Constructive Tips and Desires from Patients to Providers

I asked around and got qualitative answers from 15 people. These are just as important as quantitative. The majority of the themes surrounded more interdisciplinary work, more collaboration, and tracking of symptoms and issues. These quotes are from patients who have been down the road many times and back.

 

We are the patients with multiple conditions and symptoms (10+) such as Ehlers-Danlos syndrome, dysautonomia, hard flaccid, endometriosis, adenomyosis, pelvic congestion syndrome, interstitial cystitis, vestibulodynia, vulvodynia, pudendal neuralgia, persistent genital arousal disorder (PGAD), lichen sclerosis, hip dysplasia, femoracetabular impingement, labral tears, sacroiliac joint dysfunction, spine disorders, hernias, and pelvic floor dysfunction, and more. We are often seeing over 20+ to get answers and quite frequently leaving an appointment empty-handed even after taking time off work, paying out of pocket, and traveling to the appointment. Transporting to the appointment in chronic pain is also a challenge.  

 

This is what we are good at at this stage in our medical journey: 

• Reading the available medical literature

• Analyzing and critically evaluating the data and clinical evidence

• Reading up on our symptoms

• Assessing our bodies daily

• Talking to other patients

• Keeping track of our medical history

 

We are far from your standard patient who just visits the PCP once a year (Not saying that's bad, we'd love to be that way).

  

While we know that you are slammed, busy, and overworked, and that the time limits often don’t allow you to be the best that you can possibly be sometimes, but here are some requests from multiple symptom patients:

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• More Communication Among Other Disciplines:

  • "More interdisciplinary work among all providers (orthopedists, gynecology, neurology, genetics  rheumatology, immunology).

  • Please listen to what our other specialists have said. If you can't believe us, communicate with them. We should not be needing to convince doctors of what our other doctors have diagnosed or excluded.”

• Pelvic Floor Physical Therapy

  • "Please make more referrals to all kinds of providers, not just psychology or more physiatrists."

  • "Please admit when you cannot treat a patient. Continuing to treat us without knowing what you are doing is dangerous to our physical and mental well-being. Please be honest with us."

  • “Less handing the baton to physical therapy - Stronger communication between physical therapists and providers needs to occur. You can’t expect us to go to physical therapy when you have no idea how to treat us if there is no diagnosis.”

  • "Why are the treatments for vulvodynia, vestibulodynia, vaginismus, interstitial cystitis, hard flaccid, endometriosis, PGAD, and pudendal neuralgia almost exactly the same with some discrepancies here and there? Same types of treatments (skin rolling, myofascial release, stretches, relaxing the surrounding muscles, dry needling, dilating, and diaphragmatic breathing). They are completely different separate conditions. Treating them exactly the same is like treating apples and oranges the same."

  • "Please narrow your scope of the conditions you treat. If you are only skilled with postpartum issues or urinary incontinence then say so upfront."

  • "Most still cannot assess orthopedic issues correctly. It's a completely different regimen from a hip specialist or a spine specialist. Stop saying you can treat the whole body."

  • "Unless all imaging and tests are clear and have been completed, please do not say the conditions are due to the overactive nervous system."

  • "Please actually be informed and educated on the conditions you list on your websites. We are not your experiment."

  • "Make sure to list your qualifications and certification for each condition."

• Cognitive Therapy 

  • “If you are going to propose that mental health is the cause of debilitating physical symptoms, please refer us to an appropriate mental health professional. Simply blaming everything on mental health, while doing nothing to improve mental health, is improper care.”

  • “Cognitive therapists believe that our pain is real and not psychological, which is contradictive to what you all say in the clinic. Please stop assuming everything is mental.”

• Lack of Knowledge and Education

  • “Please read the literature. It takes as little as 5-10 minutes to skim a paper. Stay up to date with the most recent literature. Having to educate a provider in x condition is just disappointing and disheartening when we are already paying for the appointment.”

  • “Please make more admittance if you don’t know the answer – We won’t judge you. Please do not pretend to know the answer. We will respect you for not knowing and admitting this. You don’t have to know everything as it’s impossible for a single person to know everything.”

  • “Please don't focus entirely on 'function'. People with chronic pain often continue to go to work or school while suffering.”

• More Symptom Tracking

  • “More brainstorming and critical thinking on what other possibilities the issues could be. Don’t just send us away with no answers and send us to PT with no resolution.

  • "Help us keep track & prioritize symptom investigations. To essentially create a plan that can be re-assessed as new symptoms arise. Symptoms can get lost in the shuffle if we’re dealing with them one at a time.”

  • “More follow-ups for symptom tracking”

  • “Less narrowing into the most obvious thing that comes to mind.”

  • "Being given treatment options plural…this is not a one size fits all or most situation. Deciding what step is taken next is not the doctor’s job, it’s the patient's. The doctor’s job is to educate! They should give all differentials, diagnostic, and treatment options to their patients. As well as the pros and cons of each. So that the patient is empowered to make an informed decision in regards to their healthcare.”

  • "I don’t want to be dropped as a patient just because my blood work was good."

  • "Provide me a follow up assure me the answer can be found and tell me where you recommend me try next. I want doctors that will do some research to help me. For example. My mom had a dentist friend when she was having weird sharp pain in her cheeks/jaw/face. Dentists told her she was fine after X-rays and everything. She got a second opinion from her dentist friend and he couldn’t find anything either, was stumped. Then, and probably because they were friends, he did a bunch of research to figure out what could be causing her pain. Because he believed her. He ended up figuring out she had a nerve damage issue and sent her to a neurologist. Can we just stop over working doctors so they can put that kind of care into patients?"

• Assumptions

  • “Please don't focus entirely on 'function'. People with chronic pain often continue to go to work or school while suffering.”

  • “Do not make assumptions about our health history without reading our medical chart fully. Please consider the quality of life alongside disease activity. Simply stopping someone's period is not adequate care if their symptoms remain unchanged.”

  • "Please don't assume that we aren't doing our exercises or not trying. If the PT is not working, it's not working."

  • “Do not dismiss someone for not having the typical presentation of a disease.”

  • “As we have multiple issues, we are probably more health literate than your average patient. The way the current system is, we had to advocate very hard to get where we are now. Please do not assume we won’t understand you. Send us home with all the research.”

• Treatments (Exams, Pain management, Imaging)

  • "Slower physical exams on all body parts. This can trigger PTSD for some patients, which makes it hard to pinpoint pain if you're already moving onto the next body part before the patient can even register there is pain."

  • "Provide better pain management or more alternatives to pain: Ibuprofen and Tylenol are not manageable, yet opioids are too strong. Why isn’t there anything in the middle yet?”

  • “Please communicate clearly about contraindications and interactions between medications.”

  • Why do we not have a cure for endometriosis yet? It is 2023. 

• Imaging

  • “Please be willing to provide testing/imaging for an accurate reading.”

  • “We would like for the ability to work more hand in hand with radiologists. A lot goes into accuracy from machine, operator use, and instructions from a physician, the accuracy of radiologist reading it.”

  • “Nothing is worse to find out that our imaging was erroneously interpreted.”

 

Sincerely,

Good people who want change

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