through their training and mentoring program.
Why PHRC versus anyone else?
PHRC is unique because of the specific focus on pelvic floor disorders and the leadership at our company. We are constantly lecturing, teaching, and staying ahead of the curve with our connections to medical experts and emerging experts. As a result, we are able to efficiently and effectively help our patients restore their pelvic health.
Do we treat men for pelvic floor therapy?
The Pelvic Health and Rehabilitation Center is unique in that the Cofounders have always treated people of all genders and therefore have trained the team members and staff the same way. Many pelvic floor physical therapists focus solely on people with vulvas, this is not the case here.
Do I need pelvic floor therapy forever?
The majority of people with pelvic floor dysfunction will undergo pelvic floor physical therapy for a set amount of time based on their goals. Every 6 -8 weeks goals will be re-established based on the physical improvements and remaining physical impairments. Most patients will achieve their goals in 3 – 6 months. If there are complicating medical or untreated comorbidities some patients will be in therapy longer.