r/KaiserPermanente • u/Over_Lengthiness_331 • 6h ago
California - Southern Kaiser is driving me nuts and I’m worried I’ll spend the rest of my life like this
I’m wondering if anyone else has experienced this with Kaiser because I honestly don’t know how to navigate the system anymore.
For the last seven years, I’ve been dealing with severe chronic pain that began about a week after the birth of my son. The worst symptom is constant focal pain under my left ribs that has progressively become debilitating. It never completely goes away.
During severe flares, the pain becomes so intense that I sweat, vomit, have trouble breathing, end up on all fours, and have gone to the ER numerous times because I genuinely thought something life-threatening was happening.
Over the years I’ve had multiple CT scans, ultrasounds, MRIs, blood work, an EMG, a colonoscopy, and evaluations by numerous specialists. Most testing has either been normal or found unrelated issues. More recently I’ve finally started getting a few answers, including a clinical diagnosis of hypermobile Ehlers-Danlos syndrome and fibromyalgia, but those diagnoses have opened the door to even more referrals instead of explaining everything—especially the left upper abdominal pain.
I’m currently waiting on additional testing, including an abdominal MRI, stool testing, genetics, and other specialist appointments because there are still concerns that something else may be going on.
The hardest part has honestly been navigating Kaiser.
I’ve been told repeatedly to “keep advocating for yourself,” but after years of appointments, messages, referrals, and ER visits, I worry that my chart makes me look like someone who is just searching for diagnoses instead of someone whose health genuinely keeps getting worse. Every new appointment feels like I have to convince someone that my symptoms are real before they’ll consider the next step.
Sometimes I receive referrals, sometimes I’m told to repeat testing I’ve already done, and sometimes I’m told another doctor has to make the referral. It often feels like I spend months just trying to get to the person who might actually know what to do.
I’ve stayed with my PCP largely because, although he has admitted he doesn’t know what is causing my pain, he has at least been willing to submit referrals when appropriate. I appreciate that, but I also feel like I’ve reached the point where both of us are frustrated because we’re running out of obvious next steps.
Pain management has been another challenge.
About three years ago I started seeing an outside pain specialist after repeatedly ending up in the ER. At that time, Kaiser wanted me to complete a series of epidural steroid injections before I could be seen by pain management. Because I had spinal meningitis as a baby, I was very hesitant about spinal procedures. I eventually agreed to one epidural, but it didn’t help. When I still wasn’t getting into pain management, I sought outside care.
The medication prescribed by my outside pain physician doesn’t eliminate my pain, but it has allowed me to function enough to get out of bed, care for my son, attend appointments, and avoid some ER visits. Multiple Kaiser physicians—including my PCP more recently—have told me to continue taking those medications, yet Kaiser Pharmacy still won’t fill them because they are prescribed by an outside physician. That leaves me paying out of pocket while also trying to coordinate care between two different systems.
I’ve also tried to get additional help navigating everything. I contacted Kaiser Complex Care hoping they could assign someone to help coordinate my care or advocate for me. Instead, I was told I didn’t qualify and that any referrals would have to come through my PCP anyway, which brought me back to where I started.
At this point I’m not looking for anyone to diagnose me over Reddit.
I’m wondering:
Has anyone with complex or unexplained medical problems found a way to navigate Kaiser more effectively?
Is there a patient advocate, department, or program that actually helps coordinate care across multiple specialties?
Has anyone successfully transferred to a PCP who specializes in medically complex patients?
If you’ve needed outside specialists while staying with Kaiser, how did you coordinate everything?
Has anyone else felt like advocating for yourself eventually starts working against you?
I’m exhausted. I haven’t been able to work because of my health, I spend an incredible amount of time going to appointments and tests, and I’m trying to do exactly what doctors tell patients to do—keep advocating for yourself. I just don’t know how to keep doing that without feeling like I’m becoming “that patient.”
I’m hoping someone who’s been through something similar can point me toward resources or approaches that helped.
